Sample records for advance care plan

  1. Advance Care Planning for Serious Illness

    MedlinePlus

    ADVANCE CARE PLANNING FOR SERIOUS ILLNESS Making plans for the health care you want during a serious illness is called “advance care planning.” Planning involves learning about your illness, understanding choices ...

  2. Advance care planning in a community setting.

    PubMed

    Connolly, Josaleen; Milligan, Stuart; Stevens, Elaine; Jackson, Susan; Rooney, Kevin

    2015-02-10

    To evaluate the effects of implementing an advance care planning process within pilot sites in North Ayrshire in 2010, focusing on people with palliative care needs. Data were collected from participants in advance care planning training using a questionnaire. Semi-structured interviews were conducted and an audit of documentation was undertaken. Thirty nine questionnaires were returned, a response rate of 16%. Twenty four out of 25 (96%) participants rated the training as having improved their understanding of the advance care planning process. The general consensus in interviews was that advance care planning is a worthwhile process. Participants reported patients achieving their preferred place of end of life care and greater consultation regarding hospitalisation. Within the pilot sites, advance care planning training enhanced the ability of professionals to implement the advance care planning process and record the wishes of patients and residents.

  3. Advance care planning for haemodialysis patients.

    PubMed

    Lim, Chi Eung Danforn; Ng, Rachel W C; Cheng, Nga Chong Lisa; Cigolini, Maria; Kwok, Cannas; Brennan, Frank

    2016-07-26

    End-stage kidney disease (ESKD) is a chronic, debilitative and progressive illness that may need interventions such as dialysis, transplantation, dietary and fluid restrictions. Most patients with ESKD will require renal replacement therapy, such as kidney transplantation or maintenance dialysis. Advance care planning traditionally encompass instructions via living wills, and concern patient preferences about interventions such as cardiopulmonary resuscitation and feeding tubes, or circumstances around assigning surrogate decision makers. Most people undergoing haemodialysis are not aware of advance care planning and few patients formalise their wishes as advance directives and of those who do, many do not discuss their decisions with a physician. Advance care planning involves planning for future healthcare decisions and preferences of the patient in advance while comprehension is intact. It is an essential part of good palliative care that likely improves the lives and deaths of haemodialysis patients. The objective of this review was to determine whether advance care planning in haemodialysis patients, compared with no or less structured forms of advance care planning, can result in fewer hospital admissions or less use of treatments with life-prolonging or curative intent, and if patient's wishes were followed at end-of-life. We searched the Cochrane Kidney and Transplant Specialised Register to 27 June 2016 through contact with the Information Specialist using search terms relevant to this review. We also searched the Cumulative Index of Nursing and Allied Health Literature (CINAHL), and Social Work Abstracts (OvidSP). All randomised controlled trials (RCTs) and quasi-RCTs (RCTs in which allocation to treatment was obtained by alternation, use of alternate medical records, date of birth or other predictable methods) looking at advance care planning versus no form of advance care planning in haemodialysis patients was considered for inclusion without language

  4. Autonomy, liberalism and advance care planning.

    PubMed Central

    Ikonomidis, S; Singer, P A

    1999-01-01

    The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. PMID:10635509

  5. [Advance directives and advance care planning].

    PubMed

    Vayne-Bossert, Petra; Vailloud, Christiane; Ducloux, Dominique; Matis, Caroline; Déramé, Laurence

    2017-02-01

    Advance directives (AD) and Advance Care Planning (ACP) are two measures a person may undertake to assure that their treatment preferences will be respected until the end of his / her life. Anticipation is based on an open and honest communication between the patient, the durable medical power of attorney and the health care professionals. ADs and ACPs are based on a person's values and beliefs that are important to his quality of life. ACP is a continuing process, initiated by health care professionals and integrated into the health care plan of a person. It should be adjusted all along the disease trajectory and favors communication and anticipation in the health care network. ADs are often a personal initiative to ensure one's wishes in relation to health issues. In Switzerland, they are based on a legal framework and their application is therefore mandatory for health care professionals.

  6. Advance care planning in CKD/ESRD: an evolving process.

    PubMed

    Holley, Jean L

    2012-06-01

    Advance care planning was historically considered to be simply the completion of a proxy (health care surrogate designation) or instruction (living will) directive that resulted from a conversation between a patient and his or her physician. We now know that advance care planning is a much more comprehensive and dynamic patient-centered process used by patients and families to strengthen relationships, achieve control over medical care, prepare for death, and clarify goals of care. Some advance directives, notably designated health care proxy documents, remain appropriate expressions of advance care planning. Moreover, although physician orders, such as do-not-resuscitate orders and Physician Orders for Life-Sustaining Treatment, may not be strictly defined as advance directives, their completion, when appropriate, is an integral component of advance care planning. The changing health circumstances and illness trajectory characteristic of ESRD mandate that advance care planning discussions adapt to a patient's situation and therefore must be readdressed at appropriate times and intervals. The options of withholding and withdrawing dialysis add ESRD-specific issues to advance care planning in this population and are events each nephrologist will at some time confront. Advance care planning is important throughout the spectrum of ESRD and is a part of nephrology practice that can be rewarding to nephrologists and beneficial to patients and their families.

  7. Development and evaluation of an aged care specific Advance Care Plan.

    PubMed

    Silvester, William; Parslow, Ruth A; Lewis, Virginia J; Fullam, Rachael S; Sjanta, Rebekah; Jackson, Lynne; White, Vanessa; Hudson, Rosalie

    2013-06-01

    To report on the quality of advance care planning (ACP) documents in use in residential aged care facilities (RACF) in areas of Victoria Australia prior to a systematic intervention; to report on the development and performance of an aged care specific Advance Care Plan template used during the intervention. An audit of the quality of pre-existing documentation used to record resident treatment preferences and end-of-life wishes at participating RACFs; development and pilot of an aged care specific Advance Care Plan template; an audit of the completeness and quality of Advance Care Plans completed on the new template during a systematic ACP intervention. 19 selected RACFs (managed by 12 aged care organisations) in metropolitan and regional areas of Victoria. Documentation in use at facilities prior to the ACP intervention most commonly recorded preferences regarding hospital transfer, life prolonging treatment and personal/cultural/religious wishes. However, 7 of 12 document sets failed to adequately and clearly specify the resident's preferences as regards life prolonging medical treatment. The newly developed aged care specific Advance Care Plan template was met with approval by participating RACFs. Of 203 Advance Care Plans completed on the template throughout the project period, 49% included the appointment of a Medical Enduring Power of Attorney. Requests concerning medical treatment were specified in almost all completed documents (97%), with 73% nominating the option of refusal of life-prolonging treatment. Over 90% of plans included information concerning residents' values and beliefs, and future health situations that the resident would find to be unacceptable were specified in 78% of completed plans. Standardised procedures and documentation are needed to improve the quality of processes, documents and outcomes of ACP in the residential aged care sector.

  8. Social workers' involvement in advance care planning: a systematic narrative review.

    PubMed

    Wang, Chong-Wen; Chan, Cecilia L W; Chow, Amy Y M

    2017-07-10

    Advance care planning is a process of discussion that enables competent adults to express their wishes about end-of-life care through periods of decisional incapacity. Although a number of studies have documented social workers' attitudes toward, knowledge about, and involvement in advance care planning, the information is fragmented. The purpose of this review was to provide a narrative synthesis of evidence on social workers' perspectives and experiences regarding implementation of advance care planning. Six databases were searched for peer-reviewed research papers from their respective inception through December 2016. All of the resulting studies relevant to both advance care planning and social worker were examined. The findings of relevant studies were synthesized thematically. Thirty-one articles met the eligibility criteria. Six research themes were identified: social workers' attitudes toward advance care planning; social workers' knowledge, education and training regarding advance care planning; social workers' involvement in advance care planning; social workers' perceptions of their roles; ethical issues relevant to advance care planning; and the effect of social work intervention on advance care planning engagement. The findings suggest that there is a consensus among social workers that advance care planning is their duty and responsibility and that social workers play an important role in promoting and implementing advance care planning through an array of activities. This study provides useful knowledge for implementing advance care planning through illustrating social workers' perspectives and experiences. Further studies are warranted to understand the complexity inherent in social workers' involvement in advance care planning for different life-limiting illnesses or within different socio-cultural contexts.

  9. Challenges in implementing an advance care planning programme in long-term care.

    PubMed

    McGlade, Ciara; Daly, Edel; McCarthy, Joan; Cornally, Nicola; Weathers, Elizabeth; O'Caoimh, Rónán; Molloy, D William

    2017-02-01

    A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the 'Let Me Decide' advance care planning programme in long-term-care. This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. The challenges encountered were largely concerned with preserving resident's autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Although it may be too late for many long-term-care residents to complete their own advance care directive, the ' Let Me Decide' programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of

  10. Advance Care Planning and the Quality of End-of-Life Care among Older Adults

    PubMed Central

    Bischoff, Kara E.; Sudore, Rebecca; Miao, Yinghui; Boscardin, W. John; Smith, Alexander K.

    2013-01-01

    Background Advance care planning is increasingly common, but whether it influences end-of-life quality of care remains controversial. Design Medicare data and survey data from the Health and Retirement Study were combined to determine whether advance care planning was associated with quality metrics. Setting The nationally representative Health and Retirement Study. Participants 4394 decedent subjects (mean age 82.6 years at death, 55% women). Measurements Advance care planning was defined as having an advance directive, durable power of attorney or having discussed preferences for end-of-life care with a next-of-kin. Outcomes included previously reported quality metrics observed during the last month of life (rates of hospital admission, in-hospital death, >14 days in the hospital, intensive care unit admission, >1 emergency department visit, hospice admission, and length of hospice ≤3 days). Results Seventy-six percent of subjects engaged in advance care planning. Ninety-two percent of advance directives stated a preference to prioritize comfort. After adjustment, subjects who engaged in advance care planning were less likely to die in a hospital (adjusted RR 0.87, 95% CI 0.80-0.94), more likely to be enrolled in hospice (aRR 1.68, 1.43-1.97), and less likely to receive hospice for ≤3 days before death (aRR 0.88, 0.85-0.91). Having an advance directive, a durable-power-of-attorney or an advance care planning discussion were each independently associated with a significant increase in hospice use (p<0.01 for all). Conclusion Advance care planning was associated with improved quality of care at the end of life, including less in-hospital death and increased use of hospice. Having an advance directive, assigning a durable power of attorney and conducting advance care planning discussions are all important elements of advance care planning. PMID:23350921

  11. Legal Briefing: Medicare Coverage of Advance Care Planning.

    PubMed

    Pope, Thaddeus Mason

    2015-01-01

    This issue's "Legal Briefing" column covers the recent decision by the Centers for Medicare and Medicaid Services (CMS) to expand Medicare coverage of advance care planning, beginning 1 January 2016. Since 2009, most "Legal Briefings" in this journal have covered a wide gamut of judicial, legislative, and regulatory developments concerning a particular topic in clinical ethics. In contrast, this "Legal Briefing" is more narrowly focused on one single legal development. This concentration on Medicare coverage of advance care planning seems warranted. Advance care planning is a frequent subject of articles in JCE. After all, it has long been seen as an important, albeit only partial, solution to a significant range of big problems in clinical ethics. These problems range from medical futility disputes to decision making for incapacitated patients who have no available legally authorized surrogate. Consequently, expanded Medicare coverage of advance care planning is a potentially seismic development. It may materially reduce both the frequency and severity of key problems in clinical ethics. Since the sociological, medical, and ethical literature on advance care planning is voluminous, I will not even summarize it here. Instead, I focus on Medicare coverage. I proceed, chronologically, in six stages: 1. Prior Medicare Coverage of Advance Care Planning 2. Proposed Expanded Medicare Coverage in 2015 3. Proposed Expanded Medicare Coverage in 2016 4. The Final Rule Expanding Medicare Coverage in 2016 5. Remaining Issues for CMS to Address in 2017 6. Pending Federal Legislation. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

  12. Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review.

    PubMed

    Myers, Jeff; Cosby, Roxanne; Gzik, Danusia; Harle, Ingrid; Harrold, Deb; Incardona, Nadia; Walton, Tara

    2018-01-01

    Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations focus on planning for future health care, ensuring that an incapable person's wishes are known and can guide the person's substitute decision maker for future decision-making. Goals of care discussions focus on preparing for current decision-making by ensuring the person's goals guide this process. To provide evidence regarding tools and/or practices available for use by health-care providers to effectively facilitate advance care planning conversations and/or goals of care discussions. A systematic review was conducted focusing on guidelines, randomized trials, comparative studies, and noncomparative studies. Databases searched included MEDLINE, EMBASE, and the proceedings of the International Advance Care Planning Conference and the American Society of Clinical Oncology Palliative Care Symposium. Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning or goals of care discussions. Effective advance care planning conversations at both the population and the individual level require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. There is a need for research focused on goals of care discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate goals of care from advance care planning.

  13. Advance care planning within survivorship care plans for older cancer survivors: A systematic review.

    PubMed

    O'Caoimh, Rónán; Cornally, Nicola; O'Sullivan, Ronan; Hally, Ruth; Weathers, Elizabeth; Lavan, Amanda H; Kearns, Tara; Coffey, Alice; McGlade, Ciara; Molloy, D William

    2017-11-01

    Advances in the medical treatment of cancer have increased the number of survivors, particularly among older adults, who now represent the majority of these. Survivorship care plans (SCPs) are documents that cancer patients receive summarising their care, usually at the end of treatment but preferably from initial diagnosis. These may increase patient satisfaction and represent an opportunity to initiate preventative strategies and address future care needs. Advance care planning (ACP), incorporating advance healthcare decision-making, including formal written directives, increases satisfaction and end-of-life care. This paper systematically reviews evaluations of ACP within SCPs among older (≥65 years) cancer survivors. No studies meeting the inclusion criteria were identified by search strategies conducted in PubMed/MEDLINE and the Cochrane databases. One paper examined cancer survivors' mainly positive views of ACP. Another discussed the use of a SCP supported by a 'distress inventory' that included an advance care directive (living will) as an issue, though no formal evaluation was reported. Although ACP is important for older adults, no study was found that evaluated its role within survivorship care planning. Despite the risk of recurrence and the potential for morbidity and mortality, especially among older cancer survivors, ACP is not yet a feature of SCPs. Copyright © 2017 Elsevier B.V. All rights reserved.

  14. Advance care planning for nursing home residents with dementia: policy vs. practice.

    PubMed

    Ampe, Sophie; Sevenants, Aline; Smets, Tinne; Declercq, Anja; Van Audenhove, Chantal

    2016-03-01

    The aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning. Through advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning. Observational cross-sectional study in 20 nursing homes. The ACP audit assessed the views of the nursing homes' staff on the advance care planning policy. In addition, individual conversations were analysed with 'ACP criteria' (realization of advance care planning) and the 'OPTION' instrument (involvement of residents/families). June 2013-September 2013. Nursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice. The evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice. © 2015 John Wiley & Sons Ltd.

  15. Building successful coalitions for promoting advance care planning.

    PubMed

    Marchand, Lucille; Fowler, Kathryn J; Kokanovic, Obrad

    2006-01-01

    Advance care planning (ACP) has had few successful initiatives. This qualitative study explores the challenges and successes of an advance care planning coalition in Wisconsin called Life Planning 2000 using key informant interviews (n = 24) and grounded theory. Major themes included: commitment (the need for leadership, recruitment of key members, and funding); cohesiveness (disparate groups collaborating toward a common purpose), and outcomes (shift in paradigm from signing documents to process of advanced care planning, new-found collaborative relationships, and educational tool development). Coalitions need to define short-, intermediate-, and long-term goals that result in measurable outcomes and an evaluation process. Resources must be commensurate with goals. Strong leadership, paid staff adequate funding, and the collaboration of diverse groups working toward common goals are the basic requirements of a successful coalition.

  16. Advance care planning: challenges and approaches for pediatricians.

    PubMed

    Heckford, Emma; Beringer, Antonia Jane

    2014-09-01

    There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize practice. Our aim was to review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area. We conducted a retrospective case note review. Study subjects were from two National Health Service (NHS) Trusts in Bristol in the United Kingdom. Cases were identified from Child Death Overview Panel data. Forty-two sets of case notes were reviewed in relation to 20 children. Measurements included quantitative and qualitative review of advance care planning in relation to standards set by The Association for Children's Palliative Care (ACT). In 25% of cases there was no documented discussion with families about the approach to end of life (EOL). In 25% of cases there was no evidence of an advance care plan, and the content and accessibility of those that did exist was variable. Forty-five percent of families were not offered a choice with regard to location of care (LOC) in the last months of life and 50% were not offered a choice about location of death (LOD). We hope that acknowledgement of some of the challenges, alongside recognition of the clear benefits, of planning will help pediatricians to deliver this important area of care.

  17. Adversaries at the Bedside: Advance Care Plans and Future Welfare.

    PubMed

    Kestigian, Aidan; London, Alex John

    2016-10-01

    Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self-defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients' advance care plans. © 2016 John Wiley & Sons Ltd.

  18. The development and validation of the advance care planning questionnaire in Malaysia.

    PubMed

    Lai, Pauline Siew Mei; Mohd Mudri, Salinah; Chinna, Karuthan; Othman, Sajaratulnisah

    2016-10-18

    Advance care planning is a voluntary process whereby individual preferences, values and beliefs are used to aid a person in planning for end-of-life care. Currently, there is no local instrument to assess an individual's awareness and attitude towards advance care planning. This study aimed to develop an Advance Care Planning Questionnaire and to determine its validity and reliability among older people in Malaysia. The Advance Care Planning Questionnaire was developed based on literature review. Face and content validity was verified by an expert panel, and piloted among 15 participants. Our study was conducted from October 2013 to February 2014, at an urban primary care clinic in Malaysia. Included were those aged >50 years, who could understand English. A retest was conducted 2 weeks after the first administration. Participants from the pilot study did not encounter any problems in answering the Advance Care Planning Questionnaire. Hence, no further modifications were made. Flesch reading ease was 71. The final version of the Advance Care Planning Questionnaire consists of 66 items: 30 items were measured on a nominal scale, whilst 36 items were measured on a Likert-like scale; of which we were only able to validate 22 items, as the remaining 14 items were descriptive in nature. A total of 245 eligible participants were approached; of which 230 agreed to participate (response rate = 93.9 %). Factor analysis on the 22 items measured on a Likert-scale revealed four domains: "feelings regarding advance care planning", "justifications for advance care planning", "justifications for not having advance care planning: fate and religion", and "justifications for not having advance care planning: avoid thinking about death". The Cronbach's alpha values for items each domain ranged from 0.637-0.915. In test-retest, kappa values ranged from 0.738-0.947. The final Advance Care Planning Questionnaire consisted of 63 items and 4 domains. It was found to be a valid and

  19. Advance Care Planning Meets Group Medical Visits: The Feasibility of Promoting Conversations

    PubMed Central

    Lum, Hillary D.; Jones, Jacqueline; Matlock, Daniel D.; Glasgow, Russell E.; Lobo, Ingrid; Levy, Cari R.; Schwartz, Robert S.; Sudore, Rebecca L.; Kutner, Jean S.

    2016-01-01

    PURPOSE Primary care needs new models to facilitate advance care planning conversations. These conversations focus on preferences regarding serious illness and may involve patients, decision makers, and health care providers. We describe the feasibility of the first primary care–based group visit model focused on advance care planning. METHODS We conducted a pilot demonstration of an advance care planning group visit in a geriatrics clinic. Patients were aged at least 65 years. Groups of patients met in 2 sessions of 2 hours each facilitated by a geriatrician and a social worker. Activities included considering personal values, discussing advance care planning, choosing surrogate decision-makers, and completing advance directives. We used the RE-AIM framework to evaluate the project. RESULTS Ten of 11 clinicians referred patients for participation. Of 80 patients approached, 32 participated in 5 group visit cohorts (a 40% participation rate) and 27 participated in both sessions (an 84% retention rate). Mean age was 79 years; 59% of participants were female and 72% white. Most evaluated the group visit as better than usual clinic visits for discussing advance care planning. Patients reported increases in detailed advance care planning conversations after participating (19% to 41%, P = .02). Qualitative analysis found that older adults were willing to share personal values and challenges related to advance care planning and that they initiated discussions about a broad range of relevant topics. CONCLUSION A group visit to facilitate discussions about advance care planning and increase patient engagement is feasible. This model warrants further evaluation for effectiveness in improving advance care planning outcomes for patients, clinicians, and the system. PMID:26951587

  20. The economic evidence for advance care planning: Systematic review of evidence.

    PubMed

    Dixon, Josie; Matosevic, Tihana; Knapp, Martin

    2015-12-01

    Advance care planning is a process of discussion and review concerning future care in the event of losing capacity. Aimed at improving the appropriateness and quality of care, it is also often considered a means of making better use of healthcare resources at the end of life. To review and summarise economic evidence on advance care planning. A systematic review of the academic literature. We searched for English language, peer-reviewed journal articles, 1990-2014, using relevant research databases: PubMed, ProQuest, CINAHL Plus with Full Text; EconLit, PsycINFO, SocINDEX with Full Text and International Bibliography of the Social Sciences. Empirical studies using statistical methods in which advance care planning and costs are variables were included. There are no published cost-effectiveness studies. Included studies focus on healthcare savings, usually associated with reduced demand for hospital care. Advance care planning appears to be associated with healthcare savings for some people in some circumstances, such as people living with dementia in the community, people in nursing homes or in areas with high end-of-life care spending. There is no evidence that advance care planning is likely to be more expensive. There is need for clearer articulation of the likely mechanisms by which advance care planning can lead to reduced care costs or improved cost-effectiveness, particularly for people who retain capacity. There is also a need to consider wider costs, including the costs of advance care planning facilitation or interventions and the costs of substitute health, social and informal care. Economic outcomes need to be considered in the context of quality benefits. © The Author(s) 2015.

  1. Physicians' Views on Advance Care Planning and End-of-Life Care Conversations.

    PubMed

    Fulmer, Terry; Escobedo, Marcus; Berman, Amy; Koren, Mary Jane; Hernández, Sandra; Hult, Angela

    2018-05-23

    To evaluate physicians' views on advance care planning, goals of care, and end-of-life conversations. Random sample telephone survey. United States. Physicians (primary care specialists; pulmonology, cardiology, oncology subspecialists) actively practicing medicine and regularly seeing patients aged 65 and older (N=736; 81% male, 75% white, 66% aged ≥50. A 37-item telephone survey constructed by a professional polling group with national expert oversight measured attitudes and perceptions of barriers and facilitators to advance care planning. Summative data are presented here. Ninety-nine percent of participants agreed that it is important to have end-of-life conversations, yet only 29% reported that they have formal training for such conversations. Those most likely to have training included younger physicians and those caring for a racially and ethnically diverse population. Patient values and preferences were the strongest motivating factors in having advance care planning conversations, with 92% of participants rating it extremely important. Ninety-five percent of participants reported that they supported a new Medicare fee-for-service benefit reimbursing advance care planning. The biggest barrier mentioned was time availability. Other barriers included not wanting a patient to give up hope and feeling uncomfortable. With more than half of physicians reporting that they feel educationally unprepared, there medical school curricula need to be strengthened to ensure readiness for end-of-life conversations. Clinician barriers need to be addressed to meet the needs of older adults and families. Policies that focus on payment for quality should be evaluated at regular intervals to monitor their effect on advance care planning. © 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.

  2. Advance care planning for cancer patients in primary care: a feasibility study

    PubMed Central

    Boyd, Kirsty; Mason, Bruce; Kendall, Marilyn; Barclay, Stephen; Chinn, David; Thomas, Keri; Sheikh, Aziz; Murray, Scott A

    2010-01-01

    Background Advance care planning is being promoted as a central component of end-of-life policies in many developed countries, but there is concern that professionals find its implementation challenging. Aim To assess the feasibility of implementing advance care planning in UK primary care. Design of study Mixed methods evaluation of a pilot educational intervention. Setting Four general practices in south-east Scotland. Method Interviews with 20 GPs and eight community nurses before and after a practice-based workshop; this was followed by telephone interviews with nine other GPs with a special interest in palliative care from across the UK. Results End-of-life care planning for patients typically starts as an urgent response to clear evidence of a short prognosis, and aims to achieve a ‘good death’. Findings suggest that there were multiple barriers to earlier planning: prognostic uncertainty; limited collaboration with secondary care; a desire to maintain hope; and resistance to any kind of ‘tick-box’ approach. Following the workshop, participants' knowledge and skills were enhanced but there was little evidence of more proactive planning. GPs from other parts of the UK described confusion over terminology and were concerned about the difficulties of implementing inflexible, policy-driven care. Conclusion A clear divide was found between UK policy directives and delivery of end-of-life care in the community that educational interventions targeting primary care professionals are unlikely to address. Advance care planning has the potential to promote autonomy and shared decision making about end-of-life care, but this will require a significant shift in attitudes. PMID:21144189

  3. The Evolution of Health Care Advance Planning Law and Policy

    PubMed Central

    Sabatino, Charles P

    2010-01-01

    Context: The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the state legislative level addressing surrogate decision making and advance directives, have resulted in a disjointed policy landscape, yet with important points of convergence evolving over time. An understanding of the evolution of advance care planning policy has important implications for policy at both the state and federal levels. Methods: This article is a longitudinal statutory and literature review of health care advance planning from its origins to the present. Findings: While considerable variability across the states still remains, changes in law and policy over time suggest a gradual paradigm shift from what is described as a “legal transactional approach” to a “communications approach,” the most recent extension of which is the emergence of Physician Orders for Life-Sustaining Treatment, or POLST. The communications approach helps translate patients’ goals into visible and portable medical orders. Conclusions: States are likely to continue gradually moving away from a legal transactional mode of advance planning toward a communications model, albeit with challenges to authentic and reliable communication that accurately translates patients’ wishes into the care they receive. In the meantime, the states and their health care institutions will continue to serve as the primary laboratory for advance care planning policy and practice. PMID:20579283

  4. The evolution of health care advance planning law and policy.

    PubMed

    Sabatino, Charles P

    2010-06-01

    The legal tools of health care advance planning have substantially changed since their emergence in the mid-1970s. Thirty years of policy development, primarily at the state legislative level addressing surrogate decision making and advance directives, have resulted in a disjointed policy landscape, yet with important points of convergence evolving over time. An understanding of the evolution of advance care planning policy has important implications for policy at both the state and federal levels. This article is a longitudinal statutory and literature review of health care advance planning from its origins to the present. While considerable variability across the states still remains, changes in law and policy over time suggest a gradual paradigm shift from what is described as a "legal transactional approach" to a "communications approach," the most recent extension of which is the emergence of Physician Orders for Life-Sustaining Treatment, or POLST. The communications approach helps translate patients' goals into visible and portable medical orders. States are likely to continue gradually moving away from a legal transactional mode of advance planning toward a communications model, albeit with challenges to authentic and reliable communication that accurately translates patients' wishes into the care they receive. In the meantime, the states and their health care institutions will continue to serve as the primary laboratory for advance care planning policy and practice.

  5. Validation of a Novel Electronic Health Record Patient Portal Advance Care Planning Delivery System.

    PubMed

    Bose-Brill, Seuli; Feeney, Michelle; Prater, Laura; Miles, Laura; Corbett, Angela; Koesters, Stephen

    2018-06-26

    Advance care planning allows patients to articulate their future care preferences should they no longer be able to make decisions on their own. Early advance care planning in outpatient settings provides benefits such as less aggressive care and fewer hospitalizations, yet it is underutilized due to barriers such as provider time constraints and communication complexity. Novel methods, such as patient portals, provide a unique opportunity to conduct advance care planning previsit planning for outpatient care. This follow-up to our pilot study aimed to conduct pragmatic testing of a novel electronic health record-tethered framework and its effects on advance care planning delivery in a real-world primary care setting. Our intervention tested a previsit advance care planning workflow centered around a framework sent via secure electronic health record-linked patient portal in a real-world clinical setting. The primary objective of this study was to determine its impact on frequency and quality of advance care planning documentation. We conducted a pragmatic trial including 2 sister clinical sites, one site implementing the intervention and the other continuing standard care. A total of 419 patients aged between 50 and 93 years with active portal accounts received intervention (n=200) or standard care (n=219). Chart review analyzed the presence of advance care planning and its quality and was graded with previously established scoring criteria based on advance care planning best practice guidelines from multiple nations. A total of 19.5% (39/200) of patients who received previsit planning responded to the framework. We found that the intervention site had statistically significant improvement in new advance care planning documentation rates (P<.01) and quality (P<.01) among all eligible patients. Advance care planning documentation rates increased by 105% (19/39 to 39/39) and quality improved among all patients who engaged in the previsit planning framework (n=39

  6. Exploring the knowledge, attitudes and needs of advance care planning in older Chinese Australians.

    PubMed

    Yap, Sok Shin; Chen, Karren; Detering, Karen M; Fraser, Scott A

    2017-05-23

    To identify factors that influence the engagement of Chinese Australians with advance care planning. Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important. This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning. Semistructured interviews were conducted in-language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community-dwelling older Chinese Australians within Victoria, Australia. Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death-related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In-language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning. The participants of this study were open to conversations regarding future medical planning and end-of-life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning. The results highlight the need to provide access to appropriate in

  7. Advance Care Planning in palliative care: a qualitative investigation into the perspective of Paediatric Intensive Care Unit staff.

    PubMed

    Mitchell, Sarah; Dale, Jeremy

    2015-04-01

    The majority of children and young people who die in the United Kingdom have pre-existing life-limiting illness. Currently, most such deaths occur in hospital, most frequently within the intensive care environment. To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement. Qualitative one-to-one, semi-structured interviews were conducted with Paediatric Intensive Care Unit consultants and senior nurses, to gain rich, contextual data. Thematic content analysis was carried out. UK tertiary referral centre Paediatric Intensive Care Unit. Eight Paediatric Intensive Care Unit consultants and six senior nurses participated. Four main themes emerged: recognition of an illness as 'life-limiting'; Advance Care Planning as a multi-disciplinary, structured process; the value of Advance Care Planning and adverse consequences of inadequate Advance Care Planning. Potential benefits of Advance Care Planning include providing the opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families. Barriers to the process include the recognition of the life-limiting nature of an illness and gaining consensus of medical opinion. Organisational improvements towards earlier recognition of life-limiting illness and subsequent Advance Care Planning were recommended, including education and training, as well as the need for wider societal debate. Advance Care Planning for children and young people with life-limiting conditions has the potential to improve care for patients and their families, providing the opportunity to make decisions based on clear information at an appropriate time, and avoid potentially harmful intensive clinical interventions at the end of life. © The Author(s) 2015.

  8. End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study.

    PubMed

    Ashton, Susan Elizabeth; Roe, Brenda; Jack, Barbara; McClelland, Bob

    2016-09-01

    End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions. To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia. Qualitative research including a series of single cases (close family relatives). A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010. Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life. Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia. © The Author(s) 2014.

  9. Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

    PubMed

    Blackford, Jeanine; Street, Annette

    2012-09-01

    This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services. An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care. A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews (n = 9). Three community palliative care services: one regional and two metropolitan services in Victoria, Australia. The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the model. Changes to quality audit processes were essential to consolidate the model into routine palliative care practice. An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure. © 2011 Blackwell Publishing Ltd.

  10. Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study.

    PubMed

    Bonner, Gloria J; Wang, Edward; Wilkie, Diana J; Ferrans, Carol E; Dancy, Barbara; Watkins, Yashika

    2014-01-01

    Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.

  11. Advance care planning, palliative care, and end-of-life care interventions for homeless people: A systematic review.

    PubMed

    Sumalinog, Rafael; Harrington, Katy; Dosani, Naheed; Hwang, Stephen W

    2017-02-01

    Homeless individuals have a high prevalence of multiple chronic comorbidities and early mortality compared to the general population. They also experience significant barriers to access and stigmatization in the healthcare system. Providing advance care planning, palliative care, and end-of-life care for this underserved population is an important health issue. To summarize and evaluate the evidence surrounding advance care planning, palliative care, and end-of-life care interventions for homeless persons. A systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Articles from MEDLINE, EMBASE, CINAHL, PsycINFO, Social Work Abstracts, Cochrane Library, Web of Science, and PubMed databases were searched through 13 June 2015. Peer-reviewed studies that implemented advance care planning, palliative care, and end-of-life care interventions for homeless populations were included. Data from studies were independently extracted by two investigators using pre-specified criteria, and quality was assessed using modified Cochrane and Critical Appraisal Skills Programme tools. Six articles met inclusion criteria. Two studies were randomized controlled trials involving advance directive completion. Two cohort studies investigated the costs of a shelter-based palliative care intervention and predictors for completing advance directives. These studies were rated low to fair quality. Two qualitative studies explored the interface between harm-reduction services and end-of-life care and the conditions for providing palliative care for homeless persons in a support home. The effectiveness of advance care planning, palliative care, and end-of-life care interventions for homeless individuals is uncertain. High-quality studies of interventions that reflect the unique and complex circumstances of homeless populations and investigate patient-related outcomes, caregiver burden, and cost-effectiveness are needed.

  12. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer.

    PubMed

    Zhou, Guiyun; Stoltzfus, Jill C; Houldin, Arlene D; Parks, Susan M; Swan, Beth Ann

    2010-11-01

    To establish initial reliability and validity of a Web-based survey focused on oncology advanced practice nurses' (APNs') knowledge, attitudes, and practice behaviors regarding advanced care planning, and to obtain preliminary understanding of APNs' knowledge, attitudes, and practice behaviors and perceived barriers to advanced care planning. Descriptive, cross-sectional, pilot survey study. The eastern United States. 300 oncology APNs. Guided by the Theory of Planned Behavior, a knowledge, attitudes, and practice behaviors survey was developed and reviewed for content validity. The survey was distributed to 300 APNs via e-mail and sent again to the 89 APNs who responded to the initial survey. Exploratory factor analysis was used to examine the construct validity and test-retest reliability of the survey's attitudinal and practice behavior portions. Respondents' demographics, knowledge, attitudes, practice behaviors, and perceived barriers to advanced care planning practice. Exploratory factor analysis yielded a five-factor solution from the survey's attitudes and practice behavior portions with internal consistency using Cronbach alpha. Respondents achieved an average of 67% correct answers in the 12-item knowledge section and scored positively in attitudes toward advanced care planning. Their practice behavior scores were marginally positive. The most common reported barriers were from patients' and families' as well as physicians' reluctance to discuss advanced care planning. The attitudinal and practice behaviors portions of the survey demonstrated preliminary construct validity and test-retest reliability. Regarding advanced care planning, respondents were moderately knowledgeable, but their advanced care planning practice was not routine. Validly assessing oncology APNs' knowledge, attitudes, and practice behaviors regarding advanced care planning will enable more tailored approaches to improve end-of-life care outcomes.

  13. Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study.

    PubMed

    Schuster, Anne Lr; Aslakson, Rebecca A; Bridges, John Fp

    2014-01-01

    High-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders' views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid. Key informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis. Key informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings. Stakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients.

  14. Creating an advance-care-planning decision aid for high-risk surgery: a qualitative study

    PubMed Central

    2014-01-01

    Background High-risk surgery patients may lose decision-making capacity as a result of surgical complications. Advance care planning prior to surgery may be beneficial, but remains controversial and is hindered by a lack of appropriate decision aids. This study sought to examine stakeholders’ views on the appropriateness of using decision aids, in general, to support advance care planning among high-risk surgery populations and the design of such a decision aid. Methods Key informants were recruited through purposive and snowball sampling. Semi-structured interviews were conducted by phone until data collected reached theoretical saturation. Key informants were asked to discuss their thoughts about advance care planning and interventions to support advance care planning, particularly for this population. Researchers took de-identified notes that were analyzed for emerging concordant, discordant, and recurrent themes using interpretative phenomenological analysis. Results Key informants described the importance of initiating advance care planning preoperatively, despite potential challenges present in surgical settings. In general, decision aids were viewed as an appropriate approach to support advance care planning for this population. A recipe emerged from the data that outlines tools, ingredients, and tips for success that are needed to design an advance care planning decision aid for high-risk surgical settings. Conclusions Stakeholders supported incorporating advance care planning in high-risk surgical settings and endorsed the appropriateness of using decision aids to do so. Findings will inform the next stages of developing the first advance care planning decision aid for high-risk surgery patients. PMID:25067908

  15. Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

    PubMed

    Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J

    2016-01-01

    People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population. Copyright © 2016 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

  16. Impact of advance care planning on the care of patients with heart failure: study protocol for a randomized controlled trial.

    PubMed

    Malhotra, Chetna; Sim, David Kheng Leng; Jaufeerally, Fazlur; Vikas, Nivedita Nadkarni; Sim, Genevieve Wong Cheng; Tan, Boon Cheng; Ng, Clarice Shu Hwa; Tho, Pei Leng; Lim, Jingfen; Chuang, Claire Ya-Ting; Fong, Florence Hui Mei; Liu, Joy; Finkelstein, Eric A

    2016-06-10

    Despite the promise and popularity of advance care planning, there is insufficient evidence that advance care planning helps patients to meet their end-of-life care preferences, especially in Asian settings. Thus, the proposed study aims to assess whether patients with advanced heart failure who are receiving advance care planning have a greater likelihood of receiving end-of-life care consistent with their preferences compared to patients receiving usual care. Secondary objectives are to compare differences in health care expenditures, quality of life, anxiety and depression, understanding of own illness, participation in decision-making and concordance with their caregiver's preferences for end-of-life care, between patients with advanced heart failure receiving advance care planning and usual care. This is a two-arm randomized controlled trial of advance care planning versus usual care (control) conducted at two institutions in Singapore. Two hundred and eighty-two patients with advanced heart failure (n = 94 in the advance care planning arm; n = 188 in the control arm receiving usual care) will be recruited from these centers and followed for 1 year or until they die, whichever is earlier. Additionally, the study will include up to one caregiver per patient enrolled. If advance care planning is proven to be effective, the results will help to promote its uptake among health care providers and patients both within Singapore and in other countries. NCT02299180 . Registered on 18 November 2014.

  17. Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?

    PubMed

    O'Hare, Ann M; Szarka, Jackie; McFarland, Lynne V; Taylor, Janelle S; Sudore, Rebecca L; Trivedi, Ranak; Reinke, Lynn F; Vig, Elizabeth K

    2016-05-06

    There is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease. Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. The comments of providers interviewed for this study spoke to significant system-level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients. The comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease. Copyright © 2016 by the American Society of Nephrology.

  18. Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?

    PubMed Central

    Szarka, Jackie; McFarland, Lynne V.; Taylor, Janelle S.; Sudore, Rebecca L.; Trivedi, Ranak; Reinke, Lynn F.; Vig, Elizabeth K.

    2016-01-01

    Background and objectives There is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease. Design, setting, participants, & measurements Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. Results The comments of providers interviewed for this study spoke to significant system–level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients. Conclusions The comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease. PMID:27084877

  19. Teaching Advance Care Planning to Medical Students with a Computer-Based Decision Aid

    PubMed Central

    Levi, Benjamin H.

    2013-01-01

    Discussing end-of-life decisions with cancer patients is a crucial skill for physicians. This article reports findings from a pilot study evaluating the effectiveness of a computer-based decision aid for teaching medical students about advance care planning. Second-year medical students at a single medical school were randomized to use a standard advance directive or a computer-based decision aid to help patients with advance care planning. Students' knowledge, skills, and satisfaction were measured by self-report; their performance was rated by patients. 121/133 (91%) of students participated. The Decision-Aid Group (n=60) outperformed the Standard Group (n=61) in terms of students´ knowledge (p<0.01), confidence in helping patients with advance care planning (p<0.01), knowledge of what matters to patients (p=0.05), and satisfaction with their learning experience (p<0.01). Likewise, patients in the Decision Aid Group were more satisfied with the advance care planning method (p<0.01) and with several aspects of student performance. Use of a computer-based decision aid may be an effective way to teach medical students how to discuss advance care planning with cancer patients. PMID:20632222

  20. Three Methods of Assessing Values for Advance Care Planning

    PubMed Central

    Karel, Michele J.; Moye, Jennifer; Bank, Adam; Azar, Armin R.

    2016-01-01

    Advance care planning ideally includes communication about values between patients, family members, and care providers. This study examined the utility of health care values assessment tools for older adults with and without dementia. Adults aged 60 and older, with and without dementia, completed three values assessment tools—open-ended, forced-choice, and rating scale questions—and named a preferred surrogate decision maker. Responses to forced-choice items were examined at 9-month retest. Adults with and without dementia appeared equally able to respond meaningfully to questions about values regarding quality of life and health care decisions. People with dementia were generally as able as controls to respond consistently after 9 months. Although values assessment methods show promise, further item and scale development work is needed. Older adults with dementia should be included in clarifying values for advance care planning to the extent that they desire and are able. PMID:17215205

  1. Advance care planning and proxy decision making for patients with advanced Parkinson disease.

    PubMed

    Kwak, Jung; Wallendal, Maggie S; Fritsch, Thomas; Leo, Gary; Hyde, Trevor

    2014-03-01

    To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD). Sixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study. Sixty patients with PD (95%) had completed a living will, but only 38% had shared the document with a physician. Among three life-support treatments--cardiopulmonary resuscitation (CPR), ventilator, and feeding tube--47% of patients opted for CPR, 16% for ventilator, and 20% for feeding tube. Forty-two percent of proxies did not know patients' preferences for one or more of the three life-support treatments. Only 28% of proxies reported that patients wanted hospice. Patients who shared advance directives with a physician were significantly less likely to choose CPR and a feeding tube and they were more likely to choose hospice. In a hypothetical end-of-life (EOL) scenario, the majority of proxies chose comfort care as the EOL goal of care (53%) and pain and symptom management only as the course of treatment option (72%); these proxy choices for patients, however, were not associated with patients' preferences for life support. Patients' proxies preferred a form of shared decision making with other family members and physicians. Advance care planning is effective when patients, families, and healthcare professionals together consider future needs for EOL care decisions. Further efforts are needed by healthcare professionals to provide evidence-based education about care options and facilitate advanced discussion and shared decision making by the patient and families.

  2. Advance care planning for nursing home residents with dementia: Influence of 'we DECide' on policy and practice.

    PubMed

    Ampe, Sophie; Sevenants, Aline; Smets, Tinne; Declercq, Anja; Van Audenhove, Chantal

    2017-01-01

    (1) To pilot 'we DECide' in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing 'we DECide'. This was a pre-test-post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations). Advance care planning policy was significantly more compliant with best practice after 'we DECide'; policy in the control group was not. Advance care planning was not discussed more frequently, nor were residents and families involved to a higher degree in conversations after 'we DECide'. Barriers to realizing advance care planning included staff's limited responsibilities; facilitators included support by management staff, and involvement of the whole organization. 'We DECide' had a positive influence on advance care planning policy. Daily practice, however, did not change. Future studies should pay more attention to long-term implementation strategies. Long-term implementation of advance care planning requires involvement of the whole organization and a continuing support system for health care professionals. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  3. WHAT INFLUENCES INDIVIDUALS TO ENGAGE IN ADVANCE CARE PLANNING?

    PubMed Central

    Dellasega, Cheryl; Whitehead, Megan; Green, Michael J.

    2013-01-01

    Background Advance care planning (ACP) is an under-utilized process that involves thinking about what kind of life-prolonging medical care one would want should the need arise, identifying a spokesperson, and then communicating these wishes. Objective To better understand what influences individuals to engage in ACP. Design Three focus groups using semi-structured interactive interviews were conducted with 23 older individuals from three diverse populations in central Pennsylvania. Results Four categories of influences for engaging in ACP were identified: 1) Concern for Self; 2) Concern for Others; 3) Expectations About the Impact of Advance Care Planning; and 4) Anecdotes, Stories, & Experiences. Conclusions The motivations for undertaking ACP that we have identified offer healthcare providers insight into effective strategies for facilitating the process of ACP with their patients. PMID:20103783

  4. Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations

    PubMed Central

    Klingler, Corinna; in der Schmitten, Jürgen; Marckmann, Georg

    2015-01-01

    Background: While there is increasing evidence that Advance Care Planning has the potential to strengthen patient autonomy and improve quality of care near the end of life, it remains unclear whether it could also reduce net costs of care. Aim: This study aims to describe the cost implications of Advance Care Planning programmes and discusses ethical conflicts arising in this context. Design: We conducted a systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Data sources: We systematically searched the databases PubMed, NHS EED, EURONHEED, Cochrane Library and EconLit. We included empirical studies (no limitation to study type) that investigated the cost implications of Advance Care Planning programmes involving professionally facilitated end-of-life discussions. Results and discussion: Seven studies met our inclusion criteria. Four of them used a randomised controlled design, one used a before-after design and two were observational studies. Six studies found reductions in costs of care ranging from USD1041 to USD64,827 per patient, depending on the study period and the cost measurement. One study detected no differences in costs. Studies varied considerably regarding the Advance Care Planning intervention, patient selection and costs measured which may explain some of the variations in findings. Normative appraisal: Looking at the impact of Advance Care Planning on costs raises delicate ethical issues. Given the increasing pressure to reduce expenditures, there may be concerns that cost considerations could unduly influence the sensitive communication process, thus jeopardising patient autonomy. Safeguards are proposed to reduce these risks. Conclusion: The limited data indicate net cost savings may be realised with Advance Care Planning. Methodologically robust trials with clearly defined Advance Care Planning interventions are needed to make the costs and returns of Advance Care Planning transparent. PMID

  5. Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations.

    PubMed

    Klingler, Corinna; in der Schmitten, Jürgen; Marckmann, Georg

    2016-05-01

    While there is increasing evidence that Advance Care Planning has the potential to strengthen patient autonomy and improve quality of care near the end of life, it remains unclear whether it could also reduce net costs of care. This study aims to describe the cost implications of Advance Care Planning programmes and discusses ethical conflicts arising in this context. We conducted a systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. We systematically searched the databases PubMed, NHS EED, EURONHEED, Cochrane Library and EconLit. We included empirical studies (no limitation to study type) that investigated the cost implications of Advance Care Planning programmes involving professionally facilitated end-of-life discussions. Seven studies met our inclusion criteria. Four of them used a randomised controlled design, one used a before-after design and two were observational studies. Six studies found reductions in costs of care ranging from USD1041 to USD64,827 per patient, depending on the study period and the cost measurement. One study detected no differences in costs. Studies varied considerably regarding the Advance Care Planning intervention, patient selection and costs measured which may explain some of the variations in findings. Looking at the impact of Advance Care Planning on costs raises delicate ethical issues. Given the increasing pressure to reduce expenditures, there may be concerns that cost considerations could unduly influence the sensitive communication process, thus jeopardising patient autonomy. Safeguards are proposed to reduce these risks. The limited data indicate net cost savings may be realised with Advance Care Planning. Methodologically robust trials with clearly defined Advance Care Planning interventions are needed to make the costs and returns of Advance Care Planning transparent. © The Author(s) 2015.

  6. Care of Patients at the End of Life: Advance Care Planning.

    PubMed

    Ackermann, Richard J

    2016-08-01

    Advance directives are legal documents that give instructions about how to provide care when patients develop life-threatening illnesses and can no longer communicate their wishes. Two types of documents are widely used-a living will and a durable power of attorney for health care. Most states also authorize physician orders for life-sustaining treatment. Physicians should encourage patients, particularly those with severe chronic or terminal conditions, to prepare advance directives. Medicare now reimburses billing codes for advance care consultations. Directions regarding cardiopulmonary resuscitation and artificial ventilation often are included in advance care plans, and use of artificial nutrition and hydration (ANH) also should be addressed, particularly for patients with advanced dementia. Evidence shows that in such patients, ANH does not prolong survival, increase comfort, or improve quality of life. Given the lack of benefit, physicians should recommend against use of ANH for patients with dementia. Finally, physicians should encourage use of hospice services by patients whose life expectancy is 6 months or less. Although Medicare and most other health care insurers cover hospice care, and despite evidence that patient and family satisfaction increase when hospice services are used, many patients do not use these services. Written permission from the American Academy of Family Physicians is required for reproduction of this material in whole or in part in any form or medium.

  7. Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities.

    PubMed

    Street, Maryann; Ottmann, Goetz; Johnstone, Megan-Jane; Considine, Julie; Livingston, Patricia M

    2015-09-01

    The purpose of this retrospective, cross-sectional study was to determine the prevalence of advance care planning (ACP) among older people presenting to an Emergency Department (ED) from the community or a residential aged care facility. The study sample comprised 300 older people (aged 65+ years) presenting to three Victorian EDs in 2011. A total of 150 patients transferred from residential aged care to ED were randomly selected and then matched to 150 people who lived in the community and attended the ED by age, gender, reason for ED attendance and triage category on arrival. Overall prevalence of ACP was 13.3% (n = 40/300); over one-quarter (26.6%, n = 40/150) of those presenting to the ED from residential aged care had a documented Advance Care Plan, compared to none (0%, n = 0/150) of the people from the community. There were no significant differences in the median ED length of stay, number of investigations and interventions undertaken in ED, time seen by a doctor or rate of hospital admission for those with an Advance Care Plan compared to those without. Those with a comorbidity of cerebrovascular disease or dementia and those assessed with impaired brain function were more likely to have a documented Advance Care Plan on arrival at ED. Length of hospital stay was shorter for those with an Advance Care Plan [median (IQR) = 3 days (2-6) vs. 6 days (2-10), P = 0.027] and readmission lower (0% vs. 13.7%). In conclusion, older people from the community transferred to ED were unlikely to have a documented Advance Care Plan. Those from residential aged care who were cognitively impaired more frequently had an Advance Care Plan. In the ED, decisions of care did not appear to be influenced by the presence or absence of Advance Care Plans, but length of hospital admission was shorter for those with an Advance Care Plan. © 2014 John Wiley & Sons Ltd.

  8. Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.

    PubMed

    Ugalde, Anna; O'Callaghan, Clare; Byard, Clem; Brean, Samantha; MacKay, Jenelle; Boltong, Anna; Davoren, Sondra; Lawson, Deborah; Parente, Phillip; Michael, Natasha; Livingston, Patricia

    2018-05-11

    While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful. This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.

  9. Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia.

    PubMed

    Ampe, Sophie; Sevenants, Aline; Coppens, Evelien; Spruytte, Nele; Smets, Tinne; Declercq, Anja; van Audenhove, Chantal

    2015-05-01

    To evaluate the effects of 'we DECide', an educational intervention for nursing home staff on shared decision-making in the context of advance care planning for residents with dementia. Advance care planning (preparing care choices for when persons no longer have decision-making capacity) is of utmost importance for nursing home residents with dementia, but is mostly not realized for this group. Advance care planning consists of discussing care choices and making decisions and corresponds to shared decision-making (the involvement of persons and their families in care and treatment decisions). This quasi-experimental pre-test-post-test study is conducted in 19 nursing homes (Belgium). Participants are nursing home staff. 'We DECide' focuses on three crucial moments for discussing advance care planning: the time of admission, crisis situations and everyday conversations. The 'ACP-audit' assesses participants' views on the organization of advance care planning (organizational level), the 'OPTION scale' evaluates the degree of shared decision-making in individual conversations (clinical level) and the 'IFC-SDM Questionnaire' assesses participants' views on Importance, Frequency and Competence of realizing shared decision-making (clinical level). (Project funded: July 2010). The study hypothesis is that 'we DECide' results in a higher realization of shared decision-making in individual conversations on advance care planning. A better implementation of advance care planning will lead to a higher quality of end-of-life care and more person-centred care. We believe our study will be of interest to researchers and to professional nursing home caregivers and policy-makers. © 2014 John Wiley & Sons Ltd.

  10. Nurses' views regarding implementing advance care planning for older people: a systematic review and synthesis of qualitative studies.

    PubMed

    Ke, Li-Shan; Huang, Xiaoyan; O'Connor, Margaret; Lee, Susan

    2015-08-01

    To explore nurses' views regarding implementing advance care planning for older people. Advance care planning is recommended as a way for older people to discuss their future care with family members and health professionals. Nurses play key roles in the process of advance care planning, including ensuring that patients are informed of their rights and that decisions are known to, and respected by, the health care team. Thus, understanding of nurses' experiences and perspectives regarding implementing advance care planning for older people is a significant topic for review. Qualitative meta-synthesis. Four databases including CINAHL plus, Medline [EBSCOhost], EMBASE, and PsycINFO were searched, and 1844 articles were initially screened. Finally, 18 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified regarding implementation of advance care planning: perceived disadvantages and advantages of advance directives; nurses' responsibility and roles; facilitators and barriers; and nurses' needs and recommendations. Nurses felt that advance directives provided more advantages than disadvantages. Nurses generally believed that they were well positioned to engage in advance care planning conversations. Nurses perceived barriers relating to older people, families, environment, time, culture, cost, language and knowledge of health care teams with regard to advance care planning. In nurses' needs, education and support were highlighted. This study provides useful knowledge for implementing advance care planning through illustrating nurses' experiences and perspectives. The results showed that nurses were more concerned about barriers in relation to working environment, teamwork, time and knowledge of health care team members than older people's characteristics, when implementing advance care planning. The findings provide nurses and administrators with information to develop related policies and education. Additionally, the

  11. How healthcare systems evaluate their advance care planning initiatives: Results from a systematic review.

    PubMed

    Biondo, Patricia D; Lee, Lydia D; Davison, Sara N; Simon, Jessica E

    2016-09-01

    Advance care planning initiatives are being implemented across healthcare systems around the world, but how best to evaluate their implementation is unknown. To identify gaps and/or redundancies in current evaluative strategies to help healthcare systems develop future evaluative frameworks for ACP. Systematic review. Peer-reviewed and gray literature searches were conducted till February 2015 to answer: "What methods have healthcare systems used to evaluate implementation of advance care planning initiatives?" A PICOS framework was developed to identify articles describing the implementation and evaluation of a health system-level advance care planning initiative. Outcome measures were mapped onto a conceptual quality indicator framework based on the Institute of Medicine and Donabedian models of healthcare quality. A total of 46 studies met inclusion criteria for analysis. Most articles reported on single parts of a healthcare system (e.g. continuing care). The most common outcome measures pertained to document completion, followed by healthcare resource use. Patient-, family-, or healthcare provider-reported outcomes were less commonly measured. Concordance measures (e.g. dying in place of choice) were reported by only 26% of studies. The conceptual quality indicator framework identified gaps and redundancies in measurement and is presented as a potential foundation from which to develop a comprehensive advance care planning evaluation framework. Document completion is frequently used to evaluate advance care planning program implementation; capturing the quality of care appears to be more difficult. This systematic review provides health system administrators with a comprehensive summary of measures used to evaluate advance care planning and may identify gaps in evaluation within their local context. © The Author(s) 2016.

  12. Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies.

    PubMed

    Ke, Li-Shan; Huang, Xiaoyan; Hu, Wen-Yu; O'Connor, Margaret; Lee, Susan

    2017-05-01

    Studies have indicated that family members or health professionals may not know or predict their older relatives' or patients' health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging. To understand the experiences and perspectives of older people regarding advance care planning. A systematic review of qualitative studies and meta-synthesis was conducted. CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched. A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people's willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care. Older people's perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people's attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.

  13. Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers.

    PubMed

    Hutchison, Lauren A; Raffin-Bouchal, Donna S; Syme, Charlotte A; Biondo, Patricia D; Simon, Jessica E

    2017-09-01

    Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until "illness burden necessitates," so there is little "advance" care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient's illness trajectory, distinguished from end-of-life decision making.

  14. Initial Efficacy Testing of an Autobiographical Memory Intervention on Advance Care Planning for Patients With Terminal Cancer.

    PubMed

    Brohard, Cheryl

    2017-11-01

    To test the efficacy of a novel intervention to facilitate advance care planning.
. Exploratory, quasiexperimental pilot study with two independent groups.
. A large hospice located in the southwestern United States. 
. A convenience sample of 50 participants with terminal cancer enrolled in hospice.
. An autobiographical memory (ABM) intervention used the participants' experiences with cancer and end of life for the purpose of directing advance care planning.
. Two domains of advance care planning, decision making and communication, were measured in relation to 11 variables. The ABM intervention was nonthreatening, short in duration, and easily completed with participants as they recalled, without hesitation, specific personal memories of family and friends who had died and their advance care plans. The Mann-Whitney nonparametric test revealed that participants in the experimental group had a higher average rank than those in the control group for communicating the decision about antibiotics, as well as exhibited a trend toward significance for five other advance care planning variables.
. Findings showed that directive ABMs may be effective in influencing the decision making and communication of advance care planning for terminally ill patients with cancer.
. The current level of understanding about using the ABM intervention suggests that nurses can initiate an advance care planning conversation using this approach.

  15. Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey.

    PubMed

    Beck, Esther-Ruth; McIlfatrick, Sonja; Hasson, Felicity; Leavey, Gerry

    2017-09-01

    To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. Nursing home managers in a region in the UK (n = 178). A response rate of 66% (n = 116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. Increased cognisance of the context in which advance care

  16. Future care planning: a first step to palliative care for all patients with advanced heart disease.

    PubMed

    Denvir, M A; Murray, S A; Boyd, K J

    2015-07-01

    Palliative care is recommended for patients with end-stage heart failure with several recent, randomised trials showing improvements in symptoms and quality of life and more studies underway. Future care planning provides a framework for discussing a range of palliative care problems with patients and their families. This approach can be introduced at any time during the patient's journey of care and ideally well in advance of end-of-life care. Future care planning is applicable to a wide range of patients with advanced heart disease and could be delivered systematically by cardiology teams at the time of an unplanned hospital admission, akin to cardiac rehabilitation for myocardial infarction. Integrating cardiology care and palliative care can benefit many patients with advanced heart disease at increased risk of death or hospitalisation. Larger, randomised trials are needed to assess the impact on patient outcomes and experiences. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  17. Individualised advance care planning in children with life-limiting conditions.

    PubMed

    Loeffen, Erik A H; Tissing, Wim J E; Schuiling-Otten, Meggi A; de Kruiff, Chris C; Kremer, Leontien C M; Verhagen, A A Eduard

    2018-05-01

    In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  18. Advance care planning with individuals experiencing homelessness: Literature review and recommendations for public health practice.

    PubMed

    Hubbell, Sarah A

    2017-09-01

    Vulnerable populations in the United States experience disparities in access to advance care planning and may have significant unmet health care needs at the end of life, including unrelieved suffering. People who are homeless have increased morbidity and mortality risks, yet lack opportunities to communicate end-of-life preferences. This paper includes a narrative literature review of advance care planning interventions and qualitative investigations into end-of-life concerns among people experiencing homelessness. Trials of clinician-guided interventions with homeless individuals demonstrated effectiveness in achieving advance directive completion and surrogate decision-maker designation. End-of-life concerns among homeless persons included fears of dying alone, dying unnoticed, or remaining unidentified after death. Research participants also reported concerns regarding burial and notification of family members. Public health practitioners should facilitate advance care planning for people who are homeless by providing opportunities for education and discussion on care options and advance directives. © 2017 Wiley Periodicals, Inc.

  19. [Who should decide at the end of life? International practice of advance care planning and possibilities for adaptation in Hungary].

    PubMed

    Busa, Csilla; Zeller, Judit; Csikós, Ágnes

    2018-01-01

    At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients' preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients' preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131-140.

  20. Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

    PubMed

    Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George

    2018-03-01

    In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

  1. Advance Care Planning: is quality end of life care really that simple?

    PubMed

    Johnson, Stephanie; Kerridge, Ian; Butow, Phyllis N; Tattersall, Martin H N

    2017-04-01

    The routine implementation of Advance Care Planning (ACP) is now a prominent feature of policy directed at improving end of life care in Australia. However, while complex ACP interventions may modestly reduce medical care at the end of life and enable more people to die at home or outside of acute hospital settings, existing legal, organisational, cultural and conceptual barriers limit the implementation and utility of ACP. We suggest that meaningful improvements in end of life care will not result from the institutionalisation of ACP but from more significant changes to the design and delivery of care. © 2017 Royal Australasian College of Physicians.

  2. Development and Validation of a Questionnaire to Detect Behavior Change in Multiple Advance Care Planning Behaviors

    PubMed Central

    Sudore, Rebecca L.; Stewart, Anita L.; Knight, Sara J.; McMahan, Ryan D.; Feuz, Mariko; Miao, Yinghui; Barnes, Deborah E.

    2013-01-01

    Introduction Advance directives have traditionally been considered the gold standard for advance care planning. However, recent evidence suggests that advance care planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. The goal of our study was to develop and validate a survey to measure the full advance care planning process. Methods The Advance Care Planning Engagement Survey assesses “Process Measures” of factors known from Behavior Change Theory to affect behavior (knowledge, contemplation, self-efficacy, and readiness, using 5-point Likert scales) and “Action Measures” (yes/no) of multiple behaviors related to surrogate decision makers, values and quality of life, flexibility for surrogate decision making, and informed decision making. We administered surveys at baseline and 1 week later to 50 diverse, older adults from San Francisco hospitals. Internal consistency reliability of Process Measures was assessed using Cronbach's alpha (only continuous variables) and test-retest reliability of Process and Action Measures was examined using intraclass correlations. For discriminant validity, we compared Process and Action Measure scores between this cohort and 20 healthy college students (mean age 23.2 years, SD 2.7). Results Mean age was 69.3 (SD 10.5) and 42% were non-White. The survey took a mean of 21.4 minutes (±6.2) to administer. The survey had good internal consistency (Process Measures Cronbach's alpha, 0.94) and test-retest reliability (Process Measures intraclass correlation, 0.70; Action Measures, 0.87). Both Process and Action Measure scores were higher in the older than younger group, p<.001. Conclusion A new Advance Care Planning Engagement Survey that measures behavior change (knowledge, contemplation, self-efficacy, and readiness) and multiple advance care planning actions demonstrates good reliability and validity. Further research is needed to assess whether survey scores

  3. Knowledge regarding advance care planning: A systematic review.

    PubMed

    Kermel-Schiffman, Ile; Werner, Perla

    2017-11-01

    Lack of knowledge is one of the main reasons for the low rates of completion of Advance Care Planning (ACP). The purpose of this study was to systematically review the existing literature on knowledge regarding Advance Care Planning. A systematic search of the literature was made in CINHAL, AgeLine, PubMed, PsyINFO and SocINDEX, from 1994 till May 2016. We identified 37 articles that satisfied the inclusion criteria: 35 were quantitative, one was qualitative and one used mixed methods. Most of the studies (n=23) were conducted in the United States and participants in most of the studies (n=22) were professionals. A variety of aspects of ACP were examined, regarding subjective and objective knowledge. Seventeen studies found that participants knew some aspects of ACP, but didn't know others. Inconsistencies were found in the types of instruments and the number of items used to assess knowledge. More effort should be invested in increasing knowledge regarding ACP among professionals and lay people. Developing validated tools to measure objective and subjective knowledge in both populations might be a first step in this direction. Copyright © 2017 Elsevier B.V. All rights reserved.

  4. Randomized, Controlled Trial of an Advance Care Planning Video Decision Support Tool for Patients With Advanced Heart Failure.

    PubMed

    El-Jawahri, Areej; Paasche-Orlow, Michael K; Matlock, Dan; Stevenson, Lynne Warner; Lewis, Eldrin F; Stewart, Garrick; Semigran, Marc; Chang, Yuchiao; Parks, Kimberly; Walker-Corkery, Elizabeth S; Temel, Jennifer S; Bohossian, Hacho; Ooi, Henry; Mann, Eileen; Volandes, Angelo E

    2016-07-05

    Conversations about goals of care and cardiopulmonary resuscitation (CPR)/intubation for patients with advanced heart failure can be difficult. This study examined the impact of a video decision support tool and patient checklist on advance care planning for patients with heart failure. This was a multisite, randomized, controlled trial of a video-assisted intervention and advance care planning checklist versus a verbal description in 246 patients ≥64 years of age with heart failure and an estimated likelihood of death of >50% within 2 years. Intervention participants received a verbal description for goals of care (life-prolonging care, limited care, and comfort care) and CPR/intubation plus a 6-minute video depicting the 3 levels of care, CPR/intubation, and an advance care planning checklist. Control subjects received only the verbal description. The primary analysis compared the proportion of patients preferring comfort care between study arms immediately after the intervention. Secondary outcomes were CPR/intubation preferences and knowledge (6-item test; range, 0-6) after intervention. In the intervention group, 27 (22%) chose life-prolonging care, 31 (25%) chose limited care, 63 (51%) selected comfort care, and 2 (2%) were uncertain. In the control group, 50 (41%) chose life-prolonging care, 27 (22%) selected limited care, 37 (30%) chose comfort care, and 8 (7%) were uncertain (P<0.001). Intervention participants (compared with control subjects) were more likely to forgo CPR (68% versus 35%; P<0.001) and intubation (77% versus 48%; P<0.001) and had higher mean knowledge scores (4.1 versus 3.0; P<0.001). Patients with heart failure who viewed a video were more informed, more likely to select a focus on comfort, and less likely to desire CPR/intubation compared with patients receiving verbal information only. URL: http://www.clinicaltrials.gov. Unique identifier: NCT01589120. © 2016 American Heart Association, Inc.

  5. Advance care planning for adolescent patients with life-threatening neurological conditions: a survey of Japanese paediatric neurologists.

    PubMed

    Yotani, Nobuyuki; Kizawa, Yoshiyuki; Shintaku, Haruo

    2017-01-01

    To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >1 year. About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.

  6. The views of patients with severe chronic obstructive pulmonary disease on advance care planning: a qualitative study.

    PubMed

    MacPherson, Anna; Walshe, Catherine; O'Donnell, Valerie; Vyas, Aashish

    2013-03-01

    Chronic obstructive pulmonary disease (COPD) is a major cause of death worldwide and there are concerns that end-of-life care for these patients is inadequate. Advance care planning is encouraged, with the hope that it will improve communication and avoid unwanted interventions, which have been particular concerns; in practice, these discussions rarely occur. We have little knowledge of the views of patients with COPD on advance care planning. Understanding this could help integrate advance care planning into the routine management of patients with COPD. To explore the views of people with severe COPD about advance care planning. Qualitative design, with data collection incorporating audio recorded semi-structured interviews. Analysis followed a grounded theory approach. Patients with severe COPD (n =10, Gold Standards Framework criteria) were recruited from primary and secondary care settings. Participants felt they had not been given enough information about their diagnosis and prognosis, and were keen for more discussion with healthcare professionals. They wanted more involvement in decisions about their treatment when those decisions were required. Participants were happy to discuss their general views about future care, but felt uncomfortable with the traditional model of binding 'advance directives'. Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.

  7. [Advance care planning and severe chronic diseases].

    PubMed

    Diestre Ortín, Germán; González Sequero, Vanessa; Collell Domènech, Núria; Pérez López, Francisca; Hernando Robles, Pablo

    2013-01-01

    Advanced care planning (ACP) helps in make decisions on the health problems of people who have lost the capacity for informed consent. It has proven particularly useful in addressing the end of life. The aim of this study was to determine the prevalence of ACP in patients with severe chronic diseases. Review of medical records of patients with dementia, amyotrophic lateral sclerosis, Parkinson's disease, chronic obstructive pulmonary disease or interstitial lung disease, heart failure, chronic kidney disease on dialysis and cancer, all in advanced stages. We collected data on living wills or registered prior decisions by the physician according to clinical planned. A total of 135 patients were studied. There was a record of ACP in 22 patients (16.3%). In most of them it was planned not to start any vital treatment in the event of high risk of imminent death and lacking the ability to make decisions. Only two patients were had a legal living will. The registration of ACP is relatively low, and this can affect decision-making in accordance with the personal values of patients when they do not have the capacity to exercise informed consent. Copyright © 2012 SEGG. Published by Elsevier Espana. All rights reserved.

  8. Where There's a Will: The Link Between Estate Planning and Disparities in Advance Care Planning by White and Black Older Adults.

    PubMed

    Koss, Catheryn S; Baker, Tamara A

    2018-03-01

    Data from the Health and Retirement Study ( n = 6,946) were used to test whether differences in estate planning accounted for disparities in advance care planning between White and Black older adults. White participants were more likely to have advance directives after controlling for demographic, health, and financial variables. When estate planning was also controlled, the odds of having an advance directive were equal for White and Black participants. In contrast, Whites remained more likely to discuss end-of-life preferences after controlling for demographic, health, financial, and estate planning variables. White participants were almost four times as likely to have wills or trusts. Wealth, income, and home ownership were predictive of estate planning. Financial disparities contributed to lower rates of estate planning which in turn explained in large part why Black older adults were less likely to have advance directives but did not account for race disparities in advance care discussion.

  9. "Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning.

    PubMed

    Lotz, Julia Desiree; Daxer, Marion; Jox, Ralf J; Borasio, Gian Domenico; Führer, Monika

    2017-09-01

    Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning. We aimed to investigate parents' views and needs regarding pediatric advance care planning. We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña. We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender. Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning. Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.

  10. Advance care planning in a multi-cultural family-centric community: A qualitative study of healthcare professionals', patients' and caregivers' perspectives.

    PubMed

    Menon, Sumytra; Kars, Marijke; Malhotra, Chetna; Campbell, Alastair V; van Delden, J J M

    2018-05-15

    Advance care planning has been shown to improve end-of-life care but it was developed in the USA and most research has been conducted in western communities. We aimed to study the attitudes and perceptions of patients with life-limiting illnesses, informal caregivers, doctors, nurses and medical social workers regarding advance care planning in a multi-cultural family-centric community. We conducted an explorative qualitative study, using focus groups and individual in-depth interviews. We used purposive sampling techniques to recruit 61 adults (15 doctors, 13 nurses, 5 medical social workers, 15 patients and 13 caregivers) from multiple healthcare settings across the country. The participants are genuinely anxious about the implementation of advance care planning. They had positive and negative expectations of advance care planning. Many were confused about the legal framework for healthcare decision-making and expected advance care planning to be of limited value because family members, rather than the patient, were usually the key decision-makers. A nuanced approach to advance care planning which considers the family network is required in multi-cultural family centric communities. Policies should be reconciled to create a more consistent message that respects patients, the family, and is legally coherent. Further research could focus on adaptations of advance care planning to promote its acceptance in such communities. Copyright © 2018. Published by Elsevier Inc.

  11. Facilitating advance care planning in community palliative care: conversation starters across the client journey.

    PubMed

    Blackford, Jeanine; Street, Annette F

    2013-03-01

    This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

  12. "I'm still here": Exploring what matters to people with intellectual disability during advance care planning.

    PubMed

    McKenzie, Nicola; Mirfin-Veitch, Brigit; Conder, Jennifer; Brandford, Sharon

    2017-11-01

    This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews. There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning. The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end. © 2017 John Wiley & Sons Ltd.

  13. Advance care planning for residents in aged care facilities: what is best practice and how can evidence-based guidelines be implemented?

    PubMed

    Lyon, Cheryl

    2007-12-01

    Background  Advance care planning in a residential care setting aims to assist residents to make decisions about future healthcare and to improve end-of-life care through medical and care staff knowing and respecting the wishes of the resident. The process enables individuals and others who are important to them, to reflect on what is important to the resident including their beliefs/values and preferences about care when they are dying. This paper describes a project conducted as part of the Joanna Briggs Institute Clinical Aged Care Fellowship Program implemented at the Manningham Centre in metropolitan Melbourne in a unit providing services for 46 low and high care residents. Objectives  The objectives of the study were to document implementation of best practice in advance care planning in a residential aged care facility using a cycle of audit, feedback and re-audit cycle audit with a clinical audit software program, the Practical Application of Clinical Evidence System. The evidence-based guidelines found in 'Guidelines for a Palliative Approach in Residential Aged Care' were used to inform the process of clinical practice review and to develop a program to implement advance care planning. Results  The pre-implementation audit results showed that advance care planning practice was not based on high level evidence as initial compliance with five audit criteria was 0%. The barriers to implementation that became apparent during the feedback stage included the challenge of creating a culture where advance care planning policy, protocols and guidelines could be implemented, and advance care planning discussions held, by adequately prepared health professionals and carers. Opportunities were made to equip the resident to discuss their wishes with family, friends and healthcare staff. Some residents made the decision to take steps to formally document those wishes and/or appoint a Medical Enduring Power of Attorney to act on behalf of the resident when they

  14. Health behavior change in advance care planning: an agent-based model.

    PubMed

    Ernecoff, Natalie C; Keane, Christopher R; Albert, Steven M

    2016-02-29

    A practical and ethical challenge in advance care planning research is controlling and intervening on human behavior. Additionally, observing dynamic changes in advance care planning (ACP) behavior proves difficult, though tracking changes over time is important for intervention development. Agent-based modeling (ABM) allows researchers to integrate complex behavioral data about advance care planning behaviors and thought processes into a controlled environment that is more easily alterable and observable. Literature to date has not addressed how best to motivate individuals, increase facilitators and reduce barriers associated with ACP. We aimed to build an ABM that applies the Transtheoretical Model of behavior change to ACP as a health behavior and accurately reflects: 1) the rates at which individuals complete the process, 2) how individuals respond to barriers, facilitators, and behavioral variables, and 3) the interactions between these variables. We developed a dynamic ABM of the ACP decision making process based on the stages of change posited by the Transtheoretical Model. We integrated barriers, facilitators, and other behavioral variables that agents encounter as they move through the process. We successfully incorporated ACP barriers, facilitators, and other behavioral variables into our ABM, forming a plausible representation of ACP behavior and decision-making. The resulting distributions across the stages of change replicated those found in the literature, with approximately half of participants in the action-maintenance stage in both the model and the literature. Our ABM is a useful method for representing dynamic social and experiential influences on the ACP decision making process. This model suggests structural interventions, e.g. increasing access to ACP materials in primary care clinics, in addition to improved methods of data collection for behavioral studies, e.g. incorporating longitudinal data to capture behavioral dynamics.

  15. Advance Care Planning Does Not Adversely Affect Hope or Anxiety Among Patients With Advanced Cancer.

    PubMed

    Green, Michael J; Schubart, Jane R; Whitehead, Megan M; Farace, Elana; Lehman, Erik; Levi, Benjamin H

    2015-06-01

    Many physicians avoid advance care planning (ACP) discussions because they worry such conversations will lead to psychological distress. To investigate whether engaging in ACP using online planning tools adversely affects hope, hopelessness, or anxiety among patients with advanced cancer. Patients with advanced cancer and an estimated survival of two years or less (Intervention group) and a Control group were recruited at a tertiary care academic medical center (2007-2012) to engage in ACP using an online decision aid ("Making Your Wishes Known"). Pre/post and between-group comparisons were made, including hope (Herth Hope Index), hopelessness (Beck Hopelessness Scale), and anxiety (State Trait Anxiety Inventory). Secondary outcomes included ACP knowledge, self-determination, and satisfaction. A total of 200 individuals completed the study. After engaging in ACP, there was no decline in hope or increase in hopelessness in either the Control or Intervention group. Anxiety was likewise unchanged in the Control group but decreased slightly in the Intervention group. Knowledge of ACP (% correct answers) increased in both the groups, but more so in the Intervention group (13% increase vs. 4%; P<0.01). Self-determination increased slightly in both groups, and satisfaction with the ACP process was greater (P<0.01) in the Intervention than Control group. Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients' psychological well-being. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  16. An environmental scan of advance care planning decision AIDS for patients undergoing major surgery: a study protocol.

    PubMed

    Aslakson, Rebecca A; Schuster, Anne L R; Miller, Judith; Weiss, Matthew; Volandes, Angelo E; Bridges, John F P

    2014-01-01

    Patients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families. The purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery. This study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids. This environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.

  17. End-of-Life Treatment Preferences: A Key to Reducing Ethnic/Racial Disparities in Advance Care Planning?

    PubMed Central

    Garrido, Melissa M.; Harrington, Shannon T.; Prigerson, Holly G.

    2014-01-01

    Background This study sought to identify targets for interventions to reduce end-of-life care disparities among patients with advanced cancer. To do this, we evaluated the degree to which end-of-life care values and preferences are associated with advance care planning within racial/ethnic minority groups. Methods The Coping with Cancer study recruited patients with advanced cancer from outpatient clinics in five states from 2002-2008. We examined rates of one type of advance care planning, do not resuscitate [DNR] orders, reported at baseline interviews by 606 patients. Bivariate tests determined associations among DNR order completion, religious values, and treatment preferences within racial/ethnic groups. Results Non-Latino White patients were significantly more likely to have a DNR order (45%) than Black (25%) and Latino (20%) patients (p <.001). Preferences against specific life-prolonging treatments (e.g. chemotherapy, ventilation) were the only factor significantly associated with higher DNR order likelihood in each group, with non-Latino White patients more likely than Latino or Black patients to express preferences against life-prolonging care (e.g. 26% of non-Latino White, 46% of Black, and 41% of Latino patients wanted a feeding tube if it would extend life for one more day, p<.001). Conclusions Preferences against life-prolonging care differ dramatically by race/ethnicity, but they are uniformly significantly associated with DNR order completion rates across racial/ethnic groups of patients with advanced cancer. Advance care planning interventions that target preferences associated with DNR orders across racial/ethnic groups may reach a broad patient population and reduce end-of-life care disparities. PMID:25145489

  18. Advance care planning in Australia: what does the law say?

    PubMed

    Carter, Rachel Z; Detering, Karen M; Silvester, William; Sutton, Elizabeth

    2016-09-01

    Advance care planning (ACP) assists people to plan for their future health and personal care. ACP encourages a person to legally appoint a substitute decision maker (SDM) and to document any specific wishes regarding their future health care in an advance care directive (ACD). Formal documentation of wishes increases the chances that a person's wishes will be known and followed. However, one of the biggest impediments for doctors following the person's wishes is uncertainty surrounding the law, which is complicated and varies between the states and territories of Australia. SDM legislation varies regarding who can be appointed, how they are appointed, the powers that an SDM can be given and the decision-making principles that the SDM needs to follow. In circumstances where an SDM has not been appointed, the hierarchy for determining the default SDM for a person also varies between states. Although many states have legislated ACD forms allowing for documentation of a person's health care wishes, these forms allow for different things to be documented and have different requirements to be valid. The Australian population is mobile, with patients frequently moving between states. The status of ACP documentation created in a state other than the state in which a patient requires treatment also varies, with some states recognising interstate ACDs whereas others do not. This article outlines the legal status of ACDs, within Australian jurisdictions, including the legal validity of interstate ACDs, and argues that uniform laws and documents would assist with awareness and understanding of, and compliance with, ACDs.

  19. Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel

    PubMed Central

    Sudore, Rebecca L.; Lum, Hillary D.; You, John J.; Hanson, Laura C.; Meier, Diane E.; Pantilat, Steven Z.; Matlock, Daniel D.; Rietjens, Judith A. C.; Korfage, Ida J.; Ritchie, Christine S.; Kutner, Jean S.; Teno, Joan M.; Thomas, Judy; McMahan, Ryan D.; Heyland, Daren K.

    2017-01-01

    Background Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives. Objective To develop a consensus definition of ACP for adults. Design Delphi Panel Setting/Participants Participants included a multidisciplinary panel of international ACP experts consisting of 52 clinicians, researchers, and policy leaders from 4 countries, and a patient/surrogate advisory committee. Measurements We conducted 10 rounds of a modified Delphi method and qualitatively analyzed panelists’ input. Panelists identified several themes lacking consensus, and iteratively discussed and developed a final consensus definition. Results Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients’ values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.” The panel also described strategies to best support adults in ACP. Conclusions A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives. PMID:28062339

  20. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel.

    PubMed

    Sudore, Rebecca L; Lum, Hillary D; You, John J; Hanson, Laura C; Meier, Diane E; Pantilat, Steven Z; Matlock, Daniel D; Rietjens, Judith A C; Korfage, Ida J; Ritchie, Christine S; Kutner, Jean S; Teno, Joan M; Thomas, Judy; McMahan, Ryan D; Heyland, Daren K

    2017-05-01

    Despite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives. The aim of this study was to develop a consensus definition of ACP for adults. We convened a Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee. We conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists' input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition. Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: "Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." The panel also described strategies to best support adults in ACP. A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives. Published by Elsevier Inc.

  1. Learning to Facilitate Advance Care Planning: The Novice Social Worker's Experience

    ERIC Educational Resources Information Center

    Washington, Karla; Bowland, Sharon; Mueggenburg, Kay; Pederson, Margaret; Otten, Sheila; Renn, Tanya

    2014-01-01

    Professional leaders have identified clear roles for social workers involved in advance care planning (ACP), a facilitated process whereby individuals identify their preferences for future medical care; yet information about effective teaching practices in this area is scant. This study reports on the experiences of 14 social workers who…

  2. An Assessment of Social Diffusion in the Respecting Choices Advance Care Planning Program

    ERIC Educational Resources Information Center

    Moorman, Sara M.; Carr, Deborah; Kirchhoff, Karin T.; Hammes, Bernard J.

    2012-01-01

    This study examines the potential social diffusion effects of the Respecting Choices advance care planning program administered in La Crosse, Wisconsin, since 1991. The program produces educational materials for patients, trains facilitators to help patients prepare for end of life, and ensures that advance directives are connected to patients'…

  3. A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation

    PubMed Central

    Mader, Patrick; O'Callaghan, Clare; Boyd, Leanne

    2018-01-01

    Background Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. ACPTalk aimed to provide religion-specific advance care planning content and complement existing resources. Objective The purpose of this paper was to utilize the context, input, process, and product (CIPP) framework to conduct a formative and summative evaluation of ACPTalk. Methods The CIPP framework was used, which revolves around 4 aspects of evaluation: context, input, process, and product. Context: health professionals’ solutions for the website were determined through thematic analysis of exploratory key stakeholder interviews. Included religions were determined through an environmental scan, Australian population statistics, and documentary analysis of project steering committee meeting minutes. Input: Project implementation and challenges were examined through documentary analysis of project protocols and meeting minutes. Process: To ensure religion-specific content was accurate and appropriate, a website prototype was built with content review and functionality testing by representatives from religious and cultural organizations and other interested health care organizations who completed a Web-based survey. Product: Website analytics were used to report utilization, and stakeholder perceptions were captured through interviews and a website survey. Results Context: A total of 16 key stakeholder health professional (7 general practitioners, 2 primary health nurses, and 7 palliative care nurses) interviews were analyzed. Website solutions included religious and cultural

  4. Embracing a broad spirituality in end of life discussions and advance care planning.

    PubMed

    Churchill, Larry R

    2015-04-01

    Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

  5. Use of a Computer Program for Advance Care Planning with African American Participants.

    PubMed

    Markham, Sarah A; Levi, Benjamin H; Green, Michael J; Schubart, Jane R

    2015-02-01

    The authors wish to acknowledge the support and assistance of Dr. William Lawrence for his contribution to the M.A.UT model used in the decision aid, Making Your Wishes Known: Planning Your Medical Future (MYWK), Dr. Cheryl Dellasega for her leadership in focus group activities, Charles Sabatino for his review of legal aspects of MYWK, Dr. Robert Pearlman and his collaborative team for use of the advance care planning booklet "Your Life, Your Choices," Megan Whitehead for assistance in grant preparation and project organization, and the Instructional Media Development Center at the University of Wisconsin as well as JPL Integrated Communications for production and programming of MYWK. For various cultural and historical reasons, African Americans are less likely than Caucasians to engage in advance care planning (ACP) for healthcare decisions. This pilot study tested whether an interactive computer program could help overcome barriers to effective ACP among African Americans. African American adults were recruited from traditionally Black churches to complete an interactive computer program on ACP, pre-/post-questionnaires, and a follow-up phone interview. Eighteen adults (mean age =53.2 years, 83% female) completed the program without any problems. Knowledge about ACP significantly increased following the computer intervention (44.9% → 61.3%, p=0.0004), as did individuals' sense of self-determination. Participants were highly satisfied with the ACP process (9.4; 1 = not at all satisfied, 10 = extremely satisfied), and reported that the computer-generated advance directive accurately reflected their wishes (6.4; 1 = not at all accurate, 7 = extremely accurate). Follow-up phone interviews found that >80% of participants reported having shared their advance directives with family members and spokespeople. Preliminary evidence suggests that an interactive computer program can help African Americans engage in effective advance care planning, including creating an

  6. Incidence and Predictors of Advance Care Planning Among Persons with Cognitive Impairment

    PubMed Central

    Garand, Linda; Dew, Mary Amanda; Lingler, Jennifer H.; DeKosky, Steven T.

    2010-01-01

    Objective Persons with mild cognitive impairment (MCI) and Alzheimer’s disease (AD) are at heightened risk for future decisional incapacity. We sought to characterize advance care planning (ACP) rates over time in individuals who had no advance directives (living will or durable power of attorney) in place when they initially presented for a cognitive evaluation. Design Retrospective analysis of data that had been prospectively collected. Setting Alzheimer’s Disease Research Center memory disorders clinic. Participants Persons (N=127) with a diagnosis of MCI or early AD (n = 72) or moderate to severe AD (n = 55) and no advance directives upon initial presentation for a cognitive evaluation. Measurements Extraction of responses to items pertaining to advance care planning assessed during annual semi-structured interviews. Results By 5 years of follow-up, 39% of the sample had initiated ACP, with little difference by baseline diagnosis. Younger subjects (under 65 years old) were significantly more likely to initiate advance directives (43%) than were older subjects (37%). This age effect was more pronounced in men than women as well as in married subjects, those with a family history of dementia, no depressive disorder, and subjects with moderate to severe AD (versus those with MCI or early AD) at baseline. Conclusion Only a minority of subjects initiated ACPs. The findings suggest the need for interventions aimed at enhancing ACP completion rates, particularly among older adults with cognitive impairment since these individuals may have a timed-limited opportunity to plan for future medical, financial, and other major life decisions. PMID:21785291

  7. High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: A pilot study.

    PubMed

    Van Scoy, Lauren J; Green, Michael J; Dimmock, Anne Ef; Bascom, Rebecca; Boehmer, John P; Hensel, Jessica K; Hozella, Joshua B; Lehman, Erik B; Schubart, Jane R; Farace, Elana; Stewart, Renee R; Levi, Benjamin H

    2016-09-01

    Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. Pre-intervention questionnaires measured advance care planning knowledge. Post-intervention questionnaires measured: (1) advance care planning knowledge; (2) satisfaction with tool; (3) decisional conflict; and (4) accuracy of the resultant advance directive. Comparisons were made between patients with heart failure and chronic obstructive pulmonary disease. Over 90% of the patients with heart failure (n = 24) or chronic obstructive pulmonary disease (n = 25) reported being "satisfied" or "highly satisfied" with the tool across all satisfaction domains; over 90% of participants rated the resultant advance directive as "very accurate." Participants reported low decisional conflict. Advance care planning knowledge scores rose by 18% (p < 0.001) post-intervention. There were no significant differences between participants with heart failure and chronic obstructive pulmonary disease. Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning. © The Author(s) 2016.

  8. Do older adults with Alzheimer's disease engage in estate planning and advance care planning preparation?

    PubMed

    Choi, Shinae; Kim, Minjung; McDonough, Ian M

    2018-04-18

    This study investigated the estate planning and advance care planning (ACP) of older adults diagnosed with Alzheimer's disease (AD) for the presence of (1) a valid will, (2) a durable power of attorney for health care, and (3) a living will. We analyzed 10,273 adults aged 65 and older from the 2012 Health and Retirement Study (HRS) using multilevel logistic regression. We found that a diagnosis of AD was significantly associated with the ACP variables. Older adults with AD were more likely to assign a durable power of attorney for health care and have a written living will than older adults without an AD diagnosis. However, we found no significant association between a diagnosis of AD and having a valid will. These findings were robust when adjusting for demographic and socioeconomic variables. Other factors decreased engagement in estate planning and ACP, including lower socioeconomic status, being male, and being a minority. Our findings suggest that a diagnosis of AD is associated with more engagement in ACP for individuals and their families, but important barriers exist for people with fewer resources.

  9. A Website Supporting Sensitive Religious and Cultural Advance Care Planning (ACPTalk): Formative and Summative Evaluation.

    PubMed

    Pereira-Salgado, Amanda; Mader, Patrick; O'Callaghan, Clare; Boyd, Leanne

    2018-04-16

    Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. ACPTalk aimed to provide religion-specific advance care planning content and complement existing resources. The purpose of this paper was to utilize the context, input, process, and product (CIPP) framework to conduct a formative and summative evaluation of ACPTalk. The CIPP framework was used, which revolves around 4 aspects of evaluation: context, input, process, and product. Context: health professionals' solutions for the website were determined through thematic analysis of exploratory key stakeholder interviews. Included religions were determined through an environmental scan, Australian population statistics, and documentary analysis of project steering committee meeting minutes. Input: Project implementation and challenges were examined through documentary analysis of project protocols and meeting minutes. Process: To ensure religion-specific content was accurate and appropriate, a website prototype was built with content review and functionality testing by representatives from religious and cultural organizations and other interested health care organizations who completed a Web-based survey. Product: Website analytics were used to report utilization, and stakeholder perceptions were captured through interviews and a website survey. Context: A total of 16 key stakeholder health professional (7 general practitioners, 2 primary health nurses, and 7 palliative care nurses) interviews were analyzed. Website solutions included religious and cultural information, communication ideas, legal

  10. Room for improvement: An examination of advance care planning documentation among gynecologic oncology patients.

    PubMed

    Brown, Alaina J; Shen, Megan Johnson; Urbauer, Diana; Taylor, Jolyn; Parker, Patricia A; Carmack, Cindy; Prescott, Lauren; Kolawole, Elizabeth; Rosemore, Carly; Sun, Charlotte; Ramondetta, Lois; Bodurka, Diane C

    2016-09-01

    The goals of this study were: (1) to evaluate patients' knowledge regarding advance directives and completion rates of advance directives among gynecologic oncology patients and (2) to examine the association between death anxiety, disease symptom burden, and patient initiation of advance directives. 110 gynecologic cancer patients were surveyed regarding their knowledge and completion of advance directives. Patients also completed the MD Anderson Symptom Inventory (MDASI) scale and Templer's Death Anxiety Scale (DAS). Descriptive statistics were utilized to examine characteristics of the sample. Fisher's exact tests and 2-sample t-tests were utilized to examine associations between key variables. Most patients were white (76.4%) and had ovarian (46.4%) or uterine cancer (34.6%). Nearly half (47.0%) had recurrent disease. The majority of patients had heard about advance directives (75%). Only 49% had completed a living will or medical power of attorney. Older patients and those with a higher level of education were more likely to have completed an advance directive (p<0.01). Higher MDASI Interference Score (higher symptom burden) was associated with patients being less likely to have a living will or medical power of attorney (p=0.003). Higher DAS score (increased death anxiety) was associated with patients being less likely to have completed a living will or medical power of attorney (p=0.03). Most patients were familiar with advance directives, but less than half had created these documents. Young age, lower level of education, disease-related interference with daily activities, and a higher level of death anxiety were associated with decreased rates of advance directive completion, indicating these may be barriers to advance care planning documentation. Young patients, less educated patients, patients with increased disease symptom burden, and patients with increased death anxiety should be targeted for advance care planning discussions as they may be less

  11. Room for Improvement: An Examination of Advance Care Planning Documentation among Gynecologic Oncology Patients

    PubMed Central

    Brown, Alaina J.; Shen, Megan Johnson; Urbauer, Diana; Taylor, Jolyn; Parker, Patricia A.; Carmack, Cindy; Prescott, Lauren; Kowaloe, Elizabeth; Rosemore, Carly; Sun, Charlotte; Ramondetta, Lois; Bodurka, Diane C.

    2017-01-01

    Objectives The goals of this study were: (1) to evaluate patients’ knowledge regarding advance directives and completion rates of advance directives among gynecologic oncology patients and (2) to examine the association between death anxiety, disease symptom burden, and patient initiation of advance directives. Methods 110 gynecologic cancer patients were surveyed regarding their knowledge and completion of advance directives. Patients also completed the MD Anderson Symptom Inventory (MDASI) scale and Templer’s Death Anxiety Scale (DAS). Descriptive statistics were utilized to examine characteristics of the sample. Fisher’s exact tests and 2-sample t-tests were utilized to examine associations between key variables. Results Most patients were white (76.4%) and had ovarian (46.4%) or uterine cancer (34.6%). Nearly half (47.0%) had recurrent disease. The majority of patients had heard about advance directives (75%). Only 49% had completed a living will or medical power of attorney. Older patients and those with a higher level of education were more likely to have completed an advance directive (p<0.01). Higher MDASI Interference Score (higher symptom burden) was associated with patients being less likely to have a living will or medical power of attorney (p=0.003). Higher DAS score (increased death anxiety) was associated with patients being less likely to have completed a living will or medical power of attorney (p=0.03). Conclusion Most patients were familiar with advance directives, but less than half had created these documents. Young age, lower level of education, disease-related interference with daily activities, and a higher level of death anxiety were associated with decreased rates of advance directive completion, indicating these may be barriers to advance care planning documentation. Young patients, less educated patients, patients with increased disease symptom burden, and patients with increased death anxiety should be targeted for advance care

  12. Barriers to Advance Care Planning in End-Stage Renal Disease: Who is to Blame, and What Can be Done?

    PubMed

    Kelley, Alan Taylor; Turner, Jeffrey; Doolittle, Benjamin

    2018-07-01

    Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in our hospital. Is this ineffectiveness a consequence of failure in the courtroom or the clinic? Through our own experience we affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without 'clear and convincing evidence' of a patient's previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting advance care planning early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail to recognize the need for advance care planning in a timely manner and lack the necessary training to provide it. The need for more training and new tools to recognize opportunities for advance care planning in daily practice remains unmet.

  13. Potential Influence of Advance Care Planning and Palliative Care Consultation on ICU Costs for Patients With Chronic and Serious Illness.

    PubMed

    Khandelwal, Nita; Benkeser, David C; Coe, Norma B; Curtis, J Randall

    2016-08-01

    To estimate the potential ICU-related cost savings if in-hospital advance care planning and ICU-based palliative care consultation became standard of care for patients with chronic and serious illness. Decision analysis using literature estimates and inpatient administrative data from Premier. Patients with chronic, life-limiting illness admitted to a hospital within the Premier network. None. Using Premier data (2008-2012), ICU resource utilization and costs were tracked over a 1-year time horizon for 2,097,563 patients with chronic life-limiting illness. Using a Markov microsimulation model, we explored the potential cost savings from the hospital system perspective under a variety of scenarios by varying the interventions' efficacies and availabilities. Of 2,097,563 patients, 657,825 (31%) used the ICU during the 1-year time horizon; mean ICU spending per patient was 11.3k (SD, 17.6k). In the base-case analysis, if in-hospital advance care planning and ICU-based palliative care consultation were systematically provided, we estimated a mean reduction in ICU costs of 2.8k (SD, 14.5k) per patient and an ICU cost saving of 25%. Among the simulated patients who used the ICU, the receipt of both interventions could have resulted in ICU cost savings of 1.9 billion, representing a 6% reduction in total hospital costs for these patients. In-hospital advance care planning and palliative care consultation have the potential to result in significant cost savings. Studies are needed to confirm these findings, but our results provide guidance for hospitals and policymakers.

  14. Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)—Patient Version

    Cancer.gov

    Planning the transition to end-of-life care in advanced cancer involves talking about patient wishes and preferences. Learn more about common topics and how preparation for transition to end-of-life care can help ease the stress in patients and their families.

  15. Advance care planning in 21st century Australia: a systematic review and appraisal of online advance care directive templates against national framework criteria.

    PubMed

    Luckett, Tim; Bhattarai, Priyanka; Phillips, Jane; Agar, Meera; Currow, David; Krastev, Yordanka; Davidson, Patricia M

    2015-11-01

    A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Frameworkfor Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment--the Dying with Dignity Victoria Advance Healthcare Directive. More research is needed to understand how online resources can optimally elicit and record consumers' individual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement.

  16. Measuring Advance Care Planning: Optimizing the Advance Care Planning Engagement Survey.

    PubMed

    Sudore, Rebecca L; Heyland, Daren K; Barnes, Deborah E; Howard, Michelle; Fassbender, Konrad; Robinson, Carole A; Boscardin, John; You, John J

    2017-04-01

    A validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of behaviors. However, concise surveys are needed. The objective of this study was to validate shorter versions of the survey. The survey included 57 process (e.g., readiness) and 25 action items (e.g., discussions). For item reduction, we systematically eliminated questions based on face validity, item nonresponse, redundancy, ceiling effects, and factor analysis. We assessed internal consistency (Cronbach's alpha) and construct validity with cross-sectional correlations and the ability of the progressively shorter survey versions to detect change one week after exposure to an ACP intervention (Pearson correlation coefficients). Five hundred one participants (four Canadian and three US sites) were included in item reduction (mean age 69 years [±10], 41% nonwhite). Because of high correlations between readiness and action items, all action items were removed. Because of high correlations and ceiling effects, two process items were removed. Successive factor analysis then created 55-, 34-, 15-, nine-, and four-item versions; 664 participants (from three US ACP clinical trials) were included in validity analysis (age 65 years [±8], 72% nonwhite, 34% Spanish speaking). Cronbach's alphas were high for all versions (four items 0.84-55 items 0.97). Compared with the original survey, cross-sectional correlations were high (four items 0.85; 55 items 0.97) as were delta correlations (four items 0.68; 55 items 0.93). Shorter versions of the ACP Engagement Survey are valid, internally consistent, and able to detect change across a broad range of ACP behaviors for English and Spanish speakers. Shorter ACP surveys can efficiently measure broad ACP behaviors in research and clinical settings. Published by Elsevier Inc.

  17. 'Nurses don't deal with these issues': nurses' role in advance care planning for lesbian, gay, bisexual and transgender patients.

    PubMed

    Carabez, Rebecca; Scott, Megan

    2016-12-01

    We used a question from the Healthcare Equality Index to explore nurses' knowledge and understanding of medical advance directives, medical power of attorney and other legal documents for lesbian, gay, bisexual and transgender patients. Until the landmark ruling in Obergefell vs. Hodges, lesbian, gay, bisexual and transgender individuals and same-sex couples have had limited relationship rights as only a few states recognised marriages and provided legal protections for same-sex couples. Health care providers' knowledge of and attitudes towards advance care planning plays a significant role in determining whether or not individuals successfully complete advance directives, yet advance care planning for lesbian, gay, bisexual and transgender individuals is poorly understood among both health care providers and same-sex couples. These data were part of a larger research study that explored the current state of lesbian, gay, bisexual and transgender-sensitive nursing practice. Undergraduate nursing students recruited and interviewed nurse key informants (n = 268) about medical advance directives, medical power of attorney and other legal documents for lesbian, gay, bisexual and transgender patients. Nearly 50% of key informants indicated a lack of knowledge of advance directives, over 26% reported the difficulties nurses face regarding advance directives are the same for both lesbian, gay, bisexual and transgender and heterosexual patients, and nearly 25% indicated difficulties including having to decide who has the legal right to make decisions for the patient. The study demonstrated the need for education and training for practising nurses in advance care planning for lesbian, gay, bisexual and transgender patients and same-sex couples. Nurses are in a position to act as educators, advocates and decision makers for their patients. Nurse's lack of understanding of advance care planning may negatively impact the type and quality of care lesbian, gay, bisexual and

  18. Medicare and Advance Planning: The Importance of Context.

    PubMed

    Dresser, Rebecca

    2016-05-01

    In January 2016, a long-delayed Medicare change took effect. The Medicare program will now reimburse doctors for time they spend talking with patients about end-of-life care. This is the move that Sarah Palin and other Affordable Care Act critics said would authorize government "death panels" to decide whether older Americans should live or die. Today virtually no one buys into Palin's death panel rhetoric. But many people do think the Medicare change is a big deal. Representative Earl Blumenauer, a Democrat from Oregon who sponsored the original ACA reimbursement proposal, lauded the Medicare provision as "a turning point in end-of-life care." Others are not so sure about that. After all, laws promoting advance care planning have existed for decades. The federal Patient Self-Determination Act of 1990 and the many court decisions and state laws supporting advance care planning have had relatively little impact. Similarly, legal recognition of physician orders for life-sustaining treatment as advance planning instruments have not produced the improvements that were predicted. And from a broad perspective, advance care planning is a small piece of the puzzle. The effort to improve end-of-life care must take into account the limitations of advance decision-making, as well as the overriding importance of the general standard of care for terminally ill patients. © 2016 The Hastings Center.

  19. Advance Care Planning and Health Care Preferences of Community-Dwelling Elders: The Framingham Heart Study

    PubMed Central

    McCarthy, Ellen P.; Pencina, Michael J.; Kelly-Hayes, Margaret; Evans, Jane C.; Oberacker, Elizabeth J.; D’Agostino, Ralph B.; Burns, Risa B.; Murabito, Joanne M.

    2009-01-01

    Objectives To describe self-reported advance care planning, health care preferences, use of advance directives, and health perceptions in a very elderly community-dwelling sample. Methods Surviving participants of the original cohort of the Framingham Heart Study who were cognitively intact and attended a routine research exam between February 2004 and October 2005. Participants were queried about discussions about end of life care, preferences for care, documentation of advance directives, and health perceptions. Results Among 220 community-dwelling respondents, 67% were women with a mean age of 88 years (range 84-100). Overall 69% discussed their wishes for medical care at the end of life with someone, but only 17% discussed their wishes with a physician or health care provider. Two-thirds had a health care proxy, 55% had a living will, and 41% had both. Most (80%) respondents preferred comfort care over life-extending care, and 71% preferred to die at home; however, substantially fewer respondents said they would rather die than receive specific life-prolonging interventions [chronic ventilator (63%) or feeding tube (64%)]. Many were willing to endure distressing health states, with less than half indicating that they would rather die than live out their life in a great deal of pain (46%) or be confused/forgetful (45%) all of the time. Conclusions Although the vast majority of very elderly community-dwellers in this sample appear to prefer comfort measures at the end of life, many said they were willing to endure specific life-prolonging interventions and distressing health states to avoid death. Our results highlight the need for physicians better understand patients’ preferences and goals of care to help them make informed decisions at the end of life. PMID:18840800

  20. Agency behind bars: Advance care planning with aging and dying offenders.

    PubMed

    Sanders, Sara; Stensland, Meredith; Juraco, Kim

    2018-01-01

    Aging and terminally ill individuals in U.S. prisons are increasing, making critical the need for appropriate end-of-life (EOL) care and advance care planning (ACP). Applying Bandura's agentic perspective, the authors examined 20 aging/dying offenders' EOL preferences and ACP. Findings include 6 themes: decisions in the shadow of the past, what works best for me, feeling blessed, what is really going on, can anyone be trusted, and turning agency over to someone else. This study provides critical information that will assist professionals who work with dying offenders, as it presents a vivid illustration of their dying process.

  1. Implementation status and explanatory analysis of early advance care planning for Stage IV non-small cell lung cancer patients.

    PubMed

    Tokito, Takaaki; Murakami, Haruyasu; Mori, Keita; Osaka, Iwao; Takahashi, Toshiaki

    2015-03-01

    The American Society of Clinical Oncology published the goals of individualized care including advance care planning for advanced cancer patients in 2011. However, no data are available on the implementation status of advance care planning. We retrospectively reviewed the electronic medical records and informed consent forms of consecutive Stage IV non-small cell lung cancer patients treated with chemotherapy between January 2010 and December 2012 at our institution. Two outcomes were defined to investigate the advance care planning implementation status: C-D, the duration from the last day of chemotherapy to death and D-D, that from the day of confirmed do-not-attempt-resuscitation order to death. The study included 136 eligible patients. The advance care planning implementation status in participating patients was as follows: 96 (70%) patients received information on 'incurable disease before first-line chemotherapy', 69 (50%) were informed about 'supportive care before first-line chemotherapy', whereas 43 (32%) learned about their prognosis. The do-not-attempt-resuscitation decision was reflected in 29 patients' will (21%). The median C-D was 64 days. Receipt of ≤2 chemotherapy regimens and provision of prognosis information to patients were significantly associated with long C-D in multivariate analysis. The median D-D was 25 days. Provision of information on supportive care before first-line chemotherapy and provision of prognosis information to patients were significantly associated with long D-D in multivariate analysis. Our results suggest that there is possible benefit from providing information on supportive care before first-line chemotherapy and informing patients about their prognosis in prolonging the duration of supportive care. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  2. Desire for predictive testing for Alzheimer's disease and impact on advance care planning: a cross-sectional study.

    PubMed

    Sheffrin, Meera; Stijacic Cenzer, Irena; Steinman, Michael A

    2016-12-13

    It is unknown whether older adults in the United States would be willing to take a test predictive of future Alzheimer's disease, or whether testing would change behavior. Using a nationally representative sample, we explored who would take a free and definitive test predictive of Alzheimer's disease, and examined how using such a test may impact advance care planning. A cross-sectional study within the 2012 Health and Retirement Study of adults aged 65 years or older asked questions about a test predictive of Alzheimer's disease (N = 874). Subjects were asked whether they would want to take a hypothetical free and definitive test predictive of future Alzheimer's disease. Then, imagining they knew they would develop Alzheimer's disease, subjects rated the chance of completing advance care planning activities from 0 to 100. We classified a score > 50 as being likely to complete that activity. We evaluated characteristics associated with willingness to take a test for Alzheimer's disease, and how such a test would impact completing an advance directive and discussing health plans with loved ones. Overall, 75% (N = 648) of the sample would take a free and definitive test predictive of Alzheimer's disease. Older adults willing to take the test had similar race and educational levels to those who would not, but were more likely to be ≤75 years old (odds ratio 0.71 (95% CI 0.53-0.94)). Imagining they knew they would develop Alzheimer's, 81% would be likely to complete an advance directive, although only 15% had done so already. In this nationally representative sample, 75% of older adults would take a free and definitive test predictive of Alzheimer's disease. Many participants expressed intent to increase activities of advance care planning with this knowledge. This confirms high public interest in predictive testing for Alzheimer's disease and suggests this may be an opportunity to engage patients in advance care planning discussions.

  3. Improved resident physician confidence with advance care planning after an ambulatory clinic intervention.

    PubMed

    Tung, Ericka E; Wieland, Mark L; Verdoorn, Brandon P; Mauck, Karen F; Post, Jason A; Thomas, Matthew R; Bundrick, John B; Jaeger, Thomas M; Cha, Stephen S; Thomas, Kris G

    2014-05-01

    Many primary care providers feel uncomfortable discussing end-of-life care. The aim of this intervention was to assess internal medicine residents' advance care planning (ACP) practices and improve residents' ACP confidence. Residents participated in a facilitated ACP quality improvement workshop, which included an interactive presentation and chart audit of their own patients. Pre- and postintervention surveys assessed resident ACP-related confidence. Only 24% of the audited patients had an advance directive (AD), and 28% of the ACP-documentation was of no clinical utility. Terminally ill patients (odds ratio 2.8, P < .001) were more likely to have an AD. Patients requiring an interpreter were less likely to have participated in ACP. Residents reported significantly improved confidence with ACP and identified important training gaps. Future studies examining the impact on ACP quality are needed.

  4. Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV

    PubMed Central

    Kimmel, Allison; Wilkins, Megan L.; Rana, Sohail; Garcia, Ana; Cheng, Yao I.; Wang, Jichuan; Lyon, Maureen E.

    2016-01-01

    BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents’ improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (β = 1.16, P = .02). There were no adverse events. CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP’s feasibility, acceptability, and safety. PMID:27940700

  5. Advance care planning uptake among patients with severe lung disease: a randomised patient preference trial of a nurse-led, facilitated advance care planning intervention.

    PubMed

    Sinclair, Craig; Auret, Kirsten Anne; Evans, Sharon Frances; Williamson, Fiona; Dormer, Siobhan; Wilkinson, Anne; Greeve, Kim; Koay, Audrey; Price, Dot; Brims, Fraser

    2017-02-24

    Advance care planning (ACP) clarifies goals for future care if a patient becomes unable to communicate their own preferences. However, ACP uptake is low, with discussions often occurring late. This study assessed whether a systematic nurse-led ACP intervention increases ACP in patients with advanced respiratory disease. A multicentre open-label randomised controlled trial with preference arm. Metropolitan teaching hospital and a rural healthcare network. 149 participants with respiratory malignancy, chronic obstructive pulmonary disease or interstitial lung disease. Nurse facilitators offered facilitated ACP discussions, prompted further discussions with doctors and loved ones, and assisted participants to appoint a substitute medical decision-maker (SDM) and complete an advance directive (AD). The primary measure was formal (AD or SDM) or informal (discussion with doctor) ACP uptake assessed by self-report (6 months) and medical notes audit. Secondary measures were the factors predicting baseline readiness to undertake ACP, and factors predicting postintervention ACP uptake in the intervention arm. At 6 months, formal ACP uptake was significantly higher (p<0.001) in the intervention arm (54/106, 51%), compared with usual care (6/43, 14%). ACP discussions with doctors were also significantly higher (p<0.005) in the intervention arm (76/106, 72%) compared with usual care (20/43, 47%). Those with a strong preference for the intervention were more likely to complete formal ACP documents than those randomly allocated. Increased symptom burden and preference for the intervention predicted later ACP uptake. Social support was positively associated with ACP discussion with loved ones, but negatively associated with discussion with doctors. Nurse-led facilitated ACP is acceptable to patients with advanced respiratory disease and effective in increasing ACP discussions and completion of formal documents. Awareness of symptom burden, readiness to engage in ACP and

  6. Advance Care Planning Documentation in Electronic Health Records: Current Challenges and Recommendations for Change.

    PubMed

    Lamas, Daniela; Panariello, Natalie; Henrich, Natalie; Hammes, Bernard; Hanson, Laura C; Meier, Diane E; Guinn, Nancy; Corrigan, Janet; Hubber, Sean; Luetke-Stahlman, Hannah; Block, Susan

    2018-04-01

    To develop a set of clinically relevant recommendations to improve the state of advance care planning (ACP) documentation in the electronic health record (EHR). Advance care planning (ACP) is a key process that supports goal-concordant care. For preferences to be honored, clinicians must be able to reliably record, find, and use ACP documentation. However, there are no standards to guide ACP documentation in the electronic health record (EHR). We interviewed 21 key informants to understand the strengths and weaknesses of EHR documentation systems for ACP and identify best practices. We analyzed these interviews using a qualitative content analysis approach and subsequently developed a preliminary set of recommendations. These recommendations were vetted and refined in a second round of input from a national panel of content experts. Informants identified six themes regarding current inadequacies in documentation and accessibility of ACP information and opportunities for improvement. We offer a set of concise, clinically relevant recommendations, informed by expert opinion, to improve the state of ACP documentation in the EHR.

  7. Advance care planning in the oncology settings.

    PubMed

    Samara, Juliane; Larkin, David; Chan, Choi Wan; Lopez, Violeta

    2013-06-01

    Self-determination and patient choice of end-of-life care are emphasised in palliative care. Advance care planning (ACP) is an approach to enabling patients' choices. The use of ACP has not been extensively studied in our current context. Little is known about oncology care nurses' views and the barriers they face in the implementation of ACP. The aims of this study were to assess the uptake of ACP by health professionals and explore nurses' perceived barriers for implementing ACP. This study employed a pre- and post-implementation audit design using the Joanna Briggs Institute (JBI) Practical Application of Clinical Evidence System (PACES) and Getting Research into Practice (GRIP) programs. An education programme on ACP was provided between pre-and post-implementation audits. Nurses and medical professionals (pre-audit, n = 32; post-audit, n = 30) working in oncology departments were invited to complete a questionnaire based on the audit criteria. A convenience sample of 25 nurses participated in the focus group interview. Interview data were analysed by content analysis. The post-audit results were lower than the pre-audit results with a range of decreased compliance from 1% for criterion 5 to 14% for criterion 6. Lack of time to implement ACP was the most frequently raised barrier by oncology nurses. The study findings were disappointing, but this first audit is significant to provide insights for future dissemination and implementation of ACP interventions. An ongoing mandatory professional development programme in ACP for healthcare staff is promising to promote the uptake of ACP in healthcare settings. © 2013 The Authors. International Journal of Evidence-Based Healthcare © 2013 The Joanna Briggs Institute.

  8. The Role of Social Workers in Spiritual Care to Facilitate Coping With Chronic Illness and Self-Determination in Advance Care Planning.

    PubMed

    Francoeur, Richard B; Burke, Nancy; Wilson, Alicia M

    2016-01-01

    Spiritual values and beliefs of patients and families influence resilience during chronic illness and shape patient choices during advance care planning. The spiritual needs of Baby Boomers will be more diverse than previous generations, in connection with the questioning, experimental mind-set of this group and the fact that it includes a higher proportion of immigrant populations outside the Judeo-Christian tradition. Social workers are trained explicitly to intervene with diverse populations and are well positioned to offer spiritual support in ways that do not necessarily conform to traditional religions. To the extent of their individual expertise and competence, social workers should assess and provide spiritual care to clients, including those who either are underserved or prefer not to seek assistance from clergy or chaplains because they feel alienated from religious institutions and representatives. They should also be aware of ethical dilemmas in consulting with spiritual care professionals in developing spiritual interventions. Social work education should address clients' humanistic and existential concerns, beliefs and behaviors of the major religions, and forms of nontraditional religious and spiritual experiences; it should also provide experiential opportunities for engaging with grief and earlier advance care planning. There should be attention to different theodical perspectives of the major religions regarding the problem of good and evil, which may preoccupy even clients who no longer participate in organized religion, because these unresolved existential issues may weaken client coping with chronic conditions and may diminish clarity and self-awareness for engaging authentically and effectively in advance care planning.

  9. "I Don't Want to Die like that...": The Impact of Significant Others' Death Quality on Advance Care Planning

    ERIC Educational Resources Information Center

    Carr, Deborah

    2012-01-01

    Purpose of the Study: I examine whether 5 aspects of a significant other's death quality (pain, decision-making capacity, location, problems with end-of life care, and preparation) affect whether one does advance care planning (ACP). I also identify specific aspects of others' deaths that respondents say triggered their own planning. Design and…

  10. Advance Care Planning in an Accountable Care Organization Is Associated with Increased Advanced Directive Documentation and Decreased Costs

    PubMed Central

    Kim, Minchul; Franciskovich, Chris M.; Weinberg, Jason E.; Svendsen, Jessica D.; Fehr, Linda S.; Funk, Amy; Sawicki, Robert; Asche, Carl V.

    2018-01-01

    Abstract Background: Advance care planning (ACP) documents patient wishes and increases awareness of palliative care options. Objective: To study the association of outpatient ACP with advanced directive documentation, utilization, and costs of care. Design: This was a case–control study of cases with ACP who died matched 1:1 with controls. We used 12 months of data pre-ACP/prematch and predeath. We compared rates of documentation with logit model regression and conducted a difference-in-difference analysis using generalized linear models for utilization and costs. Setting/subjects: Medicare beneficiaries attributed to a large rural-suburban-small metro multisite accountable care organization from January 2013 to April 2016, with cross reference to ACP facilitator logs to find cases. Measurements: The presence of advance directive forms was verified by chart review. Cost analysis included all utilization and costs billed to Medicare. Results: We matched 325 cases and 325 controls (51.1% female and 48.9% male, mean age 81). 320/325 (98.5%) ACP versus 243/325 (74.8%) of controls had a Healthcare Power of Attorney (odds ratio [OR] 21.6, 95% CI 8.6–54.1) and 172/325(52.9%) ACP versus 145/325 (44.6%) controls had Practitioner Orders for Life Sustaining Treatment (OR 1.40, 95% CI 1.02–1.90) post-ACP/postmatch. Adjusted results showed ACP cases had fewer inpatient admissions (−0.37 admissions, 95% CI −0.66 to −0.08), and inpatient days (−3.66 days, 95% CI −6.23 to −1.09), with no differences in hospice, hospice days, skilled nursing facility use, home health use, 30-day readmissions, or emergency department visits. Adjusted costs were $9,500 lower in the ACP group (95% CI −$16,207 to −$2,793). Conclusions: ACP increases documentation and was associated with a reduction in overall costs driven primarily by a reduction in inpatient utilization. Our data set was limited by small numbers of minorities and cancer patients. PMID:29206564

  11. Advance Care Planning in an Accountable Care Organization Is Associated with Increased Advanced Directive Documentation and Decreased Costs.

    PubMed

    Bond, William F; Kim, Minchul; Franciskovich, Chris M; Weinberg, Jason E; Svendsen, Jessica D; Fehr, Linda S; Funk, Amy; Sawicki, Robert; Asche, Carl V

    2018-04-01

    Advance care planning (ACP) documents patient wishes and increases awareness of palliative care options. To study the association of outpatient ACP with advanced directive documentation, utilization, and costs of care. This was a case-control study of cases with ACP who died matched 1:1 with controls. We used 12 months of data pre-ACP/prematch and predeath. We compared rates of documentation with logit model regression and conducted a difference-in-difference analysis using generalized linear models for utilization and costs. Medicare beneficiaries attributed to a large rural-suburban-small metro multisite accountable care organization from January 2013 to April 2016, with cross reference to ACP facilitator logs to find cases. The presence of advance directive forms was verified by chart review. Cost analysis included all utilization and costs billed to Medicare. We matched 325 cases and 325 controls (51.1% female and 48.9% male, mean age 81). 320/325 (98.5%) ACP versus 243/325 (74.8%) of controls had a Healthcare Power of Attorney (odds ratio [OR] 21.6, 95% CI 8.6-54.1) and 172/325(52.9%) ACP versus 145/325 (44.6%) controls had Practitioner Orders for Life Sustaining Treatment (OR 1.40, 95% CI 1.02-1.90) post-ACP/postmatch. Adjusted results showed ACP cases had fewer inpatient admissions (-0.37 admissions, 95% CI -0.66 to -0.08), and inpatient days (-3.66 days, 95% CI -6.23 to -1.09), with no differences in hospice, hospice days, skilled nursing facility use, home health use, 30-day readmissions, or emergency department visits. Adjusted costs were $9,500 lower in the ACP group (95% CI -$16,207 to -$2,793). ACP increases documentation and was associated with a reduction in overall costs driven primarily by a reduction in inpatient utilization. Our data set was limited by small numbers of minorities and cancer patients.

  12. Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life.

    PubMed

    Melhado, Lolita; Bushy, Angeline

    2011-11-01

    African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans.

  13. Enhancing the prospects for palliative care at the end of life: A statewide educational demonstration project to improve advance care planning.

    PubMed

    Litzelman, Debra K; Cottingham, Ann H; Griffin, Wilma; Inui, Thomas S; Ivy, Steven S

    2016-12-01

    Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life. Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care. Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice. Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for "sustaining hope" (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting

  14. Quality of Dying in Nursing Home Residents Dying with Dementia: Does Advanced Care Planning Matter? A Nationwide Postmortem Study

    PubMed Central

    Vandervoort, An; Houttekier, Dirk; Vander Stichele, Robert; van der Steen, Jenny T.; Van den Block, Lieve

    2014-01-01

    Background Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1) advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2) the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia. Methods Cross-sectional study of deaths (2010) using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires. Findings We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate). A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety) on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1–11) than for those without either (AOR 2.99; CI,1.1–8.3). We found no association between verbal communication or having a GP order and quality of dying. Conclusion For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as

  15. Advance care planning: the impact of Ceiling of Treatment plans in patients with Coordinate My Care.

    PubMed

    Broadhurst, Helen Lucy; Droney, Joanne; Callender, Tom; Shaw, Amanda; Riley, Julia

    2018-03-22

    The aim of this evaluation is to describe the components and results of urgent care planning in Coordinate My Care (CMC), a digital clinical service for patients with life-limiting illness, for use if a patient is unable to make or express choices. Ceiling of treatment (CoT) plans were created detailing where the patient would like to receive their care and how aggressive medical interventions should be. A retrospective service evaluation was completed of all CMC records created between December 2015 and September 2016 (n=6854). CMC records were divided into two cohorts: those with a CoT plan and those without. The factors associated with these cohorts were reviewed including age, diagnosis, resuscitation status and preferences for place of death (PPD). Analysis of the non-mandatory free text section was carried out. Two-thirds of patients had recorded decisions about CoT. Regardless of which CoT option was chosen, for most patients, PPD was home or care home. Patients with a CoT plan were more likely to have a documented resuscitation status.Patients with a CoT were more likely to die in their PPD (82%vs71%, OR 1.79, p<0.0001). A higher proportion of patients with a CoT decision died outside hospital. This analysis demonstrates that a substantial proportion of patients are willing to engage in urgent care planning. Three facets of urgent care planning identified include PPD, CoT and resuscitation status. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  16. 'We have to discuss it': cancer patients' advance care planning impressions following educational information about cardiopulmonary resuscitation.

    PubMed

    Epstein, A S; Shuk, E; O'Reilly, E M; Gary, K A; Volandes, A E

    2015-12-01

    Most cancer patients desire information about care options at the end of life, including cardiopulmonary resuscitation (CPR). Communicating such care options can be challenging and is part of advance care planning (ACP). Our prior studies with video educational media produced data on patients' categoric preferences (yes/no/unsure) for CPR; however, the thematic underpinnings of these educated preferences in patients treated for advanced cancer aren't well known. Qualitative thematic content analysis of participants' responses in a randomized trial of an educational video (V) or narrative (N) about CPR in patients with advanced gastrointestinal cancers. Responses were independently coded and categorized for thematic content by two reviewers. Of 54 study participants, 26 total (41% of V arm, 56% of N arm) articulated questions, comments, or both. Reviewer analyses demonstrated thematic consensus and resulted in seven distinct themes listed in decreasing order of prevalence: (a) ACP should be started early; (b) educational information about CPR affirmed participants' existing beliefs/knowledge/values about advanced illness; (c) participants were apprehensive about ACP but wanted to discuss it; (d) gaps in knowledge about ACP emerged; (e) CPR information was helpful/acceptable; (f) physicians should be involved in ACP; and (g) medical questions about critical illness arose. Findings identified that while sometimes difficult to discuss, advance care planning is desired, deemed helpful, and ideally begun early by clinicians, and that video education is an appropriate and affirming initiator of discussions. These themes are incorporated into our ongoing research on cancer patient-specific values and education about care options. Copyright © 2015 John Wiley & Sons, Ltd.

  17. Knowledge About and Perceptions of Advance Care Planning and Communication of Chinese-American Older Adults.

    PubMed

    Yonashiro-Cho, Jeanine; Cote, Sarah; Enguidanos, Susan

    2016-09-01

    Although advance care planning (ACP) is associated with better care at the end of life, better quality of death, and less psychological distress in survivors, ethnic disparities in ACP completion rates have been documented and may be attributable to lack of knowledge about ACP or differences in cultural values and preferences. Despite rapid increases in the size of the Asian-American population, little is known about ACP preferences of Chinese Americans. The purpose of this study is to explore the knowledge, attitudes, and preferences of older Chinese Americans toward ACP. Focus groups with Chinese older adults (n = 34) were conducted in Mandarin, Cantonese, and English, and transcripts were analyzed using a grounded theory approach. Identified themes included knowledge and experience with ACP and end-of-life care options, health as a factor in timing of ACP and communication, and communication of end-of-life care preferences. Knowledge of and experience with ACP and end-of-life decision-making varied according to focus group, although few participants had an advance directive. Findings suggest that Chinese older adults prefer to use indirect communication strategies, such as commenting on the circumstances of others rather than directly stating their wishes, and informal contexts, such as during a family dinner rather than formal meeting, to convey their care preferences to loved ones and may employ similar tactics when communicating with clinicians. This is particularly important given the recent decision by the Centers for Medicare and Medicaid Services to provide reimbursement to physicians for engaging in advance care planning conversations. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  18. Reliability of an interactive computer program for advance care planning.

    PubMed

    Schubart, Jane R; Levi, Benjamin H; Camacho, Fabian; Whitehead, Megan; Farace, Elana; Green, Michael J

    2012-06-01

    Despite widespread efforts to promote advance directives (ADs), completion rates remain low. Making Your Wishes Known: Planning Your Medical Future (MYWK) is an interactive computer program that guides individuals through the process of advance care planning, explaining health conditions and interventions that commonly involve life or death decisions, helps them articulate their values/goals, and translates users' preferences into a detailed AD document. The purpose of this study was to demonstrate that (in the absence of major life changes) the AD generated by MYWK reliably reflects an individual's values/preferences. English speakers ≥30 years old completed MYWK twice, 4 to 6 weeks apart. Reliability indices were assessed for three AD components: General Wishes; Specific Wishes for treatment; and Quality-of-Life values (QoL). Twenty-four participants completed the study. Both the Specific Wishes and QoL scales had high internal consistency in both time periods (Knuder Richardson formula 20 [KR-20]=0.83-0.95, and 0.86-0.89). Test-retest reliability was perfect for General Wishes (κ=1), high for QoL (Pearson's correlation coefficient=0.83), but lower for Specific Wishes (Pearson's correlation coefficient=0.57). MYWK generates an AD where General Wishes and QoL (but not Specific Wishes) statements remain consistent over time.

  19. Reliability of an Interactive Computer Program for Advance Care Planning

    PubMed Central

    Levi, Benjamin H.; Camacho, Fabian; Whitehead, Megan; Farace, Elana; Green, Michael J

    2012-01-01

    Abstract Despite widespread efforts to promote advance directives (ADs), completion rates remain low. Making Your Wishes Known: Planning Your Medical Future (MYWK) is an interactive computer program that guides individuals through the process of advance care planning, explaining health conditions and interventions that commonly involve life or death decisions, helps them articulate their values/goals, and translates users' preferences into a detailed AD document. The purpose of this study was to demonstrate that (in the absence of major life changes) the AD generated by MYWK reliably reflects an individual's values/preferences. English speakers ≥30 years old completed MYWK twice, 4 to 6 weeks apart. Reliability indices were assessed for three AD components: General Wishes; Specific Wishes for treatment; and Quality-of-Life values (QoL). Twenty-four participants completed the study. Both the Specific Wishes and QoL scales had high internal consistency in both time periods (Knuder Richardson formula 20 [KR-20]=0.83–0.95, and 0.86–0.89). Test-retest reliability was perfect for General Wishes (κ=1), high for QoL (Pearson's correlation coefficient=0.83), but lower for Specific Wishes (Pearson's correlation coefficient=0.57). MYWK generates an AD where General Wishes and QoL (but not Specific Wishes) statements remain consistent over time. PMID:22512830

  20. Strategic targeting of advance care planning interventions: the Goldilocks phenomenon.

    PubMed

    Billings, J Andrew; Bernacki, Rachelle

    2014-04-01

    Strategically selecting patients for discussions and documentation about limiting life-sustaining treatments-choosing the right time along the end-of-life trajectory for such an intervention and identifying patients at high risk of facing end-of-life decisions-can have a profound impact on the value of advance care planning (ACP) efforts. Timing is important because the completion of an advance directive (AD) too far from or too close to the time of death can lead to end-of-life decisions that do not optimally reflect the patient's values, goals, and preferences: a poorly chosen target patient population that is unlikely to need an AD in the near future may lead to patients making unrealistic, hypothetical choices, while assessing preferences in the emergency department or hospital in the face of a calamity is notoriously inadequate. Because much of the currently studied ACP efforts have led to a disappointingly small proportion of patients eventually benefitting from an AD, careful targeting of the intervention should also improve the efficacy of such projects. A key to optimal timing and strategic selection of target patients for an ACP program is prognostication, and we briefly highlight prognostication tools and studies that may point us toward high-value AD interventions.

  1. Advance care planning: Beyond the living will.

    PubMed

    Messinger-Rapport, Barbara J; Baum, Elizabeth E; Smith, Martin L

    2009-05-01

    For a variety of reasons, the most commonly used advance directive documents (eg, the living will) may not be very useful in many situations that older adults encounter. The durable power of attorney for health care is a more versatile document. We advocate focusing less on "signing away" certain interventions and more on clarifying the goals of care in the ambulatory setting.

  2. SPIRIT trial: A phase III pragmatic trial of an advance care planning intervention in ESRD.

    PubMed

    Song, Mi-Kyung; Unruh, Mark L; Manatunga, Amita; Plantinga, Laura C; Lea, Janice; Jhamb, Manisha; Kshirsagar, Abhijit V; Ward, Sandra E

    2018-01-01

    Advance care planning (ACP) is a central tenet of dialysis care, but the vast majority of dialysis patients report never engaging in ACP discussions with their care providers. Over the last decade, we have developed and iteratively tested SPIRIT (Sharing Patient's Illness Representation to Increase Trust), a theory-based, patient- and family-centered advance care planning intervention. SPIRIT is a six-step, two-session, face-to-face intervention to promote cognitive and emotional preparation for end-of-life decision making for patients with ESRD and their surrogates. In these explanatory trials, SPIRIT was delivered by trained research nurses. Findings consistently revealed that patients and surrogates in SPIRIT showed significant improvement in preparedness for end-of-life decision making, and surrogates in SPIRIT reported significantly improved post-bereavement psychological outcomes after the patient's death compared to a no treatment comparison condition. As a critical next step, we are conducting an effectiveness-implementation study. This study is a multicenter, clinic-level cluster randomized pragmatic trial to evaluate the effectiveness of SPIRIT delivered by dialysis care providers as part of routine care in free-standing outpatient dialysis clinics, compared to usual care plus delayed SPIRIT implementation. Simultaneously, we will evaluate the implementation of SPIRIT, including sustainability. We will recruit 400 dyads of patients at high risk of death in the next year and their surrogates from 30 dialysis clinics in four states. This trial of SPIRIT will generate novel, meaningful insights about improving ACP in dialysis care. ClinicalTrials.govNCT03138564, registered 05/01/2017. Copyright © 2017 Elsevier Inc. All rights reserved.

  3. Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®)—Health Professional Version

    Cancer.gov

    Planning the transition to end-of-life care in advanced cancer involves making decisions that can be challenging and emotionally distressing. Get information about likely topics and strategies to improve patient-oncologist communication and decision making in this clinician summary.

  4. Thinking ahead--the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study.

    PubMed

    Bristowe, Katherine; Horsley, Helen L; Shepherd, Kate; Brown, Heather; Carey, Irene; Matthews, Beverley; O'Donoghue, Donal; Vinen, Katie; Murtagh, Felicity E M

    2015-05-01

    There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the 'conveyor belt' culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential - one size does not fit all. © The Author(s) 2014.

  5. [Truth telling and advance care planning at the end of life].

    PubMed

    Hu, Wen-Yu; Yang, Chia-Ling

    2009-02-01

    One of the core values in terminal care the respect of patient 'autonomy'. This essay begins with a discussion of medical ethics principles and the Natural Death Act in Taiwan and then summarizes two medical ethical dilemmas, truth telling and advance care planning (ACP), faced in the development of hospice and palliative care in Taiwan. The terminal truth telling process incorporates the four basic principles of Assessment and preparation, Communication with family, Truth-telling process, and Support and follow up (the so-called "ACTs"). Many experts suggest practicing ACP by abiding by the following five steps: (1) presenting and illustrating topics; (2) facilitating a structured discussion; (3) completing documents with advanced directives (ADs); (4) reviewing and updating ADs; and (5) applying ADs in clinical circumstances. Finally, the myths and challenges in truth telling and ADs include the influence of healthcare system procedures and priorities, inadequate communication skills, and the psychological barriers of medical staffs. Good communication skills are critical to truth telling and ACP. Significant discussion about ACP should help engender mutual trust between patients and the medical staffs who take the time to establish such relationships. Promoting patient autonomy by providing the opportunity of a good death is an important goal of truth telling and ACP in which patients have opportunities to choose their terminal treatment.

  6. Teaching Medical Students About "The Conversation": An Interactive Value-Based Advance Care Planning Session.

    PubMed

    Lum, Hillary D; Dukes, Joanna; Church, Skotti; Abbott, Jean; Youngwerth, Jean M

    2018-02-01

    Advance care planning (ACP) promotes care consistent with patient wishes. Medical education should teach how to initiate value-based ACP conversations. To develop and evaluate an ACP educational session to teach medical students a value-based ACP process and to encourage students to take personal ACP action steps. Groups of third-year medical students participated in a 75-minute session using personal reflection and discussion framed by The Conversation Starter Kit. The Conversation Project is a free resource designed to help individuals and families express their wishes for end-of-life care. One hundred twenty-seven US third-year medical students participated in the session. Student evaluations immediately after the session and 1 month later via electronic survey. More than 90% of students positively evaluated the educational value of the session, including rating highly the opportunities to reflect on their own ACP and to use The Conversation Starter Kit. Many students (65%) reported prior ACP conversations. After the session, 73% reported plans to discuss ACP, 91% had thought about preferences for future medical care, and 39% had chosen a medical decision maker. Only a minority had completed an advance directive (14%) or talked with their health-care provider (1%). One month later, there was no evidence that the session increased students' actions regarding these same ACP action steps. A value-based ACP educational session using The Conversation Starter Kit successfully engaged medical students in learning about ACP conversations, both professionally and personally. This session may help students initiate conversations for themselves and their patients.

  7. Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

    PubMed

    Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

    2016-01-01

    Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. Copyright 2016, SLACK Incorporated.

  8. Outcomes that Define Successful Advance Care Planning: A Delphi Panel Consensus

    PubMed Central

    Sudore, Rebecca L.; Heyland, Daren K.; Lum, Hillary D.; Rietjens, Judith A.C.; Korfage, Ida J.; Ritchie, Christine S.; Hanson, Laura C.; Meier, Diane E.; Pantilat, Steven Z.; Lorenz, Karl; Howard, Michelle; Green, Michael J.; Simon, Jessica E.; Feuz, Mariko A.; You, John J.

    2017-01-01

    Context Standardized outcomes that define successful advance care planning (ACP) are lacking. Objective To create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. Methods This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from 5 international ACP conferences to identify initial ACP outcome constructs. In 5 Delphi rounds, we asked panelists to rate patient-centered outcomes on a 7-point “not-at-all” to “extremely important” scale. We calculated means and analyzed panelists’ input to finalize an Organizing Framework and outcome rankings. Results Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and healthcare (e.g., utilization). The top 5 outcomes included (1) care consistent with goals, mean 6.71 (±SD 0.04); (2) surrogate designation, 6.55 (0.45); (3) surrogate documentation, 6.50 (0.11); (4) discussions with surrogates, 6.40 (0.19); and (5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether “care consistent with goals” 6.01 (0.21). Panelists raised can be reliably measured. Conclusion A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly “care consistent with goals.” PMID:28865870

  9. General practitioners perceptions on advance care planning for patients living with dementia.

    PubMed

    Brazil, Kevin; Carter, Gillian; Galway, Karen; Watson, Max; van der Steen, Jenny T

    2015-04-23

    Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care. A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented. One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed. Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.

  10. Community-Based Palliative Care and Advance Care Planning Documentation: Evidence from a Multispecialty Group.

    PubMed

    Tai-Seale, Ming; Yang, Yan; Dillon, Ellis; Tapper, Sharon; Lai, Steve; Yu, Peter; Allore, Heather; Ritchie, Christine

    2018-02-01

    With the growing public demand for access to critical health data across care settings, it is essential that advance care planning (ACP) information be included in the electronic health record (EHR) so that multiple clinicians can access it and understand individuals' preferences for end-of-life care. Community-based palliative care programs often incorporate ACP services. This study examined whether a community-based palliative care program is associated with digitally extractable ACP documentation in the EHR. Observational study using propensity score-weighted generalized estimation equations to examine patterns of digitally extractable ACP documentation. Palo Alto Medical Foundation (PAMF), a multispecialty ambulatory healthcare system in northern California. Individuals aged 65 and older with serious illnesses between January 1, 2013, and December 31, 2014 (N = 3,444). Community-based palliative care program in PAMF. Digitally extractable ACP in EHR. We found that only 14% (n = 483) of individuals with serious illnesses had digitally extractable ACP in electronic health records. Of the 6% of individuals receiving palliative care, 65% had ACP, versus 11% of those not receiving palliative care. Study results showed a strong positive association between palliative care and ACP. Only a small percentage of individuals with serious illnesses had ACP documentation in the EHR. Individuals with serious illnesses infrequently used palliative care delivered by board-certified palliative care specialists. Palliative care service use was associated with higher rates of ACP after controlling for organizational and individual characteristics using a propensity score weighting method. Scalable interventions targeted at non-palliative care clinicians for universal access to ACP are needed. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

  11. Perspectives on advance care planning among patients recently requiring non-invasive ventilation for acute respiratory failure: A qualitative study using thematic analysis.

    PubMed

    Smith, Tracy A; Disler, Rebecca T; Jenkins, Christine R; Ingham, Jane M; Davidson, Patricia M

    2017-06-01

    Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning. We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation. Qualitative research using thematic analysis. Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation. Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of 'Looking through my illness to an uncertain but concerning future' unites these themes. This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients' understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients' preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients' concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.

  12. Honoring Choices Minnesota: Preliminary Data from a Community-Wide Advance Care Planning Model

    PubMed Central

    Wilson, Kent S; Kottke, Thomas E; Schettle, Sue

    2014-01-01

    Advance care planning (ACP) increases the likelihood that individuals who are dying receive the care that they prefer. It also reduces depression and anxiety in family members and increases family satisfaction with the process of care. Honoring Choices Minnesota is an ACP program based on the Respecting Choices model of La Crosse, Wisconsin. The objective of this report is to describe the process, which began in 2008, of implementing Honoring Choices Minnesota in a large, diverse metropolitan area. All eight large healthcare systems in the metropolitan area agreed to participate in the project, and as of April 30, 2013, the proportion of hospitalized individuals 65 and older with advance care directives in the electronic medical record was 12.1% to 65.6%. The proportion of outpatients aged 65 and older was 11.6% to 31.7%. Organizations that had sponsored recruitment initiatives had the highest proportions of records containing healthcare directives. It was concluded that it is possible to reduce redundancy by recruiting all healthcare systems in a metropolitan area to endorse the same ACP model, although significantly increasing the proportion of individuals with a healthcare directive in their medical record requires a campaign with recruitment of organizations and individuals. PMID:25516036

  13. Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trial.

    PubMed

    Sudore, Rebecca L; Boscardin, John; Feuz, Mariko A; McMahan, Ryan D; Katen, Mary T; Barnes, Deborah E

    2017-08-01

    Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings. To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year. Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. The primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. The mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted

  14. Patient advocacy and advance care planning in the acute hospital setting.

    PubMed

    Seal, Marion

    2007-01-01

    The aim of this study was to explain the role of patient advocacy in the Advance Care Planning (ACP-ing) process. Nurses rate prolonging the dying process with inappropriate measures as their most disturbing ethical issue and protecting patients' rights to be of great concern (Johnston et al 2002). Paradoxically ethical codes assume nurses have the autonomy to uphold patients' health-care choices. Advance Directives (AD) designed to improve end-of-life care are poorly taken up and acute hospitals are generally not geared for the few they receive. The Respecting Patient Choices Program (RPCP) improves AD utilisation through providing a supportive framework for ACP-ing and primarily equipping nurses as RPC consultants. Assisting patients with this process requires attributes consistent with patient advocacy arising out of nursing's most basic tenet, the care of others. Likert Scales survey administered pre and six months post-intervention to pilot and control groups, with coinciding focus groups. Selected wards in an acute care public hospital in South Australia. Nurses on the palliative care, respiratory, renal and colo-rectal pilot wards and the haem-oncology, coronary care, cardiology and neurology/geriatric control wards. The RPCP during the 2004-2005 South Australian pilot of the (RPCP). The organisational endorsement of ACP-ing gave nurses the autonomy to be patient advocates with respect to end-of-life care, reconciling clinical practice to their code of ethics and easing distress about prolonging the dying process inappropriately. Statistically significant survey results in the post-intervention group showed nurses experienced: encouragement to ensure patients could make informed choices about their end-of-life treatment (84%); the ability to uphold these wishes in practice (73%); and job satisfaction from delivering appropriate end-of-life care (67%); compared to approximately half (42-55%) of respondents in the pre-intervention and control groups. Focus

  15. Thinking ahead – the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study

    PubMed Central

    Horsley, Helen L; Shepherd, Kate; Brown, Heather; Carey, Irene; Matthews, Beverley; O’Donoghue, Donal; Vinen, Katie; Murtagh, Felicity EM

    2015-01-01

    Background: There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. Aim: To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. Study design: Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. Setting/participants: A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. Results: Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the ‘conveyor belt’ culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. Conclusion: Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential – one size does not fit all. PMID:25527527

  16. Health System Advance Care Planning Culture Change for High-Risk Patients: The Promise and Challenges of Engaging Providers, Patients, and Families in Systematic Advance Care Planning.

    PubMed

    Reidy, Jennifer; Halvorson, Jennifer; Makowski, Suzana; Katz, Delila; Weinstein, Barbara; McCluskey, Christine; Doering, Alex; DeCarli, Kathryn; Tjia, Jennifer

    2017-04-01

    The success of a facilitator-based model for advance care planning (ACP) in LaCrosse, Wisconsin, has inspired health systems to aim for widespread documentation of advance directives, but limited resources impair efforts to replicate this model. One promising strategy is the development of interactive, Internet-based tools that might increase access to individualized ACP at minimal cost. However, widespread adoption and implementation of Internet-based ACP efforts has yet to be described. We describe our early experiences in building a systematic, population-based ACP initiative focused on health system-wide deployment of an Internet-based tool as an adjunct to a facilitator-based model. With the sponsorship of our healthcare system's population health leadership, we engaged a diverse group of clinical stakeholders as champions to design an Internet-based ACP tool and facilitate local practice change. We describe how we simultaneously began to train clinicians in ACP conversations, engage patients and health system employees in thinking about ACP, redesign clinic workflows to accommodate ACP discussions, and integrate the Internet-based tool into the electronic medical record (EMR). Over 18 months, our project engaged two subspecialty clinics in a systematic ACP process and began work with a large primary care practice with a large Medicare Accountable Care Organization at-risk population. Overall, 807 people registered at the Internet site and 85% completed ACPs. We learned that changing culture and systems to promote ACP requires a comprehensive vision with simultaneous, interconnected strategies targeting patient education, clinician training, EMR documentation, and community awareness.

  17. Health care professionals' perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature.

    PubMed

    Beck, Esther-Ruth; McIlfatrick, Sonja; Hasson, Felicity; Leavey, Gerry

    2017-05-01

    This paper provides an overview of the evidence on the perspective of health care professionals (HCPs) in relation to advance care planning (ACP) for people with dementia, residing in long-term care settings. A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search identified 14 papers for inclusion. Following review of the studies four themes were identified for discussion; Early integration and planning for palliative care in dementia; HCPs ethical and moral concerns regarding ACP; Communication challenges when interacting with the person with dementia and their families and HCPs need for education and training. Despite evidence, that HCPs recognise the potential benefits of ACP, they struggle with its implementation in this setting. Greater understanding of dementia and the concept of ACP is required to improve consistency in practice. Synthesising the existing evidence will allow for further understanding of the key issues, potentially resulting in improved implementation in practice.

  18. Palliative care in advanced dementia.

    PubMed

    Merel, Susan E; Merel, Susan; DeMers, Shaune; Vig, Elizabeth

    2014-08-01

    Because neurodegenerative dementias are progressive and ultimately fatal, a palliative approach focusing on comfort, quality of life, and family support can have benefits for patients, families, and the health system. Elements of a palliative approach include discussion of prognosis and goals of care, completion of advance directives, and a thoughtful approach to common complications of advanced dementia. Physicians caring for patients with dementia should formulate a plan for end-of-life care in partnership with patients, families, and caregivers, and be prepared to manage common symptoms at the end of life in dementia, including pain and delirium. Copyright © 2014 Elsevier Inc. All rights reserved.

  19. Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial.

    PubMed

    Vogel, Rachel Isaksson; Petzel, Sue V; Cragg, Julie; McClellan, Molly; Chan, Daniel; Dickson, Elizabeth; Jacko, Julie A; Sainfort, François; Geller, Melissa A

    2013-11-01

    Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer. Women with ovarian cancer, their families, clinicians and researchers met to identify ways to improve cancer care. A prototype website was created to address advance care planning, focusing on advance healthcare directives (AHD) and palliative care consultation. Patients were recruited from a gynecologic oncology clinic for a pilot randomized controlled trial. Primary outcomes included completion of an AHD and palliative care consultation. At study completion, 53 women with ovarian cancer were enrolled and 35 completed the study. The mean age at enrollment was 57.9 ± 9.5 years; most were newly diagnosed or at first recurrence. There were no statistical differences in completion of AHD (p=0.220) or palliative care consultation (p=0.440) between intervention and control groups. However, women in the intervention group showed evidence of moving toward decision making regarding AHD and palliative care and lower decisional conflict. Women assigned to the intervention, compared to control website, were highly satisfied with the amount (p=0.054) and quality (p=0.119) of information and when they accessed the website, used it longer (p=0.049). Overall website use was lower than expected, resulting from several patient-related and design barriers. A website providing information and decisional support for women with ovarian cancer is feasible. Increasing frequency of website use requires future research. © 2013.

  20. Development and pilot of an advance care planning website for women with ovarian cancer: A randomized controlled trial

    PubMed Central

    Vogel, Rachel Isaksson; Petzel, Sue V.; Cragg, Julie; McClellan, Molly; Chan, Daniel; Dickson, Elizabeth; Jacko, Julie A.; Sainfort, François; Geller, Melissa A.

    2015-01-01

    Objective Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer. Methods Women with ovarian cancer, their families, clinicians and researchers met to identify ways to improve cancer care. A prototype website was created to address advance care planning, focusing on advance healthcare directives (AHD) and palliative care consultation. Patients were recruited from a gynecologic oncology clinic for a pilot randomized controlled trial. Primary outcomes included completion of an AHD and palliative care consultation. Results At study completion, 53 women with ovarian cancer were enrolled and 35 completed the study. The mean age at enrollment was 57.9 ± 9.5 years; most were newly diagnosed or at first recurrence. There were no statistical differences in completion of AHD (p = 0.220) or palliative care consultation (p = 0.440) between intervention and control groups. However, women in the intervention group showed evidence of moving toward decision making regarding AHD and palliative care and lower decisional conflict. Women assigned to the intervention, compared to control website, were highly satisfied with the amount (p = 0.054) and quality (p = 0.119) of information and when they accessed the website, used it longer (p = 0.049). Overall website use was lower than expected, resulting from several patient-related and design barriers. Conclusions A website providing information and decisional support for women with ovarian cancer is feasible. Increasing frequency of website use requires future research. PMID:23988413

  1. Understanding advance care planning within the South Asian community.

    PubMed

    Biondo, Patricia D; Kalia, Rashika; Khan, Rooh-Afza; Asghar, Nadia; Banerjee, Cyrene; Boulton, Debbie; Marlett, Nancy; Shklarov, Svetlana; Simon, Jessica E

    2017-10-01

    Advance care planning (ACP) is a process of reflection on and communication of a person's future health-care preferences. Evidence suggests visible minorities engage less in ACP. The South Asian ethnic group is the largest visible minority group in Canada, and information is needed to understand how ACP is perceived and how best to approach ACP within this diverse community. To explore perspectives of South Asian community members towards ACP. Peer-to-peer inquiry. South Asian community members who graduated from the Patient and Community Engagement Research programme (PaCER) at the University of Calgary utilized the PaCER method (SET, COLLECT and REFLECT) to conduct a focus group, family interviews and a community forum. Fifty-seven community-dwelling men and women (22-86 years) who self-identified with the South Asian community in Calgary, Alberta, Canada. The concept of ACP was mostly foreign to this community and was often associated with other end-of-life issues such as organ donation and estate planning. Cultural aspects (e.g. trust in shared family decision making and taboos related to discussing death), religious beliefs (e.g. fatalism) and immigration challenges (e.g. essential priorities) emerged as barriers to participation in ACP. However, participants were eager to learn about ACP and recommended several engagement strategies (e.g. disseminate information through religious institutions and community centres, include families in ACP discussions, encourage family physicians to initiate discussions and translate materials). Use of a patient engagement research model proved highly successful in understanding South Asian community members' participation in ACP. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  2. Top 10 Tips for Using Advance Care Planning Codes in Palliative Medicine and Beyond.

    PubMed

    Jones, Christopher A; Acevedo, Jean; Bull, Janet; Kamal, Arif H

    2016-12-01

    Although recommended for all persons with serious illness, advance care planning (ACP) has historically been a charitable clinical service. Inadequate or unreliable provisions for reimbursement, among other barriers, have spurred a gap between the evidence demonstrating the importance of timely ACP and recognition by payers for its delivery. 1 For the first time, healthcare is experiencing a dramatic shift in billing codes that support increased care management and care coordination. ACP, chronic care management, and transitional care management codes are examples of this newer recognition of the value of these types of services. ACP discussions are an integral component of comprehensive, high-quality palliative care delivery. The advent of reimbursement mechanisms to recognize these services has an enormous potential to impact palliative care program sustainability and growth. In this article, we highlight 10 tips to effectively using the new ACP codes reimbursable under Medicare. The importance of documentation, proper billing, and nuances regarding coding is addressed.

  3. Top 10 Tips for Using Advance Care Planning Codes in Palliative Medicine and Beyond

    PubMed Central

    Acevedo, Jean; Bull, Janet; Kamal, Arif H.

    2016-01-01

    Abstract Although recommended for all persons with serious illness, advance care planning (ACP) has historically been a charitable clinical service. Inadequate or unreliable provisions for reimbursement, among other barriers, have spurred a gap between the evidence demonstrating the importance of timely ACP and recognition by payers for its delivery.1 For the first time, healthcare is experiencing a dramatic shift in billing codes that support increased care management and care coordination. ACP, chronic care management, and transitional care management codes are examples of this newer recognition of the value of these types of services. ACP discussions are an integral component of comprehensive, high-quality palliative care delivery. The advent of reimbursement mechanisms to recognize these services has an enormous potential to impact palliative care program sustainability and growth. In this article, we highlight 10 tips to effectively using the new ACP codes reimbursable under Medicare. The importance of documentation, proper billing, and nuances regarding coding is addressed. PMID:27682147

  4. Does Volunteering Experience Influence Advance Care Planning in Old Age?

    PubMed

    Shen, Huei-Wern; Khosla, Nidhi

    2016-07-01

    Advance care planning (ACP) increases the likelihood patients will receive end-of-life care that is congruent with their preferences and lowers stress among both patients and caregivers. Previous efforts to increase ACP have mainly focused on information provision in the very late stage of life. This study examines whether a relationship exists between volunteering and ACP, and whether this relationship is associated with social support. The sample comprises 877 individuals who were aged 55+ in 2008, and were deceased before 2010. The sample is derived from seven waves (1998-2010) of data from the Health and Retirement Study. Logistic regression results showed that overall ACP and durable power of attorney for health care (DPAHC) were both higher (OR = 1.61 and 1.71, respectively) for older adults with volunteering experience in the past 10 years than those without such experience. Available social support (relatives and friends living nearby) was not associated with the relationship between volunteering and ACP. Other factors related to ACP included poorer health, death being expected, death due to cancer, older age, and being a racial minority. Involving older people in volunteer work may help to increase ACP. Future research is encouraged to identify reasons for the association between volunteering and ACP.

  5. Understanding advance care planning as a process of health behavior change.

    PubMed

    Fried, Terri R; Bullock, Karen; Iannone, Lynne; O'Leary, John R

    2009-09-01

    To explore whether models of health behavior change can help to inform interventions for advance care planning (ACP). Qualitative cross-sectional study. Community. Sixty-three community-dwelling persons aged 65 and older and 30 caregivers with experience as surrogate decision-makers. In focus groups conducted separately with older persons and caregivers, participants were asked to discuss ways they had planned for future declines in health and why they had or had not engaged in such planning. Transcripts were analyzed using grounded theory. Four themes illustrated the potential of applying models of health behavior change to improve ACP. (1) Participants demonstrated variable readiness to engage in ACP and could be in different stages of readiness for different components of ACP, including consideration of treatment goals, completion of advance directives, and communication with families and physicians. (2) Participants identified a wide range of benefits of and barriers to ACP. (3) Participants used a variety of processes of change to progress through stages of readiness, and ACP was only one of a broader set of behaviors that participants engaged in to prepare for declines in their health or for death. (4) Experience with healthcare decision-making for loved ones was a strong influence on perceptions of susceptibility and engagement in ACP. The variability in participants' readiness, barriers and benefits, perceptions of susceptibility, and use of processes to increase readiness for participating in each component of ACP suggests the utility of customized, stage-specific interventions based on individualized assessments to improve ACP.

  6. Characteristics of Patients With Existing Advance Directives: Evaluating Motivations Around Advance Care Planning.

    PubMed

    Genewick, Joanne E; Lipski, Dorothy M; Schupack, Katherine M; Buffington, Angela L H

    2018-04-01

    Although 80% of patients endorse an advance directive (AD), less than 35% of American adults have a documented AD. Much research has been done on barriers to creating ADs; however, there is a paucity of research addressing motivations for creating ADs. Previous research has identified 4 categories of influence for engaging in advance care planning (ACP). This study aimed to quantify the influence of these 4 motivating categories in creating an AD. Participants included 238 adults with documented ADs. Participants completed an 11-item questionnaire addressing 1 of the 4 hypothesized categories of influence in addressing ACP: concern for self; concern for others; expectations about the impact of ACP; and anecdotes, stories, and experiences. Principle component analysis yielded 2 factors representing dignity and personal control (intrinsic factors) and societal and familial influence (extrinsic factors). Intrinsic factors were the primary and most influential motivating factors among participants. A regression analysis of individual motivating factors showed that prior to age 50, the desire to provide guidance about personal preferences for end-of-life care significantly predicted the creation of an AD, whereas after age 50, the urging of family members significantly predicted the creation of an AD. Results indicated that intrinsic factors were the most influential motivator among participants of all ages. Extrinsic factors appeared to be less influential in the decision to create an AD. Motivating factors were also found to vary by age. These results may help physicians be more targeted in discussions surrounding ADs, thus saving time, which physicians identify as the main barrier in engaging in such discussions, while meeting patients' wishes for their physicians to bring up the topic of ADs.

  7. Completing advance directives for health care decisions: getting to yes.

    PubMed

    Shewchuk, T R

    1998-09-01

    The concept of advance directives for health care decision making has been judicially condoned, legislatively promoted, and systematically implemented by health care institutions, yet the execution rate of advance directives remains low. Physicians should discuss with their patients advance care planning generally and end-of-life issues specifically, preferably when patients are in good health and not when they face an acute medical crisis. The physician-hospital relationship poses particular challenges for the optimal implementation of advance directives that must be addressed. Hospital administrators must improve education of patients and physicians on the value of such documents as well as internal mechanisms to ensure better implementation of directives. Health insurance plans may be better able to ensure optimal gathering and implementation of directives. Patients must become more familiar and more comfortable with advance care planning and the reality of death and dying issues. Full acceptance of the value of directives ultimately rests on achieving full participation of all involved--providers, patients, families, and payors--in this most profound process.

  8. Keeping all options open: Parents' approaches to advance care planning.

    PubMed

    Beecham, Emma; Oostendorp, Linda; Crocker, Joanna; Kelly, Paula; Dinsdale, Andrew; Hemsley, June; Russell, Jessica; Jones, Louise; Bluebond-Langner, Myra

    2017-08-01

    Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. To investigate how parents of children and young people with LLCs approach and experience ACP. Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely. © 2016 The Authors Health Expectations Published by John Wiley & Sons Ltd.

  9. Teaching Medical Students About “The Conversation”: An Interactive Value-Based Advance Care Planning Session

    PubMed Central

    Lum, Hillary D.; Dukes, Joanna; Church, Skotti; Abbott, Jean; Youngwerth, Jean M.

    2017-01-01

    Background Advance care planning (ACP) promotes care consistent with patient wishes. Medical education should teach how to initiate value-based ACP conversations. Objective To develop and evaluate an ACP educational session to teach medical students a value-based ACP process and to encourage students to take personal ACP action steps. Design Groups of third-year medical students participated in a 75-minute session using personal reflection and discussion framed by The Conversation Starter Kit. The Conversation Project is a free resource designed to help individuals and families express their wishes for end-of-life care. Setting and Participants One hundred twenty-seven US third-year medical students participated in the session. Measurements Student evaluations immediately after the session and 1 month later via electronic survey. Results More than 90% of students positively evaluated the educational value of the session, including rating highly the opportunities to reflect on their own ACP and to use The Conversation Starter Kit. Many students (65%) reported prior ACP conversations. After the session, 73% reported plans to discuss ACP, 91% had thought about preferences for future medical care, and 39% had chosen a medical decision maker. Only a minority had completed an advance directive (14%) or talked with their health-care provider (1%). One month later, there was no evidence that the session increased students’ actions regarding these same ACP action steps. Conclusion A value-based ACP educational session using The Conversation Starter Kit successfully engaged medical students in learning about ACP conversations, both professionally and personally. This session may help students initiate conversations for themselves and their patients. PMID:28273761

  10. Advance Care Planning: Understanding Clinical Routines and Experiences of Interprofessional Team Members in Diverse Health Care Settings.

    PubMed

    Arnett, Kelly; Sudore, Rebecca L; Nowels, David; Feng, Cindy X; Levy, Cari R; Lum, Hillary D

    2017-12-01

    Interprofessional health care team members consider advance care planning (ACP) to be important, yet gaps remain in systematic clinical routines to support ACP. A clearer understanding of the interprofessional team members' perspectives on ACP clinical routines in diverse settings is needed. One hundred eighteen health care team members from community-based clinics, long-term care facilities, academic clinics, federally qualified health centers, and hospitals participated in a 35-question, cross-sectional online survey to assess clinical routines, workflow processes, and policies relating to ACP. Respondents were 53% physicians, 18% advanced practice nurses, 11% nurses, and 18% other interprofessional team members including administrators, chaplains, social workers, and others. Regarding clinical routines, respondents reported that several interprofessional team members play a role in facilitating ACP (ie, physician, social worker, nurse, others). Most (62%) settings did not have, or did not know of, policies related to ACP documentation. Only 14% of settings had a patient education program. Two-thirds of the respondents said that addressing ACP is a high priority and 85% felt that nonphysicians could have ACP conversations with appropriate training. The clinical resources needed to improve clinical routines included training for providers and staff, dedicated staff to facilitate ACP, and availability of patient/family educational materials. Although interprofessional health care team members consider ACP a priority and several team members may be involved, clinical settings lack systematic clinical routines to support ACP. Patient educational materials, interprofessional team training, and policies to support ACP clinical workflows that do not rely solely on physicians could improve ACP across diverse clinical settings.

  11. "I'm Still Here": Exploring What Matters to People with Intellectual Disability during Advance Care Planning

    ERIC Educational Resources Information Center

    McKenzie, Nicola; Mirfin-Veitch, Brigit; Conder, Jennifer; Brandford, Sharon

    2017-01-01

    Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions,…

  12. Feasibility of hospital-initiated non-facilitator assisted advance care planning documentation for patients with palliative care needs.

    PubMed

    Kok, Maaike; van der Werff, Gertruud F M; Geerling, Jenske I; Ruivenkamp, Jaap; Groothoff, Wies; van der Velden, Annette W G; Thoma, Monique; Talsma, Jaap; Costongs, Louk G P; Gans, Reinold O B; de Graeff, Pauline; Reyners, Anna K L

    2018-05-24

    Advance Care Planning (ACP) and its documentation, accessible to healthcare professionals regardless of where patients are staying, can improve palliative care. ACP is usually performed by trained facilitators. However, ACP conversations would be more tailored to a patient's specific situation if held by a patient's clinical healthcare team. This study assesses the feasibility of ACP by a patient's clinical healthcare team, and analyses the documented information including current and future problems within the palliative care domains. This multicentre study was conducted at the three Groningen Palliative Care Network hospitals in the Netherlands. Patients discharged from hospital with a terminal care indication received an ACP document from clinical staff (non-palliative care trained staff at hospitals I and II; specialist palliative care nurses at hospital III) after they had held ACP conversations. An anonymised copy of this ACP document was analysed. Documentation rates of patient and contact details were investigated, and documentation of current and future problems were analysed both quantitatively and qualitatively. One hundred sixty ACP documents were received between April 2013 and December 2014, with numbers increasing for each consecutive 3-month time period. Advance directives were frequently documented (82%). Documentation rates of current problems in the social (24%), psychological (27%) and spiritual (16%) domains were low compared to physical problems (85%) at hospital I and II, but consistently high (> 85%) at hospital III. Of 545 documented anticipated problems, 92% were physical or care related in nature, 2% social, 5% psychological, and < 1% spiritual. Half of the anticipated non-physical problems originated from hospital III. Hospital-initiated ACP documentation by a patient's clinical healthcare team is feasible: the number of documents received per time period increased throughout the study period, and overall, documentation rates were

  13. Advance Care Planning Beyond Advance Directives: Perspectives from Patients and Surrogates

    PubMed Central

    McMahan, Ryan; Knight, Sara J.; Fried, Terri R.; Sudore, Rebecca L.

    2014-01-01

    Context Advance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions. Objectives To understand what steps best prepare patients and surrogates for decision making. Methods We conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38) aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semi-structured focus groups asked what activities best prepared participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus. Results Mean±SD patient age was 78±8 years and 61% were non-white. Mean±SD surrogate age was 57±10 years and 91% were non-white. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict. Conclusion Beyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities. PMID:23200188

  14. Doctors, Lawyers and Advance Care Planning: Time for Innovation to Work Together to Meet Client Needs

    PubMed Central

    Douglas, Maureen; Simon, Jessica; Fassbender, Konrad

    2016-01-01

    Health organizations in Canada have invested considerable resources in strategies to improve knowledge and uptake of advance care planning (ACP). Yet barriers persist and many Canadians do not engage in the full range of ACP behaviours, including writing an advance directive and appointing a legally authorized decision-maker. Not engaging effectively in ACP disadvantages patients, their loved ones and their healthcare providers. This article advocates for greater collaboration between health and legal professionals to better support clients in ACP and presents a framework for action to build connections between these typically siloed professions. PMID:28032821

  15. Barriers and strategies to an iterative model of advance care planning communication.

    PubMed

    Ahluwalia, Sangeeta C; Bekelman, David B; Huynh, Alexis K; Prendergast, Thomas J; Shreve, Scott; Lorenz, Karl A

    2015-12-01

    Early and repeated patient-provider conversations about advance care planning (ACP) are now widely recommended. We sought to characterize barriers and strategies for realizing an iterative model of ACP patient-provider communication. A total of 2 multidisciplinary focus groups and 3 semistructured interviews with 20 providers at a large Veterans Affairs medical center. Thematic analysis was employed to identify salient themes. Barriers included variation among providers in approaches to ACP, lack of useful information about patient values to guide decision making, and ineffective communication between providers across settings. Strategies included eliciting patient values rather than specific treatment choices and an increased role for primary care in the ACP process. Greater attention to connecting providers across the continuum, maximizing the potential of the electronic health record, and linking patient experiences to their values may help to connect ACP communication across the continuum. © The Author(s) 2014.

  16. Current advance care planning practice in the Australian community: an online survey of home care package case managers and service managers.

    PubMed

    Sellars, Marcus; Detering, Karen M; Silvester, William

    2015-04-23

    Advance care planning (ACP) is the process of planning for future healthcare that is facilitated by a trained healthcare professional, whereby a person's values, beliefs and treatment preferences are made known to guide clinical decision-making at a future time when they cannot communicate their decisions. Despite the potential benefits of ACP for community aged care clients the availability of ACP is unknown, but likely to be low. In Australia many of these clients receive services through Home Care Package (HCP) programs. This study aimed to explore current attitudes, knowledge and practice of advance care planning among HCP service managers and case managers. An invitation to take part in a cross-sectional online survey was distributed by email to all HCP services across Australia in November 2012. Descriptive analyses were used to examine overall patterns of responses to each survey item in the full sample. 120 (response rate 25%) service managers and 178 (response rate 18%) case managers completed the survey. Only 34% of services had written ACP policies and procedures in place and 48% of case managers had previously completed any ACP training. In addition, although most case managers (70%) had initiated an ACP discussion in the past 12 months and viewed ACP as part of their role, the majority of the conversations (80%) did not result in documentation of the client's wishes and most (85%) of the case managers who responded did not believe ACP was done well within their service. This survey shows low organisational ACP systems and support for case managers and a lack of a normative approach to ACP across Australian HCP services. As HCPs become more prevalent it is essential that a model of ACP is developed and evaluated in this setting, so that clients have the opportunity to discuss and document their future healthcare wishes if they choose to.

  17. Advance care planning and end-of-life care in a network of rural Western Australian hospitals.

    PubMed

    Auret, Kirsten; Sinclair, Craig; Averill, Barbara; Evans, Sharon

    2015-08-01

    To provide a current perspective on end-of-life (EOL) care in regional Western Australia, with a particular focus on the final admission prior to death and the presence of documented advance care planning (ACP). Retrospective medical notes audit. One regional hospital (including colocated hospice) and four small rural hospitals in the Great Southern region of Western Australia. Ninety recently deceased patients, who died in hospitals in the region. Fifty consecutive patients from the regional hospital and 10 consecutive patients from each of the four rural hospitals were included in the audit. A retrospective medical notes audit was undertaken. A 94-item audit tool assessed patient demographics, primary diagnosis, family support, status on admission and presence of documented ACP. Detailed items described the clinical care delivered during the final admission, including communication with family, referral to palliative care, transfers, medical investigations, medical treatments and use of EOL care pathways. Fifty-two per cent were women; median age was 82 years old. Forty per cent died of malignancy. Median length of stay was 7 days. Thirty-nine per cent had formal or informal ACP documented. Rural hospitals performed comparably with the regional hospital on all measures. This study provides benchmarking information that can assist other rural hospitals and suggests ongoing work on optimal methods of measuring quality in EOL care. © 2015 National Rural Health Alliance Inc.

  18. Concordance of Advance Care Plans With Inpatient Directives in the Electronic Medical Record for Older Patients Admitted From the Emergency Department.

    PubMed

    Grudzen, Corita R; Buonocore, Philip; Steinberg, Jonathan; Ortiz, Joanna M; Richardson, Lynne D

    2016-04-01

    Measuring What Matters identified quality indicators to examine the percentage of patients with documentation of a surrogate decision maker and preferences for life-sustaining treatments. To determine the rate of advance care planning in older adults presenting to the emergency department (ED) and translation into medical directives in the electronic medical record (EMR). A convenience sample of adults 65 years or older was recruited from a large urban ED beginning in January 2012. We administered a baseline interview and survey in English or Spanish, including questions about whether patients had a documented health care proxy or living will. For patients admitted to the hospital who had a health care proxy or living will, chart abstraction was performed to determine whether their advance care preferences were documented in the EMR. From February 2012 to May 2013, 53.8% (367 of 682) of older adults who completed the survey in the ED reported having a health care proxy, and 40.2% (274 of 682) had a living will. Of those admitted to the hospital, only 4% (4 of 94) of patients who said they had a living will had medical directives documented in the EMR. Similarly, only 4% (5 of 115) of patients who had a health care proxy had the person's name or contact information documented in their medical record. About half of the patients 65 years or older arriving in the ED have done significant advance care planning, but most plans are not recorded in the EMR. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  19. Advance care planning in dementia: recommendations for healthcare professionals.

    PubMed

    Piers, Ruth; Albers, Gwenda; Gilissen, Joni; De Lepeleire, Jan; Steyaert, Jan; Van Mechelen, Wouter; Steeman, Els; Dillen, Let; Vanden Berghe, Paul; Van den Block, Lieve

    2018-06-21

    Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. No high-quality guidelines are available for ACP in dementia care. By combining evidence

  20. Economic (gross cost) analysis of systematically implementing a programme of advance care planning in three Irish nursing homes.

    PubMed

    O'Sullivan, Ronan; Murphy, Aileen; O'Caoimh, Rónán; Cornally, Nicola; Svendrovski, Anton; Daly, Brian; Fizgerald, Carol; Twomey, Cillian; McGlade, Ciara; Molloy, D William

    2016-04-26

    Although advance care planning (ACP) and the use of advanced care directives (ACD) and end-of-life care plans are associated with a reduction in inappropriate hospitalisation, there is little evidence supporting the economic benefits of such programmes. We assessed the economic impact (gross savings) of the Let Me Decide (LMD) ACP programme in Ireland, specifically the impact on hospitalisations, bed days and location of resident deaths, before and after systematic implementation of the LMD-ACP combined with a palliative care education programme. The LMD-ACP was introduced into three long-term care (LTC) facilities in Southern Ireland and outcomes were compared pre and post implementation. In addition, 90 staff were trained in a palliative care educational programme. Economic analysis including probabilistic sensitivity analysis was performed. The uptake of an ACD or end-of-life care post-implementation rose from 25 to 76%. Post implementation, there were statistically significant decreases in hospitalisation rates from baseline (hospitalisation incidents declined from 27.8 to 14.6%, z = 3.96, p < 0.001; inpatient hospital days reduced from 0.54 to 0.36%, z = 8.85, p < 0.001). The percentage of hospital deaths also decreased from 22.9 to 8.4%, z = 3.22, p = 0.001. However, length of stay (LOS) increased marginally (7-9 days). Economic analysis suggested a cost-reduction related to reduced hospitalisations ranging between €10 and €17.8 million/annum and reduction in ambulance transfers, estimated at €0.4 million/annum if these results were extrapolated nationally. When unit costs and LOS estimates were varied in scenario analyses, the expected cost reduction owing to reduced hospitalisations, ranged from €17.7 to €42.4 million nationally. Implementation of the LMD-ACP (ACD/end-of-life care plans combined with palliative care education) programme resulted in reduced rates of hospitalisation. Despite an increase in LOS, likely reflecting more complex care

  1. Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

    PubMed

    Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

    2016-10-01

    Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P < 0.001) and 11 percentage points higher (P < 0.001) within the information and care planning domain compared with those without a consult. Early palliative care specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

  2. Opening end-of-life discussions: how to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults.

    PubMed

    Zadeh, Sima; Pao, Maryland; Wiener, Lori

    2015-06-01

    Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions. We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™. Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers. Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

  3. Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children.

    PubMed

    Nilsson, Matthew E; Maciejewski, Paul K; Zhang, Baohui; Wright, Alexi A; Trice, Elizabeth D; Muriel, Anna C; Friedlander, Robert J; Fasciano, Karen M; Block, Susan D; Prigerson, Holly G

    2009-01-15

    Clinicians observe that advanced cancer patients with dependent children agonize over the impact their death will have on their children. The objective of this study was to determine empirically whether advanced cancer patients with and without dependent children differ in treatment preferences, mental health, and end-of-life (EOL) outcomes. Coping with Cancer is a National Cancer Institute/National Institute of Mental Health-funded, multi-institutional, prospective cohort study of 668 patients with advanced cancer. Patients with and without dependent children were compared on rates of psychiatric disorders, advance care planning (ACP), EOL care, quality of their last week of life, and location of death. In adjusted analyses, patients with advanced cancer who had dependent children were more likely to meet panic disorder criteria (adjusted odds ratio [AOR], 5.41; 95% confidence interval [95% CI], 2.13-13.69), more likely to be worried (mean difference in standard deviations [delta], 0.09; P=.006), and more likely to prefer aggressive treatment over palliative care (AOR, 1.77; 95% CI, 1.07-2.93). Patients with dependent children were less likely to engage in ACP (eg, do not resuscitate orders: AOR, 0.44; 95% CI, 0.26-0.75) and had a worse quality of life in the last week of life (delta, 0.15; P=.007). Among spousal caregivers, those with dependent children were more likely to meet criteria for major depressive disorder (AOR, 4.53; 95% CI, 1.47-14) and generalized anxiety disorder (AOR, 3.95; 95% CI, 1.29-12.16). Patients with dependent children were more anxious, were less likely to engage in ACP, and were more likely to have a worse quality of life in their last week of life. Advanced cancer patients and spousal caregivers with dependent children represent a particularly distressed group that warrants further clinical attention, research, and support. Copyright (c) 2009 American Cancer Society.

  4. Advance Care Planning in Nursing Homes and Assisted Living Communities

    PubMed Central

    Daaleman, Timothy P.; Williams, Christianna S.; Preisser, John S.; Sloane, Philip D.; Biola, Holly; Zimmerman, Sheryl

    2009-01-01

    Objectives To determine the prevalence and characteristics of advance care planning (ACP) among persons dying in long-term care (LTC) facilities, and to examine the relationship between respondent, facility, decedent, and family characteristics and ACP. Design After-death interviews of family members of decedents and facility liaisons where decedents received care. Setting Stratified sample of 164 residential care/assisted living facilities and nursing homes in Florida, Maryland, New Jersey, and North Carolina. Subjects Family members and facility liaisons who gave 446 and 1014 reports, respectively, on 1015 decedent residents. Measurements Reports of death/dying discussions, known treatment preferences, and reports and records of signed living wills (LW), health care powers of attorney (HCPOA), do-not-resuscitate orders, and do-not-hospitalize orders. Results Family respondents reported a higher prevalence, compared with facility reports, of HCPOAs (92% vs 49%) and LWs (84% vs 43%). In family reports, non-white race and no private insurance were significantly associated with lower prevalence of LWs and HCPOAs; additionally, residing in nursing homes (vs assisted living facilities) and in North Carolina were associated with lower prevalence of reported LWs. In facility reports, non-white race, unexpected death and residing in North Carolina or Maryland were significantly associated with lower prevalence of LWs, whereas high Medicaid case mix, intact cognitive status and high family involvement were associated with lower prevalence of HCPOAs. Concordance of family and facility reporting of HCPOAs was significantly greater in facilities with fewer than 120 beds. Conclusions The prevalence of ACP in LTC is much higher than previously described, and there is marked variation in characteristics associated with ACP, despite moderately high concordance, when reported by the facility or family caregivers. PMID:19426940

  5. The development and piloting of the REnal specific Advanced Communication Training (REACT) programme to improve Advance Care Planning for renal patients.

    PubMed

    Bristowe, Katherine; Shepherd, Kate; Bryan, Liz; Brown, Heather; Carey, Irene; Matthews, Beverley; O'Donoghue, Donal; Vinen, Katie; Murtagh, Fliss E M

    2014-04-01

    In recent years, the End-Stage Kidney Disease population has increased and is ever more frail, elderly and co-morbid. A care-focused approach needs to be incorporated alongside the disease focus, to identify those who are deteriorating and improve communication about preferences and future care. Yet many renal professionals feel unprepared for such discussions. To develop and pilot a REnal specific Advanced Communication Training (REACT) programme to address the needs of End-Stage Kidney Disease patients and renal professionals. Two-part study: (1) development of the REnal specific Advanced Communication Training programme informed by multi-professional focus group and patient survey and (2) piloting of the programme. The REnal specific Advanced Communication Training programme was piloted with 16 participants (9 renal nurses/health-care assistants and 7 renal consultants) in two UK teaching hospitals. The focus group identified the need for better information about end-of-life phase, improved awareness of patient perspectives, skills to manage challenging discussions, 'hands on' practice in a safe environment and follow-up to discuss experiences. The patient survey demonstrated a need to improve communication about concerns, treatment plans and decisions. The developed REnal specific Advanced Communication Training programme was acceptable and feasible and was associated with a non-significant increase in confidence in communicating about end-of-life issues (pre-training: 6.6/10, 95% confidence interval: 5.7-7.4; post-training: 6.9/10, 95% confidence interval: 6.1-7.7, unpaired t-test - p = 0.56), maintained at 3 months. There is a need to improve end-of-life care for End-Stage Kidney Disease patients, to enable them to make informed decisions about future care. Challenges include prioritising communication training among service providers.

  6. A survey of older peoples' attitudes towards advance care planning.

    PubMed

    Musa, Irfana; Seymour, Jane; Narayanasamy, Melanie Jay; Wada, Taizo; Conroy, Simon

    2015-05-01

    advance care planning (ACP) is a process to establish an individual's preference for care in the future; few UK studies have been conducted to ascertain public attitudes towards ACP. the aim of this study was to assess the attitudes of older people in East Midlands through the development and administration of a survey. the survey questionnaire was developed on the basis of a literature review, exploratory focus groups with older adults and expert advisor input. The final questions were then re-tested with lay volunteers. thirteen general practices were enrolled to send out surveys to potential participants aged 65 or older. There were no additional inclusion or exclusion criteria for participants. simple descriptive statistics were used to describe the responses and regression analyses were used to evaluate which items predicted responses to key outcomes. of the 5,375 (34%) community-dwelling older peoples, 1,823 returned questionnaires. Seventeen per cent of respondents had prepared an ACP document; of whom, 4% had completed an Advance Decision to Refuse Treatment (ADRT). Five per cent of respondents stated that they had been offered an opportunity to talk about ACP. Predictors of completing an ACP document included: being offered the opportunity to discuss ACP, older age, better physical function and male gender. Levels of trust were higher for families than for professionals. One-third of the respondents would be interested in talking about ACP if sessions were available. although a third of the respondents were in favour of discussing ACP if the opportunity was available with their GP, only a relative minority (17%) had actively engaged. Preferences were for informal discussions with family rather than professionals. © The Author 2015. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  7. Advance care planning for patients with amyotrophic lateral sclerosis.

    PubMed

    Levi, Benjamin H; Simmons, Zachary; Hanna, Courtney; Brothers, Allyson; Lehman, Erik; Farace, Elana; Bain, Megan; Stewart, Renee; Green, Michael J

    2017-08-01

    To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions (n = 18) for patients. After patients indicated their agreement with the team's decisions, concordance was calculated. The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient's wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. A computer based ACP decision-aid can significantly improve clinicians' understanding of ALS patients' wishes with regard to end-of-life medical care.

  8. End-of-Life Care Planning in Accountable Care Organizations: Associations with Organizational Characteristics and Capabilities.

    PubMed

    Ahluwalia, Sangeeta C; Harris, Benjamin J; Lewis, Valerie A; Colla, Carrie H

    2018-06-01

    To measure the extent to which accountable care organizations (ACOs) have adopted end-of-life (EOL) care planning processes and characterize those ACOs that have established processes related to EOL. This study uses data from three waves (2012-2015) of the National Survey of ACOs. Respondents were 397 ACOs participating in Medicare, Medicaid, and commercial ACO contracts. This is a cross-sectional survey study using multivariate ordered logit regression models. We measured the extent to which the ACO had adopted EOL care planning processes as well as organizational characteristics, including care management, utilization management, health informatics, and shared decision-making capabilities, palliative care, and patient-centered medical home experience. Twenty-one percent of ACOs had few or no EOL care planning processes, 60 percent had some processes, and 19.6 percent had advanced processes. ACOs with a hospital in their system (OR: 3.07; p = .01), and ACOs with advanced care management (OR: 1.43; p = .02), utilization management (OR: 1.58, p = .00), and shared decision-making capabilities (OR: 16.3, p = .000) were more likely to have EOL care planning processes than those with no hospital or few to no capabilities. There remains considerable room for today's ACOs to increase uptake of EOL care planning, possibly by leveraging existing care management, utilization management, and shared decision-making processes. © Health Research and Educational Trust.

  9. Advance Care Planning in Nursing Home Patients With Dementia: A Qualitative Interview Study Among Family and Professional Caregivers.

    PubMed

    van Soest-Poortvliet, Mirjam C; van der Steen, Jenny T; Gutschow, Giselka; Deliens, Luc; Onwuteaka-Philipsen, Bregje D; de Vet, Henrica C W; Hertogh, Cees M P M

    2015-11-01

    The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. A qualitative descriptive study. A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most

  10. Strategic planning by the palliative care steering committee of the Middle East Cancer Consortium.

    PubMed

    Moore, Shannon Y; Pirrello, Rosene D; Christianson, Sonya K; Ferris, Frank D

    2011-04-01

    High quality comprehensive palliative care is a critical need for millions of patients and families, but remains only a dream in many parts of the world. The failure to do a strategic planning process is one obstacle to advancing education and pain prevention and relief. The Middle Eastern Cancer Consortium Steering Committee attendees completed an initial strategic planning process and identified "developmental steps" to advance palliative care. Underscoring the multi-disciplinary nature of comprehensive palliative care, discipline-specific planning was done (adult and pediatric cancer and medicine, pharmacy, nursing) in a separate process from country-specific planning. Delineating the layers of intersection and differences between disciplines and countries was very powerful. Finding the common strengths and weaknesses in the status quo creates the potential for a more powerful regional response to the palliative care needs. Implementing and refining these preliminary strategic plans will augment and align the efforts to advance palliative care education and pain management in the Middle East. The dream to prevent and relieve suffering for millions of patients with advanced disease will become reality with a powerful strategic planning process well implemented.

  11. "I just think that we should be informed" a qualitative study of family involvement in advance care planning in nursing homes.

    PubMed

    Thoresen, Lisbeth; Lillemoen, Lillian

    2016-11-10

    As part of the research project "End-of-life Communication in Nursing Homes. Patient Preferences and Participation", we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members' participation and involvement in ACP- conversations may promote nursing home patients' participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients' participation in advance care planning. Participant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues. We found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives' involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient's life at the time. The third analytical theme is patients' and relatives' shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death. An individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the

  12. How do Dutch primary care providers overcome barriers to advance care planning with older people? A qualitative study.

    PubMed

    Glaudemans, Jolien J; de Jong, Anja E; Onwuteaka Philipsen, Bregje D; Wind, Jan; Willems, Dick L

    2018-06-11

    Few older people benefit from advance care planning (ACP), due to several barriers related to primary care professionals, such as insufficient knowledge, negative beliefs and a lack of time. Information on overcoming these barriers is limited. We assumed primary care professionals experienced in ACP with older patients are likely to have learned how to overcome these barriers. To investigate how Dutch primary care professionals experienced in ACP with older patients overcome these barriers. A qualitative study, based on semi-structured interviews, among a purposive sample of 14 Dutch primary care professionals experienced in ACP with older people. Transcripts were thematically analysed. We interviewed eight general practitioners (GPs), three nurses and three elderly care physicians, experienced in ACP with older people. Respondents overcame their own insufficient knowledge and skills, as well as their negative attitudes and beliefs by gaining experience through practicing ACP in their daily practices, exchanging and reflecting on those experiences with peers, pursuing continuing education, teaching and participating in research. To overcome patients' and families' lack of initiative and openness to ACP, respondents prepared them for further steps in ACP. To overcome a lack of time, respondents used tools and information communication technology, delegated parts of ACP to other primary care professionals, acquired financing and systematized documentation of ACP. Primary care professionals can overcome barriers to ACP with older patients by practicing, reflecting on experiences and pursuing continuing education, by preparing patients and involving family and by investing in support to approach ACP more efficiently.

  13. Older Adults More Likely to Discuss Advance Care Plans With an Attorney Than With a Physician

    PubMed Central

    Bern-Klug, Mercedes; Byram, Elizabeth A.

    2017-01-01

    Adults are encouraged to discuss their end-of-life health care preferences so that their wishes will be known and hopefully honored. The purpose of this study was to determine with whom older adults had communicated their future health care wishes and the extent to which respondents themselves were serving as a surrogate decision maker. Results from the cross-sectional online survey with 294 persons aged 50 and older reveal that among the married, over 80% had a discussion with their spouse and among those with an adult child, close to two thirds (64%) had. Over a third had discussed preferences with an attorney and 23% with a physician. Close to half were currently serving as a surrogate decision maker or had been asked to and had signed papers to formalize their role. 18% did not think that they were a surrogate but were not sure. More education is needed to emphasize the importance of advance care planning with a medical professional, especially for patients with advanced chronic illness. More education and research about the role of surrogate medical decision makers is called for. PMID:29201947

  14. Care plans and care planning in long-term conditions: a conceptual model.

    PubMed

    Burt, Jenni; Rick, Jo; Blakeman, Thomas; Protheroe, Joanne; Roland, Martin; Bower, Pete

    2014-10-01

    The prevalence and impact of long-term conditions continues to rise. Care planning for people with long-term conditions has been a policy priority for chronic disease management in a number of health-care systems. However, patients and providers appear unclear about the formulation and implementation of care planning. Further work in this area is therefore required to inform the development, implementation and evaluation of future care planning initiatives. We distinguish between 'care planning' (the process by which health-care professionals and patients discuss, agree and review an action plan to achieve the goals or behaviour change of most relevance and concern to the patient) and a 'care plan' (a written document recording the outcome of a care planning process). We propose a typology of care planning and care plans with three core dimensions: perspective (patient or professional), scope (a focus on goals or on behaviours) and networks (confined to the professional-patient dyad or extending to the entire care network). In addition, we draw on psychological models of mediation and moderation to outline potential mechanisms through which care planning and care plans may lead to improved outcomes for both patients and the wider health-care system. The proposed typology of care planning and care plans offered here, along with the model of the process by which care planning may influence outcomes, provide a useful framework for future policy developments and evaluations. Empirical work is required to explore the degree to which current care planning approaches and care plans can be described according to these dimensions, and the factors that determine which types of patients and professionals use which type of care plans.

  15. A Comprehensive Onboarding and Orientation Plan for Neurocritical Care Advanced Practice Providers.

    PubMed

    Langley, Tamra M; Dority, Jeremy; Fraser, Justin F; Hatton, Kevin W

    2018-06-01

    As the role of advanced practice providers (APPs) expands to include increasingly complex patient care within the intensive care unit, the educational needs of these providers must also be expanded. An onboarding process was designed for APPs in the neurocritical care service line. Onboarding for new APPs revolved around 5 specific areas: candidate selection, proctor assignment, 3-phased orientation process, remediation, and mentorship. To ensure effective training for APPs, using the most time-conscious approach, the backbone of the process is a structured curriculum. This was developed and integrated within the standard orientation and onboarding process. The curriculum design incorporated measurable learning goals, objective assessments of phased goal achievements, and opportunities for remediation. The neurocritical care service implemented an onboarding process in 2014. Four APPs (3 nurse practitioners and 1 physician assistant) were employed by the department before the implementation of the orientation program. The length of employment ranged from 1 to 4 years. Lack of clinical knowledge and/or sufficient training was cited as reasons for departure from the position in 2 of the 4 APPs, as either self-expression or peer evaluation. Since implementation of this program, 12 APPs have completed the program, of which 10 remain within the division, creating an 83% retention rate. The onboarding process, including a 3-phased, structured orientation plan for neurocritical care, has increased APP retention since its implementation. The educational model, along with proctoring and mentorship, has improved clinical knowledge and increased nurse practitioner retention. A larger-scale study would help to support the validity of this onboarding process.

  16. Advance care planning--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

    PubMed

    Rietjens, Judith A C; Korfage, Ida J; Dunleavy, Lesley; Preston, Nancy J; Jabbarian, Lea J; Christensen, Caroline Arnfeldt; de Brito, Maja; Bulli, Francesco; Caswell, Glenys; Červ, Branka; van Delden, Johannes; Deliens, Luc; Gorini, Giuseppe; Groenvold, Mogens; Houttekier, Dirk; Ingravallo, Francesca; Kars, Marijke C; Lunder, Urška; Miccinesi, Guido; Mimić, Alenka; Paci, Eugenio; Payne, Sheila; Polinder, Suzanne; Pollock, Kristian; Seymour, Jane; Simonič, Anja; Johnsen, Anna Thit; Verkissen, Mariëtte N; de Vries, Esther; Wilcock, Andrew; Zwakman, Marieke; van der Heide Pl, Agnes

    2016-04-08

    Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. Transferring the concept of ACP from care of the elderly to patients with

  17. A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: study protocol.

    PubMed

    Korfage, Ida J; Rietjens, Judith A C; Overbeek, Anouk; Jabbarian, Lea J; Billekens, Pascalle; Hammes, Bernard J; Hansen-van der Meer, Ellen; Polinder, Suzanne; Severijnen, Johan; Swart, Siebe J; Witkamp, Frederika E; van der Heide, Agnes

    2015-07-22

    Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. Nederlands Trial Register: NTR4454.

  18. Advance Care Planning in Patients with Primary Malignant Brain Tumors: A Systematic Review

    PubMed Central

    Song, Krystal; Amatya, Bhasker; Voutier, Catherine; Khan, Fary

    2016-01-01

    Advance care planning (ACP) is a process of reflection and communication of a person’s future health care preferences, and has been shown to improve end-of-life (EOL) care for patients. The aim of this systematic review is to present an evidence-based overview of ACP in patients with primary malignant brain tumors (pmBT). A comprehensive literature search was conducted using medical and health science electronic databases (PubMed, Cochrane, Embase, MEDLINE, ProQuest, Social Care Online, Scopus, and Web of Science) up to July 2016. Manual search of bibliographies of articles and gray literature search were also conducted. Two independent reviewers selected studies, extracted data, and assessed the methodologic quality of the studies using the Critical Appraisal Skills Program’s appraisal tools. All studies were included irrespective of the study design. A meta-analysis was not possible due to heterogeneity amongst included studies; therefore, a narrative analysis was performed for best evidence synthesis. Overall, 19 studies were included [1 randomized controlled trial (RCT), 17 cohort studies, 1 qualitative study] with 4686 participants. All studies scored “low to moderate” on the methodological quality assessment, implying high risk of bias. A single RCT evaluating a video decision support tool in facilitating ACP in pmBT patients showed a beneficial effect in promoting comfort care and gaining confidence in decision-making. However, the effect of the intervention on quality of life and care at the EOL were unclear. There was a low rate of use of ACP discussions at the EOL. Advance directive completion rates and place of death varied between different studies. Positive effects of ACP included lower hospital readmission rates, and intensive care unit utilization. None of the studies assessed mortality outcomes associated with ACP. In conclusion, this review found some beneficial effects of ACP in pmBT. The literature still remains limited in this area, with

  19. Care plans and care planning in long term conditions: a conceptual model

    PubMed Central

    Burt, J; Rick, J; Blakeman, T; Protheroe, J; Roland, M; Bower, P

    2013-01-01

    The prevalence and impact of long term conditions continues to rise. Care planning for people with long term conditions has been a policy priority for chronic disease management in a number of health care systems. However, patients and providers appear unclear about the formulation and implementation of care planning. Further work in this area is therefore required to inform the development, implementation and evaluation of future care planning initiatives. We distinguish between ‘care planning’ (the process by which health care professionals and patients discuss, agree and review an action plan to achieve the goals or behaviour change of most relevance and concern to the patient) and a ‘care plan’ (a written document recording the outcome of a care planning process). We propose a typology of care planning and care plans with three core dimensions: perspective (patient or professional), scope (a focus on goals or on behaviours) and networks (confined to the professional-patient dyad or extending to the entire care network). In addition, we draw on psychological models of mediation and moderation to outline potential mechanisms through which care planning and care plans may lead to improved outcomes for both patients and the wider health care system. The proposed typology of care planning and care plans offered here, along with the model of the process by which care planning may influence outcomes, provide a useful framework for future policy developments and evaluations. Empirical work is required to explore the degree to which current care planning approaches and care plans can be described according to these dimensions, and the factors that determine which types of patients and professionals use which type of care plans. PMID:23883621

  20. Implementing an Advance Care Planning Intervention in Community Settings with Older Latinos: A Feasibility Study.

    PubMed

    Nedjat-Haiem, Frances R; Carrion, Iraida V; Gonzalez, Krystyna; Quintana, Alejandra; Ell, Kathleen; O'Connell, Mary; Thompson, Beti; Mishra, Shiraz I

    2017-09-01

    Older Latinos with serious medical conditions such as cancer and other chronic diseases lack information about advance care planning (ACP). ACP Intervention (ACP-I Plan) was designed for informational and communication needs of older Latinos to improve communication and advance directives (ADs). To determine the feasibility of implementing ACP-I Plan among seriously ill, older Latinos (≥50 years) in Southern New Mexico with one or more chronic diseases (e.g., cancer, heart disease, renal/liver failure, stroke, hypertension, diabetes, chronic obstructive pulmonary disease, and HIV/AIDS). We conducted a prospective, pretest/post-test, two-group, randomized, community-based pilot trial by using mixed data collection methods. Older Latino/Hispanic participants were recruited from community-based settings in Southern New Mexico. All participants received ACP education, whereas the intervention group added: (1) emotional support addressing psychological distress; and (2) systems navigation for resource access, all of which included interactive ACP treatment decisional support and involved motivational interview (MI) methods. Purposive sampling was guided by a sociocultural framework to recruit Latino participants from community-based settings in Southern New Mexico. Feasibility of sample recruitment, implementation, and retention was assessed by examining the following: recruitment strategies, trial enrollment, retention rates, duration of MI counseling, type of visit (home vs. telephone), and satisfaction with the program. We contacted 104 patients, enrolled 74 randomized to usual care 39 (UC) and treatment 35 (TX) groups. Six dropped out before the post-test survey, three from TX before the post-test survey because of sickness (n = 1) or could not be located (n = 2), and the same happened for UC. Completion rates were 91.4% UC and 92.3% TX groups. All participants were Latino/Hispanic, born in the United States (48%) or Mexico (51.4%) on average in the United

  1. Exploring Advance Care Planning in Taiwanese Indigenous Cancer Survivors: Proposal for a Pilot Case-Control Study.

    PubMed

    Li, In-Fun; Hsiung, Yvonne

    2017-12-21

    Research on Taiwanese indigenous cancer survivors' end-of-life (EOL) planning is still in its infancy, despite recent government and societal efforts to promote quality EOL care. Previous national studies in Taiwan have characterized indigenous peoples as a socioeconomically disadvantaged minority group. Compared with their mainstream cohorts, these remote residents are vulnerable to multiple social welfare problems, receiving and accessing little in the way of health care in rural mountain areas. Although advance care planning (ACP) has been shown to help patients achieve better quality of dying, very little is known about indigenous intentions for such interventions. Relevant studies are scarce in Taiwan, and programs for cancer survivors have been based almost entirely on nonindigenous populations. Since there has been no research on Taiwanese indigenous people's aims for ACP, there is a need to understand the impact of survivorship on ACP readiness among those who are currently living with, through, and beyond cancer. We aim to identify differences in ACP intent and readiness among indigenous peoples with and without cancer diagnoses. We will identify the impact of factors such as tribal cultural beliefs and quality of life along with cancer exposure on the outcome of ACP readiness differences. In particular, we will examine the effects of ACP knowledge from previous ACP participation, EOL care experiences, and personal registry status of Do-Not-Resuscitate (DNR) in the national database. A secondary objective is to describe indigenous people's intent to participate in public education related to EOL planning. A descriptive case-control study (N=200) is proposed where controls are matched to cases' attributes of age, gender, and cancer diagnosis. This matching analysis allows assessment of cancer as an exposure while taking into account age and gender as confounding variables. We are currently in the process of training personnel and extracting clinical and

  2. Behaviors in Advance Care Planning and ACtions Survey (BACPACS): development and validation part 1.

    PubMed

    Kassam, Aliya; Douglas, Maureen L; Simon, Jessica; Cunningham, Shannon; Fassbender, Konrad; Shaw, Marta; Davison, Sara N

    2017-11-22

    Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24-38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool.

  3. Initial Experience with "Honoring Choices Wisconsin": Implementation of an Advance Care Planning Pilot in a Tertiary Care Setting.

    PubMed

    Peltier, Wendy L; Gani, Faiz; Blissitt, Jennifer; Walczak, Katherine; Opper, Kristi; Derse, Arthur R; Johnston, Fabian M

    2017-09-01

    Although previous research on advance care planning (ACP) has associated ACP with improved quality of care at the end of life, the appropriate use of ACP remains limited. To evaluate the impact of a pilot program using the "Honoring Choices Wisconsin" (HCW) model for ACP in a tertiary care setting, and to understand barriers to system-wide implementation. Retrospective review of prospectively collected data. Patients who received medical or surgical oncology care at Froedtert and the Medical College of Wisconsin. Patient demographics, disease characteristics, patient satisfaction, and clinical outcomes. Data from 69 patients who died following the implementation of the HCW program were reviewed; 24 patients were enrolled in the HCW program while 45 were not. Patients enrolled in HCW were proportionally less likely to be admitted to the ICU (12.5% vs. 17.8%) and were more likely to be "do not resuscitate" (87.5% vs. 80.0%), as well as have a completed ACP (83.3% vs. 79.1%). Furthermore, admission to a hospice was also higher among patients who were enrolled in the HCW program (79.2% vs. 25.6%), with patients enrolled in HCW more likely to die in hospice (70.8% vs. 53.3%). The HCW program was favorably viewed by patients, patient caregivers, and healthcare providers. Implementation of a facilitator-based ACP care model was associated with fewer ICU admissions, and a higher use of hospice care. System-level changes are required to overcome barriers to ACP that limit patients from receiving end-of-life care in accordance with their preferences.

  4. Practice and Perceived Importance of Advance Care Planning and Difficulties in Providing Palliative Care in Geriatric Health Service Facilities in Japan: A Nationwide Survey.

    PubMed

    Yokoya, Shoji; Kizawa, Yoshiyuki; Maeno, Takami

    2018-03-01

    The provision of end-of-life (EOL) care by geriatric health service facilities (GHSFs) in Japan is increasing. Advance care planning (ACP) is one of the most important issues to provide quality EOL care. This study aimed to clarify the practice and perceived importance of ACP and the difficulties in providing palliative care in GHSFs. A self-report questionnaire was mailed to head nurses at 3437 GHSFs nationwide. We asked participants about their practices regarding ACP, their recognition of its importance, and their difficulties in providing palliative care. We also analyzed the relationship between these factors and EOL care education. Among 844 respondents (24.5% response rate), approximately 69% to 81% of head nurses confirmed that GHSF residents and their families understood disease conditions and goals of care. There was a large discrepancy between the actual practice of ACP components and the recognition of their importance (eg, asking residents about existing advance directive [AD; 27.5% practiced it, while 79.6% considered it important]; recommending completion of an AD [18.1% vs 68.4%], and asking for designation of a health-care proxy [30.4% vs 76.8%]). The EOL care education was provided at 517 facilities (61.3%). Head nurses working at EOL care education-providing GHSFs practiced ACP significantly more frequently and had significantly fewer difficulties in providing palliative care. A large discrepancy was found between GHSF nurses' practice of ACP and their recognition of its importance. Providing EOL care education in GHSFs may increase ACP practices and enhance respect for resident's preferences concerning EOL care.

  5. "My son is still walking": stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy.

    PubMed

    Erby, Lori Hamby; Rushton, Cynda; Geller, Gail

    2006-06-01

    Duchenne muscular dystrophy is an inherited progressive neuromuscular disease that generally results in death by early adulthood. Because of its life-threatening nature, discussions of advance care planning are extremely relevant to families with affected children and adolescents. Seventeen parents of sons with Duchenne muscular dystrophy were interviewed about their attitudes, experiences, and the nature of their discussions about these topics. Parents showed a lack of familiarity with and experience communicating about advance care planning. They also discussed opportunities for communication that centered on transitional life events. Parents appeared to vacillate between hope for future treatments, avoidance of emotionally difficult aspects of the disease, and presence with the fullness of life's experiences. These data suggest a model for future research in which windows of opportunity for discussion may exist as sons are approaching significant transitional milestones and parents are able to see the world through a lens of "presence."

  6. FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers.

    PubMed

    Kimmel, Allison L; Wang, Jichuan; Scott, Rachel K; Briggs, Linda; Lyon, Maureen E

    2015-07-01

    Although the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) has become a chronic illness, disease-specific advance care planning has not yet been evaluated for the palliative care needs of adults with HIV/AIDS. This prospective, longitudinal, randomized, two-arm controlled clinical trial aims to test the efficacy of FAmily CEntered advance care planning among adults living with AIDS and/or HIV with co-morbidities on congruence in treatment preferences, healthcare utilization, and quality of life. The FAmily CEntered intervention arm is two face-to-face sessions with a trained, certified facilitator: Session 1) Disease-Specific Advance Care Planning Respecting Choices Interview; Session 2) Completion of advance directive. The Healthy Living Control arm is: Session 1) Developmental/Relationship History; Session 2) Nutrition. Follow-up data will be collected at 3, 6, 12, and 18 months post-intervention. A total of 288 patient/surrogate dyads will be enrolled from five hospital-based, out-patient clinics in Washington, District of Columbia. Participants will be HIV positive and ≥ 21 years of age; surrogates will be ≥ 18 years of age. Exclusion criteria are homicidality, suicidality, psychosis, and impaired cognitive functioning. We hypothesize that this intervention will enhance patient-centered communication with a surrogate decision-maker about end of life treatment preferences over time, enhance patient quality of life and decrease health care utilization. We further hypothesize that this intervention will decrease health disparities for Blacks in completion of advance directives. If proposed aims are achieved, the benefits of palliative care, particularly increased treatment preferences about end-of-life care and enhanced quality of life, will be extended to people living with AIDS. Copyright © 2015 Elsevier Inc. All rights reserved.

  7. Protocol for a national prevalence study of advance care planning documentation and self-reported uptake in Australia.

    PubMed

    Ruseckaite, Rasa; Detering, Karen M; Evans, Sue M; Perera, Veronica; Walker, Lynne; Sinclair, Craig; Clayton, Josephine M; Nolte, Linda

    2017-11-03

    Advance care planning (ACP) is a process between a person, their family/carer(s) and healthcare providers that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The Australian government funds a number of national initiatives aimed at increasing ACP uptake; however, there is currently no standardised Australian data on formal ACP documentation or self-reported uptake. This makes it difficult to evaluate the impact of ACP initiatives. This study aims to determine the Australian national prevalence of ACP and completion of Advance Care Directives (ACDs) in hospitals, aged care facilities and general practices. It will also explore people's self-reported use of ACP and views about the process. Researchers will conduct a national multicentre cross-sectional prevalence study, consisting of a record audit and surveys of people aged 65 years or more in three sectors. From 49 participating Australian organisations, 50 records will be audited (total of 2450 records). People whose records were audited, who speak English and have a decision-making capacity will also be invited to complete a survey. The primary outcome measure will be the number of people who have formal or informal ACP documentation that can be located in records within 15 min. Other outcomes will include demographics, measure of illness and functional capacity, details of ACP documentation (including type of document), location of documentation in the person's records and whether current clinical care plans are consistent with ACP documentation. People will be surveyed, to measure self-reported interest, uptake and use of ACP/ACDs, and self-reported quality of life. This protocol has been approved by the Austin Health Human Research Ethics Committee (reference HREC/17/Austin/83). Results will be submitted to international peer-reviewed journals and presented at international conferences. ACTRN

  8. Protocol for a national prevalence study of advance care planning documentation and self-reported uptake in Australia

    PubMed Central

    Ruseckaite, Rasa; Detering, Karen M; Perera, Veronica; Walker, Lynne; Sinclair, Craig; Clayton, Josephine M; Nolte, Linda

    2017-01-01

    Introduction Advance care planning (ACP) is a process between a person, their family/carer(s) and healthcare providers that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The Australian government funds a number of national initiatives aimed at increasing ACP uptake; however, there is currently no standardised Australian data on formal ACP documentation or self-reported uptake. This makes it difficult to evaluate the impact of ACP initiatives. This study aims to determine the Australian national prevalence of ACP and completion of Advance Care Directives (ACDs) in hospitals, aged care facilities and general practices. It will also explore people’s self-reported use of ACP and views about the process. Methods and analysis Researchers will conduct a national multicentre cross-sectional prevalence study, consisting of a record audit and surveys of people aged 65 years or more in three sectors. From 49 participating Australian organisations, 50 records will be audited (total of 2450 records). People whose records were audited, who speak English and have a decision-making capacity will also be invited to complete a survey. The primary outcome measure will be the number of people who have formal or informal ACP documentation that can be located in records within 15 min. Other outcomes will include demographics, measure of illness and functional capacity, details of ACP documentation (including type of document), location of documentation in the person’s records and whether current clinical care plans are consistent with ACP documentation. People will be surveyed, to measure self-reported interest, uptake and use of ACP/ACDs, and self-reported quality of life. Ethics and dissemination This protocol has been approved by the Austin Health Human Research Ethics Committee (reference HREC/17/Austin/83). Results will be submitted to international peer

  9. A broader understanding of care managers' attitudes of advance care planning: a concurrent nested design.

    PubMed

    Aultman, Julie; Baughman, Kristin R; Ludwick, Ruth

    2018-05-18

    To examine barriers of advance care planning (ACP) experienced by care managers (CMs) through a mixed methods approach. A concurrent nested design was used to acquire a deeper understanding of ACP, and to identify nuances between quantitative and qualitative data. Past quantitative studies on providers have identified barriers related to time, culture, knowledge, responsibility, and availability of legal documents. These barriers, and accompanying attitudes and feelings, have been taken at face value without rich qualitative data to identify under what conditions and to what extent a barrier impacts care. A two-part multisite, mixed methods study was conducted using surveys and focus groups. Surveys were completed by 458 CMs at 10 Area Agencies on Aging and 62 participated in one of 8 focus groups. Data were analyzed using a concurrent nested design with individual data analysis and a merged data approach. There were three main distinctions between the quantitative and qualitative data. First, while CMs reported on the survey that ACP was not too time consuming, focus group data revealed that time was an issue especially related to competing priorities. Second on the survey 60% of the CMS reported they had enough knowledge, but qualitative data revealed about more nuances. Last, the reported comfort levels in the quantitative data were less overt in the qualitative date where additional feelings and attitudes were revealed, e.g., frustration with families, preferences for more physician involvement. CMs reported their attitudes about ACP, clarified through a rigorous mixed methods analysis. Care managers can successfully lead ACP discussions, but require further education, resources, and team-based guidance. ACP is essential for reducing emotional, social, and financial burdens associated with health care decision-making, and CMs can positively impact ACP discussions when appropriately supported by the clinical community. The many nuances in the ACP process that we

  10. Religious Coping and Behavioral Disengagement: Opposing Influences on Advance Care Planning and Receipt of Intensive Care Near Death

    PubMed Central

    Maciejewski, Paul K.; Phelps, Andrea C.; Kacel, Elizabeth L.; Balboni, Tracy A.; Balboni, Michael; Wright, Alexi A.; Pirl, William; Prigerson, Holly G.

    2011-01-01

    Objective This study examines the relationships between methods of coping with advanced cancer, completion of advance care directives, and receipt of intensive, life-prolonging care near death. Methods The analysis is based on a sample of 345 patients interviewed between January 1, 2003, and August 31, 2007, and followed until death as part of the Coping with Cancer Study, an NCI/NIMH-funded, multi-site, prospective, longitudinal, cohort study of patients with advanced cancer. The Brief COPE was used to assess active coping, use of emotional-support, and behavioral disengagement. The Brief RCOPE was used to assess positive and negative religious coping. The main outcome was intensive, life-prolonging care near death, defined as receipt of ventilation or resuscitation in the last week of life. Results Positive religious coping was associated with lower rates of having a living will (AOR=0.39, p=0.003) and predicted higher rates of intensive, life-prolonging care near death (AOR, 5.43; p<0.001), adjusting for other coping methods and potential socio-demographic and health status confounds. Behavioral disengagement was associated with higher rates of DNR order completion (AOR, 2.78; p=0.003) and predicted lower rates of intensive life-prolonging care near death (AOR, 0.20; p=0.036). Not having a living will partially mediated the influence of positive religious coping on receipt of intensive, life-prolonging care near death. Conclusion Positive religious coping and behavioral disengagement are important determinants of completion of advance care directives and receipt of intensive, life-prolonging care near death. PMID:21449037

  11. 45 CFR 1355.54 - Submittal of advance planning documents.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 45 Public Welfare 4 2014-10-01 2014-10-01 false Submittal of advance planning documents. 1355.54 Section 1355.54 Public Welfare Regulations Relating to Public Welfare (Continued) OFFICE OF HUMAN... FAMILIES, FOSTER CARE MAINTENANCE PAYMENTS, ADOPTION ASSISTANCE, AND CHILD AND FAMILY SERVICES GENERAL...

  12. 45 CFR 1355.54 - Submittal of advance planning documents.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 45 Public Welfare 4 2011-10-01 2011-10-01 false Submittal of advance planning documents. 1355.54 Section 1355.54 Public Welfare Regulations Relating to Public Welfare (Continued) OFFICE OF HUMAN... FAMILIES, FOSTER CARE MAINTENANCE PAYMENTS, ADOPTION ASSISTANCE, AND CHILD AND FAMILY SERVICES GENERAL...

  13. 45 CFR 1355.54 - Submittal of advance planning documents.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 45 Public Welfare 4 2012-10-01 2012-10-01 false Submittal of advance planning documents. 1355.54 Section 1355.54 Public Welfare Regulations Relating to Public Welfare (Continued) OFFICE OF HUMAN... FAMILIES, FOSTER CARE MAINTENANCE PAYMENTS, ADOPTION ASSISTANCE, AND CHILD AND FAMILY SERVICES GENERAL...

  14. Patient autonomy and advance care planning: a qualitative study of oncologist and palliative care physicians' perspectives.

    PubMed

    Johnson, Stephanie B; Butow, Phyllis N; Kerridge, Ian; Tattersall, Martin H N

    2018-02-01

    Patients' are encouraged to participate in advance care planning (ACP) in order to enhance their autonomy. However, controversy exists as to what it means to be autonomous and there is limited understanding of how social and structural factors may influence cancer patients' ability to exercise their autonomy. The objective of this study is to explore oncologists' and palliative care physicians' understanding of patient autonomy, how this influences reported enactment of decision-making at the end of life (EOL), and the role of ACP in EOL care. Qualitative semi-structured interviews were conducted with consultant oncologists (n = 11) and palliative medicine doctors (n = 7) working in oncology centres and palliative care units across Australia. We found that doctors generally conceptualized autonomy in terms of freedom from interference but that there was a profound disconnect between this understanding of autonomy and clinical practice in EOL decision-making. The clinicians in our study privileged care, relationships and a 'good death' above patient autonomy, and in practice were reluctant to 'abandon' their patients to total non-interference in decision-making. Patient autonomy in healthcare is bounded, as while patients were generally encouraged to express their preferences for care, medical norms about the quality and 'reasonableness' of care, the availability of services and the patients' family relationships act to enhance or limit patients' capacity to realize their preferences. While for many, this disconnect between theory and practice did not diminish the rhetorical appeal of ACP; for others, this undermined the integrity of ACP, as well as its relevance to care. For some, ACP had little to do with patient autonomy and served numerous other ethical, practical and political functions. The ethical assumptions regarding patient autonomy embedded in academic literature and policy documents relating to ACP are disconnected from the realities of clinical care

  15. Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit.

    PubMed

    Fletcher, Sophie; Hughes, Rachel; Pickstock, Sarah; Auret, Kirsten

    2018-02-01

    Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.

  16. End-of-life care for advanced dementia patients in residential care home-a Hong Kong perspective.

    PubMed

    Luk, James K H; Chan, Felix H W

    2017-08-28

    Dementia will become more common as the population ages. Advanced dementia should be considered as a terminal illnesses and end-of-life (EOL) care is very much needed for this disease group. Currently, the EOL services provided to this vulnerable group in Hong Kong, especially those living in residential care homes, is limited. The usual practice of residential care homes is to send older residents with advanced dementia to acute hospitals when they are sick, irrespective of their wish, premorbid status, diagnoses and prognosis. This may not accord with what the patients perceive to be a "good death". There are many barriers for older people to die in place, both at home and at the residential care home. In the community, to enhance EOL care to residential care home for the elderly (RCHE) residents, pilot EOL program had been carried out by some Community Geriatric Assessment Teams. Since 2015, the Hospital Authority funded program "Enhance Community Geriatric Assessment Team Support to End-of-life Patients in Residential Care Homes for the Elderly" has been started. In the program, advance care planning (ACP), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) (non-hospitalized) order will be established and the program will be expected to cover all clusters in Hong Kong by 2018/2019. In hospital setting, EOL clinical plan and EOL ward in geriatric step-down hospitals may be able to improve the quality of death of older patients. In Sep 2015, the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill was updated. Amongst other key EOL issues, careful (comfort) hand feeding was mentioned in the guideline. Other new developments include the possible establishment of enduring power of attorney for health care decision and enhancement of careful hand feeding amongst advanced dementia patients in RCHEs.

  17. An Exploratory Study of Spirituality in HIV Infected Adolescents and their Families: FAmily CEntered Advance Care Planning and Medication Adherence

    PubMed Central

    Lyon, Maureen E.; Garvie, Patricia A.; Kao, Ellin; Briggs, Linda; He, Jianping; Malow, Robert; D’Angelo, Lawrence J.; McCarter, Robert

    2010-01-01

    Purpose To explore the impact of spirituality and religious beliefs on FAmily CEntered (FACE) Advance Care Planning and medication adherence in HIV+ adolescents and their surrogate decision-makers. Methods A sample of HIV+ adolescents (n=40) and their surrogates, age 21 or older, (n=40) was randomized to an active Healthy Living Control group or the FACE Advance Care Planning intervention, guided by transactional stress and coping theory. Adolescents’ spirituality was assessed at baseline and 3 months post-intervention, using the FACIT-SP-4-EX, as was the belief that HIV is a punishment from God. Results Control adolescents increased faith and meaning/purpose more so than FACE adolescents (p=0.02). At baseline more behaviorally (16%) vs. perinatally (8%) infected adolescents believed HIV was a punishment from God, but not at 3-months post-intervention. Adolescents endorsing HIV was a punishment scored lower on spirituality (p=.05) and adherence to HAART (p= .04). Surrogates were more spiritual than adolescents (p=<.0001). Conclusion Providing family support in a friendly, facilitated, environment enhanced adolescents’ spirituality. Facilitated family conversations had an especially positive effect on behaviorally infected adolescents’ medication adherence and spiritual beliefs. PMID:21575826

  18. Engagement in Advance Care Planning and Surrogates' Knowledge of Patients' Treatment Goals.

    PubMed

    Fried, Terri R; Zenoni, Maria; Iannone, Lynne; O'Leary, John; Fenton, Brenda T

    2017-08-01

    A key objective of advance care planning (ACP) is improving surrogates' knowledge of patients' treatment goals. Little is known about whether ACP outside of a trial accomplishes this. The objective was to examine patient and surrogate reports of ACP engagement and associations with surrogate knowledge of goals. Cohort study SETTING: Primary care in a Veterans Affairs Medical Center. 350 community-dwelling veterans age ≥55 years and the individual they would choose to make medical decisions on their behalf, interviewed separately. Treatment goals were assessed by veterans' ratings of 3 health states: severe physical disability, cognitive disability, and pain, as an acceptable or unacceptable result of treatment for severe illness. Surrogates had knowledge if they correctly predicted all 3 responses. Veterans and surrogates were asked about living will and health care proxy completion and communication about life-sustaining treatment and quality versus quantity of life (QOL). Over 40% of dyads agreed that the veteran had not completed a living will or health care proxy and that there was no QOL communication. For each activity, sizeable proportions (18-34%) disagreed about participation. In dyads who agreed QOL communication had occurred, 30% of surrogates had knowledge, compared to 21% in dyads who agreed communication had not occurred and 15% in dyads who disagreed (P = .01). This relationship persisted in multivariable analysis. Agreement about other ACP activities was not associated with knowledge. Disagreement about ACP participation was common. Agreement about communication regarding QOL was modestly associated with surrogate knowledge of treatment goals. Eliciting surrogates' perspectives is critical to ACP. Even dyads who agree about participation may need additional support for successful engagement. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

  19. "Now I Don't Have to Guess": Using Pamphlets to Encourage Residents and Families/Friends to Engage in Advance Care Planning in Long-Term Care.

    PubMed

    Sussman, Tamara; Kaasalainen, Sharon; Bui, Matthew; Akhtar-Danesh, Noori; Mintzberg, Susan; Strachan, Patricia

    2017-01-01

    Objective: This article explores whether access to illness trajectory pamphlets for five conditions with high prevalence in long-term care (LTC) can encourage residents and families/friends to openly engage in advance care planning (ACP) discussions with one another and with health providers. Method: In all, 57 residents and families/friends in LTC completed surveys and 56 participated in seven focus groups that explored whether the pamphlets supported ACP engagement. Results: Survey results suggested that access to pamphlets encouraged residents and families/friends to reflect on future care (48/57, 84%), clarified what questions to ask (40/57, 70%), and increased comfort in talking about end of life (EOL) care (36/57, 63%). Discussions between relatives and friends/families (32/57, 56%) or with health providers (21/57, 37%) were less common. Focus group deliberations illuminated that while reading illness-specific information was validating, a tendency to protect one another from an emotional topic, prevented residents and families/friends from conversing with one another about EOL issues. Discussion: Having access to pamphlets with information about EOL care provides important and welcome opportunities for reflection for both residents in LTC and their families/friends. Moving residents and families/friends from reflecting on issues to discussing them together could require staff support through planned care conferences or staff initiated conversations at the bedside.

  20. Identifying the Factors That Facilitate or Hinder Advance Planning by Persons With Dementia

    PubMed Central

    Hirschman, Karen B.; Kapo, Jennifer M.; Karlawish, Jason H. T.

    2009-01-01

    We performed semistructured interviews with 30 family members of patients with advanced dementia to identify the factors that facilitate or hinder advance planning by persons with dementia. All interviews were analyzed using qualitative data analysis techniques. The majority (77%) of family members reported that their relative had some form of written advance directive, and at least half reported previous discussions about health care preferences (57%), living situation or placement issues (50%), and finances or estate planning (60%) with the patient. Family members reported some themes that prompted planning and others that were barriers to planning. Events that most often triggered planning were medical, living situation, or financial issues associated with a friend or family member of the patient (57%). Barriers to planning included both passive and active avoidance. The most common form of passive avoidance was not realizing the importance of planning until it was too late to have the discussion (63%). The most common form of active avoidance was avoiding the discussion (53%). These data suggest potentially remediable strategies to address barriers to advance planning discussions. PMID:18580595

  1. Barriers to and Facilitators of South Asian Indian-Americans’ Engagement in Advanced Care Planning Behaviors

    PubMed Central

    Radhakrishnan, Kavita; Saxena, Shubhada; Jillapalli, Regina; Jang, Yuri; Kim, Miyong

    2018-01-01

    Purpose To identify barriers to and facilitators of older South Asian Indian-Americans’ (SAIAs’) engagement in behaviors associated with advance care planning (ACP). Methods Using a descriptive qualitative design guided by the transcultural nursing assessment model, data were collected in focus groups of community-dwelling older SAIA participants, SAIA family caregivers, and SAIA physicians. A directed approach using predetermined coding categories derived from the Transcultural Nursing Assessment model and aided by NVivo 10 software (Melbourne, Australia) facilitated the qualitative data analysis. Results Eleven focus groups with 36 older SAIAs (61% female, 83% 70+ years old), 10 SAIA family caregivers, and 4 SAIA physicians indicated prior lack of awareness of ACP, good health status, lack of access to linguistically and health literacy–tailored materials, healthcare provider hesitation to initiate discussions on ACP, trust in healthcare providers’ or oldest sons’ decision making, busy family caregiver work routines, and cultural assumptions about filial piety and after-death rituals as major barriers to engaging in ACP. Introducing ACP using personal anecdotes in a neutral, group-based community setting and incentivizing ACP discussions by including long-term care planning were suggested as facilitators to engage in ACP. Clinical Relevance The study’s findings will guide development of culturally sensitive interventions to raise awareness about ACP among SAIAs and encourage SAIA older adults to engage in ACP. PMID:28388828

  2. Barriers to and Facilitators of South Asian Indian-Americans' Engagement in Advanced Care Planning Behaviors.

    PubMed

    Radhakrishnan, Kavita; Saxena, Shubhada; Jillapalli, Regina; Jang, Yuri; Kim, Miyong

    2017-05-01

    To identify barriers to and facilitators of older South Asian Indian-Americans' (SAIAs') engagement in behaviors associated with advance care planning (ACP). Using a descriptive qualitative design guided by the transcultural nursing assessment model, data were collected in focus groups of community-dwelling older SAIA participants, SAIA family caregivers, and SAIA physicians. A directed approach using predetermined coding categories derived from the Transcultural Nursing Assessment model and aided by NVivo 10 software (Melbourne, Australia) facilitated the qualitative data analysis. Eleven focus groups with 36 older SAIAs (61% female, 83% 70+ years old), 10 SAIA family caregivers, and 4 SAIA physicians indicated prior lack of awareness of ACP, good health status, lack of access to linguistically and health literacy-tailored materials, healthcare provider hesitation to initiate discussions on ACP, trust in healthcare providers' or oldest sons' decision making, busy family caregiver work routines, and cultural assumptions about filial piety and after-death rituals as major barriers to engaging in ACP. Introducing ACP using personal anecdotes in a neutral, group-based community setting and incentivizing ACP discussions by including long-term care planning were suggested as facilitators to engage in ACP. The study's findings will guide development of culturally sensitive interventions to raise awareness about ACP among SAIAs and encourage SAIA older adults to engage in ACP. © 2017 Sigma Theta Tau International.

  3. The Role of the Advanced Practice Nurse in Geriatric Oncology Care.

    PubMed

    Morgan, Brianna; Tarbi, Elise

    2016-02-01

    To describe how the Advanced Practice Nurse (APN) is uniquely suited to meet the needs of older adults throughout the continuum of cancer, to explore the progress that APNs have made in gero-oncology care, and make suggestions for future directions. Google Scholar, PubMed, and CINAHL. Search terms included: "gero-oncology," "geriatric oncology," "Advanced Practice Nurse," "Nurse Practitioner," "older adult," "elderly," and "cancer." Over the last decade, APNs have made advances in caring for older adults with cancer by playing a role in prevention, screening, and diagnosis; through evidence-based gero-oncology care during cancer treatment; and in designing tailored survivorship care models. APNs must combat ageism in treatment choice for older adults, standardize comprehensive geriatric assessments, and focus on providing person-centered care, specifically during care transitions. APNs are well-positioned to help understand the complex relationship between risk factors, geriatric syndromes, and frailty and translate research into practice. Palliative care must expand beyond specialty providers and shift toward APNs with a focus on early advanced care planning. Finally, APNs should continue to establish multidisciplinary survivorship models across care settings, with a focus on primary care. Copyright © 2015 Elsevier Inc. All rights reserved.

  4. Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial.

    PubMed

    Hanson, Laura C; Zimmerman, Sheryl; Song, Mi-Kyung; Lin, Feng-Chang; Rosemond, Cherie; Carey, Timothy S; Mitchell, Susan L

    2017-01-01

    In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired. To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia. A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes. A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning. Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the "best goal to guide care and medical treatment," and clinicians' "top priority for care and medical treatment"), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment. Residents' mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more

  5. Public Opinion Regarding Financial Incentives to Engage in Advance Care Planning and Complete Advance Directives.

    PubMed

    Auriemma, Catherine L; Chen, Lucy; Olorunnisola, Michael; Delman, Aaron; Nguyen, Christina A; Cooney, Elizabeth; Gabler, Nicole B; Halpern, Scott D

    2017-09-01

    The Centers for Medicare & Medicaid Services (CMS) recently instituted physician reimbursements for advance care planning (ACP) discussions with patients. To measure public support for similar programs. Cross-sectional online and in-person surveys. English-speaking adults recruited at public parks in Philadelphia, Pennsylvania, from July to August 2013 and online through survey sampling international Web-based recruitment platform in July 2015. Participants indicated support for 6 programs designed to increase advance directive (AD) completion or ACP discussion using 5-point Likert scales. Participants also indicated how much money (US$0-US$1000) was appropriate to incentivize such behaviors, compared to smoking cessation or colonoscopy screening. We recruited 883 participants: 503 online and 380 in-person. The status quo of no systematic approach to motivate AD completion was supported by 67.0% of participants (63.9%-70.1%). The most popular programs were paying patients to complete ADs (58.0%; 54.5%-61.2%) and requiring patients to complete ADs or declination forms for health insurance (54.1%; 50.8%-57.4%). Participants more commonly supported paying patients to complete ADs than paying physicians whose patients complete ADs (22.6%; 19.8%-25.4%) or paying physicians who document ACP discussions (19.1%; 16.5%-21.7%; both P < .001). Participants supported smaller payments for AD completion and ACP than for obtaining screening colonoscopies or stopping smoking. Americans view payments for AD completion or ACP more skeptically than for other health behaviors and prefer that such payments go to patients rather than physicians. The current CMS policy of reimbursing physicians for ACP conversations with patients was the least preferred of the programs evaluated.

  6. Beyond consumer-driven health care: purchasers' expectations of all plans.

    PubMed

    Lee, Peter V; Hoo, Emma

    2006-01-01

    Skyrocketing health care costs and quality deficits can only be addressed through a broad approach of quality-based benefit design. Consumer-directed health plans that are built around better consumer information tools and support hold the promise of consumer engagement, but purchasers expect these features in all types of health plans. Regardless of plan type, simply shifting costs to consumers is a threat to access and adherence to evidence-based medicine. Comparative and interactive consumer information tools, coupled with provider performance transparency and payment reform, are needed to advance accountability and support consumers in getting the right care at the right time.

  7. Increasing advance personal planning: the need for action at the community level.

    PubMed

    Waller, Amy; Sanson-Fisher, Rob; Ries, Nola; Bryant, Jamie

    2018-05-09

    Advance personal planning is the process by which people consider, document and communicate their preferences for personal, financial and health matters in case they lose the ability to make decisions or express their wishes in the future. Advance personal planning is most often undertaken by individuals who are seriously ill, often in the context of a medical crisis and/or at the time of admission to hospital. However, the clinical utility and legal validity of the planning process may be compromised in these circumstances. Patients may lack sufficient capacity to meaningfully engage in advance personal planning; there may be insufficient time to adequately reflect on and discuss wishes with key others; and there may also be limited opportunity for inter-professional input and collaboration in the process. Here, we propose an agenda for research to advance the science of advance personal planning by promoting a 'whole community' approach. Adoption of advance personal planning at a community level may be achieved using a variety of strategies including public media campaigns, intervening with professionals across a range of health care and legal settings, and mobilising support from influential groups and local government. One potentially promising method for encouraging earlier adoption of advance personal planning among a broader population involves a community action approach, whereby multiple evidence-based strategies are integrated across multiple access points. Community action involves calling on community members, professionals, community and/or government organisations to work collaboratively to design and systematically implement intervention strategies with the aim of bringing about desired behaviour change. An example of a community action trial to improving uptake and quality of advance personal planning is described. While promising, there is a need for rigorous evidence to demonstrate whether a community action approach is effective in

  8. Advanced access: reducing waiting and delays in primary care.

    PubMed

    Murray, Mark; Berwick, Donald M

    2003-02-26

    Delay of care is a persistent and undesirable feature of current health care systems. Although delay seems to be inevitable and linked to resource limitations, it often is neither. Rather, it is usually the result of unplanned, irrational scheduling and resource allocation. Application of queuing theory and principles of industrial engineering, adapted appropriately to clinical settings, can reduce delay substantially, even in small practices, without requiring additional resources. One model, sometimes referred to as advanced access, has increasingly been shown to reduce waiting times in primary care. The core principle of advanced access is that patients calling to schedule a physician visit are offered an appointment the same day. Advanced access is not sustainable if patient demand for appointments is permanently greater than physician capacity to offer appointments. Six elements of advanced access are important in its application balancing supply and demand, reducing backlog, reducing the variety of appointment types, developing contingency plans for unusual circumstances, working to adjust demand profiles, and increasing the availability of bottleneck resources. Although these principles are powerful, they are counter to deeply held beliefs and established practices in health care organizations. Adopting these principles requires strong leadership investment and support.

  9. “Now I Don’t Have to Guess”: Using Pamphlets to Encourage Residents and Families/Friends to Engage in Advance Care Planning in Long-Term Care

    PubMed Central

    Sussman, Tamara; Kaasalainen, Sharon; Bui, Matthew; Akhtar-Danesh, Noori; Mintzberg, Susan; Strachan, Patricia

    2017-01-01

    Objective: This article explores whether access to illness trajectory pamphlets for five conditions with high prevalence in long-term care (LTC) can encourage residents and families/friends to openly engage in advance care planning (ACP) discussions with one another and with health providers. Method: In all, 57 residents and families/friends in LTC completed surveys and 56 participated in seven focus groups that explored whether the pamphlets supported ACP engagement. Results: Survey results suggested that access to pamphlets encouraged residents and families/friends to reflect on future care (48/57, 84%), clarified what questions to ask (40/57, 70%), and increased comfort in talking about end of life (EOL) care (36/57, 63%). Discussions between relatives and friends/families (32/57, 56%) or with health providers (21/57, 37%) were less common. Focus group deliberations illuminated that while reading illness-specific information was validating, a tendency to protect one another from an emotional topic, prevented residents and families/friends from conversing with one another about EOL issues. Discussion: Having access to pamphlets with information about EOL care provides important and welcome opportunities for reflection for both residents in LTC and their families/friends. Moving residents and families/friends from reflecting on issues to discussing them together could require staff support through planned care conferences or staff initiated conversations at the bedside. PMID:29308424

  10. Developing nursing care plans.

    PubMed

    Ballantyne, Helen

    2016-02-24

    This article aims to enhance nurses' understanding of nursing care plans, reflecting on the past, present and future use of care planning. This involves consideration of the central theories of nursing and discussion of nursing models and the nursing process. An explanation is provided of how theories of nursing may be applied to care planning, in combination with clinical assessment tools, to ensure that care plans are context specific and patient centred.

  11. SPIRIT advance care planning intervention in early stage dementias: An NIH stage I behavioral intervention development trial.

    PubMed

    Song, Mi-Kyung; Ward, Sandra E; Hepburn, Kenneth; Paul, Sudeshna; Shah, Raj C; Morhardt, Darby J

    2018-06-02

    People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote). Then in a 3-group RCT with 120 patient-surrogate dyads, we will evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT remote, and preliminary efficacy of SPIRIT compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. This Stage I research of SPIRIT will generate valuable insights regarding how to improve ACP for people with mild dementia who will progress to an advanced stage of the disease in the foreseeable future. ClinicalTrials.gov NCT03311711, Registered 10/12/2017. Copyright © 2018. Published by Elsevier Inc.

  12. Interdisciplinary Care Planning and the Written Care Plan in Nursing Homes: A Critical Review

    ERIC Educational Resources Information Center

    Dellefield, Mary Ellen

    2006-01-01

    Purpose: This article is a critical review of the history, research evidence, and state-of-the-art technology in interdisciplinary care planning and the written plan of care in American nursing homes. Design and Methods: We reviewed educational and empirical literature. Results: Interdisciplinary care planning and the written care plan are…

  13. Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial

    PubMed Central

    Clayton, Josephine; Butow, Phyllis N; Silvester, William; Detering, Karen; Hall, Jane; Kiely, Belinda E; Cebon, Jonathon; Clarke, Stephen; Bell, Melanie L; Stockler, Martin; Beale, Phillip; Tattersall, Martin H N

    2016-01-01

    Introduction There is limited evidence documenting the effectiveness of Advance Care Planning (ACP) in cancer care. The present randomised trial is designed to evaluate whether the administration of formal ACP improves compliance with patients' end-of-life (EOL) wishes and patient and family satisfaction with care. Methods and analysis A randomised control trial in eight oncology centres across New South Wales and Victoria, Australia, is designed to assess the efficacy of a formal ACP intervention for patients with cancer. Patients with incurable cancer and an expected survival of 3–12 months, plus a nominated family member or friend will be randomised to receive either standard care or standard care plus a formal ACP intervention. The project sample size is 210 patient–family/friend dyads. The primary outcome measure is family/friend-reported: (1) discussion with the patient about their EOL wishes and (2) perception that the patient's EOL wishes were met. Secondary outcome measures include: documentation of and compliance with patient preferences for medical intervention at the EOL; the family/friend's perception of the quality of the patient's EOL care; the impact of death on surviving family; patient–family and patient–healthcare provider communication about EOL care; patient and family/friend satisfaction with care; quality of life of patient and family/friend subsequent to trial entry, the patient's strength of preferences for quality of life and length of life; the costs of care subsequent to trial entry and place of death. Ethics and dissemination Ethical approval was received from the Sydney Local Health District (RPA Zone) Human Research Ethical Committee, Australia (Protocol number X13-0064). Study results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. Trial registration number Pre-results; ACTRN12613001288718. PMID:27909034

  14. Palliative care for people with advanced liver disease: A feasibility trial of a supportive care liver nurse specialist.

    PubMed

    Kimbell, Barbara; Murray, Scott A; Byrne, Heidi; Baird, Andrea; Hayes, Peter C; MacGilchrist, Alastair; Finucane, Anne; Brookes Young, Patricia; O'Carroll, Ronan E; Weir, Christopher J; Kendall, Marilyn; Boyd, Kirsty

    2018-05-01

    Liver disease is an increasing cause of death worldwide but palliative care is largely absent for these patients. We conducted a feasibility trial of a complex intervention delivered by a supportive care liver nurse specialist to improve care coordination, anticipatory care planning and quality of life for people with advanced liver disease and their carers. Patients received a 6-month intervention (alongside usual care) from a specially trained liver nurse specialist. The nurse supported patients/carers to live as well as possible with the condition and acted as a resource to facilitate care by community professionals. A mixed-method evaluation was conducted. Case note analysis and questionnaires examined resource use, care planning processes and quality-of-life outcomes over time. Interviews with patients, carers and professionals explored acceptability, effectiveness, feasibility and the intervention. Patients with advanced liver disease who had an unplanned hospital admission with decompensated cirrhosis were recruited from an inpatient liver unit. The intervention was delivered to patients once they had returned home. We recruited 47 patients, 27 family carers and 13 case-linked professionals. The intervention was acceptable to all participants. They welcomed access to additional expert advice, support and continuity of care. The intervention greatly increased the number of electronic summary care plans shared by primary care and hospitals. The Palliative care Outcome Scale and EuroQol-5D-5L questionnaire were suitable outcome measurement tools. This nurse-led intervention proved acceptable and feasible. We have refined the recruitment processes and outcome measures for a future randomised controlled trial.

  15. Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies

    PubMed Central

    Lund, Susi; Richardson, Alison; May, Carl

    2015-01-01

    Context Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges. Objective To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice. Design An explanatory systematic review of qualitative implementation studies. Data sources Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched. Methods Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes. Results 13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations. Conclusions This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows. PMID:25679395

  16. Moving survivorship care plans forward: focus on care coordination.

    PubMed

    Salz, Talya; Baxi, Shrujal

    2016-07-01

    After completing treatment for cancer, the coordination of oncology and primary care presents a challenge for cancer survivors. Many survivors need continued oncology follow-up, and all survivors require primary care. Coordinating the shared care of a cancer survivor, or facilitating an informed handoff from oncology to primary care, is essential for cancer survivors. Survivorship care plans are personalized documents that summarize cancer treatment and outline a plan of recommended ongoing care, with the goal of facilitating the coordination of post-treatment care. Despite their face validity, five trials have failed to demonstrate the effectiveness of survivorship care plans. We posit that these existing trials have critical shortcomings and do not adequately address whether survivorship care plans improve care coordination. Moving forward, we propose four criteria for future trials of survivorship care plans: focusing on high-needs survivor populations, tailoring the survivorship care plan to the care setting, facilitating implementation of the survivorship care plan in clinical practice, and selecting appropriate trial outcomes to assess care coordination. When trials meet these criteria, we can finally assess whether survivorship care plans help cancer survivors receive optimal oncology and primary care. © 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

  17. Motivational aftercare planning to better care: Applying the principles of advanced directives and motivational interviewing to discharge planning for people with mental illness.

    PubMed

    Kisely, Steve; Wyder, Marianne; Dietrich, Josie; Robinson, Gail; Siskind, Dan; Crompton, David

    2017-02-01

    Improving the input of people with mental illness into their recovery plans can potentially lead to better outcomes. In the present study, we evaluated the introduction of motivational aftercare planning (MAP) into the discharge planning of psychiatric inpatients. MAP is a manualized intervention combining motivational interviewing with advance directives. We measured changes in the level of patient input into discharge planning following training staff in the use of MAP. This included the following: (i) documentation of early relapse signs along with successful past responses; (ii) evidence of aftercare planning; and (iii) the use of the patients' own words in the plan. We used a ward-level controlled before-and-after design comparing one intervention ward with two control wards. We used anonymized recovery plans, with a goal of 50 plans per ward before and after the intervention, to look for evidence of patient input into care planning with a standardized checklist. There were also qualitative interviews with individuals discharged from the unit. We reviewed 100 intervention ward plans and 197 control ones (total n = 297). There were no significant differences in recovery plans from intervention and control wards at baseline. Following MAP training, the intervention ward improved significantly (e.g. identification of triggers increased from 52 to 94%, χ 2  = 23.3, d.f. =1, P < 0.001). This did not occur in the control wards. The qualitative data (n = 20 interviews) showed improvements in participants' experiences of discharge planning. MAP increased inpatient input into discharge planning and was valued by participants. The effect on subsequent health service use needs evaluation. © 2016 Australian College of Mental Health Nurses Inc.

  18. A Dyadic Perspective on Engagement in Advance Care Planning.

    PubMed

    Fried, Terri; Zenoni, Maria; Iannone, Lynne

    2017-01-01

    To understand the perspectives of both patients and the person who would make medical decisions for them if they were unable (surrogates) on their participation in advance care planning (ACP). Qualitative cross-sectional study. Community. Thirty-one veterans age 55 years and older and their surrogates. In interviews conducted with both the veteran and surrogate, they were asked to discuss their participation in four ACP activities: communication about life-sustaining treatment, communication about views on quality of life, completion of a living will, and appointment of a healthcare proxy. They were asked about barriers to and facilitators of ACP engagement. When they did not agree about engagement, they each provided their perspective on what they believed had or had not occurred. Many of the same barriers to and facilitators of engagement were discussed by both patients and surrogates. These included difficulty thinking about dying, differences in values, and experiences with others that demonstrated the ability of ACP to decrease burden or avoid conflict. Reasons for disagreements in perceptions about whether communication had occurred included surrogates' need for more detailed information, surrogates' lack of readiness to hear what the patient was saying, and surrogates' reliance on what they know about the patient. For some dyads, participation in the study prompted additional communication, resulting in a better shared understanding of ACP engagement. Surrogates can both impede and facilitate engagement in ACP, and they can hold different perceptions from patients regarding this engagement. Efforts to promote ACP may be most successful if they assess and address both patients' and surrogates' attitudes and help to facilitate clear communication between them. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  19. InformedTogether: Usability Evaluation of a Web-Based Decision Aid to Facilitate Shared Advance Care Planning for Severe Chronic Obstructive Pulmonary Disease

    PubMed Central

    Uhler, Lauren M; Pérez Figueroa, Rafael E; Dickson, Mark; McCullagh, Lauren; Kushniruk, Andre; Monkman, Helen; Witteman, Holly O

    2015-01-01

    Background Advance care planning may help patients receive treatments that better align with their goals for care. We developed a Web-based decision aid called InformedTogether to facilitate shared advance care planning between chronic obstructive pulmonary disease (COPD) patients and their doctors. Objective Our objective was to assess the usability of the InformedTogether decision aid, including whether users could interact with the decision aid to engage in tasks required for shared decision making, whether users found the decision aid acceptable, and implications for redesign. Methods We conducted an observational study with 15 patients and 8 doctors at two ethnically and socioeconomically diverse outpatient clinics. Data included quantitative and qualitative observations of patients and doctors using the decision aid on tablet or laptop computers and data from semistructured interviews. Patients were shown the decision aid by a researcher acting as the doctor. Pulmonary doctors were observed using the decision aid independently and asked to think aloud (ie, verbalize their thoughts). A thematic analysis was implemented to explore key issues related to decision aid usability. Results Although patients and doctors found InformedTogether acceptable and would recommend that doctors use the decision aid with COPD patients, many patients had difficulty understanding the icon arrays that were used to communicate estimated prognoses and could not articulate the definitions of the two treatment choices—Full Code and Do Not Resuscitate (DNR). Minor usability problems regarding content, links, layout, and consistency were also identified and corresponding recommendations were outlined. In particular, participants suggested including more information about potential changes in quality of life resulting from the alternative advance directives. Some doctor participants thought the decision aid was too long and some thought it may cause nervousness among patients due to

  20. [The palliative treatment plan as basis for informed decisions in palliative or emergency care].

    PubMed

    Lederer, Wolfgang; Feichtner, Angelika; Medicus, Elisabeth

    2011-11-01

    Acute vital crisis in end-of-life situations may result in a person being hospitalized and thus, expelled from his intimate environment, which aggravates the continuity of care. This entails a heavy burden for patients and necessitates an emergency medical services (EMS) call without recognizable benefit in many cases. Crisis episodes frequently mark the beginning of the dying process. Advance care planning or end-of-life care in elderly patients can help prevent such situations and ensure high contentment of patients, families and caregivers. Frequently, the question arises whether the burden arising from further hospitalization or from certain medical treatment options is reasonably balanced by the potential benefits of the steps taken. In such comprehensive care settings a custom-tailored palliative treatment plan may serve as an instrument for advance care planning. A palliative treatment plan set up by a physician together with a caregiver helps ensure that acute problems can be solved quickly and satisfactorily in the patient's customary surroundings. If EMS assistance is still needed, the emergency physician has written information on the patient's situation and can act quickly to meet the patient's immediate needs. This also means that EMS personnel must be properly trained in providing palliative care. In this way the palliative treatment plan can help caregivers continue to care for patients in their intimate surroundings.

  1. LVAD patients' and surrogates' perspectives on SPIRIT-HF: An advance care planning discussion.

    PubMed

    Metzger, Maureen; Song, Mi-Kyung; Devane-Johnson, Stephanie

    2016-01-01

    To describe LVAD patients' and surrogates' experiences with, and perspectives on SPIRIT-HF, an advance care planning (ACP) intervention. ACP is important for patients with LVAD, yet little is known about their experiences or those of their surrogates who have participated in ACP discussions. We used qualitative content analysis techniques to conduct a secondary analysis of 28 interviews with patients with LVAD (n = 14) and their surrogates (n = 14) who had participated in an RCT pilot study of SPIRIT-HF. Main themes from the data include: 1) sharing their HF stories was very beneficial; 2) participating in SPIRIT-HF led to greater peace of mind for patients and surrogates; 3) "one size does not fit all" when it comes to timing of ACP discussions. An understanding patient and surrogate perspectives may inform clinicians' approach to ACP discussions. Copyright © 2016 Elsevier Inc. All rights reserved.

  2. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy.

    PubMed

    Fins, Joseph J; Maltby, Barbara S; Friedmann, Erika; Greene, Michele G; Norris, Kaye; Adelman, Ronald; Byock, Ira

    2005-01-01

    Previously we had speculated that the patient-proxy relationship existed on a contractual to covenantal continuum. In order to assess this hypothesis, and to better understand the moral obligations of the patient-proxy relationship, we surveyed 50 patient-proxy pairs as well as 52 individuals who had acted as proxies for someone who had died. Using structured vignettes representative of three distinct disease trajectories (cancer, acute stroke, and congestive heart failure), we assessed whether respondents believed that proxies should follow explicit instructions regarding life-sustaining therapy and act contractually or whether more discretionary or covenantal judgments were ethically permissible. Additional variables included the valence of initial patient instructions--for example, "to do nothing" or "to do everything"--as well as the quality of information available to the proxy. Responses were graded on a contractual to covenantal continuum using a modified Likert scale employing a prospectively scored survey instrument. Our data indicate that the patient-proxy relationship exists on a contractual to covenantal continuum and that variables such as disease trajectory, the clarity of prognosis, instructional valence, and the quality of patient instructions result in statistically significant differences in response. The use of interpretative or covenantal judgment was desired by patients and proxies when the prognosis was grim, even if initial instructions were to pursue more aggressive care. Nonetheless, there was a valence effect: patients and proxies intended that negative instructions to be left alone be heeded. These data suggest that the delegation of patient self-determination is morally complex. Advance care planning should take into account both the exercise of autonomy and the interpretative burdens assumed by the proxy. Patients and proxies think inductively and contextually. Neither group viewed deviation from patient instructions as a violation of

  3. A Randomized Trial of Acceptability and Effects of Values-Based Advance Care Planning in Outpatient Oncology: Person-Centered Oncologic Care and Choices (P-COCC).

    PubMed

    Epstein, Andrew S; O'Reilly, Eileen M; Shuk, Elyse; Romano, Danielle; Li, Yuelin; Breitbart, William; Volandes, Angelo E

    2018-05-02

    No standard advance care planning (ACP) process exists in oncology. We previously developed and validated the values questions for Person-Centered Oncologic Care and Choices (P-COCC), a novel ACP intervention combining a patient values interview with an informational care goals video. To pilot study acceptability, and, using randomization, explore potential utility of P-COCC. Eligibility included patients with advanced gastrointestinal cancer cared for at a comprehensive cancer center. Participants were randomized 2:2:1 to P-COCC vs. video alone vs. usual care. Validated assessments of wellbeing and decisional conflict were completed. Participants in the P-COCC arm also completed 3 Likert scales (was the intervention helpful, comfortable, and recommended to others); a positive score on at least 1 of 3 indicated acceptability. Patients were screened from 9/2014-11/2016; 151 were consented and randomized, 99 whom completed study measures (most common attrition reason: disease progression or death). The primary aim was met: Among 33 participants, P-COCC was acceptable to 32 (97%, 95%CI: 0.84-0.99, p<0.001). Mean distress scores (0-10) increased (0.43) in the P-COCC arm but decreased in the video alone (-0.04) and usual care (-0.21) arms (p=0.03 and 0.04, P-COCC versus video alone and usual care arms, respectively). There were no significant pre-post change scores on other measures of wellbeing (e.g., anxiety, depression, stress), or intergroup differences in decisional conflict. Our values-based ACP paradigm is acceptable but may increase distress in cancer outpatients. Further studies are investigating the underpinnings of these effects and ways to best support cancer patients in ACP. Copyright © 2018. Published by Elsevier Inc.

  4. Advance care planning and physician orders in nursing home residents with dementia: a nationwide retrospective study among professional caregivers and relatives.

    PubMed

    Vandervoort, An; Houttekier, Dirk; Van den Block, Lieve; van der Steen, Jenny T; Vander Stichele, Robert; Deliens, Luc

    2014-02-01

    Advance care planning (ACP) is key to good palliative care for nursing home (NH) residents with dementia. We examined the extent to which the family physicians (FPs), nurses, and the relative most involved in the resident's care are informed about ACP, written advance directives, and FP treatment orders (FP-orders) for NH residents dying with dementia. We also examined the congruence among FP, nurse, and relative regarding the content of ACP. This was a representative nationwide post-mortem study (2010) in Flanders, Belgium, using random cluster sampling. In selected NHs, all deaths of residents with dementia in a three month period were reported. A structured questionnaire was completed by the FP, the nurse, and the patient's relative. We identified 205 deceased residents with dementia in 69 NHs. Residents expressed their wishes regarding end-of-life care in 11.8% of cases according to the FP. The FP and nurse spoke with the resident in 22.0% and 9.7% of cases, respectively, and with the relative in 70.6% and 59.5%, respectively. An advance directive was present in 9.0%, 13.6%, and 18.4% of the cases according to the FP, nurse, and the relative, respectively. The FP-orders were present in 77.3% according to the FP, and discussed with the resident in 13.0% and with the relative in 79.3%. Congruence was fair (FP-nurse) on the documentation of FP-orders (k=0.26), and poor to slight on the presence of an advance directive (FP-relative, k=0.03; nurse-relative, k=-0.05; FP-nurse k=0.12). Communication regarding care is rarely patient driven and more often professional caregiver or family driven. The level of congruence between professional caregivers and relatives is low. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

  5. Advance care planning: a qualitative study of dialysis patients and families.

    PubMed

    Goff, Sarah L; Eneanya, Nwamaka D; Feinberg, Rebecca; Germain, Michael J; Marr, Lisa; Berzoff, Joan; Cohen, Lewis M; Unruh, Mark

    2015-03-06

    More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP. In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes. Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how. Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful

  6. Improving advance care planning for English-speaking and Spanish-speaking older adults: study protocol for the PREPARE randomised controlled trial

    PubMed Central

    Sudore, Rebecca L; Barnes, Deborah E; Le, Gem M; Ramos, Roberto; Osua, Stacy J; Richardson, Sarah A; Boscardin, John; Schillinger, Dean

    2016-01-01

    Introduction Advance care planning (ACP) is a process that allows patients to identify their goals for medical care. Traditionally, ACP has focused on completing advance directives; however, we have expanded the ACP paradigm to also prepare patients to communicate their wishes and make informed decisions. To this end, we created an ACP website called PREPARE (http://www.prepareforyourcare.org) to prepare diverse English-speaking and Spanish-speaking older adults for medical decision-making. Here, we describe the study protocol for a randomised controlled efficacy trial of PREPARE in a safety-net setting. The goal is to determine the efficacy of PREPARE to engage diverse English-speaking and Spanish-speaking older adults in a full spectrum of ACP behaviours. Methods and analysis We include English-speaking and Spanish-speaking adults from an urban public hospital who are ≥55 years old, have ≥2 chronic medical conditions and have seen a primary care physician ≥2 times in the last year. Participants are randomised to the PREPARE intervention (review PREPARE and an easy-to-read advance directive) or the control arm (only the easy-to-read advance directive). The primary outcome is documentation of an advance directive and/or ACP discussion. Secondary outcomes include ACP behaviour change processes measured with validated surveys (eg, self-efficacy, readiness) and a broad range of ACP actions (eg, choosing a surrogate, identifying goals for care, discussing ACP with clinicians and/or surrogates). Using blinded outcome ascertainment, outcomes will be measured at 1 week and at 3, 6 and 12 months, and compared between study arms using mixed-effects logistic regression and mixed-effects linear, Poisson or negative binomial regression. Ethics and dissemination This study has been approved by the appropriate Institutional Review Boards and is guided by input from patient and clinical advisory boards and a data safety monitoring board. The results of this study will

  7. Your cancer survivorship care plan

    MedlinePlus

    ... ency/patientinstructions/000822.htm Your cancer survivorship care plan To use the sharing features on this page, ... get one. What Is a Cancer Survivorship Care Plan? A cancer survivorship care plan is a document ...

  8. Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial.

    PubMed

    Johnson, Stephanie; Clayton, Josephine; Butow, Phyllis N; Silvester, William; Detering, Karen; Hall, Jane; Kiely, Belinda E; Cebon, Jonathon; Clarke, Stephen; Bell, Melanie L; Stockler, Martin; Beale, Phillip; Tattersall, Martin H N

    2016-12-01

    There is limited evidence documenting the effectiveness of Advance Care Planning (ACP) in cancer care. The present randomised trial is designed to evaluate whether the administration of formal ACP improves compliance with patients' end-of-life (EOL) wishes and patient and family satisfaction with care. A randomised control trial in eight oncology centres across New South Wales and Victoria, Australia, is designed to assess the efficacy of a formal ACP intervention for patients with cancer. Patients with incurable cancer and an expected survival of 3-12 months, plus a nominated family member or friend will be randomised to receive either standard care or standard care plus a formal ACP intervention. The project sample size is 210 patient-family/friend dyads. The primary outcome measure is family/friend-reported: (1) discussion with the patient about their EOL wishes and (2) perception that the patient's EOL wishes were met. Secondary outcome measures include: documentation of and compliance with patient preferences for medical intervention at the EOL; the family/friend's perception of the quality of the patient's EOL care; the impact of death on surviving family; patient-family and patient-healthcare provider communication about EOL care; patient and family/friend satisfaction with care; quality of life of patient and family/friend subsequent to trial entry, the patient's strength of preferences for quality of life and length of life; the costs of care subsequent to trial entry and place of death. Ethical approval was received from the Sydney Local Health District (RPA Zone) Human Research Ethical Committee, Australia (Protocol number X13-0064). Study results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. Pre-results; ACTRN12613001288718. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  9. The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature.

    PubMed

    Ryan, Tony; Amen, Karwan M; McKeown, Jane

    2017-10-01

    There exists compelling evidence that advance care planning (ACP) remains a key factor in the delivery of appropriate end of life care and facilitates the timely transition to palliative care for people with dementia. Take up of ACP within the dementia population is low, especially when compared with other conditions. Quantitative research has helped in identifying some of the key factors in enabling or inhibiting the use of ACP within the dementia population. Qualitative research can, however, shed further light upon the experiences of all. We carried out a search of the qualitative literature addressing the ACP experiences of people with dementia, family caregivers and professionals. An approach to qualitative synthesis involving coding of original text, developing descriptive themes and generating analytical themes was utilized. We identified five papers and subsequently five analytical themes: breadth and scope of future planning; challenges to ACP; postponing ACP; confidence in systems and making ACP happen for people with dementia. The synthesized findings shed light on the ongoing challenges of the use and further development of ACP in the population of people with dementia. In particular attention is drawn to the difficulties in the timing of ACP and the preference for informal approaches to planning within the families of people affected by dementia. The ACP capacity of the workforce is also addressed. The paper reveals considerable complexity in undertaking ACP in a context of dementia. It is suggested that the preference for informal approaches and the timing of initial conversations be considered and that the skills of those involved in initiating discussions should be given primacy.

  10. How health plans promote health IT to improve behavioral health care.

    PubMed

    Quinn, Amity E; Reif, Sharon; Evans, Brooke; Creedon, Timothy B; Stewart, Maureen T; Garnick, Deborah W; Horgan, Constance M

    2016-12-01

    Given the large numbers of providers and enrollees with which they interact, health plans can encourage the use of health information technology (IT) to advance behavioral health care. The manner and extent to which commercial health plans promote health IT to improve behavioral health care is unknown. This study aims to address that gap. Cross-sectional study. Data are from a nationally representative survey of commercial health plans regarding administrative and clinical dimensions of behavioral health services in 2010. Data are weighted to be representative of commercial managed care products in the United States (n = 8427; 88% response rate). Approaches within the domains of provider support, access to care, and assessment and treatment were investigated as examples of how health plans can promote health IT to improve behavioral health care delivery. Health plans were using health IT approaches in each domain. About a quarter of products offered financial support for electronic health records, but technical assistance was rare. Primary care providers could bill for e-mail contact with patients for behavioral health in about a quarter of products. Few products offered member-provider e-mail, and none offered online appointment scheduling. However, online referral systems and online provider directories were common, and nearly all offered an online self-assessment tool; most offered online counseling and online personalized responses to questions or problems. In 2010, commercial health plans encouraged the use of health IT strategies for behavioral health care. Health plans have an important role to play for increasing health IT as a tool for behavioral health care.

  11. The Intention to Discuss Advance Care Planning in the Context of Alzheimer's Disease Among Korean Americans.

    PubMed

    Hong, Michin; Casado, Banghwa L; Lee, Sang E

    2018-01-29

    Advance care planning (ACP) is crucial for quality end-of-life care for patients with Alzheimer's disease. However, limited evidence is available about ACP among ethnic minorities, particularly in the context of Alzheimer's disease. The purpose of this study was to examine intention to discuss ACP for a family member with Alzheimer's disease among Korean Americans. Guided by the theory of planned behavior and prior research, we examined the relationships between acculturation, attitudes, subjective norms, perceived control, and intention to discuss ACP for a family member with Alzheimer's disease. Path analyses were conducted on a cross-sectional convenience sample of 261 Korean Americans. Age, gender, education, and knowledge about Alzheimer's disease and ACP were included as covariates. Our descriptive findings showed positive attitudes, strong subjective norms, and a high level of perceived control toward ACP discussion among the participants. The path analyses revealed that attitudes and subjective norms were positively related to intention for ACP discussion. Perceived control was not related to intention for ACP discussion. Among the covariates, greater knowledge about Alzheimer's disease was the only factor shown to be associated with the intention for ACP discussion. To promote ACP among this population, educational interventions designed to address positives attitudes and subjective norms toward ACP are suggested. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  12. Trends in advance care planning in cancer patients: Results from a national, longitudinal survey

    PubMed Central

    Narang, Amol K.; Wright, Alexi A.; Nicholas, Lauren H.

    2015-01-01

    Importance Advance care planning (ACP) may prevent end-of-life (EOL) care that is non-beneficial and discordant with patient wishes. Despite long-standing recognition of the merits of ACP in oncology, it is unclear whether cancer patients’ participation in ACP has increased over time. Objective To characterize trends in durable power of attorney (DPOA) assignment, living will creation, and participation in discussions of EOL care preferences, and to explore associations between ACP subtypes and EOL treatment intensity, as reflected in EOL care decisions and terminal hospitalizations. Design Prospectively collected survey data from the Health and Retirement Study (HRS), including data from in-depth “exit” interviews conducted with next-of-kin surrogates following the death of an HRS participant. Trends in ACP subtypes were tested, and multivariable logistic regression models examined associations between ACP subtypes and measures of treatment intensity. Setting HRS, a nationally representative, biennial, longitudinal panel study of U.S. residents over age 50. Participants 1,985 next-of-kin surrogates of HRS participants with cancer who died between 2000 and 2012. Main Outcome and Measures Trends in the surrogate-reported frequency of DPOA assignment, living will creation, and participation in discussions of EOL care preferences, as well as associations between ACP subtypes and surrogate-reported EOL care decisions/terminal hospitalizations. Results From 2000-2012, there was an increase in DPOA assignment (52% to 74%, p=0.03), without change in use of living wills (49% to 40%, p=0.63) or EOL discussions (68% to 60%, p=0.62). Surrogates increasingly reported that patients received “all care possible” at EOL (7% to 58%, p=0.004), and rates of terminal hospitalizations were unchanged (29% to 27%, p=0.70). Both living wills and EOL discussions were associated with limiting/withholding treatment [living will: adjusted odds ratio (AOR)=2.51, 95% confidence

  13. Changes in advance care planning in nursing homes before and after the patient Self-Determination Act: report of a 10-state survey.

    PubMed

    Teno, J M; Branco, K J; Mor, V; Phillips, C D; Hawes, C; Morris, J; Fries, B E

    1997-08-01

    The Patient Self-Determination Act (PSDA) implemented in 1991 has focused national attention on the right of patients to be involved in decision-making and on the use of written advance directives. We report changes in advance care planning with the PSDA and other historical events in nursing homes in 10 states. Pre- and Post-observational cohort study. Nursing home residents, residing in 270 long-term care facilities in 10 states, stratified to ensure representation of urban and rural facilities in each state. In 1990, 2175 patients were sampled, and 2088 different patients from the same facilities were sampled in 1993. Six-month follow-up was obtained at both time periods. Advance care planning was defined as the documentation in the medical record of a living will, a durable power of attorney, a "Do Not Resuscitate" (DNR) order, a "Do Not Hospitalize" (DNH) order, or an order to forgo artificial nutrition or hospitalization. The rate of chart documentation of living wills increased from 4.2% in 1990 to 13.3% in 1993, and DNR orders increased dramatically from 31.1% to 51.5%. The rates of DNH and orders to forgo artificial hydration and nutrition remained less than 8% in both years. We found striking variations in advance care planing among the 10 states. In 1990, having a DNR order varied from 10.1% to 69.2% across the 10 states. With the exception of Oregon, where 69.2% of patients already had a DNR order, the states saw a 1.5 to 3.1 times increase in the rate of DNR orders in 1993 compared with 1990. With the implementation of the PSDA, there was modest increase in documentation of living wills, but DNH and orders to forgo artificial hydration and nutrition remained the same. There was a substantial increase in DNR orders that began before the PSDA implementation. This increase was associated both with the implementation of the PSDA and the increased debate about the appropriateness of CPR for nursing home residents. This increase varied considerably among

  14. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

    PubMed

    McCallion, Philip; Hogan, Mary; Santos, Flavia H; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P

    2017-11-01

    Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia. © 2017 John Wiley & Sons Ltd.

  15. A Rules-Based Algorithm to Prioritize Poor Prognosis Cancer Patients in Need of Advance Care Planning.

    PubMed

    Bestvina, Christine M; Wroblewski, Kristen E; Daly, Bobby; Beach, Brittany; Chow, Selina; Hantel, Andrew; Malec, Monica; Huber, Michael T; Polite, Blase N

    2018-06-01

    Accurate understanding of the prognosis of an advanced cancer patient can lead to decreased aggressive care at the end of life and earlier hospice enrollment. Our goal was to determine the association between high-risk clinical events identified by a simple, rules-based algorithm and decreased overall survival, to target poor prognosis cancer patients who would urgently benefit from advanced care planning. A retrospective analysis was performed on outpatient oncology patients with an index visit from April 1, 2015, through June 30, 2015. We examined a three-month window for "high-risk events," defined as (1) change in chemotherapy, (2) emergency department (ED) visit, and (3) hospitalization. Patients were followed until January 31, 2017. A total of 219 patients receiving palliative chemotherapy at the University of Chicago Medicine with a prognosis of ≤12 months were included. The main outcome was overall survival, and each "high-risk event" was treated as a time-varying covariate in a Cox proportional hazards regression model to calculate a hazard ratio (HR) of death. A change in chemotherapy regimen, ED visit, hospitalization, and at least one high-risk event occurred in 54% (118/219), 10% (22/219), 26% (57/219), and 67% (146/219) of patients, respectively. The adjusted HR of death for patients with a high-risk event was 1.72 (95% confidence interval [CI] 1.19-2.46, p = 0.003), with hospitalization reaching significance (HR 2.74, 95% CI 1.84-4.09, p < 0.001). The rules-based algorithm identified those with the greatest risk of death among a poor prognosis patient group. Implementation of this algorithm in the electronic health record can identify patients with increased urgency to address goals of care.

  16. Social Work Involvement in Advance Care Planning: Findings from a Large Survey of Social Workers in Hospice and Palliative Care Settings.

    PubMed

    Stein, Gary L; Cagle, John G; Christ, Grace H

    2017-03-01

    Few data are available describing the involvement and activities of social workers in advance care planning (ACP). We sought to provide data about (1) social worker involvement and leadership in ACP conversations with patients and families; and (2) the extent of functions and activities when these discussions occur. We conducted a large web-based survey of social workers employed in hospice, palliative care, and related settings to explore their role, participation, and self-rated competency in facilitating ACP discussions. Respondents were recruited through the Social Work Hospice and Palliative Care Network and the National Hospice and Palliative Care Organization. Descriptive analyses were conducted on the full sample of respondents (N = 641) and a subsample of clinical social workers (N = 456). Responses were analyzed to explore differences in ACP involvement by practice setting. Most clinical social workers (96%) reported that social workers in their department are conducting ACP discussions with patients/families. Majorities also participate in, and lead, ACP discussions (69% and 60%, respectively). Most respondents report that social workers are responsible for educating patients/families about ACP options (80%) and are the team members responsible for documenting ACP (68%). Compared with other settings, oncology and inpatient palliative care social workers were less likely to be responsible for ensuring that patients/families are informed of ACP options and documenting ACP preferences. Social workers are prominently involved in facilitating, leading, and documenting ACP discussions. Policy-makers, administrators, and providers should incorporate the vital contributions of social work professionals in policies and programs supporting ACP.

  17. Trends in Advance Care Planning in Patients With Cancer: Results From a National Longitudinal Survey.

    PubMed

    Narang, Amol K; Wright, Alexi A; Nicholas, Lauren H

    2015-08-01

    Advance care planning (ACP) may prevent end-of-life (EOL) care that is nonbeneficial and discordant with patient wishes. Despite long-standing recognition of the merits of ACP in oncology, it is unclear whether participation in ACP by patients with cancer has increased over time. To characterize trends in durable power of attorney (DPOA) assignment, living will creation, and participation in discussions of EOL care preferences and to explore associations between ACP subtypes and EOL treatment intensity as reflected in EOL care decisions and terminal hospitalizations. We analyzed prospectively collected survey data from 1985 next-of-kin surrogates of Health and Retirement Study (HRS) participants with cancer who died between 2000 and 2012, including data from in-depth "exit" interviews conducted with the surrogates after the participant's death. The HRS is a nationally representative, biennial, longitudinal panel study of US residents older than 50 years. Trends in ACP subtypes were tested, and multivariable logistic regression models examined for associations between ACP subtypes and measures of treatment intensity. Trends in the surrogate-reported frequency of DPOA assignment, living will creation, and participation in discussions of EOL care preferences; associations between ACP subtypes and both surrogate-reported EOL care decisions and terminal hospitalizations. From 2000 to 2012, there was an increase in DPOA assignment (52% to 74%, P = .03), without significant change in use of living wills (49% to 40%, P = .63) or EOL discussions (68% to 60%, P = .62). Surrogate reports that patients received "all care possible" at EOL increased during the period (7% to 58%, P = .004), and rates of terminal hospitalizations were unchanged (29% to 27%, P = .70). Limiting or withholding treatment was associated with living wills (adjusted odds ratio [AOR], 2.51; 95% CI, 1.53-4.11; P < .001) and EOL discussions (AOR, 1.93; 95% CI, 1.53-3.14; P = .002

  18. Spreading improvements for advanced COPD care through a Canadian Collaborative.

    PubMed

    Rocker, Graeme M; Amar, Claudia; Laframboise, Wendy L; Burns, Jane; Verma, Jennifer Y

    2017-01-01

    A year-long pan-Canadian quality improvement collaborative (QIC) led by the Canadian Foundation for Healthcare Improvement (CFHI) supported the spread of the successful Halifax, Nova Scotia-based INSPIRED COPD Outreach Program™ to 19 teams in the 10 Canadian provinces. We describe QIC results, addressing two main questions: 1) Can the results of the Nova Scotia INSPIRED model be replicated elsewhere in Canada? 2) How did the teams implement and evaluate their versions of the INSPIRED program? Collaborative faculty selected measures that were evidence-based, relatively simple to collect, and relevant to local context. Chosen process and outcome measures are related to four quality domains: 1) patient- and family-centeredness, 2) coordination, 3) efficiency, and 4) appropriateness. Evaluation of a complex intervention followed a mixed-methods approach. Most participants were nurse managers and/or COPD educators. Only 8% were physicians. Fifteen teams incorporated all core INSPIRED interventions. All teams carried out evaluation. Thirteen teams actively involved patients and families in customized, direct care planning, eg, asking them to complete evaluative surveys and/or conducting interviews. Patients consistently reported greater self-confidence in symptom management, a return to daily activities, and improvements to quality of life. Twelve teams collected data on care transitions using the validated three-item Care Transitions Measure (CTM-3). Twelve teams used the Lung Information Needs Questionnaire (LINQ). Admissions, emergency room visits, and patient-related costs fell substantially for two teams described in detail (combined enrollment 208 patients). Most teams reported gaining deeper knowledge around complexities of COPD care, optimizing patient care through action plans, self-management support, psychosocial support, advance care planning, and coordinating community partnerships. Quality-of-care gains are achievable in the short term among different

  19. Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

    PubMed

    Weissman, David E; Morrison, R Sean; Meier, Diane E

    2010-02-01

    Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

  20. Use of Video Decision Aids to Promote Advance Care Planning in Hilo, Hawai'i.

    PubMed

    Volandes, Angelo E; Paasche-Orlow, Michael K; Davis, Aretha Delight; Eubanks, Robert; El-Jawahri, Areej; Seitz, Rae

    2016-09-01

    Advance care planning (ACP) seeks to promote care delivery that is concordant with patients' informed wishes. Scalability and cost may be barriers to widespread ACP, and video decision aids may help address such barriers. Our primary hypothesis was that ACP documentation would increase in Hilo after ACP video implementation. Secondary hypotheses included increased use of hospice, fewer deaths in the hospital, and decreased costs in the last month of life. The city of Hilo in Hawai'i (population 43,263), which is served by one 276-bed hospital (Hilo Medical Center), one hospice (the Hospice of Hilo), and 30 primary care physicians. The intervention consisted of a single, 1- to 4-h training and access to a suite of ACP video decision aids. Prior to implementation, the rate of ACP documentation for hospitalized patients with late-stage disease was 3.2 % (11/346). After the intervention, ACP documentation was 39.9 % (1,107/2,773) (P < 0.001). Primary care providers in the intervention had an ACP completion rate for patients over 75 years of 37.0 % (1,437/3,888) compared to control providers, who had an average of 25.6 % (10,760/42,099) (P < 0.001). The rate of discharge from hospital to hospice for patients with late-stage disease was 5.7 % prior to the intervention and 13.8 % after the intervention (P < 0.001). The average total insurance cost for the last month of life among Hilo patients was $3,458 (95 % CI $3,051 to 3,865) lower per patient after the intervention when compared to the control region. Implementing ACP video decision aids was associated with improved ACP documentation, greater use of hospice, and decreased costs. Decision aids that promote ACP offer a scalable and cost-efficient medium to place patients at the center of their care.

  1. Community Game Day: Using an End-of-Life Conversation Game to Encourage Advance Care Planning.

    PubMed

    Van Scoy, Lauren J; Reading, Jean M; Hopkins, Margaret; Smith, Brandi; Dillon, Judy; Green, Michael J; Levi, Benjamin H

    2017-11-01

    Advance care planning (ACP) is an important process that involves discussing and documenting one's values and preferences for medical care, particularly end-of-life treatments. This convergent, mixed-methods study assessed whether an end-of-life conversation card game is an acceptable and effective means for performing ACP for patients with chronic illness and/or their caregivers when deployed in a community setting. Twenty-two games (n = 93 participants) were held in community settings surrounding Hershey, PA in 2016. Participants were recruited using random sampling from patient databases and also convenience sampling (i.e., flyers). Quantitative questionnaires and qualitative focus group interviews were administered to assess the game experience and subsequent performance of ACP behaviors. Both quantitative and qualitative data found that Community Game Day was a well-received, positive experience for participants and 75% of participants performed ACP within three months post-intervention. These findings suggest that using a conversation game during community outreach is a useful approach for engaging patients and caregivers in ACP. The convergence of quantitative and qualitative data strongly supports the continued investigation of the game in randomized controlled trials. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  2. Improving advance care planning for English-speaking and Spanish-speaking older adults: study protocol for the PREPARE randomised controlled trial.

    PubMed

    Sudore, Rebecca L; Barnes, Deborah E; Le, Gem M; Ramos, Roberto; Osua, Stacy J; Richardson, Sarah A; Boscardin, John; Schillinger, Dean

    2016-07-11

    Advance care planning (ACP) is a process that allows patients to identify their goals for medical care. Traditionally, ACP has focused on completing advance directives; however, we have expanded the ACP paradigm to also prepare patients to communicate their wishes and make informed decisions. To this end, we created an ACP website called PREPARE (http://www.prepareforyourcare.org) to prepare diverse English-speaking and Spanish-speaking older adults for medical decision-making. Here, we describe the study protocol for a randomised controlled efficacy trial of PREPARE in a safety-net setting. The goal is to determine the efficacy of PREPARE to engage diverse English-speaking and Spanish-speaking older adults in a full spectrum of ACP behaviours. We include English-speaking and Spanish-speaking adults from an urban public hospital who are ≥55 years old, have ≥2 chronic medical conditions and have seen a primary care physician ≥2 times in the last year. Participants are randomised to the PREPARE intervention (review PREPARE and an easy-to-read advance directive) or the control arm (only the easy-to-read advance directive). The primary outcome is documentation of an advance directive and/or ACP discussion. Secondary outcomes include ACP behaviour change processes measured with validated surveys (eg, self-efficacy, readiness) and a broad range of ACP actions (eg, choosing a surrogate, identifying goals for care, discussing ACP with clinicians and/or surrogates). Using blinded outcome ascertainment, outcomes will be measured at 1 week and at 3, 6 and 12 months, and compared between study arms using mixed-effects logistic regression and mixed-effects linear, Poisson or negative binomial regression. This study has been approved by the appropriate Institutional Review Boards and is guided by input from patient and clinical advisory boards and a data safety monitoring board. The results of this study will be disseminated to academic and community stakeholders

  3. Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis.

    PubMed

    Carrion, Iraida V; Nedjat-Haiem, Frances R; Martinez-Tyson, Dinorah; Castañeda, Heide

    2013-05-01

    Limited knowledge exists pertaining to advance care planning (ACP) among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis living in Central Florida, in the USA. The purpose of the study is to identify factors that facilitated the completion of ACP and decisions making patterns among the three groups of Latinas. The research method used was an exploratory qualitative in-depth open-ended semi-structured interview with a grounded theoretical approach and thematic analysis. The interviews were conducted in Spanish with a purposeful sample of 45 Latinas (15 in each group) diagnosed with cancer. A total of ten women (22 %) in the study documented at least one form of ACP. Thirty-five women identified obstacles to accessing information regarding ACP, relating this to insurance and financial factors. Among the Colombian women, one completed a living will, health care surrogate, and power of attorney (all forms of ACP), and three just a living will. Two Puerto Rican women completed all, two a living will, and one both a living will and an enduring power of attorney. Only one Mexican woman completed a living will. This study identifies a knowledge gap regarding ACP among Latina women with cancer diagnosis living in Central Florida, in the USA. Differences between the three groups exist as a result of migration/immigration history, family support, education, English language proficiency, income, knowledge gaps, and information ascertained by medical and health professionals. These differences contribute to their readiness, receptiveness, and willingness to engage in documenting a living will, a health care surrogate, and an enduring power of attorney for health decisions.

  4. Implementation and Impact of Patient Lay Navigator-Led Advance Care Planning Conversations.

    PubMed

    Rocque, Gabrielle B; Dionne-Odom, J Nicholas; Sylvia Huang, Chao-Hui; Niranjan, Soumya J; Williams, Courtney P; Jackson, Bradford E; Halilova, Karina I; Kenzik, Kelly M; Bevis, Kerri S; Wallace, Audrey S; Lisovicz, Nedra; Taylor, Richard A; Pisu, Maria; Partridge, Edward E; Butler, Thomas W; Briggs, Linda A; Kvale, Elizabeth A

    2017-04-01

    Advance care planning (ACP) improves alignment between patient preferences for life-sustaining treatment and care received at end of life (EOL). To evaluate implementation of lay navigator-led ACP. A convergent, parallel mixed-methods design was used to evaluate implementation of navigator-led ACP across 12 cancer centers. Data collection included 1) electronic navigation records, 2) navigator surveys (n = 45), 3) claims-based patient outcomes (n = 820), and 4) semistructured navigator interviews (n = 26). Outcomes of interest included 1) the number of ACP conversations completed, 2) navigator self-efficacy, 3) patient resource utilization, hospice use, and chemotherapy at EOL, and 4) navigator-perceived barriers and facilitators to ACP. From June 1, 2014 to December 31, 2015, 50 navigators completed Respecting Choices ® First Steps ACP Facilitator training. Navigators approached 18% of patients (1319/8704); 481 completed; 472 in process; 366 declined. Navigators were more likely to approach African American patients than Caucasian patients (20% vs. 14%, P < 0.001). Significant increases in ACP self-efficacy were observed after training. The mean score for feeling prepared to conduct ACP conversations increased from 5.6/10 to 7.5/10 (P < 0.001). In comparison with patients declining ACP participation (n = 171), decedents in their final 30 days of life who engaged in ACP (n = 437) had fewer hospitalizations (46% vs. 56%, P = 0.02). Key facilitators of successful implementation included physician buy-in, patient readiness, and prior ACP experience; barriers included space limitations, identifying the "right" time to start conversations, and personal discomfort discussing EOL. A navigator-led ACP program was feasible and may be associated with lower rates of resource utilization near EOL. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.

  5. An Incentive Pay Plan for Advanced Practice Registered Nurses: Impact On Provider and Organizational Outcomes.

    PubMed

    Rhodes, Catherine A; Bechtle, Mavis; McNett, Molly

    2015-01-01

    Advanced practice registered nurses (APRNs) are integral to the provision of quality, cost-effective health care throughout the continuum of care. To promote job satisfaction and ultimately decrease turnover, an APRN incentive plan based on productivity and quality was formulated. Clinical productivity in the incentive plan was measured by national benchmarks for work relative value units for nonphysician providers. After the first year of implementation, APRNs were paid more for additional productivity and quality and the institution had an increase in patient visits and charges. The incentive plan is a win-win for hospitals that employ APRNs.

  6. The Financial Impact of Advanced Kidney Disease on Canada Pension Plan and Private Disability Insurance Costs.

    PubMed

    Manns, Braden; McKenzie, Susan Q; Au, Flora; Gignac, Pamela M; Geller, Lawrence Ian

    2017-01-01

    Many working-age individuals with advanced chronic kidney disease (CKD) are unable to work, or are only able to work at a reduced capacity and/or with a reduction in time at work, and receive disability payments, either from the Canadian government or from private insurers, but the magnitude of those payments is unknown. The objective of this study was to estimate Canada Pension Plan Disability Benefit and private disability insurance benefits paid to Canadians with advanced kidney failure, and how feasible improvements in prevention, identification, and early treatment of CKD and increased use of kidney transplantation might mitigate those costs. This study used an analytical model combining Canadian data from various sources. This study included all patients with advanced CKD in Canada, including those with estimated glomerular filtration rate (eGFR) <30 mL/min/m 2 and those on dialysis. We combined disability estimates from a provincial kidney care program with the prevalence of advanced CKD and estimated disability payments from the Canada Pension Plan and private insurance plans to estimate overall disability benefit payments for Canadians with advanced CKD. We estimate that Canadians with advanced kidney failure are receiving disability benefit payments of at least Can$217 million annually. These estimates are sensitive to the proportion of individuals with advanced kidney disease who are unable to work, and plausible variation in this estimate could mean patients with advanced kidney disease are receiving up to Can$260 million per year. Feasible strategies to reduce the proportion of individuals with advanced kidney disease, either through prevention, delay or reduction in severity, or increasing the rate of transplantation, could result in reductions in the cost of Canada Pension Plan and private disability insurance payments by Can$13.8 million per year within 5 years. This study does not estimate how CKD prevention or increasing the rate of kidney

  7. Oncology Advanced Practitioners Bring Advanced Community Oncology Care.

    PubMed

    Vogel, Wendy H

    2016-01-01

    Oncology care is becoming increasingly complex. The interprofessional team concept of care is necessary to meet projected oncology professional shortages, as well as to provide superior oncology care. The oncology advanced practitioner (AP) is a licensed health care professional who has completed advanced training in nursing or pharmacy or has completed training as a physician assistant. Oncology APs increase practice productivity and efficiency. Proven to be cost effective, APs may perform varied roles in an oncology practice. Integrating an AP into an oncology practice requires forethought given to the type of collaborative model desired, role expectations, scheduling, training, and mentoring.

  8. Advanced Critical Care Practitioners - Practical experience of implementing the Advanced Critical Care Practitioner Faculty of Intensive Care Medicine Curriculum in a London Critical Care Unit.

    PubMed

    Lee, Geraldine; Gilroy, Jo-Anne; Ritchie, Alistair; Grover, Vimal; Gull, Keetje; Gruber, Pascale

    2018-05-01

    With a chronic shortage of doctors in intensive care, alternative roles are being explored. One of these is the role of the Advanced Critical Care Practitioner. The Advanced Critical Care Practitioner Curriculum was developed by the Faculty of Intensive Care Medicine and is used to provide a structured programme of training. The Advanced Critical Care Practitioner programme consists of an academic and clinical component. This article outlines a practical approach of how the programme was developed and is currently being delivered at a single institution. This new advanced practice role offers opportunities to fill gaps in the medical workforce, improve continuity of patient care, provide mentoring and training for less experienced staff as well as offering a rewarding clinical role.

  9. Cultural influences upon advance care planning in a family-centric society.

    PubMed

    Tay, Keson; Yu Lee, Rachel Jia; Sim, Shin Wei; Menon, Sumytra; Kanesvaran, Ravindran; Radha Krishna, Lalit Kumar

    2017-12-01

    Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met. To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children. Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations. Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on

  10. Racial Differences in Outcomes of an Advance Care Planning Intervention for Dialysis Patients and Their Surrogates.

    PubMed

    Song, Mi-Kyung; Ward, Sandra E; Lin, Feng-Chang; Hamilton, Jill B; Hanson, Laura C; Hladik, Gerald A; Fine, Jason P

    2016-02-01

    African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown. The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis. A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants, 210 patient-surrogate dyads (67.4% African Americans), recruited from 20 dialysis centers in North Carolina. The outcomes of preparation for end-of-life decision making included dyad congruence on goals of care, surrogate decision-making confidence, a composite of the two, and patient decisional conflict assessed at 2, 6, and 12 months post-intervention. Surrogate bereavement outcomes included anxiety, depression, and post-traumatic distress symptoms assessed at 2 weeks, and at 3 and 6 months after the patient's death. SPIRIT was superior to usual care in improving dyad congruence (odds ration [OR] = 2.31, p = 0.018), surrogate decision-making confidence (β = 0.18, p = 0.021), and the composite (OR = 2.19, p = 0.028) 2 months post-intervention, but only for African Americans. SPIRIT reduced patient decisional conflict at 6 months for whites and at 12 months for African Americans. Finally, SPIRIT was superior to usual care in reducing surrogates' bereavement depressive symptoms for African Americans but not for whites (β = -3.49, p = 0.003). SPIRIT was effective in improving preparation for end-of-life decision-making and post-bereavement outcomes in African Americans.

  11. 14 CFR 151.117 - Advance planning proposals: Procedures; application.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... desiring to obtain Federal aid for the purpose of advance planning and engineering must submit a completed... existence, must accompany the advance planning proposal. If the advance planning proposal includes...

  12. 14 CFR 151.117 - Advance planning proposals: Procedures; application.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... desiring to obtain Federal aid for the purpose of advance planning and engineering must submit a completed... existence, must accompany the advance planning proposal. If the advance planning proposal includes...

  13. The quality of paper-based versus electronic nursing care plan in Australian aged care homes: A documentation audit study.

    PubMed

    Wang, Ning; Yu, Ping; Hailey, David

    2015-08-01

    The nursing care plan plays an essential role in supporting care provision in Australian aged care. The implementation of electronic systems in aged care homes was anticipated to improve documentation quality. Standardized nursing terminologies, developed to improve communication and advance the nursing profession, are not required in aged care practice. The language used by nurses in the nursing care plan and the effect of the electronic system on documentation quality in residential aged care need to be investigated. To describe documentation practice for the nursing care plan in Australian residential aged care homes and to compare the quantity and quality of documentation in paper-based and electronic nursing care plans. A nursing documentation audit was conducted in seven residential aged care homes in Australia. One hundred and eleven paper-based and 194 electronic nursing care plans, conveniently selected, were reviewed. The quantity of documentation in a care plan was determined by the number of phrases describing a resident problem and the number of goals and interventions. The quality of documentation was measured using 16 relevant questions in an instrument developed for the study. There was a tendency to omit 'nursing problem' or 'nursing diagnosis' in the nursing process by changing these terms (used in the paper-based care plan) to 'observation' in the electronic version. The electronic nursing care plan documented more signs and symptoms of resident problems and evaluation of care than the paper-based format (48.30 vs. 47.34 out of 60, P<0.01), but had a lower total mean quality score. The electronic care plan contained fewer problem or diagnosis statements, contributing factors and resident outcomes than the paper-based system (P<0.01). Both types of nursing care plan were weak in documenting measurable and concrete resident outcomes. The overall quality of documentation content for the nursing process was no better in the electronic system than in

  14. Patient care delivery and integration: stimulating advancement of ambulatory care pharmacy practice in an era of healthcare reform.

    PubMed

    Epplen, Kelly T

    2014-08-15

    This article discusses how to plan and implement an ambulatory care pharmacist service, how to integrate a hospital- or health-system-based service with the mission and operations of the institution, and how to help the institution meet its challenges related to quality improvement, continuity of care, and financial sustainability. The steps in implementing an ambulatory care pharmacist service include (1) conducting a needs assessment, (2) aligning plans for the service with the mission and goals of the parent institution, (3) collaborating with patients and physicians, (4) standardizing the patient care process, (5) proposing the service, (6) attaining the necessary resources, (7) identifying stakeholders, (8) identifying applicable quality standards, (9) defining competency standards, (10) planning for service payment, and (11) monitoring outcomes. Ambulatory care pharmacists have current opportunities to become engaged with patient-centered medical homes, accountable care organizations, preventive and wellness programs, and continuity of care initiatives. Common barriers to the advancement of ambulatory care pharmacist services include lack of complete access to patient information, inadequate information technology, and lack of payment. Ambulatory care pharmacy practitioners must assertively promote appropriate medication use, provide patient-centered care, pursue integration with the patient care team, and seek appropriate recognition and compensation for the services they provide. Copyright © 2014 by the American Society of Health-System Pharmacists, Inc. All rights reserved.

  15. Is it safe? Talking to teens with HIV/AIDS about death and dying: a 3-month evaluation of Family Centered Advance Care (FACE) planning – anxiety, depression, quality of life

    PubMed Central

    Lyon, Maureen E; Garvie, Patricia A; Briggs, Linda; He, Jianping; Malow, Robert; D’Angelo, Lawrence J; McCarter, Robert

    2010-01-01

    Purpose To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention. Patients and methods We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006–2008 with HIV+ adolescents and their surrogates (n = 76). Three 60–90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey©, the Respecting Choices® interview, and completion of The Five Wishes©. The Healthy Living Control (HLC) received: Developmental History, Healthy Tips, Future Planning (vocational, school or vocational rehabilitation). Three-month post-intervention outcomes were: completion of advance directive (Five Wishes©); psychological adjustment (Beck Depression, Anxiety Inventories); quality of life (PedsQL™); and HIV symptoms (General Health Self-Assessment). Results Adolescents had a mean age, 16 years; 40% male; 92% African-American; 68% with perinatally acquired HIV, 29% had AIDS diagnosis. FACE participants completed advance directives more than controls, using time matched comparison (P < 0.001). Neither anxiety, nor depression, increased at clinically or statistically significant levels post-intervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school (P = 0.018) and emotional (P = 0.029) quality of life at 3 months, compared with controls. Conclusions Participating in advance care planning did not unduly distress HIV+ adolescents. PMID:22096382

  16. Strategic Planning for Research in Pediatric Critical Care.

    PubMed

    Tamburro, Robert F; Jenkins, Tammara L; Kochanek, Patrick M

    2016-11-01

    To summarize the scientific priorities and potential future research directions for pediatric critical care research discussed by a panel of experts at the inaugural Strategic Planning Conference of the Pediatric Trauma and Critical Illness Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Expert opinion expressed during the Strategic Planning Conference. Not applicable. Chaired by an experienced expert from the field, issues relevant to the conduct of pediatric critical care research were discussed and debated by the invited participants. Common themes and suggested priorities were identified and coalesced. Of the many pathophysiologic conditions discussed, the multiple organ dysfunction syndrome emerged as a topic in need of more study that is most relevant to the field. Additionally, the experts offered that the interrelationship and impact of critical illness on child development and family functioning are important research priorities. Consequently, long-term outcomes research was encouraged. The expert group also suggested that multidisciplinary conferences are needed to help identify key knowledge gaps to advance and direct research in the field. The Pediatric Critical Care and Trauma Scientist Development National K12 Program and the Collaborative Pediatric Critical Care Research Network were recognized as successful and important programs supported by the branch. The development of core data resources including biorepositories with robust phenotypic data using common data elements was also suggested to foster data sharing among investigators and to enhance disease diagnosis and discovery. Multicenter clinical trials and innovative study designs to address understudied and poorly understood conditions were considered important for field advancement. Finally, the growth of the pediatric critical care research workforce was offered as a priority that could be spawned in many ways including by expanded

  17. Strategic Planning for Research in Pediatric Critical Care

    PubMed Central

    Tamburro, Robert F.; Jenkins, Tammara L.; Kochanek, Patrick M.

    2016-01-01

    Objective To summarize the scientific priorities and potential future research directions for pediatric critical care research discussed by a panel of experts at the inaugural Strategic Planning Conference of the Pediatric Trauma and Critical Illness Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Data Sources Expert opinion expressed during the Strategic Planning Conference. Study Selection Not applicable Data Extraction Chaired by an experienced expert from the field, issues relevant to the conduct of pediatric critical care research were discussed and debated by the invited participants. Data Synthesis Common themes and suggested priorities were identified and coalesced. Conclusions Of the many pathophysiological conditions discussed, the multiple organ dysfunction syndrome emerged as a topic in need of more study that is most relevant to the field. Additionally, the experts offered that the inter-relationship and impact of critical illness on child development and family functioning are important research priorities. Consequently, long-term outcomes research was encouraged. The expert group also suggested that multidisciplinary conferences are needed to help identify key knowledge gaps to advance and direct research in the field. The Pediatric Critical Care and Trauma Scientist Development National K12 Program and the Collaborative Pediatric Critical Care Research Network were recognized as successful and important programs supported by the branch. The development of core data resources including biorepositories with robust phenotypic data using common data elements was also suggested to foster data sharing among investigators and to enhance disease diagnosis and discovery. Multicenter clinical trials and innovative study designs to address understudied and poorly understood conditions were considered important for field advancement. Finally, the growth of the pediatric critical care research workforce was offered

  18. Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT.

    PubMed

    Curtin, Katherine B; Watson, Anne E; Wang, Jichuan; Okonkwo, Obianuju C; Lyon, Maureen E

    2017-11-01

    Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14-20years old with cancer and their family decision maker (≥18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes. Copyright © 2017 Elsevier Inc. All rights reserved.

  19. Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.

    PubMed

    Lyon, Maureen E; Dallas, Ronald H; Garvie, Patricia A; Wilkins, Megan L; Garcia, Ana; Cheng, Yao Iris; Wang, Jichuan

    2017-09-21

    To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised. Adolescents' mean age was 18 years (range ≥14-<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% believed in completing an advance directive ; 85% preferred to die at home ; 88% knowing how to say good bye ; 71% being off machines that extend life and 77% dying a natural death . Best timing for end-of-life (EOL) decisions was while healthy (38%), when first diagnosed (17%), when first sick from a life-threatening illness (4%), when first hospitalised (8%), if dying (4%) and all of the above (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that being free from pain (PABAK=0.83), and understanding your treatment choices (PABAK=0.92) were very important or important. There was discordance about being off machines that extend life (PABAK=0.08) and when is the best time to bring up EOL decisions (PABAK=0.32). Areas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth's EOL wishes. NCT01289444; Results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  20. Video decision support tool for advance care planning in dementia: randomised controlled trial

    PubMed Central

    Paasche-Orlow, Michael K; Barry, Michael J; Gillick, Muriel R; Minaker, Kenneth L; Chang, Yuchiao; Cook, E Francis; Abbo, Elmer D; El-Jawahri, Areej; Mitchell, Susan L

    2009-01-01

    Objective To evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks. Design Randomised controlled trial conducted between 1 September 2007 and 30 May 2008. Setting Four primary care clinics (two geriatric and two adult medicine) affiliated with three academic medical centres in Boston. Participants Convenience sample of 200 older people (≥65 years) living in the community with previously scheduled appointments at one of the clinics. Mean age was 75 and 58% were women. Intervention Verbal narrative alone (n=106) or with a video decision support tool (n=94). Main outcome measures Preferred goal of care: life prolonging care (cardiopulmonary resuscitation, mechanical ventilation), limited care (admission to hospital, antibiotics, but not cardiopulmonary resuscitation), or comfort care (treatment only to relieve symptoms). Preferences after six weeks. The principal category for analysis was the difference in proportions of participants in each group who preferred comfort care. Results Among participants receiving the verbal narrative alone, 68 (64%) chose comfort care, 20 (19%) chose limited care, 15 (14%) chose life prolonging care, and three (3%) were uncertain. In the video group, 81 (86%) chose comfort care, eight (9%) chose limited care, four (4%) chose life prolonging care, and one (1%) was uncertain (χ2=13.0, df=3, P=0.003). Among all participants the factors associated with a greater likelihood of opting for comfort care were being a college graduate or higher, good or better health status, greater health literacy, white race, and randomisation to the video arm. In multivariable analysis, participants in the video group were more likely to prefer comfort care than those in the verbal group (adjusted odds ratio 3.9, 95% confidence interval 1.8 to 8.6). Participants were re-interviewed after six weeks. Among the 94

  1. "Doctor, Make My Decisions": Decision Control Preferences, Advance Care Planning, and Satisfaction With Communication Among Diverse Older Adults.

    PubMed

    Chiu, Catherine; Feuz, Mariko A; McMahan, Ryan D; Miao, Yinghui; Sudore, Rebecca L

    2016-01-01

    Culturally diverse older adults may prefer varying control over medical decisions. Decision control preferences (DCPs) may profoundly affect advance care planning (ACP) and communication. To determine the DCPs of diverse, older adults and whether DCPs are associated with participant characteristics, ACP, and communication satisfaction. A total of 146 participants were recruited from clinics and senior centers in San Francisco. We assessed DCPs using the control preferences scale: doctor makes all decisions (low), shares with doctor (medium), makes own decisions (high). We assessed associations between DCPs and demographics; prior advance directives; ability to make in-the-moment goals of care decisions; self-efficacy, readiness, and prior asked questions; and satisfaction with patient-doctor communication (on a five-point Likert scale), using Chi-square and Kruskal-Wallis analysis of variance. Mean age was 71 ± 10 years, 53% were non-white, 47% completed an advance directive, and 70% made goals of care decisions. Of the sample, 18% had low DCPs, 33% medium, and 49% high. Older age was the only characteristic associated with DCPs (low: 75 ± 11 years, medium: 69 ± 10 years, high: 70 ± 9 years, P = 0.003). DCPs were not associated with ACP, in-the-moment decisions, or communication satisfaction. Readiness was the only question-asking behavior associated (low: 3.8 ± 1.2, medium: 4.1 ± 1.2, high: 4.3 ± 1.2, P = 0.05). Nearly one-fifth of diverse, older adults want doctors to make their medical decisions. Older age and lower readiness to ask questions were the only demographic variables significantly associated with low DCPs. Yet, older adults with low DCPs still engaged in ACP, asked questions, and reported communication satisfaction. Clinicians can encourage ACP and questions for all patients, but should assess DCPs to provide the desired amount of decision support. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All

  2. Engagement in Multiple Steps of the Advance Care Planning Process: A Descriptive Study Among Diverse Older Adults

    PubMed Central

    Sudore, Rebecca L.; Schickedanz, Adam D.; Landefeld, C. Seth; Williams, Brie A.; Lindquist, Karla; Pantilat, Steven Z.; Schillinger, Dean

    2017-01-01

    Objectives Advance care planning (ACP) research and policy has focused on documentation, ignoring other ACP steps. We propose an ACP model based on the behavior change framework. We assess engagement in multiple steps of ACP six months after exposure to an advance directive. Design Descriptive study Setting County General Medicine clinic in San Francisco Participants 147 English/Spanish-speakers, aged ≥50 years (mean 61) given a standard (12th-grade reading level) and easy-to-read (5th grade) advance directive. Measurements Six months after exposure to advance directives, we measured self-reported ACP contemplation; discussions with family/friends and clinicians; and documentation. We examined associations between ACP steps and explored subject characteristics associated with ACP. Results Most participants (73%) were non-white and 31% had < high school education. Sixty one percent contemplated ACP, 56% discussed ACP with family/friends, 22% discussed with clinicians, and 13% documented ACP wishes. Compared to subjects who had not discussed ACP with family/friends, those who had were more likely to discuss ACP with their clinicians (36% vs. 2%, P<.001) and document ACP wishes (18% vs. 4%, P=.009). Latinos and subjects with < high school education more often discussed ACP with family/friends (P<.06) and clinicians (P<.03) than other ethnic groups and subjects with more education. Conclusion ACP involves distinct steps including contemplation, discussions, and documentation. The ACP paradigm should be broadened to include contemplation and discussions. Promoting discussions among family/friends may be one of the most important targets for ACP interventions, and literacy/language appropriate advance directives may help reverse patterns of socio-demographic disparities in ACP. PMID:18410324

  3. Feasibility and acceptability of advance care planning in elderly Italian and Greek speaking patients as compared to English-speaking patients: an Australian cross-sectional study.

    PubMed

    Detering, Karen; Sutton, Elizabeth; Fraser, Scott; Wallis, Kasey; Silvester, William; Mawren, Daveena; Whiteside, Kathryn

    2015-08-28

    To assess the feasibility and acceptability of facilitated advance care planning (ACP) discussions in elderly Italian and Greek-speaking inpatients compared to English-speaking inpatients. This cross-sectional study with convenience sampling was conducted in Melbourne, Australia, and recruited hospital inpatients with medical decision-making capacity, aged 65 years or above, who spoke Greek (25 patients), Italian (24 patients) or English (63 patients). Facilitated ACP was offered, aiming to assists patients to consider and discuss their goals, values, beliefs and future treatment wishes with their family and doctor; to help them consider how they would like healthcare decisions made in the future if they become unable to do this for themselves; and to complete advance care directives. The completion of ACP discussions, their duration, advance care directive completion and utilisation of interpreters. Of 112 patients, 109 (97%) had at least one discussion, 63 (54%) completed advance care directives, either nominating a substitute decision-maker, documenting their wishes or both, and 76 (68%) included family in discussions. The median duration of discussions for all patients was slightly more than 1 h, over two visits. There were no differences between the Greek-speaking and the Italian-speaking patients, or between the Non-English speaking and the English-speaking patients in any of these measures. Only 14 non-English speaking patients, (30%) utilised interpreters, but when utilised, patients were much more likely (p<0.005) to complete advance care directives. Facilitated ACP in elderly Italian and Greek-speaking patients is feasible, acceptable and is similar to that for English-speaking patients. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  4. Wellness in Sickness and Health (The W.I.S.H. Project): Advance Care Planning Preferences and Experiences Among Elderly Latino Patients.

    PubMed

    Maldonado, Lauren Y; Goodson, Ruth B; Mulroy, Matthew C; Johnson, Emily M; Reilly, Jo M; Homeier, Diana C

    2017-10-25

    To assess advance care planning (ACP) preferences, experiences, and comfort in discussing end-of-life (EOL) care among elderly Latinos. Patients aged 60 and older from the Los Angeles County and University of Southern California (LAC+USC) Medical Center Geriatrics Clinic (n = 41) participated in this intervention. Trained staff conducted ACP counseling with participants in their preferred language, which included: (a) pre-counseling survey about demographics and EOL care attitudes, (b) discussion of ACP and optional completion of an advance directive (AD), and (c) post-session survey. Patients were primarily Spanish speaking with an average of 2.7 chronic medical conditions. Most had not previously documented (95%) or discussed (76%) EOL wishes. Most were unaware they had control over their EOL treatment (61%), but valued learning about EOL options (83%). Post-counseling, 85% reported comfort discussing EOL goals compared to 66% pre-session, and 88% elected to complete an AD. Nearly half of patients reported a desire to discuss EOL wishes sooner. Elderly Latino patients are interested in ACP, given individualized, culturally competent counseling in their preferred language. Patients should be offered the opportunity to discuss and document EOL wishes at all primary care appointments, regardless of health status. Counseling should be completed in the patient's preferred language, using culturally competent materials, and with family members present if this is the patient's preference. Cultural-competency training for providers could enhance the impact of EOL discussions and improve ACP completion rates for Latino patients.

  5. Advanced planning for ISS payload ground processing

    NASA Astrophysics Data System (ADS)

    Page, Kimberly A.

    2000-01-01

    Ground processing at John F. Kennedy Space Center (KSC) is the concluding phase of the payload/flight hardware development process and is the final opportunity to ensure safe and successful recognition of mission objectives. Planning for the ground processing of on-orbit flight hardware elements and payloads for the International Space Station is a responsibility taken seriously at KSC. Realizing that entering into this operational environment can be an enormous undertaking for a payload customer, KSC continually works to improve this process by instituting new/improved services for payload developer/owner, applying state-of-the-art technologies to the advanced planning process, and incorporating lessons learned for payload ground processing planning to ensure complete customer satisfaction. This paper will present an overview of the KSC advanced planning activities for ISS hardware/payload ground processing. It will focus on when and how KSC begins to interact with the payload developer/owner, how that interaction changes (and grows) throughout the planning process, and how KSC ensures that advanced planning is successfully implemented at the launch site. It will also briefly consider the type of advance planning conducted by the launch site that is transparent to the payload user but essential to the successful processing of the payload (i.e. resource allocation, executing documentation, etc.) .

  6. Augmenting advance care planning in poor prognosis cancer with a video decision aid: a preintervention-postintervention study.

    PubMed

    Volandes, Angelo E; Levin, Tomer T; Slovin, Susan; Carvajal, Richard D; O'Reilly, Eileen M; Keohan, Mary Louise; Theodoulou, Maria; Dickler, Maura; Gerecitano, John F; Morris, Michael; Epstein, Andrew S; Naka-Blackstone, Anastazia; Walker-Corkery, Elizabeth S; Chang, Yuchiao; Noy, Ariela

    2012-09-01

    The authors tested whether an educational video on the goals of care in advanced cancer (life-prolonging care, basic care, or comfort care) helped patients understand these goals and had an impact on their preferences for resuscitation. A survey of 80 patients with advanced cancer was conducted before and after they viewed an educational video. The outcomes of interest included changes in goals of care preference and knowledge and consistency of preferences with code status. Before viewing the video, 10 patients (13%) preferred life-prolonging care, 24 patients (30%) preferred basic care, 29 patients (36%) preferred comfort care, and 17 patients (21%) were unsure. Preferences did not change after the video, when 9 patients (11%) chose life-prolonging care, 28 patients (35%) chose basic care, 29 patients (36%) chose comfort care, and, 14 patients (18%) were unsure (P = .28). Compared with baseline, after the video presentation, more patients did not want cardiopulmonary resuscitation (CPR) (71% vs 62%; P = .03) or ventilation (80% vs 67%; P = .008). Knowledge about goals of care and likelihood of resuscitation increased after the video (P < .001). Of the patients who did not want CPR or ventilation after the video augmentation, only 4 patients (5%) had a documented do-not-resuscitate order in their medical record (kappa statistic, -0.01; 95% confidence interval, -0.06 to 0.04). Acceptability of the video was high. Patients with advanced cancer did not change care preferences after viewing the video, but fewer wanted CPR or ventilation. Documented code status was inconsistent with patient preferences. Patients were more knowledgeable after the video, reported that the video was acceptable, and said they would recommend it to others. The current results indicated that this type of video may enable patients to visualize "goals of care," enriching patient understanding of worsening health states and better informing decision making. Copyright © 2012 American Cancer

  7. The Financial Impact of Advanced Kidney Disease on Canada Pension Plan and Private Disability Insurance Costs

    PubMed Central

    Manns, Braden; McKenzie, Susan Q.; Au, Flora; Gignac, Pamela M.; Geller, Lawrence Ian

    2017-01-01

    Background: Many working-age individuals with advanced chronic kidney disease (CKD) are unable to work, or are only able to work at a reduced capacity and/or with a reduction in time at work, and receive disability payments, either from the Canadian government or from private insurers, but the magnitude of those payments is unknown. Objective: The objective of this study was to estimate Canada Pension Plan Disability Benefit and private disability insurance benefits paid to Canadians with advanced kidney failure, and how feasible improvements in prevention, identification, and early treatment of CKD and increased use of kidney transplantation might mitigate those costs. Design: This study used an analytical model combining Canadian data from various sources. Setting and Patients: This study included all patients with advanced CKD in Canada, including those with estimated glomerular filtration rate (eGFR) <30 mL/min/m2 and those on dialysis. Measurements: We combined disability estimates from a provincial kidney care program with the prevalence of advanced CKD and estimated disability payments from the Canada Pension Plan and private insurance plans to estimate overall disability benefit payments for Canadians with advanced CKD. Results: We estimate that Canadians with advanced kidney failure are receiving disability benefit payments of at least Can$217 million annually. These estimates are sensitive to the proportion of individuals with advanced kidney disease who are unable to work, and plausible variation in this estimate could mean patients with advanced kidney disease are receiving up to Can$260 million per year. Feasible strategies to reduce the proportion of individuals with advanced kidney disease, either through prevention, delay or reduction in severity, or increasing the rate of transplantation, could result in reductions in the cost of Canada Pension Plan and private disability insurance payments by Can$13.8 million per year within 5 years. Limitations

  8. Life care planning after traumatic brain injury.

    PubMed

    Zasler, Nathan D; Ameis, Arthur; Riddick-Grisham, Susan N

    2013-08-01

    A life care plan is a detailed and comprehensive analysis of impairments, realistic needs, and associated costs relevant to providing a lifetime of care to patients. Physicians have a central role in advising life care planners. Within an expertly prepared life care plan, issues must correspond directly with proposed goods and services. A life care plan must clearly cite all relevant caregiver sources and rely on scientific evidence. The central tenets of a life care plan and the ethical and professional roles that physicians may play in the context of traumatic brain injury and a life care plan are reviewed in this article. Copyright © 2013 Elsevier Inc. All rights reserved.

  9. Employer health care plan design and its effect on plan costs.

    PubMed

    Custer, W S

    1991-01-01

    This study uses claims data from employers in the Houston Area Health Care Coalition (HAHCC) for 1985 through the first half of 1987 to examine the effect of health care plan attributes on health care costs. Plan attributes affect the site of care and the costs of care. Utilization review clearly was effective in reducing the demand for inpatient services, but that reduction was in large measure matched by increases in care in the outpatient setting. Restrictions on mental health benefits also shifted the site of care. In contrast, neither premium sharing nor the plan's deductible had a significant impact on total plan charges. The study results demonstrate the need to have a comprehensive cost management strategy.

  10. Peer education for advance care planning: volunteers’ perspectives on training and community engagement activities

    PubMed Central

    Seymour, Jane E.; Almack, Kathryn; Kennedy, Sheila; Froggatt, Katherine

    2011-01-01

    Abstract Background  Peer education by volunteers may aid attitudinal change, but there is little understanding of factors assisting the preparation of peer educators. This study contributes to conceptual understandings of how volunteers may be prepared to work as peer educators by drawing on an evaluation of a training programme for peer education for advance care planning (ACP). Objectives  To report on volunteers’ perspectives on the peer education training programme, their feelings about assuming the role of volunteer peer educators and the community engagement activities with which they engaged during the year after training. To examine broader implications for peer education. Design  Participatory action research employing mixed methods of data collection. Participants  Twenty‐four older volunteers and eight health and social care staff. Data collection methods  Evaluative data were gathered from information provided during and at the end of training, a follow‐up survey 4 months post‐training; interviews and focus groups 6 and 12 months post‐training. Findings  Volunteers’ personal aims ranged from working within their communities to using what they had learnt within their own families. The personal impact of peer education was considerable. Two‐thirds of volunteers reported community peer education activities 1 year after the training. Those who identified strongly with a community group had the most success. Conclusion  We reflect on the extent to which the programme aided the development of ‘critical consciousness’ among the volunteers: a key factor in successful peer education programmes. More research is needed about the impact on uptake of ACP in communities. PMID:21615641

  11. Advanced 3-dimensional planning in neurosurgery.

    PubMed

    Ferroli, Paolo; Tringali, Giovanni; Acerbi, Francesco; Schiariti, Marco; Broggi, Morgan; Aquino, Domenico; Broggi, Giovanni

    2013-01-01

    During the past decades, medical applications of virtual reality technology have been developing rapidly, ranging from a research curiosity to a commercially and clinically important area of medical informatics and technology. With the aid of new technologies, the user is able to process large amounts of data sets to create accurate and almost realistic reconstructions of anatomic structures and related pathologies. As a result, a 3-diensional (3-D) representation is obtained, and surgeons can explore the brain for planning or training. Further improvement such as a feedback system increases the interaction between users and models by creating a virtual environment. Its use for advanced 3-D planning in neurosurgery is described. Different systems of medical image volume rendering have been used and analyzed for advanced 3-D planning: 1 is a commercial "ready-to-go" system (Dextroscope, Bracco, Volume Interaction, Singapore), whereas the others are open-source-based software (3-D Slicer, FSL, and FreesSurfer). Different neurosurgeons at our institution experienced how advanced 3-D planning before surgery allowed them to facilitate and increase their understanding of the complex anatomic and pathological relationships of the lesion. They all agreed that the preoperative experience of virtually planning the approach was helpful during the operative procedure. Virtual reality for advanced 3-D planning in neurosurgery has achieved considerable realism as a result of the available processing power of modern computers. Although it has been found useful to facilitate the understanding of complex anatomic relationships, further effort is needed to increase the quality of the interaction between the user and the model.

  12. Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians.

    PubMed

    van der Steen, Jenny T; Galway, Karen; Carter, Gillian; Brazil, Kevin

    2016-01-01

    In dementia, advance care planning (ACP) of end-of-life issues may start as early as possible in view of the patient's decreasing ability to participate in decision making. We aimed to assess whether practicing physicians in the Netherlands and the United Kingdom who provide most of the end-of-life care, differ in finding that ACP in dementia should start at diagnosis. In a cross-sectional study, we surveyed 188 Dutch elderly care physicians who are on the staff of nursing homes and 133 general practitioners from Northern Ireland. We compared difference by country in the outcome (perception of ACP timing), rated on a 1-5 agreement scale. Regression analyses examined whether a country difference can be explained by contrasts in demographics, presence, exposure and role perceptions. There was wide variability in agreement with the initiation of ACP at dementia diagnosis, in particular in the UK but also in the Netherlands (60.8% agreed, 25.3% disagreed and 14.0% neither agreed, nor disagreed). Large differences in physician characteristics (Dutch physicians being more present, exposed and adopting a stronger role perception) hardly explained the modest country difference. The perception that the physician should take the initiative was independently associated with agreeing with ACP at diagnosis. There is considerable ambiguity about initiating ACP in dementia at diagnosis among physicians practicing in two different European health care systems and caring for different patient populations. ACP strategies should accommodate not only variations in readiness to engage in ACP early among patient and families, but also among physicians. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

  13. Planning Ahead: Advanced Heart Failure

    MedlinePlus

    ... transition is made from quantity of life to quality of life, hospice care provides comfort and support to advanced heart failure patients and their families. Hospice care services are often provided in the home by a ...

  14. A Pilot Feasibility Intervention to Increase Advance Care Planning among African Americans in the Deep South.

    PubMed

    Huang, Chao-Hui Sylvia; Crowther, Martha; Allen, Rebecca S; DeCoster, Jamie; Kim, Giyeon; Azuero, Casey; Ang, Xinying; Kvale, Elizabeth

    2016-02-01

    Despite growing efforts to facilitate advance care planning (ACP) to decrease health disparities in palliative care, low completion rates of advance directives (AD) have been consistently found among African Americans. The objective was to examine the feasibility of a multicomponent ACP intervention program that integrates motivational interviewing, evidence-based ACP facilitation program (Respecting Choices(®)), and health-literacy adjusted AD. This pilot study aims to address the unique barriers to ACP engagement among African Americans in the Deep South. The design was a mixed-method randomized controlled trial design. Analysis of covariance (ANCOVA) and thematic content analysis (TCA) were conducted to identify barriers and facilitators for ACP engagement and to assess feasibility, knowledge, and intention to complete an AD. Thirty community-dwelling African Americans (mean age M = 55.43, SD = 6.71, range = 47-73) were recruited from the Deep South and randomly assigned to receive intervention (n = 15) or educational material (n = 15) at a local university medical center. All participants (n = 30) reported high satisfaction (M = 4.81, SD = 0.44, max score = 5) and increased intent to complete an AD at postintervention. A significant increase in knowledge on AD from baseline to postintervention was observed in the intervention group-t(14) = -3.06, p = 0.01, d = 1.67); no significant change was found for control. Lack of information, mistrust of doctors, and avoidance of discussing death were primary barriers to ACP discussions. Facilitators include ACP education, decreased mistrust, and proactive initiation of ongoing ACP discussions. Feasibility data revealed successful implementation of a brief intervention to increase ACP engagement and willingness to complete an AD among southern African Americans.

  15. The advance care planning PREPARE study among older Veterans with serious and chronic illness: study protocol for a randomized controlled trial.

    PubMed

    Sudore, Rebecca; Le, Gem M; McMahan, Ryan; McMahon, Ryan; Feuz, Mariko; Katen, Mary; Barnes, Deborah E

    2015-12-12

    Advance care planning (ACP) is a process whereby patients prepare for medical decision-making. The traditional objective of ACP has focused on the completion of advance directives. We have developed a new paradigm of ACP focused on preparing patients and their loved ones for communication and informed medical decision-making. To operationalize this new paradigm of ACP, we created an interactive, patient-centered website called PREPARE ( www.prepareforyourcare.org ) designed for diverse older adults. This randomized controlled trial with blinded outcome assessment is designed to determine the efficacy of PREPARE to engage older Veterans in the ACP process. Veterans who are ≥ 60 years of age, have ≥ two medical conditions, and have seen a primary care physician ≥ two times in the last year are being randomized to one of two study arms. The PREPARE study arm reviews the PREPARE website and an easy-to-read advance directive. The control arm only reviews the advance directive. The primary outcome is documentation of an advance directive and ACP discussions. Other clinically important outcomes using validated surveys include ACP behavior change process measures (knowledge, contemplation, self-efficacy, and readiness) and a full range of ACP action measures (identifying a surrogate, identifying values and goals, choosing leeway or flexibility for the surrogate, communicating with clinicians and surrogates, and documenting one's wishes). We will also assess satisfaction with decision-making and Veteran activation within primary care visits by direct audio recording. To examine the outcomes at 1 week, 3 months, and 6 months between the two study arms, we will use mixed effects linear, Poisson, or negative binomial regression and mixed effects logistic regression. This study will determine whether PREPARE increases advance directive completion rates and engagement with the ACP process. If PREPARE is efficacious, it could prove to be an easy and effective

  16. Advanced Education and Technology Business Plan, 2008-11

    ERIC Educational Resources Information Center

    Alberta Advanced Education and Technology, 2008

    2008-01-01

    The Ministry of Advanced Education and Technology's 2008-11 business plan identifies how it plans to work over the next three years to enhance advanced learning opportunities and innovation for all Albertans. Alberta's advanced learning system is composed of public board-governed institutions, the apprenticeship and industry training system,…

  17. Community-based game intervention to improve South Asian Indian Americans' engagement with advanced care planning.

    PubMed

    Radhakrishnan, Kavita; Van Scoy, Lauren Jodi; Jillapalli, Regina; Saxena, Shubhada; Kim, Miyong T

    2017-07-27

    Advance care planning (ACP) allows individuals to express their preferences for medical treatment in the event that they become incapable of making their own decisions. This study assessed the efficacy of a conversation game intervention for increasing South Asian Indian Americans' (SAIAs') engagement in ACP behaviors as well as the game's acceptability and cultural appropriateness among SAIAs. Eligible community-dwelling SAIAs were recruited at SAIA cultural events held in central Texas during the summer of 2016. Pregame questionnaires included demographics and the 55-item ACP Engagement Survey. Played in groups of 3-5, the game consists of 17 open-ended questions that prompt discussions of end-of-life issues. After each game session, focus groups and questionnaires were used to examine the game's cultural appropriateness and self-rated conversation quality. Postintervention responses on the ACP Engagement Survey and rates of participation in ACP behaviors were collected after 3 months through phone interviews or online surveys. Data were analyzed using descriptive statistics, frequencies, and paired t-tests comparing pre/post averages at a .05 significance level. Of the 47 participants, 64% were female, 62% had graduate degrees, 92% had lived in the U.S. for >10 years, 87% were first-generation immigrants, and 74% had no advance directive prior to the game. At the 3-month follow-up, 58% of participants had completed at least one ACP behavior, 42% had discussed end-of-life issues with loved ones, 15% did so with their healthcare providers, and 18% had created an advanced directive. ACP Engagement Survey scores increased significantly on all four of the process subscales by 3 months postgame. SAIA individuals who played a conversation game had a relatively high rate of performing ACP behaviors 3 months after the intervention. These findings suggest that conversation games may be useful tools for motivating people from minority communities to engage in ACP behaviors.

  18. Planning and Decision Making for Care Transitions

    PubMed Central

    Sörensen, Silvia; Mak, Wingyun; Pinquart, Martin

    2015-01-01

    The need to plan for future health care and residential adjustments increases with age, growing frailty, and restrictions in coverage of long-term care and will continue to grow with population aging. Older adults’ lack of financial preparation for health care costs, insufficient knowledge about available options, and inadequate communication about care-related values has become an increasing public health challenge. This chapter describes a model of Preparation for Future Care (PFC), which encompasses different levels and domains of planning. Research about the extent to which planning is helpful in navigating care transitions is reviewed, and barriers and facilitators of planning including individual, familial, cultural, and national long-term care policy factors are discussed. Planning in the context of dementia and practical approaches that can be taken to enhance PFC is addressed, as well as recommendations for future research in the area of planning and decision making in the context of care transitions. PMID:26207079

  19. 14 CFR 151.111 - Advance planning proposals: General.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Engineering Proposals § 151.111 Advance planning proposals: General. (a) Each advance planning and engineering... application, under §§ 151.21(c) and 151.27, or both. (c) Each proposal must relate to planning and engineering... “Airport Activity Statistics of Certificated Route Air Carriers” (published jointly by FAA and the Civil...

  20. Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?

    PubMed

    Van Scoy, Lauren J; Green, Michael J; Reading, Jean M; Scott, Allison M; Chuang, Cynthia H; Levi, Benjamin H

    2017-09-01

    Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP. Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones. Participants' (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention. This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.

  1. Advance care planning, culture and religion: an environmental scan of Australian-based online resources.

    PubMed

    Pereira-Salgado, Amanda; Mader, Patrick; Boyd, Leanne M

    2017-04-20

    Objectives Culture and religion are important in advance care planning (ACP), yet it is not well understood how this is represented in ACP online resources. The aim of the present study was to identify the availability of Australian-based ACP websites and online informational booklets containing cultural and religious information. Methods An environmental scanning framework was used with a Google search conducted from 30 June 2015 to 5 July 2015. Eligible Australian-based ACP websites and online informational booklets were reviewed by two analysts (APS & PM) for information pertaining to at least one culture or religion. Common characteristics were agreed upon and tabulated with narrative description. Results Seven Australian-based ACP websites were identified with varying degrees of cultural and religious information. Seven Australian-based ACP informational booklets were identified addressing culture or religion, namely of Aboriginal and Torres Strait Islander (n=5), Sikh (n=1) and Italian (n=1) communities. Twenty-one other online resources with cultural and religious information were identified, developed within the context of health and palliative care. Conclusions There is no comprehensive Australian-based ACP website or informational booklet supporting ACP across several cultural and religious contexts. Considering Australia's multicultural and multifaith population, such a resource may be beneficial in increasing awareness and uptake of ACP. What is known about the topic? Health professionals and consumers frequently use the Internet to find information. Non-regulation has resulted in the proliferation of ACP online resources (i.e. ACP websites and online informational booklets). Although this has contributed to raising awareness of ACP, the availability of Australian-based ACP online resources with cultural and religious information is not well known. What does this paper add? This paper is the first to use an environmental scanning methodology to identify

  2. How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change.

    PubMed

    Gilissen, J; Pivodic, L; Gastmans, C; Vander Stichele, R; Deliens, L; Breuer, E; Van den Block, L

    2018-02-14

    Advance care planning (ACP) has been identified as particularly relevant for nursing home residents, but it remains unclear how or under what circumstances ACP works and can best be implemented in such settings. We aimed to develop a theory that outlines the hypothetical causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which processes and under what circumstances. The Theory of Change approach is a participatory method of programme design and evaluation whose underlying intention is to improve understanding of how and why a programme works. It results in a Theory of Change map that visually represents how, why and under what circumstances ACP is expected to work in nursing home settings in Belgium. Using this approach, we integrated the results of two workshops with stakeholders (n = 27) with the results of a contextual analysis and a systematic literature review. We identified two long-term outcomes that ACP can achieve: to improve the correspondence between residents’ wishes and the care/treatment they receive and to make sure residents and their family feel involved in planning their future care and are confident their care will be according to their wishes. Besides willingness on the part of nursing home management to implement ACP and act accordingly, other necessary preconditions are identified and put in chronological order. These preconditions serve as precursors to, or requirements for, accomplishing successful ACP. Nine original key intervention components with specific rationales are identified at several levels (resident/family, staff or nursing home) to target the preconditions: selection of a trainer, ensuring engagement by management, training ACP reference persons, in-service education for healthcare staff, information for staff, general practitioners, residents and their family, ACP conversations and documentation, regular reflection sessions, multidisciplinary meetings, and formal monitoring. The Theory of

  3. 42 CFR 495.336 - Health information technology planning advance planning document requirements (HIT PAPD).

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 5 2011-10-01 2011-10-01 false Health information technology planning advance... STANDARDS FOR THE ELECTRONIC HEALTH RECORD TECHNOLOGY INCENTIVE PROGRAM Requirements Specific to the Medicaid Program § 495.336 Health information technology planning advance planning document requirements...

  4. 42 CFR 495.336 - Health information technology planning advance planning document requirements (HIT PAPD).

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 5 2013-10-01 2013-10-01 false Health information technology planning advance... STANDARDS FOR THE ELECTRONIC HEALTH RECORD TECHNOLOGY INCENTIVE PROGRAM Requirements Specific to the Medicaid Program § 495.336 Health information technology planning advance planning document requirements...

  5. 42 CFR 495.336 - Health information technology planning advance planning document requirements (HIT PAPD).

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 5 2012-10-01 2012-10-01 false Health information technology planning advance... STANDARDS FOR THE ELECTRONIC HEALTH RECORD TECHNOLOGY INCENTIVE PROGRAM Requirements Specific to the Medicaid Program § 495.336 Health information technology planning advance planning document requirements...

  6. 42 CFR 495.336 - Health information technology planning advance planning document requirements (HIT PAPD).

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 5 2014-10-01 2014-10-01 false Health information technology planning advance... STANDARDS FOR THE ELECTRONIC HEALTH RECORD TECHNOLOGY INCENTIVE PROGRAM Requirements Specific to the Medicaid Program § 495.336 Health information technology planning advance planning document requirements...

  7. 42 CFR 495.336 - Health information technology planning advance planning document requirements (HIT PAPD).

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 5 2010-10-01 2010-10-01 false Health information technology planning advance... STANDARDS FOR THE ELECTRONIC HEALTH RECORD TECHNOLOGY INCENTIVE PROGRAM Requirements Specific to the Medicaid Program § 495.336 Health information technology planning advance planning document requirements...

  8. A Description of Advanced Chronic Kidney Disease Patients in a Major Urban Center Receiving Conservative Care

    PubMed Central

    Kamar, Fareed B.; Tam-Tham, Helen; Thomas, Chandra

    2017-01-01

    Background: Conservative/palliative (nondialysis) management is an option for some individuals for treatment of stage 5 chronic kidney disease (CKD). Little is known about these individuals treated with conservative care in the Canadian setting. Objective: To describe the characteristics of patients treated with conservative care for category G5 non-dialysis CKD in a Canadian context. Design: Retrospective chart review. Setting: Urban nephrology center. Patients: Patients with G5 non-dialysis CKD (estimated glomerular filtration rate <15 mL/min/1.73 m2). Measurements: Baseline patient demographic and clinical characteristics of conservative care follow-up, advanced care planning, and death. Methods: We undertook a descriptive analysis of individuals enrolled in a conservative care program between January 1, 2009, and June 30, 2015. Results: One hundred fifty-four patients were enrolled in the conservative care program. The mean age and standard deviation was 81.4 ± 9.0 years. The mean modified Charlson Comorbidity Index score was 3.4 ± 2.8. The median duration of conservative care participation was 11.5 months (interquartile range: 4-25). Six (3.9%) patients changed their modality to dialysis. One hundred three (66.9%) patients died during the study period. Within the deceased cohort, most (88.2%) patients completed at least some advanced care planning before death, and most (81.7%) of them died at their preferred place. Twenty-seven (26.7%) individuals died in hospital. Limitations: Single-center study with biases inherent to a retrospective study. Generalizability to non-Canadian settings may be limited. Conclusions: We found that individuals who chose conservative care were very old and did not have high levels of comorbidity. Few individuals who chose conservative care changed modality and accepted dialysis. The proportions of engagement in advanced care planning and of death in place of choice were high in this population. Death in hospital was uncommon in

  9. Living into death: a case for an iterative, fortified and cross-sector approach to advance care planning.

    PubMed

    Llewellyn, Rebecca; Jaye, Chrystal; Egan, Richard; Cunningham, Wayne; Young, Jessica; Radue, Peter

    2017-12-01

    Advance care planning (ACP) has been framed as best practice for quality palliative care, yet a growing body of literature affirms the need for an early iterative ACP process to begin when people are young and healthy. A significant gap appears to exist in the literature regarding the utility of death conversations outside the end-of-life context. Could 'death conversations' early in life be an effective tool by which doctor and patient can co-construct a more healthful way of life, and realistic relationship with death? And what variables must be taken into account for these conversations to proceed successfully? This paper provides a narrative exploration of the value of death conversations in the clinical context in New Zealand. Five exemplars are discussed, drawn from a sample of 21 semi-structured interviews with young older adults (54-65 years old) not receiving palliative care or diagnosed with a terminal illness. Together, these narratives indicate that further community consultation is required to determine culturally appropriate ways to initiate productive conversations around aging, death and dying and how to build patient/practitioner/family relationships which allow these conversations to happen safely. There is a need to acknowledge the important factor of culture related to age, generation, sex, faith and ethnicity when engaging in conversations about aging, death and dying. By doing so, health professionals will be best equipped to assist their patients to live well into death.

  10. Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

    PubMed

    Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit

    2017-10-01

    Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

  11. Education and Executive Function Mediate Engagement in Advance Care Planning in Early Cognitive Impairment.

    PubMed

    Tay, Sze Yan; Davison, John; Jin, Ng Chong; Yap, Philip Lin Kiat

    2015-11-01

    Advance care planning (ACP) is an important component to holistic care for people with early cognitive impairment (ECI) who are generally still mentally capable of making rational decisions. This study explores the willingness of people with ECI to engage in ACP and how clinical and behavioral variables shape their decisions. Ninety-eight persons with ECI (mild cognitive impairment or early dementia, Clinical Dementia Rating = 0.5/1.0) and assessed to have adequate insight (Clinical Insight Rating Scale) underwent an ACP information session. They were assessed on their knowledge of dementia (Knowledge of Alzheimer Disease) and willingness to engage in ACP, and were interviewed on their beliefs and attitudes toward ACP (Perceived Barriers and Benefits Scale to ACP). Univariate analysis and logistic regression identified factors that predicted persons willing or unwilling to engage in ACP based on their responses to the perceived barriers and benefits of ACP as well as sociodemographic and clinical variables. Fifty-two persons (54%) were keen on ACP. On univariate analysis, persons with better executive function [Frontal Assessment Battery (FAB)] (t = -3.63, P < .0001), were more educated (t = -2.11, P = .038) and had lower barriers to ACP (t = 2.47, P = .015), particularly less "passive coping" (t = 2.83, P = .006), were more keen on ACP. Logistic regression revealed that the combined predictive model comprising FAB, education, and passive coping as a whole reliably differentiated those unwilling to engage in ACP from those who were willing (χ(2) = 18.995, P = .001 with df = 4). Wald criterion showed that FAB (P = .016) and passive coping (P = .023) contributed most to prediction. Better education and executive function predict willingness to engage in ACP, and these factors are instrumental in a person's ability to acquire knowledge and process information. Initiating ACP discussions early, increasing efforts at education, and providing tailored information are

  12. Development and Psychometric Properties of a Survey to Assess Barriers to Implementing Advance Care Planning in Primary Care.

    PubMed

    Howard, Michelle; Day, Andrew G; Bernard, Carrie; Tan, Amy; You, John; Klein, Doug; Heyland, Daren K

    2018-01-01

    Valid and reliable measurement of barriers to advance care planning (ACP) in health care settings can inform the design of robust interventions. This article describes the development and psychometric evaluation of an instrument to measure the presence and magnitude of perceived barriers to ACP discussion with patients from the perspective of family physicians. A questionnaire was designed through literature review and expert input, asking family physicians to rate the importance of barriers (0 = not at all a barrier and 6 = an extreme amount) to ACP discussions with patients and administered to 117 physicians. Floor effects and missing data patterns were examined. Item-by-item correlations were examined using Pearson correlation. Exploratory factor analysis was conducted (iterated principle factor analysis with oblique rotation), internal consistency (Cronbach's alpha) overall and within factors was calculated, and construct validity was evaluated by calculating three correlations with related questions that were specified a priori. The questionnaire included 31 questions in three domains relating to the clinician, patient/family and system or external factors. No items were removed due to missing data, floor effects, or high correlation with another item. A solution of three factors accounted for 71% of variance. One item was removed because it did not load strongly on any factor. All other items except one remained in the original domain in the questionnaire. Cronbach's alpha for the three factors ranged from 0.84 to 0.90. Two of three a priori correlations with related questions were statistically significant. This questionnaire to assess barriers to ACP discussion from the perspective of family physicians demonstrates preliminary evidence of reliability and validity. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  13. [Municipal planning of care services between competition neutrality and demand planning. An example of care structure planning in Rhineland-Palatinate].

    PubMed

    Klie, T; Pfundstein, T

    2010-04-01

    In times of demographic and social change, it is increasingly important to ensure the availability of care services to cover the growing demand. With the implementation of the German long-term insurance act in 1994, the responsibility of states and municipalities was maintained; however, given the long-term care legislation's market orientation and competition neutrality, the classic instruments for demand planning and supervision of infrastructure developments were lost. This leads to new challenges for states and municipalities: their conventional objective-oriented planning lacks professional and juridical legitimization. Calculations of requirements must relate to methodology and professional expertise. In order to exercise their influence on infrastructure development, instruments of demand planning other than subsidization are required. Using the example of Rheinland-Pfalz (Rhineland-Palatinate) and the newly implemented care structure planning, the concept of care monitoring is introduced, and instruments to influence infrastructure development are outlined.

  14. Managed care quality of care and plan choice in New York SCHIP.

    PubMed

    Liu, Hangsheng; Phelps, Charles E; Veazie, Peter J; Dick, Andrew W; Klein, Jonathan D; Shone, Laura P; Noyes, Katia; Szilagyi, Peter G

    2009-06-01

    To examine whether low-income parents of children enrolled in the New York State Children's Health Insurance Program (SCHIP) choose managed care plans with better quality of care. 2001 New York SCHIP evaluation data; 2001 New York State Managed Care Plan Performance Report; 2000 New York State Managed Care Enrollment Report. Each market was defined as a county. A final sample of 2,325 new enrollees was analyzed after excluding those in markets with only one SCHIP plan. Plan quality was measured using seven Consumer Assessment of Health Plans Survey (CAHPS) and three Health Plan Employer Data and Information Set (HEDIS) scores. A conditional logit model was applied with plan and individual/family characteristics as covariates. There were 30 plans in the 45 defined markets. The choice probability increased 2.5 percentage points for each unit increase in the average CAHPS score, and the association was significantly larger in children with special health care needs. However, HEDIS did not show any statistically significant association with plan choice. Low-income parents do choose managed care plans with higher CAHPS scores for their newly enrolled children, suggesting that overall quality could improve over time because of the dynamics of enrollment.

  15. Feasibility of a Video-Based Advance Care Planning Website to Facilitate Group Visits among Diverse Adults from a Safety-Net Health System.

    PubMed

    Zapata, Carly; Lum, Hillary D; Wistar, Emily; Horton, Claire; Sudore, Rebecca L

    2018-02-20

    Primary care providers in safety-net settings often do not have time to discuss advance care planning (ACP). Group visits (GV) may be an efficient means to provide ACP education. To assess the feasibility and impact of a video-based website to facilitate GVs to engage diverse adults in ACP. Feasibility pilot among patients who were ≥55 years of age from two primary care clinics in a Northern California safety-net setting. Participants attended two 90-minute GVs and viewed the five steps of the movie version of the PREPARE website ( www.prepareforyourcare.org ) concerning surrogates, values, and discussing wishes in video format. Two clinician facilitators were available to encourage participation. We assessed pre-to-post ACP knowledge, whether participants designated a surrogate or completed an advance directive (AD), and acceptability of GVs and PREPARE materials. We conducted two GVs with 22 participants. Mean age was 64 years (±7), 55% were women, 73% nonwhite, and 55% had limited literacy. Knowledge improved about surrogate designation (46% correct pre vs. 85% post, p = 0.01) and discussing decisions with others (59% vs. 90%, p = 0.01). Surrogate designation increased (48% vs. 85%, p = 0.01) and there was a trend toward AD completion (9% vs. 24%, p = 0.21). Participants rated the GVs and PREPARE materials a mean of 8 (±3.1) on a 10-point acceptability scale. Using the PREPARE movie to facilitate ACP GVs for diverse adults in safety net, primary care settings is feasible and shows potential for increasing ACP engagement.

  16. Health Instruction Packages: Nursing Care Plans.

    ERIC Educational Resources Information Center

    Kowalski, Dorcas S.; And Others

    Text, illustrations, and exercises are provided in this set of learning modules to teach nurses and nursing students various patient care skills. The first module, "How to Write a Nursing Care Plan" by Dorcas S. Kowalski, discusses three tasks in developing patient care plans: identifying and prioritizing a patient's needs, gathering…

  17. Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.

    PubMed

    Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F

    2018-02-01

    To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and

  18. Financial Incentives to Increase Advance Care Planning Among Medicaid Beneficiaries: Lessons Learned From Two Pragmatic Randomized Trials.

    PubMed

    Barnato, Amber E; Moore, Robert; Moore, Charity G; Kohatsu, Neal D; Sudore, Rebecca L

    2017-07-01

    Medicaid populations have low rates of advance care planning (ACP). Potential policy interventions include financial incentives. To test the effectiveness of patient plus provider financial incentive compared with provider financial incentive alone for increasing ACP discussions among Medicaid patients. Between April 2014 and July 2015, we conducted two sequential assessor-blinded pragmatic randomized trials in a health plan that pays primary care providers (PCPs) $100 to discuss ACP: 1) a parallel cluster trial (provider-delivered patient incentive) and 2) an individual-level trial (mail-delivered patient incentive). Control and intervention arms included encouragement to complete ACP, instructions for using an online ACP tool, and (in the intervention arm) $50 for completing the online ACP tool and a small probability of $1000 (i.e., lottery) for discussing ACP with their PCP. The primary outcome was provider-reported ACP discussion within three months. In the provider-delivered patient incentive study, 38 PCPs were randomized to the intervention (n = 18) or control (n = 20) and given 10 patient packets each to distribute. Using an intention-to-treat analysis, there were 27 of 180 ACP discussions (15%) in the intervention group and 5 of 200 (2.5%) in the control group (P = .0391). In the mail-delivered patient incentive study, there were 5 of 187 ACP discussions (2.7%) in the intervention group and 5 of 189 (2.6%) in the control group (P = .99). ACP rates were low despite an existing provider financial incentive. Adding a provider-delivered patient financial incentive, but not a mail-delivered patient incentive, modestly increased ACP discussions. PCP encouragement combined with a patient incentive may be more powerful than either encouragement or incentive alone. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  19. Managed Care Quality of Care and Plan Choice in New York SCHIP

    PubMed Central

    Liu, Hangsheng; Phelps, Charles E; Veazie, Peter J; Dick, Andrew W; Klein, Jonathan D; Shone, Laura P; Noyes, Katia; Szilagyi, Peter G

    2009-01-01

    Objective To examine whether low-income parents of children enrolled in the New York State Children's Health Insurance Program (SCHIP) choose managed care plans with better quality of care. Data Sources 2001 New York SCHIP evaluation data; 2001 New York State Managed Care Plan Performance Report; 2000 New York State Managed Care Enrollment Report. Study Design Each market was defined as a county. A final sample of 2,325 new enrollees was analyzed after excluding those in markets with only one SCHIP plan. Plan quality was measured using seven Consumer Assessment of Health Plans Survey (CAHPS) and three Health Plan Employer Data and Information Set (HEDIS) scores. A conditional logit model was applied with plan and individual/family characteristics as covariates. Principle Findings There were 30 plans in the 45 defined markets. The choice probability increased 2.5 percentage points for each unit increase in the average CAHPS score, and the association was significantly larger in children with special health care needs. However, HEDIS did not show any statistically significant association with plan choice. Conclusions Low-income parents do choose managed care plans with higher CAHPS scores for their newly enrolled children, suggesting that overall quality could improve over time because of the dynamics of enrollment. PMID:19208091

  20. 42 CFR 456.180 - Individual written plan of care.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 4 2011-10-01 2011-10-01 false Individual written plan of care. 456.180 Section... Plan of Care § 456.180 Individual written plan of care. (a) Before admission to a mental hospital or... plan of care for each applicant or recipient. (b) The plan of care must include— (1) Diagnoses...

  1. Meaningful Use of Data in Care Coordination by the Advanced Practice Registered Nurse: The TeleFamilies Project

    PubMed Central

    Looman, Wendy S.; Erickson, Mary M.; Garwick, Ann W.; Cady, Rhonda G.; Kelly, Anne; Pettey, Carrie; Finkelstein, Stanley M.

    2012-01-01

    Meaningful use of electronic health records to coordinate care requires skillful synthesis and integration of subjective and objective data by practitioners to provide context for information. This is particularly relevant in the coordination of care for children with complex special health care needs. The purpose of this paper is to present a conceptual framework and example of meaningful use within an innovative telenursing intervention to coordinate care for children with complex special health care needs. The TeleFamilies intervention engages an advanced practice nurse in a full-time care coordinator role within an existing hospital-based medical home for children with complex special health care needs. Care coordination is facilitated by the synthesis and integration of internal and external data using an enhanced electronic health record and telehealth encounters via telephone and videoconferencing between the advanced practice nurse and the family at home. The advanced practice nurse’s ability to maintain an updated plan of care that is shared across providers and systems and build a relationship over time with the patient and family supports meaningful use of these data. PMID:22948406

  2. Care Planning, Quality Assurance, and Personnel Management in Long-Term Care Facilities. Final Report.

    ERIC Educational Resources Information Center

    Patchner, Michael A.; Balgopal, Pallassana R.

    Three studies were undertaken to examine topics of care planning, personnel management, and quality assurance in long-term care facilities. The first study examined the formulation and implementation processes of care planning for nursing home residents. The exemplary homes' care planning included the existence of strong care planning leadership,…

  3. Report on milestones for care and support under the U.S. National Plan to Address Alzheimer's Disease.

    PubMed

    Borson, Soo; Boustani, Malaz A; Buckwalter, Kathleen C; Burgio, Louis D; Chodosh, Joshua; Fortinsky, Richard H; Gifford, David R; Gwyther, Lisa P; Koren, Mary Jane; Lynn, Joanne; Phillips, Cheryl; Roherty, Martha; Ronch, Judah; Stahl, Claudia; Rodgers, Lauren; Kim, Hye; Baumgart, Matthew; Geiger, Angela

    2016-03-01

    Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system. The workgroup developed and recommended 73 milestones for Goal 2 and 56 milestones for Goal 3. To advance the implementation of the U.S. national Alzheimer's plan, the U.S. government should adopt these recommended milestones, or develop similar milestones, to be incorporated into the national plan. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.

  4. 42 CFR 456.380 - Individual written plan of care.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care Facilities Plan of Care § 456.380 Individual written plan of care. (a) Before admission to an ICF or before... designed to meet the objectives of the plan of care; (5) Plans for continuing care, including review and...

  5. 42 CFR 456.380 - Individual written plan of care.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care Facilities Plan of Care § 456.380 Individual written plan of care. (a) Before admission to an ICF or before... designed to meet the objectives of the plan of care; (5) Plans for continuing care, including review and...

  6. 42 CFR 456.380 - Individual written plan of care.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care Facilities Plan of Care § 456.380 Individual written plan of care. (a) Before admission to an ICF or before... designed to meet the objectives of the plan of care; (5) Plans for continuing care, including review and...

  7. Advanced planetary analyses. [for planetary mission planning

    NASA Technical Reports Server (NTRS)

    1974-01-01

    The results are summarized of research accomplished during this period concerning planetary mission planning are summarized. The tasks reported include the cost estimations research, planetary missions handbook, and advanced planning activities.

  8. Federal Subsidies of Advanced Telecommunications for Schools, Libraries, and Health Care Providers. CBO Papers.

    ERIC Educational Resources Information Center

    Congress of the U.S., Washington, DC. Congressional Budget Office.

    The Telecommunications Act of 1996 directs the Federal Communications Commission (FCC) to include support for advanced telecommunications--such as the Internet and computer networking--for elementary and secondary schools, public libraries, and nonprofit rural health care providers among the Universal Service Fund (USF) mandates. In its plan, the…

  9. The diverse impact of advance care planning: a long-term follow-up study on patients' and relatives' experiences.

    PubMed

    Andreassen, Pernille; Neergaard, Mette Asbjørn; Brogaard, Trine; Skorstengaard, Marianne Hjorth; Jensen, Anders Bonde

    2017-09-01

    Advance care planning (ACP) is a process of discussing and recording patients' preferences for future care, aiming to guide healthcare decisions at the end of life (EOL). To explore nuances in the long-term impact of ACP by studying patient and relative experiences. A qualitative follow-up interview study. Interviews were recorded, transcribed and analysed using thematic synthesis. 3 patients with a life-limiting disease (lung or heart disease), affiliated with a major Danish hospital, and 7 relatives were interviewed 1 year after participating in an ACP discussion. The experiences were diverse. Some patients and relatives felt 'relieved', 'more secure' and more in control due to ACP. To some, ACP had led to open communication rather than 'beating around the bush', and to spending more quality time together. However, others perceived ACP as irrelevant. Some stated that the patient's wishes had not been met regardless of ACP. Others felt that EOL questions cannot be realistically considered until 'you're in the middle of it', because many factors are involved. In one case, participating in ACP led to a patient-relative conflict, resulting in EOL issues being 'tucked away'. The study reveals great diversity in patient and relative experiences of ACP. The study challenges previous research which mainly emphasises ACP as a valuable tool to optimise EOL care. This study stresses the importance of awareness of the highly individual nature of preferences and needs of patients and relatives regarding information, involvement and communication about EOL care. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  10. Strategic Planning for Health Care Cost Controls in a Constantly Changing Environment.

    PubMed

    Hembree, William E

    2015-01-01

    Health care cost increases are showing a resurgence. Despite recent years' comparatively modest increases, the projections for 2015 cost increases range from 6.6% to 7%--three to four times larger than 2015's expected underlying inflation. This resurgence is just one of many rapidly changing external and internal challenges health plan sponsors must overcome (and this resurgence advances the date when the majority of employers will trigger the "Cadillac tax"). What's needed is a planning approach that is effective in overcoming all known and yet-to-be-discovered challenges, not just affordability. This article provides detailed guidance in adopting six proven strategic planning steps. Following these steps will proactively and effectively create a flexible strategic plan for the present and future of employers' health plans that will withstand all internal and external challenges.

  11. Individual versus interprofessional team performance in formulating care transition plans: A randomised study of trainees from five professional groups.

    PubMed

    Farrell, Timothy W; Supiano, Katherine P; Wong, Bob; Luptak, Marilyn K; Luther, Brenda; Andersen, Troy C; Wilson, Rebecca; Wilby, Frances; Yang, Rumei; Pepper, Ginette A; Brunker, Cherie P

    2018-05-01

    Health professions trainees' performance in teams is rarely evaluated, but increasingly important as the healthcare delivery systems in which they will practice move towards team-based care. Effective management of care transitions is an important aspect of interprofessional teamwork. This mixed-methods study used a crossover design to randomise health professions trainees to work as individuals and as teams to formulate written care transition plans. Experienced external raters assessed the quality of the written care transition plans as well as both the quality of team process and overall team performance. Written care transition plan quality did not vary between individuals and teams (21.8 vs. 24.4, respectively, p = 0.42). The quality of team process did not correlate with the quality of the team-generated written care transition plans (r = -0.172, p = 0.659). However, there was a significant correlation between the quality of team process and overall team performance (r = 0.692, p = 0.039). Teams with highly engaged recorders, performing an internal team debrief, had higher-quality care transition plans. These results suggest that high-quality interprofessional care transition plans may require advance instruction as well as teamwork in finalising the plan.

  12. Timing of Advance Directive Completion and Relationship to Care Preferences.

    PubMed

    Enguidanos, Susan; Ailshire, Jennifer

    2017-01-01

    Given recent Medicare rules reimbursing clinicians for engaging in advance care planning, there is heightened need to understand factors associated with the timing of advance directive (AD) completion before death and how the timing impacts care decisions. The purpose of this study was to investigate patterns in timing of AD completion and the relationship between timing and documented care preferences. We hypothesize that ADs completed late in the course of illness or very early in the disease trajectory will reflect higher preferences for aggressive care. We conducted a retrospective study using logistic regressions to analyze data from the Health and Retirement Study, a nationally representative longitudinal survey of older adults. The analytic sample included exit interviews conducted from 2000 to 2012 among 2904 proxy reporters of deceased participants who had an AD. Nearly three-quarters (71%) of ADs were completed a year or more before death. Being younger or a racial/ethnic minority, and having lower education, a diagnosis of cancer or lung disease, and an expected death were associated with completing an AD within the three months before death, while having the lowest quartile of assets and memory problems were inversely associated with AD completion. Minorities, those with lower education, expected death, and timing of AD completion were associated with electing aggressive care. Early documentation of care wishes may not be associated with an increased likelihood of electing aggressive care; however, ADs completed in the last months of life have higher rates of election of aggressive care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  13. A Universal Anaphylaxis Emergency Care Plan: Introducing the New Allergy and Anaphylaxis Care Plan From the American Academy of Pediatrics.

    PubMed

    Pistiner, Michael; Mattey, Beth

    2017-09-01

    Anaphylaxis is a life-threatening emergency. In the school setting, school nurses prepare plans to prevent an emergency, educating staff and students on life-threatening allergies. A critical component of any emergency plan is a plan of care in the event of accidental ingestion or exposure to an antigen to prevent the sequelae of untreated anaphylaxis. A universal anaphylaxis emergency care plan developed by the American Academy of Pediatrics and reviewed by NASN offers an opportunity for schools, family, and health care providers to use one standard plan and avoid confusion. The plan and benefits of use are described in this article.

  14. Advanced rural transportation systems (ARTS) : strategic plan

    DOT National Transportation Integrated Search

    1997-08-01

    This Strategic Plan has been developed for the Advanced Rural Transportation Systems (ARTS) portion of the ITS Program. The plan focuses on the Federal Government's role in developing rural ITS options and prudently managing emerging ITS technologies...

  15. Multidisciplinary care planning in the primary care management of completed stroke: a systematic review

    PubMed Central

    Mitchell, Geoffrey K; Brown, Robyn M; Erikssen, Lars; Tieman, Jennifer J

    2008-01-01

    Background Chronic disease management requires input from multiple health professionals, both specialist and primary care providers. This study sought to assess the impact of co-ordinated multidisciplinary care in primary care, represented by the delivery of formal care planning by primary care teams or shared across primary-secondary teams, on outcomes in stroke, relative to usual care. Methods A Systematic review of Medline, EMBASE, CINAHL (all 1990–2006), Cochrane Library (Issue 1 2006), and grey literature from web based searching of web sites listed in the CCOHA Health Technology Assessment List Analysis used narrative analysis of findings of randomised and non-randomised trials, and observational and qualitative studies of patients with completed stroke in the primary care setting where care planning was undertaken by 1) a multi-disciplinary primary care team or 2) through shared care by primary and secondary providers. Results One thousand and forty-five citations were retrieved. Eighteen papers were included for analysis. Most care planning took part in the context of multidisciplinary team care based in hospitals with outreach to community patients. Mortality rates are not impacted by multidisciplinary care planning. Functional outcomes of the studies were inconsistent. It is uncertain whether the active engagement of GPs and other primary care professionals in the multidisciplinary care planning contributed to the outcomes in the studies showing a positive effect. There may be process benefits from multidisciplinary care planning that includes primary care professionals and GPs. Few studies actually described the tasks and roles GPs fulfilled and whether this matched what was presumed to be provided. Conclusion While multidisciplinary care planning may not unequivocally improve the care of patients with completed stroke, there may be process benefits such as improved task allocation between providers. Further study on the impact of active GP involvement

  16. Study protocol: cross-national comparative case study of recovery-focused mental health care planning and coordination (COCAPP).

    PubMed

    Simpson, Alan; Hannigan, Ben; Coffey, Michael; Jones, Aled; Barlow, Sally; Cohen, Rachel; Všetečková, Jitka; Faulkner, Alison; Haddad, Mark

    2015-07-03

    The collaborative care planning study (COCAPP) is a cross-national comparative study of care planning and coordination in community mental healthcare settings. The context and delivery of mental health care is diverging between the countries of England and Wales whilst retaining points of common interest, hence providing a rich geographical comparison for research. Across England the key vehicle for the provision of recovery-focused, personalised, collaborative mental health care is the care programme approach (CPA). The CPA is a form of case management introduced in England in 1991, then revised in 2008. In Wales the CPA was introduced in 2003 but has now been superseded by The Mental Health (Care Co-ordination and Care and Treatment Planning) (CTP) Regulations (Mental Health Measure), a new statutory framework. In both countries, the CPA/CTP requires providers to: comprehensively assess health/social care needs and risks; develop a written care plan (which may incorporate risk assessments, crisis and contingency plans, advanced directives, relapse prevention plans, etc.) in collaboration with the service user and carer(s); allocate a care coordinator; and regularly review care. The overarching aim of this study is to identify and describe the factors that ensure CPA/CTP care planning and coordination is personalised, recovery-focused and conducted collaboratively. COCAPP will employ a concurrent transformative mixed methods approach with embedded case studies. Phase 1 (Macro-level) will consider the national context through a meta-narrative mapping (MNM) review of national policies and the relevant research literature. Phase 2 (Meso-level and Micro-level) will include in-depth micro-level case studies of everyday 'frontline' practice and experience with detailed qualitative data from interviews and reviews of individual care plans. This will be nested within larger meso-level survey datasets, senior-level interviews and policy reviews in order to provide

  17. Advanced Education and Technology Business Plan, 2010-13

    ERIC Educational Resources Information Center

    Alberta Advanced Education and Technology, 2010

    2010-01-01

    This paper presents the business plan of the Ministry of Advanced Education and Technology for 2010 to 2013. Advanced Education and Technology supports the advanced learning system by providing funding for advanced learning providers, coordinating and approving programs of study at public institutions, licensing and approving programs at private…

  18. What explains racial differences in the use of advance directives and attitudes toward hospice care?

    PubMed

    Johnson, Kimberly S; Kuchibhatla, Maragatha; Tulsky, James A

    2008-10-01

    Cultural beliefs and values are thought to account for differences between African Americans and whites in the use of advance directives and beliefs about hospice care, but few data clarify which beliefs and values explain these differences. Two hundred five adults aged 65 and older who received primary care in the Duke University Health System were surveyed. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs About Dying and Advance Care Planning. African Americans were less likely than white subjects to have completed an advance directive (35.5% vs 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system. In multivariate analyses, none of these factors alone completely explained racial differences in possession of an advance directive or beliefs about hospice care, but when all of these factors were combined, race was no longer a significant predictor of either of the two outcomes. These findings suggest that ethnicity is a marker of common cultural beliefs and values that, in combination, influence decision-making at the end of life. This study has implications for the design of healthcare delivery models and programs that provide culturally sensitive end-of-life care to a growing population of ethnically diverse older adults.

  19. 14 CFR 151.119 - Advance planning proposals: Procedures; funding.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 3 2010-01-01 2010-01-01 false Advance planning proposals: Procedures; funding. 151.119 Section 151.119 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED) AIRPORTS FEDERAL AID TO AIRPORTS Rules and Procedures for Advance Planning and...

  20. 14 CFR 151.117 - Advance planning proposals: Procedures; application.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 3 2013-01-01 2013-01-01 false Advance planning proposals: Procedures; application. 151.117 Section 151.117 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED) AIRPORTS FEDERAL AID TO AIRPORTS Rules and Procedures for Advance Planning and...

  1. 14 CFR 151.117 - Advance planning proposals: Procedures; application.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 3 2012-01-01 2012-01-01 false Advance planning proposals: Procedures; application. 151.117 Section 151.117 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED) AIRPORTS FEDERAL AID TO AIRPORTS Rules and Procedures for Advance Planning and...

  2. 14 CFR 151.117 - Advance planning proposals: Procedures; application.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 3 2014-01-01 2014-01-01 false Advance planning proposals: Procedures; application. 151.117 Section 151.117 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION (CONTINUED) AIRPORTS FEDERAL AID TO AIRPORTS Rules and Procedures for Advance Planning and...

  3. Advancing the state of the art in healthcare strategic planning.

    PubMed

    Zuckerman, Alan M

    2006-01-01

    A recent survey of the state of strategic planning among healthcare organizations indicates that planners and executives believe that healthcare strategic planning practices are effective and provide the appropriate focus and direction for their organizations. When compared to strategic planning practices employed outside of the healthcare field, however, most healthcare strategic planning processes have not evolved to the more advanced, state-of-the-art levels of planning being used successfully outside of healthcare. While organizations that operate in stable markets may be able to survive using basic strategic planning practices, the volatile healthcare market demands that providers be nimble competitors with advanced, ongoing planning processes that drive growth and organizational effectiveness. What should healthcare organizations do to increase the rigor and sophistication of their strategic planning practices? This article identifies ten current healthcare strategic planning best practices and recommends five additional innovative approaches from pathbreaking companies outside of healthcare that have used advanced strategic planning practices to attain high levels of organizational success.

  4. Change in health care use after coordinated care planning: a quasi-experimental study.

    PubMed

    Bielska, Iwona A; Cimek, Kelly; Guenter, Dale; O'Halloran, Kelly; Nyitray, Chloe; Hunter, Linda; Wodchis, Walter P

    2018-05-31

    We sought to determine whether patients with a coordinated care plan developed using the Health Links model of care in the Hamilton Niagara Haldimand Brant Local Health Integration Network differed in their use of health care (no. of emergency department visits, inpatient admissions, length of inpatient stay) when compared with a matched control group of patients with no care plans. We performed a propensity score-matched study of 12 months pre- and 12 months post-health care use. Patients who had a coordinated care plan that started between 2013 and 2015 were propensity score matched to patients in a control group. Patient information was obtained from Client Health and Related Information System, National Ambulatory Care Reporting System and Discharge Abstract Database. Differences in health care use pre- and post-index date were compared using the Wilcoxon signed-rank test. A negative binomial regression model was fit for each health care use outcome at 6 and 12 months post-index date. Six hundred coordinated care plan enrollees and 25 449 potential control patients were included in the matching algorithm, which resulted in 548 matched pairs (91.3%). Both groups showed decreases in health care use post-index date. Matched care plan enrollees had significantly fewer emergency department visits at 6 (incidence rate ratio [IRR] 0.81, 95% confidence interval [CI] 0.72-0.91, p < 0.01) and 12 months post-index date (IRR 0.88, 95% CI 0.79-0.99, p < 0.05) compared with the matched controls. Other use parameters were not significantly different between care plan enrollees and the control group. Care plan enrollees show a decrease in the number of times they visit emergency departments, which may be attributed to integrated and coordinated care planning. This association should be examined to see whether these reductions persist for more than 1 year. Copyright 2018, Joule Inc. or its licensors.

  5. Usage Analysis of a Shared Care Planning System

    PubMed Central

    Warren, Jim; Gu, Yulong; Humphrey, Gayl

    2012-01-01

    We examined the content of electronically mediated communications in a trial of shared care planning (SCP) for long-term condition management. Software supports SCP by sharing patient records and care plans among members of the multidisciplinary care team (with patient access). Our analysis focuses on a three-month period with 73 enrolled patients, 149 provider-assigned tasks, 64 clinical notes and 48 care plans with 162 plan elements. Results show that content of notes entries is often related to task assignment and that nurses are the most active users. Directions for refinement of the SCP technology are indicated, including better integration of notes, tasks and care team notifications, as well as the central role of nurses for design use cases. Broader issues are raised about workforce roles and responsibilities for SCP, integrating patient-provider and provider-provider communications, and the centrality of care plans as the key entity in mediation of the care team. PMID:23304370

  6. System-level planning, coordination, and communication: care of the critically ill and injured during pandemics and disasters: CHEST consensus statement.

    PubMed

    Dichter, Jeffrey R; Kanter, Robert K; Dries, David; Luyckx, Valerie; Lim, Matthew L; Wilgis, John; Anderson, Michael R; Sarani, Babak; Hupert, Nathaniel; Mutter, Ryan; Devereaux, Asha V; Christian, Michael D; Kissoon, Niranjan

    2014-10-01

    System-level planning involves uniting hospitals and health systems, local/regional government agencies, emergency medical services, and other health-care entities involved in coordinating and enabling care in a major disaster. We reviewed the literature and sought expert opinions concerning system-level planning and engagement for mass critical care due to disasters or pandemics and offer suggestions for system-planning, coordination, communication, and response. The suggestions in this chapter are important for all of those involved in a pandemic or disaster with multiple critically ill or injured patients, including front-line clinicians, hospital administrators, and public health or government officials. The American College of Chest Physicians (CHEST) consensus statement development process was followed in developing suggestions. Task Force members met in person to develop nine key questions believed to be most relevant for system-planning, coordination, and communication. A systematic literature review was then performed for relevant articles and documents, reports, and other publications reported since 1993. No studies of sufficient quality were identified upon which to make evidence-based recommendations. Therefore, the panel developed expert opinion-based suggestions using a modified Delphi process. Suggestions were developed and grouped according to the following thematic elements: (1) national government support of health-care coalitions/regional health authorities (HC/RHAs), (2) teamwork within HC/RHAs, (3) system-level communication, (4) system-level surge capacity and capability, (5) pediatric patients and special populations, (6) HC/RHAs and networks, (7) models of advanced regional care systems, and (8) the use of simulation for preparedness and planning. System-level planning is essential to provide care for large numbers of critically ill patients because of disaster or pandemic. It also entails a departure from the routine, independent system and

  7. Training Advanced Practice Palliative Care Nurses.

    ERIC Educational Resources Information Center

    Sherman, Deborah Witt

    1999-01-01

    Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)

  8. Are care plans suitable for the management of multiple conditions?

    PubMed Central

    Young, Charlotte E.; Boyle, Frances M.; Mutch, Allyson J.

    2016-01-01

    Background Care plans have been part of the primary care landscape in Australia for almost two decades. With an increasing number of patients presenting with multiple chronic conditions, it is timely to consider whether care plans meet the needs of patients and clinicians. Objectives To review and benchmark existing care plan templates that include recommendations for comorbid conditions, against four key criteria: (i) patient preferences, (ii) setting priorities, (iii) identifying conflicts and synergies between conditions, and (iv) setting dates for reviewing the care plan. Design Document analysis of Australian care plan templates published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care. Results Sixteen templates were reviewed. All of the care plan templates addressed patient preference, but this was not done comprehensively. Only three templates included setting priorities. None assisted in identifying conflicts and synergies between conditions. Fifteen templates included setting a date for reviewing the care plan. Conclusions Care plans are a well-used tool in primary care practice, but their current format perpetuates a single-disease approach to care, which works contrary to their intended purpose. Restructuring care plans to incorporate shared decision-making and attention to patient preferences may assist in shifting the focus back to the patient and their care needs. PMID:29090181

  9. Taking Care of Yourself - Advanced Cancer and Caregivers

    Cancer.gov

    Caring for someone with advanced cancer brings new challenges and concerns. It's important to take care of yourself and reach out for help. Find tips specific to caregivers of patients with advanced cancer.

  10. Integrated Care Planning for Cancer Patients: A Scoping Review

    PubMed Central

    Arthurs, Erin; Gradin, Sharon; MacKinnon, Marnie; Sussman, Jonathan; Kukreti, Vishal

    2017-01-01

    Introduction: There has been a growing emphasis on the use of integrated care plans to deliver cancer care. However little is known about how integrated care plans for cancer patients are developed including featured core activities, facilitators for uptake and indicators for assessing impact. Methods: Given limited consensus around what constitutes an integrated care plan for cancer patients, a scoping review was conducted to explore the components of integrated care plans and contextual factors that influence design and uptake. Results: Five types of integrated care plans based on the stage of cancer care: surgical, systemic, survivorship, palliative and comprehensive (involving a transition between stages) are described in current literature. Breast, esophageal and colorectal cancers were common disease sites. Multi-disciplinary teams, patient needs assessment and transitional planning emerged as key features. Provider buy-in and training alongside informational technology support served as important facilitators for plan uptake. Provider-level measurement was considerably less robust compared to patient and system-level indicators. Conclusions: Similarities in design features, components and facilitators across the various types of integrated care plans indicates opportunities to leverage shared features and enable a management lens that spans the trajectory of a patient’s journey rather than a phase-specific silo approach to care. PMID:29588638

  11. Association Between Health Plan Exit From Medicaid Managed Care and Quality of Care, 2006-2014

    PubMed Central

    Schpero, William L.; Schlesinger, Mark J.; Trivedi, Amal N.

    2017-01-01

    Importance State Medicaid programs have increasingly contracted with insurers to provide medical care services for enrollees (Medicaid managed care plans). Insurers that provide these plans can exit Medicaid programs each year, with unclear effects on quality of care and health care experiences. Objective To determine the frequency and interstate variation of health plan exit from Medicaid managed care and evaluate the relationship between health plan exit and market-level quality. Design, Setting, and Participants Retrospective cohort of all comprehensive Medicaid managed care plans (N = 390) during the interval 2006-2014. Exposures Plan exit, defined as the withdrawal of a managed care plan from a state’s Medicaid program. Main Outcomes and Measures Eight measures from the Healthcare Effectiveness Data and Information Set were used to construct 3 composite indicators of quality (preventive care, chronic disease care management, and maternity care). Four measures from the Consumer Assessment of Healthcare Providers and Systems were combined into a composite indicator of patient experience, reflecting the proportion of beneficiaries rating experiences as 8 or above on a 0-to-10–point scale. Outcome data were available for 248 plans (68% of plans operating prior to 2014, representing 78% of beneficiaries). Results Of the 366 comprehensive Medicaid managed care plans operating prior to 2014, 106 exited Medicaid. These exiting plans enrolled 4 848 310 Medicaid beneficiaries, with a mean of 606 039 beneficiaries affected by plan exits annually. Six states had a mean of greater than 10% of Medicaid managed care recipients enrolled in plans that exited, whereas 10 states experienced no plan exits. Plans that exited from a state’s Medicaid market performed significantly worse prior to exiting than those that remained in terms of preventive care (57.5% vs 60.4%; difference, 2.9% [95% CI, 0.3% to 5.5%]), maternity care (69.7% vs 73.6%; difference, 3.8% [95

  12. Association Between Health Plan Exit From Medicaid Managed Care and Quality of Care, 2006-2014.

    PubMed

    Ndumele, Chima D; Schpero, William L; Schlesinger, Mark J; Trivedi, Amal N

    2017-06-27

    State Medicaid programs have increasingly contracted with insurers to provide medical care services for enrollees (Medicaid managed care plans). Insurers that provide these plans can exit Medicaid programs each year, with unclear effects on quality of care and health care experiences. To determine the frequency and interstate variation of health plan exit from Medicaid managed care and evaluate the relationship between health plan exit and market-level quality. Retrospective cohort of all comprehensive Medicaid managed care plans (N = 390) during the interval 2006-2014. Plan exit, defined as the withdrawal of a managed care plan from a state's Medicaid program. Eight measures from the Healthcare Effectiveness Data and Information Set were used to construct 3 composite indicators of quality (preventive care, chronic disease care management, and maternity care). Four measures from the Consumer Assessment of Healthcare Providers and Systems were combined into a composite indicator of patient experience, reflecting the proportion of beneficiaries rating experiences as 8 or above on a 0-to-10-point scale. Outcome data were available for 248 plans (68% of plans operating prior to 2014, representing 78% of beneficiaries). Of the 366 comprehensive Medicaid managed care plans operating prior to 2014, 106 exited Medicaid. These exiting plans enrolled 4 848 310 Medicaid beneficiaries, with a mean of 606 039 beneficiaries affected by plan exits annually. Six states had a mean of greater than 10% of Medicaid managed care recipients enrolled in plans that exited, whereas 10 states experienced no plan exits. Plans that exited from a state's Medicaid market performed significantly worse prior to exiting than those that remained in terms of preventive care (57.5% vs 60.4%; difference, 2.9% [95% CI, 0.3% to 5.5%]), maternity care (69.7% vs 73.6%; difference, 3.8% [95% CI, 1.7% to 6.0%]), and patient experience (73.5% vs 74.8%; difference, 1.3% [95% CI, 0.6% to 1

  13. The evolving role and care management approaches of safety-net Medicaid managed care plans.

    PubMed

    Gusmano, Michael K; Sparer, Michael S; Brown, Lawrence D; Rowe, Catherine; Gray, Bradford

    2002-12-01

    This article provides new empirical data about the viability and the care management activities of Medicaid managed-care plans sponsored by provider organizations that serve Medicaid and other low-income populations. Using survey and case study methods, we studied these "safety-net" health plans in 1998 and 2000. Although the number of safety-net plans declined over this period, the surviving plans were larger and enjoying greater financial success than the plans we surveyed in 1998. We also found that, based on a partnership with providers, safety-net plans are moving toward more sophisticated efforts to manage the care of their enrollees. Our study suggests that, with supportive state policies, safety-net plans are capable of remaining viable. Contracting with safety-net plans may not be an efficient mechanism for enabling Medicaid recipients to "enter the mainstream of American health care," but it may provide states with an effective way to manage and coordinate the care of Medicaid recipients, while helping to maintain the health care safety-net for the uninsured.

  14. A self-care plan for hospice workers.

    PubMed

    Jones, Sally Hill

    2005-01-01

    Caring for dying patients and their families is a fulfilling, enriching, and meaningful experience. It can also be extremely stressful. Maintaining the balance between the output and input of energy in a caregiver's professional and personal life is an ongoing process. Clinical staff members often formulate plans of care for patients. To prevent worker burnout, hospice caregivers must develop a plan of self-care to balance their own needs with the needs of their patients. The goal of this article is to provide an overview of ways for hospice caregivers to relieve stress and develop an individualized self-care plan within the context of their work.

  15. 14 CFR 151.113 - Advance planning proposals: Sponsor eligibility.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... Engineering Proposals § 151.113 Advance planning proposals: Sponsor eligibility. The sponsor of an advance planning and engineering proposal must be a public agency, as defined in § 151.37(a), and must be legally... agreement; (c) Provide enough funds to pay all estimated proposal costs not borne by the United States; and...

  16. 14 CFR 151.113 - Advance planning proposals: Sponsor eligibility.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... Engineering Proposals § 151.113 Advance planning proposals: Sponsor eligibility. The sponsor of an advance planning and engineering proposal must be a public agency, as defined in § 151.37(a), and must be legally... agreement; (c) Provide enough funds to pay all estimated proposal costs not borne by the United States; and...

  17. 45 CFR 1355.54 - Submittal of advance planning documents.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 45 Public Welfare 4 2010-10-01 2010-10-01 false Submittal of advance planning documents. 1355.54 Section 1355.54 Public Welfare Regulations Relating to Public Welfare (Continued) OFFICE OF HUMAN... § 1355.54 Submittal of advance planning documents. The State title IV-E agency must submit an APD for a...

  18. An advance care plan decision support video before major surgery: a patient- and family-centred approach.

    PubMed

    Isenberg, Sarina R; Crossnohere, Norah L; Patel, Manali I; Conca-Cheng, Alison; Bridges, John F P; Swoboda, Sandy M; Smith, Thomas J; Pawlik, Timothy M; Weiss, Matthew; Volandes, Angelo E; Schuster, Anne; Miller, Judith A; Pastorini, Carolyn; Roter, Debra L; Aslakson, Rebecca A

    2018-06-01

    Video-based advanc care planning (ACP) tools have been studied in varied medical contexts; however, none have been developed for patients undergoing major surgery. Using a patient- and family-centredness approach, our objective was to implement human-centred design (HCD) to develop an ACP decision support video for patients and their family members when preparing for major surgery. The study investigators partnered with surgical patients and their family members, surgeons and other health professionals to design an ACP decision support video using key HCD principles. Adapting Maguire's HCD stages from computer science to the surgical context, while also incorporating Elwyn et al 's specifications for patient-oriented decision support tool development, we used a six-stage HCD process to develop the video: (1) plan HCD process; (2) specify where video will be used; (3) specify user and organisational requirements; (4) produce and test prototypes; (5) carry out user-based assessment; (6) field test with end users. Over 450 stakeholders were engaged in the development process contributing to setting objectives, applying for funding, providing feedback on the storyboard and iterations of the decision tool video. Throughout the HCD process, stakeholders' opinions were compiled and conflicting approaches negotiated resulting in a tool that addressed stakeholders' concerns. Our patient- and family-centred approach using HCD facilitated discussion and the ability to elicit and balance sometimes competing viewpoints. The early engagement of users and stakeholders throughout the development process may help to ensure tools address the stated needs of these individuals. NCT02489799. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  19. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences.

    PubMed

    Smith, Alexander K; McCarthy, Ellen P; Paulk, Elizabeth; Balboni, Tracy A; Maciejewski, Paul K; Block, Susan D; Prigerson, Holly G

    2008-09-01

    Despite well-documented racial and ethnic differences in advance care planning (ACP), we know little about why these differences exist. This study tested proposed mediators of racial/ethnic differences in ACP. We studied 312 non-Hispanic white, 83 non-Hispanic black, and 73 Hispanic patients with advanced cancer in the Coping with Cancer study, a federally funded multisite prospective cohort study designed to examine racial/ethnic disparities in ACP and end-of-life care. We assessed the impact of terminal illness acknowledgment, religiousness, and treatment preferences on racial/ethnic differences in ACP. Compared with white patients, black and Hispanic patients were less likely to have an ACP (white patients, 80%; black patients, 47%; Hispanic patients, 47%) and more likely to want life-prolonging care even if he or she had only a few days left to live (white patients, 14%; black patients, 45%; Hispanic patients, 34%) and to consider religion very important (white patients, 44%; black patients, 88%; Hispanic patients, 73%; all P < .001, comparison of black or Hispanic patients with white patients). Hispanic patients were less likely and black patients marginally less likely to acknowledge their terminally ill status (white patients, 39% v Hispanic patients, 11%; P < .001; white v black patients, 27%; P = .05). Racial/ethnic differences in ACP persisted after adjustment for clinical and demographic factors, terminal illness acknowledgment, religiousness, and treatment preferences (has ACP, black v white patients, adjusted relative risk, 0.64 [95% CI, 0.49 to 0.83]; Hispanic v white patients, 0.65 [95% CI, 0.47 to 0.89]). Although black and Hispanic patients are less likely to consider themselves terminally ill and more likely to want intensive treatment, these factors did not explain observed disparities in ACP.

  20. 42 CFR 441.155 - Individual plan of care.

    Code of Federal Regulations, 2014 CFR

    2014-10-01

    ... 42 Public Health 4 2014-10-01 2014-10-01 false Individual plan of care. 441.155 Section 441.155 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES... Individual plan of care. (a) “Individual plan of care” means a written plan developed for each beneficiary in...

  1. 42 CFR 441.155 - Individual plan of care.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... 42 Public Health 4 2013-10-01 2013-10-01 false Individual plan of care. 441.155 Section 441.155 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES... Individual plan of care. (a) “Individual plan of care” means a written plan developed for each beneficiary in...

  2. 42 CFR 441.155 - Individual plan of care.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... 42 Public Health 4 2012-10-01 2012-10-01 false Individual plan of care. 441.155 Section 441.155 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES... Individual plan of care. (a) “Individual plan of care” means a written plan developed for each beneficiary in...

  3. 42 CFR 441.155 - Individual plan of care.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 4 2011-10-01 2011-10-01 false Individual plan of care. 441.155 Section 441.155 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES... Individual plan of care. (a) “Individual plan of care” means a written plan developed for each recipient in...

  4. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices.

    PubMed

    Jabbarian, Lea J; Zwakman, Marieke; van der Heide, Agnes; Kars, Marijke C; Janssen, Daisy J A; van Delden, Johannes J; Rietjens, Judith A C; Korfage, Ida J

    2018-03-01

    Advance care planning (ACP) supports patients in identifying and documenting their preferences and timely discussing them with their relatives and healthcare professionals (HCPs). Since the British Thoracic Society encourages ACP in chronic respiratory disease, the objective was to systematically review ACP practice in chronic respiratory disease, attitudes of patients and HCPs and barriers and facilitators related to engagement in ACP. We systematically searched 12 electronic databases for empirical studies on ACP in adults with chronic respiratory diseases. Identified studies underwent full review and data extraction. Of 2509 studies, 21 were eligible: 10 were quantitative studies. Although a majority of patients was interested in engaging in ACP, ACP was rarely carried out. Many HCPs acknowledged the importance of ACP but were hesitant to initiate it. Barriers to engagement in ACP were the complex disease course of patients with chronic respiratory diseases, HCPs' concern of taking away patients' hopes and lack of continuity of care. The identification of trigger points and training of HCPs on how to communicate sensitive topics were identified as facilitators to engagement in ACP. In conclusion, ACP is surprisingly uncommon in chronic respiratory disease, possibly due to the complex disease course of chronic respiratory diseases and ambivalence of both patients and HCPs to engage in ACP. Providing patients with information about their disease can help meeting their needs. Additionally, support of HCPs through identification of trigger points, training and system-related changes can facilitate engagement in ACP. CRD42016039787. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  5. Evaluating Primary Care Providers' Views on Survivorship Care Plans Generated by an Electronic Health Record System

    PubMed Central

    Donohue, SarahMaria; Sesto, Mary E.; Hahn, David L.; Buhr, Kevin A.; Jacobs, Elizabeth A.; Sosman, James M.; Andreason, Molly J.; Wiegmann, Douglas A.; Tevaarwerk, Amye J.

    2015-01-01

    Purpose: Survivorship care plans for cancer survivors may facilitate provider-to-provider communication. Primary care provider (PCP) perspectives on care plan provision and use are limited, especially when care plans are generated by an electronic health record (EHR) system. We sought to examine PCPs' perspectives regarding EHR-generated care plans. Methods: PCPs (N = 160) who were members of the Wisconsin Research and Education Network listserv received a sample 10-page plan (WREN cohort). PCPs (n = 81) who had or were currently seeing survivors enrolled onto one of our survivorship clinical trials received a copy of the survivor's personalized care plan (University of Wisconsin [UW] cohort). Both cohorts received a survey after reviewing the plan. All plans were generated within an EHR. Results: Forty-six and 26 PCPs participated in the WREN and UW cohorts, respectively. PCPs regarded EHR-generated plans as useful in coordinating care (88%), understanding treatments (94%), understanding treatment adverse effects (89%), and supporting clinical decisions (82%). Few felt using EHR-generated plans would disrupt clinic workflow (14%) or take too much time (11%). Most (89%) preferred receiving the plan via EHR. PCPs reported consistent provision (81%) and standard location in the medical record (89%) as key factors facilitating their use of survivorship care plans. Important facilitators of care plan use included a more abbreviated plan, ideally one to three pages (32%), and/or a plan specifically tailored to PCP use (57%). Conclusion: Plans were viewed as useful for coordinating care and making clinical decisions. However, PCPs desired shorter, clinician-oriented plans, accessible within an EHR and delivered and located in a standardized manner. PMID:25804989

  6. Identifying opportunities to advance practice at a large academic medical center using the ASHP Ambulatory Care Self-Assessment Tool.

    PubMed

    Martirosov, Amber Lanae; Michael, Angela; McCarty, Melissa; Bacon, Opal; DiLodovico, John R; Jantz, Arin; Kostoff, Diana; MacDonald, Nancy C; Mikulandric, Nancy; Neme, Klodiana; Sulejmani, Nimisha; Summers, Bryant B

    2018-05-29

    The use of the ASHP Ambulatory Care Self-Assessment Tool to advance pharmacy practice at 8 ambulatory care clinics of a large academic medical center is described. The ASHP Ambulatory Care Self-Assessment Tool was developed to help ambulatory care pharmacists assess how their current practices align with the ASHP Practice Advancement Initiative. The Henry Ford Hospital Ambulatory Care Advisory Group (ACAG) opted to use the "Practitioner Track" sections of the tool to assess pharmacy practices within each of 8 ambulatory care clinics individually. The responses to self-assessment items were then compiled and discussed by ACAG members. The group identified best practices and ways to implement action items to advance ambulatory care practice throughout the institution. Three recommended action items were common to most clinics: (1) identify and evaluate solutions to deliver financially viable services, (2) develop technology to improve patient care, and (3) optimize the role of pharmacy technicians and support personnel. The ACAG leadership met with pharmacy administrators to discuss how action items that were both feasible and deemed likely to have a medium-to-high impact aligned with departmental goals and used this information to develop an ambulatory care strategic plan. This process informed and enabled initiatives to advance ambulatory care pharmacy practice within the system. The ASHP Ambulatory Care Self-Assessment Tool was useful in identifying opportunities for practice advancement in a large academic medical center. Copyright © 2018 by the American Society of Health-System Pharmacists, Inc. All rights reserved.

  7. Is it time for a comprehensive approach in older home care clients' care planning in Finland?

    PubMed

    Turjamaa, Riitta; Hartikainen, Sirpa; Kangasniemi, Mari; Pietilä, Anna-Maija

    2015-06-01

    Home-care services require access to high quality information. Apart from the provision of right-time organised planning of care and to document information about clients' needs, in home care, the care planning is intended to facilitate continuity and individual nursing through nursing documentation of the assessment of the client. The aim was to describe the contents of older (+75 years) home-care clients' electronic care and service plans and to evaluate how the clients' resources have been taken into account. The data were collected from the care and service plans (n = 437) of home-care services during July 2010. The data were analysed by quantitative methods and by thematic content analysis. Based on the analysis, medication was the most reported component in all plans (92.7%); other commonly reported components were self-care (85.4%) and coping (78.0%). Components within respiratory, follow-up treatment, life cycle and health behaviour were forgotten. Most of the care and service plans were designed from the home-care professionals' point of view but the plans lacked the perspective of older clients. To be able to promote older home clients' ability to live at home, home-care planning needs to be individually designed and must take into account clients' needs and their perspectives regarding meaningful activities and social relationships. In addition, there is a need to develop a more comprehensive care planning system, based on the clients' individual needs and standards of care planning. © 2014 Nordic College of Caring Science.

  8. A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: perceptions of palliative care planning coordinators and other health professionals in the IDEAL study.

    PubMed

    Luckett, Tim; Chenoweth, Lynnette; Phillips, Jane; Brooks, Deborah; Cook, Janet; Mitchell, Geoffrey; Pond, Dimity; Davidson, Patricia M; Beattie, Elizabeth; Luscombe, Georgina; Goodall, Stephen; Fischer, Thomas; Agar, Meera

    2017-10-01

    Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation. Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach. Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback. The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.

  9. Promoting advance planning for health care and research among older adults: A randomized controlled trial

    PubMed Central

    2012-01-01

    Background Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/Design Dyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the

  10. Managed Care Plans: Getting Good Care for Your Child

    MedlinePlus

    ... AAP Find a Pediatrician Family Life Medical Home Health Insurance Pediatric Specialists Family Dynamics Media Work & Play Getting ... Your Community Healthy Children > Family Life > Medical Home > Health Insurance > Managed Care Plans: Getting Good Care for Your ...

  11. Advanced Education and Technology Business Plan, 2007-10

    ERIC Educational Resources Information Center

    Alberta Enterprise and Advanced Education, 2007

    2007-01-01

    The Government of Alberta Strategic Business Plan addresses significant opportunities and challenges facing Alberta over the next three years and positions Alberta to make the most of its economic, social and natural advantages. It is a plan to strategically manage growth and plan for a sustainable and secure future. Advanced Education and…

  12. Primary care managers' perceptions of their capability in providing care planning to patients with complex needs.

    PubMed

    Larsson, Lena Gunvor; Bäck-Pettersson, Siv; Kylén, Sven; Marklund, Bertil; Carlström, Eric

    2017-01-01

    The aim of this study was to investigate primary care managers' perceptions of their capability in providing care planning to patients with complex needs. Care planning is defined as a process where the patient, family and health professionals engage in dialogue about the patient's care needs and plan care interventions together. Semi-structured interviews with 18 primary care managers in western Sweden were conducted using Westrin's theoretical cooperation model. Data were analysed using a qualitative deductive method. Results reveal that the managers' approach to care planning was dominated by non-cooperation and separation. The managers were permeated by uncertainty about the meaning of the task of care planning as such. They did not seem to be familiar with the national legislation stipulating that every healthcare provider must meet patients' need for care interventions and participate in the care planning. To accomplish care planning, the process needs to cross - and overcome - both professional and organisational boundaries. There is also a need for incentives to develop working methods that promote local cooperation in order to facilitate optimal care for patients with complex needs. Copyright © 2016. Published by Elsevier Ireland Ltd.

  13. Implementing an advance care planning program in German nursing homes: results of an inter-regionally controlled intervention trial.

    PubMed

    In der Schmitten, Jürgen; Lex, Katharina; Mellert, Christine; Rothärmel, Sonja; Wegscheider, Karl; Marckmann, Georg

    2014-01-24

    Advance Care Planning (ACP) is a systematic approach to ensure that effective advance directives (ADs) are developed and respected. We studied the effects of implementing a regional ACP program in Germany. In a prospective, inter-regionally controlled trial focusing on nursing homes (n/hs), we compared the number, relevance and validity of new ADs completed in the intervention region versus the control region. Intervention n/h residents and their families were offered professional facilitation including standardized documentation. Data from 136 residents of three intervention n/hs were compared with data from 439 residents of 10 control n/hs over a study period of 16.5 months. In the intervention region, 49 (36.0%) participating residents completed a new AD over the period of the study, compared to 18 (4.1%) in the control region; these ADs included 30 ADs by proxy in the intervention region versus 10 in the control region. Proxies were designated in 94.7% versus 50.0% of cases, the AD was signed by a physician in 93.9% versus 16.7%, and an emergency order was included in 98.0% versus 44.4%. Resuscitation status was addressed in 95.9% versus 38.9% of cases (p<0.01 for all of the differences mentioned above). In the intervention region, new ADs were preceded by an average of 2.5 facilitated conversations (range, 2–5) with a mean total duration of 100 minutes (range, 60–240 minutes). The implementation of an ACP program in German nursing homes led, much more frequently than previously reported, to the creation of advance directives with potential relevance to medical decision-making. Future research should assess the effect of such programs on clinical and structural outcomes.

  14. Standardised care plans for in hospital stroke care improve documentation of health care assessments.

    PubMed

    Pöder, Ulrika; Dahm, Marie Fogelberg; Karlsson, Nina; Wadensten, Barbro

    2015-10-01

    To compare stroke unit staff members' documentation of care in line with evidence-based guidelines pre- and postimplementation of a multi-professional, evidence-based standardised care plan for stroke care in the electronic health record. Rapid and effective measures for patients with stroke or suspected stroke can limit the extent of damage; it is imperative that patients be observed, assessed and treated in accordance with evidence-based practice in hospital. Quantitative, comparative. Structured retrospective health record reviews were made prior to (n 60) and one and a half years after implementation (n 60) of a multi-professional evidence-based standardised care plan with a quality standard for stroke care in the electronic health record. Significant improvements were found in documentation of assessed vital signs, except for body temperature, Day 1 post compared with preimplementation. Documentation frequency regarding body temperature Day 1 and blood pressure and pulse Day 2 decreased post compared with preimplementation. Improvements were also detected in documented observations of patients' micturition capacity, swallowing capacity and mouth status and the proportion of physiotherapist-documented aid assessments. Observations of blood glucose, mobilisation ability and speech and communication ability were unchanged. An evidence-based standardised care plan in an electronic health record assists staff in improving documentation of health status assessments during the first days after a stroke diagnosis. Use of a standardised care plan seems to have the potential to help staff adhere to evidence-based patient care and, thereby, to increase patient safety. © 2015 John Wiley & Sons Ltd.

  15. End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented.

    PubMed

    Jaramillo, Sylvia; Hui, David

    2016-04-01

    There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  16. The Con Edison Emergency Child Care Plan for Management Employees: Summary Plan Description.

    ERIC Educational Resources Information Center

    Consolidated Edison Co., Brooklyn, NY.

    This summary plan description offers guidelines for participation in a pilot program that provides short-term emergency care for children of Con Edison managers who are under 13 years old. The plan offers professional, in-home child care that can be used when usual arrangements have collapsed. The summary plan description addresses the following…

  17. Consensus statement: Palliative and supportive care in advanced heart failure.

    PubMed

    Goodlin, Sarah J; Hauptman, Paul J; Arnold, Robert; Grady, Kathleen; Hershberger, Ray E; Kutner, Jean; Masoudi, Frederick; Spertus, John; Dracup, Kathleen; Cleary, James F; Medak, Ruth; Crispell, Kathy; Piña, Ileana; Stuart, Brad; Whitney, Christy; Rector, Thomas; Teno, Joan; Renlund, Dale G

    2004-06-01

    A consensus conference was convened to define the current state and important gaps in knowledge and needed research on "Palliative and Supportive Care in Advanced Heart Failure." Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews. The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include: (1) although supportive care should be integrated throughout treatment of patients with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs; (2) prognostication in advanced HF is difficult and data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF; (3) research is needed to identify which interventions improve quality of life and best achieve the outcomes desired by patients and family members; (4) care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically; and (5) more research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient's preferences into the goals of care.

  18. Advanced Launch System advanced development oxidizer turbopump program: Technical implementation plan

    NASA Technical Reports Server (NTRS)

    Ferlita, F.

    1989-01-01

    The Advanced Launch Systems (ALS) Advanced Development Oxidizer Turbopump Program has designed, fabricated and demonstrated a low cost, highly reliable oxidizer turbopump for the Space Transportation Engine that minimizes the recurring cost for the ALS engines. Pratt and Whitney's (P and W's) plan for integrating the analyses, testing, fabrication, and other program efforts is addressed. This plan offers a comprehensive description of the total effort required to design, fabricate, and test the ALS oxidizer turbopump. The proposed ALS oxidizer turbopump reduces turbopump costs over current designs by taking advantage of design simplicity and state-of-the-art materials and producibility features without compromising system reliability. This is accomplished by selecting turbopump operating conditions that are within known successful operating regions and by using proven manufacturing techniques.

  19. 42 CFR 456.80 - Individual written plan of care.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 4 2010-10-01 2010-10-01 false Individual written plan of care. 456.80 Section 456... (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Hospitals Plan of Care § 456.80 Individual written plan of care. (a) Before admission to a hospital or before authorization for...

  20. 42 CFR 460.106 - Plan of care.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... Services § 460.106 Plan of care. (a) Basic requirement. The interdisciplinary team must promptly develop a... outcomes to be achieved. (c) Implementation of the plan of care. (1) The team must implement, coordinate...) The team must continuously monitor the participant's health and psychosocial status, as well as the...

  1. 42 CFR 460.106 - Plan of care.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... Services § 460.106 Plan of care. (a) Basic requirement. The interdisciplinary team must promptly develop a... outcomes to be achieved. (c) Implementation of the plan of care. (1) The team must implement, coordinate...) The team must continuously monitor the participant's health and psychosocial status, as well as the...

  2. Prevalence and predictors of advance directives in Australia.

    PubMed

    White, B; Tilse, C; Wilson, J; Rosenman, L; Strub, T; Feeney, R; Silvester, W

    2014-10-01

    Advance care planning is regarded as integral to better patient outcomes, yet little is known about the prevalence of advance directives (AD) in Australia. To determine the prevalence of AD in the Australian population. A national telephone survey about estate and advance planning. Sample was stratified by age (18-45 and >45 years) and quota sampling occurred based on population size in each state and territory. Fourteen per cent of the Australian population has an AD. There is state variation with people from South Australia and Queensland more likely to have an AD than people from other states. Will making and particularly completion of a financial enduring power of attorney are associated with higher rates of AD completion. Standard demographic variables were of limited use in predicting whether a person would have an AD. Despite efforts to improve uptake of advance care planning (including AD), barriers remain. One likely trigger for completing an AD and advance care planning is undertaking a wider future planning process (e.g. making a will or financial enduring power of attorney). This presents opportunities to increase advance care planning, but steps are needed to ensure that planning, which occurs outside the health system, is sufficiently informed and supported by health information so that it is useful in the clinical setting. Variations by state could also suggest that redesign of regulatory frameworks (such as a user-friendly and well-publicised form backed by statute) may help improve uptake of AD. © 2014 The Authors; Internal Medicine Journal © 2014 Royal Australasian College of Physicians.

  3. Fidelity to a behavioral intervention to improve goals of care decisions for nursing home residents with advanced dementia.

    PubMed

    Hanson, Laura C; Song, Mi-Kyung; Zimmerman, Sheryl; Gilliam, Robin; Rosemond, Cherie; Chisholm, Latarsha; Lin, Feng-Chang

    2016-12-01

    Ensuring fidelity to a behavioral intervention implemented in nursing homes requires awareness of the unique considerations of this setting for research. The purpose of this article is to describe the goals of care cluster-randomized trial and the methods used to monitor and promote fidelity to a goals of care decision aid intervention delivered in nursing homes. The cluster randomized trial tested whether a decision aid for goals of care in advanced dementia could improve (1) the quality of communication and decision-making, (2) the quality of palliative care, and (3) the quality of dying for nursing home residents with advanced dementia. In 11 intervention nursing homes, family decision-makers for residents with advanced dementia received a two-component intervention: viewing a video decision aid about goals of care choices and then participating in a structured decision-making discussion with the nursing home care plan team, ideally within 3 months after the decision aid was viewed. Following guidelines from the National Institutes of Health Behavior Change Consortium, fidelity was assessed in study design, in nursing home staff training for intervention implementation, and in monitoring and receipt of the intervention. We also monitored the content and timing of goals of care discussions. Investigators enrolled 151 family decision-maker/resident dyads in intervention sites; of those, 136 (90%) received both components of the intervention, and 92%-99% of discussions addressed each of four recommended content areas-health status, goals of care, choice of a goal, and treatment planning. A total of 94 (69%) of the discussions between family decision-makers and the nursing home care team were completed within 3 months. The methods we used for intervention fidelity allowed nursing home staff to implement a goals of care decision aid intervention for advanced dementia. Key supports for implementation included design features that aligned with nursing home practice

  4. Pathways From Religion to Advance Care Planning: Beliefs About Control Over Length of Life and End-of-Life Values

    PubMed Central

    Garrido, Melissa M.

    2013-01-01

    Purpose of the Study: To evaluate the extent to which religious affiliation and self-identified religious importance affect advance care planning (ACP) via beliefs about control over life length and end-of-life values. Design and Methods: Three hundred and five adults aged 55 and older from diverse racial and socioeconomic groups seeking outpatient care in New Jersey were surveyed. Measures included discussion of end-of-life preferences; living will (LW) completion; durable power of attorney for healthcare (DPAHC) appointment; religious affiliation; importance of religion; and beliefs about who/what controls life length, end-of-life values, health status, and sociodemographics. Results: Of the sample, 68.9% had an informal discussion and 46.2% both discussed their preferences and did formal ACP (LW and/or DPAHC). Conservative Protestants and those placing great importance on religion/spirituality had a lower likelihood of ACP. These associations were largely accounted for by beliefs about God’s controlling life length and values for using all available treatments. Implications: Beliefs and values about control account for relationships between religiosity and ACP. Beliefs and some values differ by religious affiliation. As such, congregations may be one nonclinical setting in which ACP discussions could be held, as individuals with similar attitudes toward the end of life could discuss their treatment preferences with those who share their views. PMID:23161430

  5. Leveraging standards to support patient-centric interdisciplinary plans of care.

    PubMed

    Dykes, Patricia C; DaDamio, Rebecca R; Goldsmith, Denise; Kim, Hyeon-eui; Ohashi, Kumiko; Saba, Virginia K

    2011-01-01

    As health care systems and providers move towards meaningful use of electronic health records, the once distant vision of collaborative patient-centric, interdisciplinary plans of care, generated and updated across organizations and levels of care, may soon become a reality. Effective care planning is included in the proposed Stages 2-3 Meaningful Use quality measures. To facilitate interoperability, standardization of plan of care messaging, content, information and terminology models are needed. This degree of standardization requires local and national coordination. The purpose of this paper is to review some existing standards that may be leveraged to support development of interdisciplinary patient-centric plans of care. Standards are then applied to a use case to demonstrate one method for achieving patient-centric and interoperable interdisciplinary plan of care documentation. Our pilot work suggests that existing standards provide a foundation for adoption and implementation of patient-centric plans of care that are consistent with federal requirements.

  6. Relatives’ level of satisfaction with advanced cancer care in Greenland – a mixed methods study

    PubMed Central

    Augustussen, Mikaela; Hounsgaard, Lise; Pedersen, Michael Lynge; Sjøgren, Per; Timm, Helle

    2017-01-01

    ABSTRACT Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid’s Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives’ level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives’ level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative’s current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives’ needs is essential to develop

  7. District of Columbia Early Care and Education Strategic Plan.

    ERIC Educational Resources Information Center

    District of Columbia Univ., Washington, DC. Center for Applied Research and Urban Policy.

    This report details the early care and education strategic plan for the District of Columbia. Following an executive summary, the report provides the rationale for developing an early care and education strategic plan and describes the process used to develop the plan. The top 10 early care and education issues in the district are then delineated…

  8. Development and implementation of an interdisciplinary plan of care.

    PubMed

    Lewis, Cynthia; Hoffmann, Mary Lou; Gard, Angela; Coons, Jacqueline; Bichinich, Pat; Euclid, Jeff

    2005-01-01

    In January 2002 Aurora Health Care Metro Region chartered an interdisciplinary team to develop a process and structure for patient-centered interdisciplinary care planning. This unique endeavor created a process that includes the patient, family, and all clinical disciplines involved in planning and providing care to patients from system point of entry throughout the entire acute care episode. The interdisciplinary plan of care (IPOC) demonstrates the integration of prioritized problems, outcomes, and measurement toward goal attainment. This article focuses on the journey of this team to the successful implementation of an IPOC.

  9. Knowledge enabled plan of care and documentation prototype.

    PubMed

    DaDamio, Rebecca; Gugerty, Brian; Kennedy, Rosemary

    2006-01-01

    There exist significant challenges in integrating the plan of care into documentation and point of care operational processes. A plan of care is often a static artifact that meets regulatory standards with limited influence on supporting goal-directed care delivery processes. Although this prototype is applicable to many clinical disciplines, we will highlight nursing processes in demonstrating a knowledge-driven computerized solution that fully integrates the plan of care within documentation. The knowledge-driven solution reflects evidenced-based practice; is an effective tool for managing problems, orders/interventions, and the patient's progress towards expected outcomes; meets regulatory standards; and drives quality and process improvement. The knowledge infrastructure consists of fully represented terminology, structured clinical expressions utilizing the controlled terminology and clinical knowledge representing evidence-based practice.

  10. Numerical Correlation of Levator Advancement in Preoperative Planning.

    PubMed

    Makeeva, Valeria; Collawn, Sherry S; Pierce, Evelina N; Mousa, Mina S; Yang, Jennifer H; Davison, Peter N; Jospitre, Elodie C

    2017-06-01

    Several procedures have been proposed for the treatment of eyelid ptosis, and both levator advancement and levator plication are widely used to shorten the levator palpebrae superioris. The purpose of this study was to quantify perioperative lid measurements in patients undergoing bilateral levator aponeurosis advancements to aid in preoperative planning. Between July 2014 and June 2016, the authors performed a retrospective analysis of all bilateral upper eyelid levator advancement procedures for ptosis performed by the senior surgeon. There are a total of 21 patients (6 men and 15 women) with a mean age of 63 years (range, 48-79 years). The average time at follow-up was 5.3 months, with a range of 1 to 26 months. In this retrospective study, we collected data on presurgical measurements including marginal reflex distance 1 (MRD1), surgical technique used (symmetrical/asymmetrical levator advancement) with millimeters of advancement used, and postsurgical measurements. We found that on average, an advancement of 4 mm led to an improvement in MRD1 of 2.26 mm (n = 14), and advancement of 5 mm led to an improvement in MRD1 of 2.74 mm (n = 15). Patients also reported improvements in their quality of life. Our results may be used to guide clinicians in preoperative planning.

  11. Care for the Health Care Provider.

    PubMed

    Kunin, Sharon Brown; Kanze, David Mitchell

    2016-03-01

    Pretravel care for the health care provider begins with an inventory, including the destination, length of stay, logistical arrangements, type of lodging, food and water supply, team members, personal medical needs, and the needs of the community to be treated. This inventory should be created and processed well in advance of the planned medical excursion. The key thing to remember in one's planning is to be a health care provider during one's global health care travel and not to become a patient oneself. This article will help demonstrate the medical requirements and recommendations for such planning. Copyright © 2016 Elsevier Inc. All rights reserved.

  12. LGBT people's knowledge of and preparedness to discuss end-of-life care planning options.

    PubMed

    Hughes, Mark; Cartwright, Colleen

    2014-09-01

    Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients. © 2014 John Wiley & Sons Ltd.

  13. Design and analysis of advanced flight planning concepts

    NASA Technical Reports Server (NTRS)

    Sorensen, John A.

    1987-01-01

    The objectives of this continuing effort are to develop and evaluate new algorithms and advanced concepts for flight management and flight planning. This includes the minimization of fuel or direct operating costs, the integration of the airborne flight management and ground-based flight planning processes, and the enhancement of future traffic management systems design. Flight management (FMS) concepts are for on-board profile computation and steering of transport aircraft in the vertical plane between a city pair and along a given horizontal path. Flight planning (FPS) concepts are for the pre-flight ground based computation of the three-dimensional reference trajectory that connects the city pair and specifies the horizontal path, fuel load, and weather profiles for initializing the FMS. As part of these objectives, a new computer program called EFPLAN has been developed and utilized to study advanced flight planning concepts. EFPLAN represents an experimental version of an FPS. It has been developed to generate reference flight plans compatible as input to an FMS and to provide various options for flight planning research. This report describes EFPLAN and the associated research conducted in its development.

  14. Implementation strategy for advanced practice nursing in primary health care in Latin America and the Caribbean.

    PubMed

    Oldenburger, David; De Bortoli Cassiani, Silvia Helena; Bryant-Lukosius, Denise; Valaitis, Ruta Kristina; Baumann, Andrea; Pulcini, Joyce; Martin-Misener, Ruth

    2017-06-08

    SYNOPSIS Advanced practice nursing (APN) is a term used to describe a variety of possible nursing roles operating at an advanced level of practice. Historically, APN roles haves evolved informally, out of the need to improve access to health care services for at-risk and disadvantaged populations and for those living in underserved rural and remote communities. To address health needs, especially ones related to primary health care, nurses acquired additional skills through practice experience, and over time they developed an expanded scope of practice. More recently, APN roles have been developed more formally through the establishment of graduate education programs to meet agreed-upon competencies and standards for practice. The introduction of APN roles is expected to advance primary health care throughout Latin America and the Caribbean, where few such roles exist. The purpose of the paper is to outline an implementation strategy to guide and support the introduction of primary health care APN roles in Latin America and the Caribbean. The strategy includes the adaptation of an existing framework, utilization of recent research evidence, and application of knowledge from experts on APN and primary health care. The strategy consists of nine steps. Each step includes a national perspective that focuses on direct country involvement in health workforce planning and development and on implementation. In addition, each step incorporates an international perspective on encouraging countries that have established APN programs and positions to collaborate in health workforce development with nations without advanced practice nursing.

  15. Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study

    PubMed Central

    Llewellyn, Henry; Neerkin, Jane; Thorne, Lewis; Wilson, Elena; Jones, Louise; Sampson, Elizabeth L; Townsley, Emma; Low, Joseph T S

    2018-01-01

    Background Primary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from the disease. Prognoses are poor, cognitive deterioration common and patients have prolonged palliative needs. Advance care planning (ACP) may enable early discussion of future care decisions. Although a core commitment in the UK healthcare strategy, and the shared responsibility of clinical teams, ACP appears uncommon in practice. Evidence around ACP practice in neuro-oncology is limited. Objectives We aimed to elicit key social and structural conditions contributing to the avoidance of ACP in neuro-oncology. Design A cross-sectional qualitative study design was used. Setting One tertiary care hospital in the UK. Participants Fifteen healthcare professionals working in neuro-oncology participated in this study, including neuro-oncologists, neurosurgeons, clinical nurse specialists, allied healthcare professionals and a neurologist. Method Semi-structured interviews were conducted with participants to explore their assumptions and experiences of ACP. Data were analysed thematically using the well-established framework method. Results Participants recognised the importance of ACP but few had ever completed formal ACP documentation. We identified eight key factors, which we suggest comprise three main conditions for avoidance: (1) difficulties being a highly emotive, time-intensive practice requiring the right ‘window of opportunity’ and (2) presence and availability of others; (3) ambiguities in ACP definition, purpose and practice. Combined, these created a ‘culture of shared avoidance’. Conclusion In busy clinical environments, ‘shared responsibility’ is interpreted as ‘others’ responsibility’ laying the basis for a culture of avoidance. To address this, we suggest a ‘generalists and specialists’ model of ACP, wherein healthcare professionals undertake

  16. The Promoting Effective Advance Care for Elders (PEACE) randomized pilot study: theoretical framework and study design.

    PubMed

    Allen, Kyle R; Hazelett, Susan E; Radwany, Steven; Ertle, Denise; Fosnight, Susan M; Moore, Pamela S

    2012-04-01

    Practice guidelines are available for hospice and palliative medicine specialists and geriatricians. However, these guidelines do not adequately address the needs of patients who straddle the 2 specialties: homebound chronically ill patients. The purpose of this article is to describe the theoretical basis for the Promoting Effective Advance Care for Elders (PEACE) randomized pilot study. PEACE is an ongoing 2-group randomized pilot study (n=80) to test an in-home interdisciplinary care management intervention that combines palliative care approaches to symptom management, psychosocial and emotional support, and advance care planning with geriatric medicine approaches to optimizing function and addressing polypharmacy. The population comprises new enrollees into PASSPORT, Ohio's community-based, long-term care Medicaid waiver program. All PASSPORT enrollees have geriatric/palliative care crossover needs because they are nursing home eligible. The intervention is based on Wagner's Chronic Care Model and includes comprehensive interdisciplinary care management for these low-income frail elders with chronic illnesses, uses evidence-based protocols, emphasizes patient activation, and integrates with community-based long-term care and other community agencies. Our model, with its standardized, evidence-based medical and psychosocial intervention protocols, will transport easily to other sites that are interested in optimizing outcomes for community-based, chronically ill older adults. © Mary Ann Liebert, Inc.

  17. Advanced Respite Care: Medically Challenged. Teacher Edition. Respite Care Series.

    ERIC Educational Resources Information Center

    Oklahoma State Dept. of Vocational and Technical Education, Stillwater. Curriculum and Instructional Materials Center.

    This curriculum guide is designed to help teachers to provide advanced-level training for care providers who want to work with individuals who are chronically or terminally ill and require specialized care. The curriculum contains seven units. Each of the instructional units includes some or all of these basic components: performance objectives,…

  18. Perspectives from deductible plan enrollees: plan knowledge and anticipated care-seeking changes.

    PubMed

    Reed, Mary; Benedetti, Nancy; Brand, Richard; Newhouse, Joseph P; Hsu, John

    2009-12-29

    Consumer directed health care proposes that patients will engage as informed consumers of health care services by sharing in more of their medical costs, often through deductibles. We examined knowledge of deductible plan details among new enrollees, as well as anticipated care-seeking changes in response to the deductible. In a large integrated delivery system with a range of deductible-based health plans which varied in services included or exempted from deductible, we conducted a mixed-method, cross-sectional telephone interview study. Among 458 adults newly enrolled in a deductible plan (71% response rate), 51% knew they had a deductible, 26% knew the deductible amount, and 6% knew which medical services were included or exempted from their deductible. After adjusting for respondent characteristics, those with more deductible-applicable services and those with lower self-reported health status were significantly more likely to know they had a deductible. Among those who knew of their deductible, half anticipated that it would cause them to delay or avoid medical care, including avoiding doctor's office visits and medical tests, even services that they believed were medically necessary. Many expressed concern about their costs, anticipating the inability to afford care and expressing the desire to change plans. Early in their experience with a deductible, patients had limited awareness of the deductible and little knowledge of the details. Many who knew of the deductible reported that it would cause them to delay or avoid seeking care and were concerned about their healthcare costs.

  19. 42 CFR 456.380 - Individual written plan of care.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care Facilities Plan of Care § 456.380 Individual written plan of care. (a) Before admission to an ICF or before...) Activities; (v) Therapies; (vi) Social services; (vii) Diet; and (viii) Special procedures designed to meet...

  20. 42 CFR 456.380 - Individual written plan of care.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care Facilities Plan of Care § 456.380 Individual written plan of care. (a) Before admission to an ICF or before...) Activities; (v) Therapies; (vi) Social services; (vii) Diet; and (viii) Special procedures designed to meet...

  1. Application of Transformational Leadership Principles in the Development and Integration of Palliative Care Within an Advanced Heart Failure Program.

    PubMed

    George, Susan; Leasure, A Renee

    2016-01-01

    Heart failure (HF) is a major health problem in United States, and it has reached epidemic proportions. Heart failure is associated with significant morbidity, mortality, and cost. Although the prognosis of HF is worse than many forms of cancer, many patients, families, and clinicians are unaware of the dire prognosis. As the disease progress to advanced HF, patients are faced with many challenges, such as poor quality of life due to worsening symptoms and frequent hospitalizations. Heart failure management adds significant financial burden to the health care system. Palliative care can be integrated into HF care to improve quality of life and symptom management and to address physical, spiritual, and psychosocial needs of patients and families. Palliative care can be used concurrently with or independent of curative or life-prolonging HF therapies. Transformational leadership principles were used to guide the development of a plan to enhance integration of palliative care within traditional advanced HF care.

  2. Design of an advanced flight planning system

    NASA Technical Reports Server (NTRS)

    Sorensen, J. A.; Goka, T.

    1985-01-01

    The demand for both fuel conservation and four-dimensional traffic management require that the preflight planning process be designed to account for advances in airborne flight management and weather forecasting. The steps and issues in designing such an advanced flight planning system are presented. Focus is placed on the different optimization options for generating the three-dimensional reference path. For the cruise phase, one can use predefined jet routes, direct routes based on a network of evenly spaced grid points, or a network where the grid points are existing navaid locations. Each choice has its own problem in determining an optimum solution. Finding the reference path is further complicated by choice of cruise altitude levels, use of a time-varying weather field, and requiring a fixed time-of-arrival (four-dimensional problem).

  3. 42 CFR 456.180 - Individual written plan of care.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Mental Hospitals Plan of Care § 456.180 Individual written plan of care. (a) Before admission to a mental hospital or...

  4. Next generation terminology infrastructure to support interprofessional care planning.

    PubMed

    Collins, Sarah; Klinkenberg-Ramirez, Stephanie; Tsivkin, Kira; Mar, Perry L; Iskhakova, Dina; Nandigam, Hari; Samal, Lipika; Rocha, Roberto A

    2017-11-01

    Develop a prototype of an interprofessional terminology and information model infrastructure that can enable care planning applications to facilitate patient-centered care, learn care plan linkages and associations, provide decision support, and enable automated, prospective analytics. The study steps included a 3 step approach: (1) Process model and clinical scenario development, and (2) Requirements analysis, and (3) Development and validation of information and terminology models. Components of the terminology model include: Health Concerns, Goals, Decisions, Interventions, Assessments, and Evaluations. A terminology infrastructure should: (A) Include discrete care plan concepts; (B) Include sets of profession-specific concerns, decisions, and interventions; (C) Communicate rationales, anticipatory guidance, and guidelines that inform decisions among the care team; (D) Define semantic linkages across clinical events and professions; (E) Define sets of shared patient goals and sub-goals, including patient stated goals; (F) Capture evaluation toward achievement of goals. These requirements were mapped to AHRQ Care Coordination Measures Framework. This study used a constrained set of clinician-validated clinical scenarios. Terminology models for goals and decisions are unavailable in SNOMED CT, limiting the ability to evaluate these aspects of the proposed infrastructure. Defining and linking subsets of care planning concepts appears to be feasible, but also essential to model interprofessional care planning for common co-occurring conditions and chronic diseases. We recommend the creation of goal dynamics and decision concepts in SNOMED CT to further enable the necessary models. Systems with flexible terminology management infrastructure may enable intelligent decision support to identify conflicting and aligned concerns, goals, decisions, and interventions in shared care plans, ultimately decreasing documentation effort and cognitive burden for clinicians and

  5. Palliative Care Processes Embedded in the ICU Workflow May Reserve Palliative Care Teams for Refractory Cases.

    PubMed

    Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig

    2018-01-01

    Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.

  6. Phonological Advance Planning in Sentence Production

    ERIC Educational Resources Information Center

    Oppermann, Frank; Jescheniak, Jorg D.; Schriefers, Herbert

    2010-01-01

    Our study addresses the scope of phonological advance planning during sentence production using a novel experimental procedure. The production of German sentences in various syntactic formats (SVO, SOV, and VSO) was cued by presenting pictures of the agents of previously memorized agent-action-patient scenes. To tap the phonological activation of…

  7. The impact of concordant communication in outpatient care planning - nurses' perspective.

    PubMed

    Olsson, Maivor; Larsson, Lena G; Flensner, Gullvi; Bäck-Pettersson, Siv

    2012-09-01

    To elucidate registered nurses' experiences of coordinated care planning in outpatient care. Coordinated care planning has been studied from the perspectives of both patients and nurses in inpatient care, but it is deficient in outpatient care. Qualitative content analysis of interviews with 10 registered nurses participating in two focus groups. An overall theme was identified: creating concordant communication in relation to patient and health-care providers. The result is based on four categories and nine subcategories. Nurses need extraordinary communication skills to reach concordance in outpatient care planning. In addition to involving and supporting the patients and next of kin in the decision-making process, the outcome of the nursing process must be understood by colleagues and members of other professions and health-care providers (non-nursing). An effective outpatient care-planning process requires that care managers understand the impact of communicating, transferring information and reaching consensus with other health-care providers, actively supporting employees in the outpatient care-planning process and contributing to the development of common goals and policy documents across organisational boundaries. © 2012 Blackwell Publishing Ltd.

  8. 42 CFR 409.43 - Plan of care requirements.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... 42 Public Health 2 2010-10-01 2010-10-01 false Plan of care requirements. 409.43 Section 409.43 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES MEDICARE PROGRAM HOSPITAL INSURANCE BENEFITS Home Health Services Under Hospital Insurance § 409.43 Plan of care...

  9. Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

    PubMed

    Gorman, Jessica R; Julian, Anne K; Roberts, Samantha A; Romero, Sally A D; Ehren, Jennifer L; Krychman, Michael L; Boles, Sarah G; Mao, Jun; Irene Su, H

    2018-02-01

    Reproductive-aged breast cancer survivors (BCS) who have completed initial cancer treatment frequently want to know about their future fertility potential. The purpose of this qualitative study was to assess if the fertility-related content presented in the survivorship care plan prototype met the informational needs of post-treatment BCS and to provide an opportunity for the target audience to review and react to the proposed content and design. We conducted and analyzed transcripts from seven focus groups with BCS to evaluate their reactions to the survivorship care plan prototype. We independently coded transcripts for consistent themes and sub-themes and used a consensus-building approach to agree on interpretation of results. We identified five themes that describe the post-treatment BCS' responses to the prototype survivorship care plan in the context of their informational needs and experiences: (1) the prototype's fertility-related information is relevant; (2) desire for clinical parameters to help survivors understand their infertility risk; (3) fertility-related information is important throughout survivorship; (4) evidence-based content from a neutral source is trustworthy; and (5) the recommendation to see a fertility specialist is helpful, but cost is a barrier. BCS have concerns and needs related to their fertility potential after initial breast cancer treatment. The evidence-based information offered in our prototype survivorship care plan was acceptable to BCS and has significant potential to address these needs. Additional primary data that identify post-cancer treatment indicators of fertility would advance this effort.

  10. Too Soon to Give Up? Re-examining the Value of Advance Directives

    PubMed Central

    Levi, Benjamin H.; Green, Michael J.

    2013-01-01

    In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future, translates an individual’s values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by 1) educating users about advance care planning; 2) helping individuals identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; 3) explaining common end-of-life medical conditions and life-sustaining treatment; 4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and 5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and healthcare providers in discussions about advance care planning. PMID:20379910

  11. Integrating evidence-based interventions into client care plans.

    PubMed

    Doran, Diane; Carryer, Jennifer; Paterson, Jane; Goering, Paula; Nagle, Lynn; Kushniruk, Andre; Bajnok, Irmajean; Clark, Carrie; Srivastava, Rani

    2009-01-01

    Within the mental health care system, there is an opportunity to improve patient safety and the overall quality of care by integrating clinical practice guidelines with the care planning process through the use of information technology. Electronic assessment tools such as the Resident Assessment Inventory - Mental Health (RAI-MH) are widely used to identify the health care needs and outcomes of clients. In this knowledge translation initiative, an electronic care planning tool was enhanced to include evidence-based clinical interventions from schizophrenia guidelines. This paper describes the development of a mental health decision support prototype, a field test by clinicians, and user experiences with the application.

  12. Advancing the Science of Implementation in Primary Health Care.

    PubMed

    Bazemore, Andrew; Neale, Anne Victoria; Lupo, Phillip; Seehusen, Dean

    2018-01-01

    Implementation Science is commonly described as the study of methods and approaches that promote the uptake and use of evidence-based interventions into routine practice and policymaking. In this issue of JABFM , investigators share a wealth of new insights from the frontlines of Implementation Science in primary care: what it is, how we are doing it, and how it is advancing the evidence base of primary care. The breadth of implementation science in primary care is affirmed by the range of topics covered, from thought leader recommendations on future directions for the field, to reports on how best practices in policy and practice are shaping primary care implementation in the United States and Canada. There are also important updates on agents of primary care implementation themselves, such as practice facilitators, geriatric care teams, and family physicians interested in providing obstetric care. Other articles report on novel practice transformation efforts that advance health promotion and disease prevention, and innovative approaches to identifying and addressing social determinants of health in primary care practices and the communities they serve. The articles seem to generate as many new questions as they answer, and highlight the need for continued emphasis on advancing the science of implementation in primary health care. © Copyright 2018 by the American Board of Family Medicine.

  13. [Technological advances and hospital-at-home care].

    PubMed

    Tibaldi, Vittoria; Aimonino Ricauda, Nicoletta; Rocco, Maurizio; Bertone, Paola; Fanton, Giordano; Isaia, Giancarlo

    2013-05-01

    Advances in the miniaturization and portability of diagnostic technologies, information technologies, remote monitoring, and long-distance care have increased the viability of home-based care, even for patients with serious conditions. Telemedicine and teleradiology projects are active at the Hospital at Home Service of Torino.

  14. Primary and community care workforce planning and development.

    PubMed

    Hurst, Keith

    2006-09-01

    This article reports a study that provided primary and community care managers with information, allowing them to: (a) evaluate the size and mix of their workforce; and (b) develop knowledgeable and skilled teams to meet the demands of growing and changing services. Primary and community care services are growing in the United Kingdom, but workforce planning and development, despite their wide-ranging cost and quality implications, have not received the same attention. Indeed, most primary and community care workforce planning and development issues are universal. Demand 1-1 side workforce planning is concerned not only with the number, but also with staff mix; but how these autonomous and isolated practitioners spend their time is unique. The other side of the equation, workforce supply, raises many recruitment and retention challenges for managers in many countries. Any country's main workforce planning methods apply equally well to primary care, but each is flawed. A second, main problem is that the methods lead to fragmented services, whereas modern workforce planning methods should be multidisciplinary. Consequently, it has never been more important for managers to have data and algorithms to develop appropriate care teams. A large and versatile workforce database, profiling 304 English primary care trusts using demographic, socio-economic, mortality, morbidity, staffing and performance workforce-related variables, compiled in 2002 and updated yearly, is described. Data were supplemented with a systematic literature review leading to a 340-item annotated bibliography; and qualitative interviews with managers. Workforce size and mix are historical and irrational at best. Moreover, the number of variables that influence staffing is growing, thereby complicating workforce planning. Evaluating and adjusting the size and mix of teams using empirically determined community demand and performance variables based on the area's socio-economic characteristics is

  15. Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

    PubMed

    Desai, Arti D; Jacob-Files, Elizabeth A; Wignall, Julia; Wang, Grace; Pratt, Wanda; Mangione-Smith, Rita; Britto, Maria T

    2018-06-05

    Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC. We followed a user-centered design methodology and conducted in-depth semistructured interviews with caregivers and providers of CMC who receive care at a tertiary care children's hospital. We applied inductive, thematic analysis to identify salient themes. Analysis occurred concurrently with data collection; therefore, the interview guide was iteratively revised as new questions and themes emerged. Interviews were conducted with 17 caregivers and 22 providers. On the basis of participant perspectives, we identified 4 requirements for shared care plans that would help meet information needs and mitigate current information barriers when caring for CMC. These requirements included the following: (1) supporting the accessibility of care plans from multiple locations (eg, cloud-based) and from multiple devices, with alert and search features; (2) ensuring the organization is tailored to the specific user; (3) including collaborative functionality such as real-time, multiuser content management and secure messaging; and (4) storing care plans on a secure platform with caregiver-controlled permission settings. Although further studies are needed to understand the optimal design and implementation strategies, shared care plans that meet these specified requirements could mitigate perceived information barriers and improve care for CMC. Copyright © 2018 by the American Academy of Pediatrics.

  16. Barriers and facilitators to implementing cancer survivorship care plans.

    PubMed

    Dulko, Dorothy; Pace, Claire M; Dittus, Kim L; Sprague, Brian L; Pollack, Lori A; Hawkins, Nikki A; Geller, Berta M

    2013-11-01

    To evaluate the process of survivorship care plan (SCP) completion and to survey oncology staff and primary care physicians (PCPs) regarding challenges of implementing SCPs. Descriptive pilot study. Two facilities in Vermont, an urban academic medical center and a rural community academic cancer center. 17 oncology clinical staff created SCPs, 39 PCPs completed surveys, and 58 patients (breast or colorectal cancer) participated in a telephone survey. Using Journey Forward tools, SCPs were created and presented to patients. PCPs received the SCP with a survey assessing its usefulness and barriers to delivery. Oncology staff were interviewed to assess perceived challenges and benefits of SCPs. Qualitative and quantitative data were used to identify challenges to the development and implementation process as well as patient perceptions of the SCP visit. SCP, healthcare provider perception of barriers to completion and implementation, and patient perception of SCP visit. Oncology staff cited the time required to obtain information for SCPs as a challenge. Completing SCPs 3-6 months after treatment ended was optimal. All participants felt advanced practice professionals should complete and review SCPs with patients. The most common challenge for PCPs to implement SCP recommendations was insufficient knowledge of cancer survivor issues. Most patients found the care plan visit very useful, particularly within six months of diagnosis. Creation time may be a barrier to widespread SCP implementation. Cancer survivors find SCPs useful, but PCPs feel insufficient knowledge of cancer survivor issues is a barrier to providing best follow-up care. Incorporating SCPs in electronic medical records may facilitate patient identification, appropriate staff scheduling, and timely SCP creation. Oncology nurse practitioners are well positioned to create and deliver SCPs, transitioning patients from oncology care to a PCP in a shared-care model of optimal wellness. Institution support for

  17. Advancing the chronic care road map: a contemporary overview.

    PubMed

    Ahmed, Sara; Gogovor, Amede; Kosseim, Mylene; Poissant, Lise; Riopelle, Richard; Simmonds, Maureen; Krelenbaum, Marilyn; Montague, Terrence

    2010-01-01

    In an effort to assess and advance the community-based model of chronic care, we reviewed a contemporary spectrum of Canadian chronic disease management and prevention (CDMP) programs with a participatory audience of administrators, academics, professional and non-professional providers and patients. While many questions remain unanswered, several common characteristics of CDMP success were apparent. These included community-based partnerships with aligned goals; inter-professional and non-professional care, including patient self-management; measured and shared information on practices and outcomes; and visible leadership. Principal improvement opportunities identified were the enhanced engagement of all stakeholders; further efficacy evidence for team care; facile information systems, with clear rationales for data selection, access, communication and security; and increased education of, and resource support for, patients and caregivers. Two immediate actions were suggested. One was a broad and continuing communication plan highlighting CDMP issues and opportunities. The other was a standardized survey of team structures, interventions, measurements and communications in ongoing CDMP programs, with a causal analysis of their relation to outcomes. In the longer term, the key needs requiring action were more inter-professional education of health human resources and more practical information systems available to all stakeholders. Things can be better.

  18. Lay Patient Navigators' Perspectives of Barriers, Facilitators and Training Needs in Initiating Advance Care Planning Conversations With Older Patients With Cancer.

    PubMed

    Niranjan, Soumya J; Huang, Chao-Hui S; Dionne-Odom, J Nicholas; Halilova, Karina I; Pisu, Maria; Drentea, Patricia; Kvale, Elizabeth A; Bevis, Kerri S; Butler, Thomas W; Partridge, Edward E; Rocque, Gabrielle B

    2018-04-01

    Respecting Choices is an evidence-based model of facilitating advance care planning (ACP) conversations between health-care professionals and patients. However, the effectiveness of whether lay patient navigators can successfully initiate Respecting Choices ACP conversations is unknown. As part of a large demonstration project (Patient Care Connect [PCC]), a cohort of lay patient navigators underwent Respecting Choices training and were tasked to initiate ACP conversations with Medicare beneficiaries diagnosed with cancer. This article explores PCC lay navigators' perceived barriers and facilitators in initiating Respecting Choices ACP conversations with older patients with cancer in order to inform implementation enhancements to lay navigator-facilitated ACP. Twenty-six lay navigators from 11 PCC cancer centers in 4 states (Alabama, George, Tennessee, and Florida) completed in-depth, one-on-one semistructured interviews between June 2015 and August 2015. Data were analyzed using a thematic analysis approach. This evaluation identifies 3 levels-patient, lay navigator, and organizational factors in addition to training needs that influence ACP implementation. Key facilitators included physician buy-in, patient readiness, and navigators' prior experience with end-of-life decision-making. Lay navigators' perceived challenges to initiating ACP conversations included timing of the conversation and social and personal taboos about discussing dying. Our results suggest that further training and health system support are needed for lay navigators playing a vital role in improving the implementation of ACP among older patients with cancer. The lived expertise of lay navigators along with flexible longitudinal relationships with patients and caregivers may uniquely position this workforce to promote ACP.

  19. Long-term care: a substantive factor in financial planning.

    PubMed

    Willis, D A

    2000-01-01

    More than 50 percent of women will enter a nursing home at some point in their lives. About one-third of men living to age 65 will also need nursing home care. Planning for long-term care is even more important since Medicare covers very little of the cost of such care. The Indiana Partnership Plan is one program designed to help fund the long-term care costs while allowing individuals protect other financial assets.

  20. Integration of Palliative Care Principles into the Ongoing Care of Children with Cancer: Individualized Care Planning and Coordination

    PubMed Central

    Baker, Justin N; Hinds, Pamela S; Spunt, Sheri L; Barfield, Raymond C; Allen, Caitlin; Powell, Brent C; Anderson, Lisa H; Kane, Javier R

    2008-01-01

    Synopsis The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians’ strong desire to provide compassionate, competent and sensitive care to the seriously ill child and the child’s family can be effectively translated into clinical practice through these processes. “To cure sometimes, to relieve often, to comfort always -- this is our work.” Author Unknown PMID:18242323

  1. Advanced practice nursing role delineation in acute and critical care: application of the strong model of advanced practice.

    PubMed

    Mick, D J; Ackerman, M H

    2000-01-01

    This purpose of this study was to differentiate between the roles of clinical nurse specialists and acute care nurse practitioners. Hypothesized blending of the clinical nurse specialist and acute care nurse practitioner roles is thought to result in an acute care clinician who integrates the clinical skills of the nurse practitioner with the systems knowledge, educational commitment, and leadership ability of the clinical nurse specialist. Ideally, this role blending would facilitate excellence in both direct and indirect patient care. The Strong Model of Advanced Practice, which incorporates practice domains of direct comprehensive care, support of systems, education, research, and publication and professional leadership, was tested to search for practical evidence of role blending. This descriptive, exploratory, pilot study included subjects (N = 18) solicited from an academic medical center and from an Internet advanced practice listserv. Questionnaires included self-ranking of expertise in practice domains, as well as valuing of role-related tasks. Content validity was judged by an expert panel of advanced practice nurses. Analyses of descriptive statistics revealed that clinical nurse specialists, who had more experience both as registered nurses and in the advanced practice nurse role, self-ranked their expertise higher in all practice domains. Acute care nurse practitioners placed higher importance on tasks related to direct comprehensive care, including conducting histories and physicals, diagnosing, and performing diagnostic procedures, whereas clinical nurse specialists assigned greater importance to tasks related to education, research, and leadership. Levels of self-assessed clinical expertise as well as valuing of role-related tasks differed among this sample of clinical nurse specialists and acute care nurse practitioners. Groundwork has been laid for continuing exploration into differentiation in advanced practice nursing roles. As the clinical

  2. [Application and evalauation of care plan for patients admitted to Intensive Care Units].

    PubMed

    Cuzco Cabellos, C; Guasch Pomés, N

    2015-01-01

    Assess whether the use of the nursing care plans improves outcomes of nursing care to patients admitted to the intensive care unit (ICU). The study was conducted in a University Hospital of Barcelona in Spain, using a pre- and post-study design. A total of 61 patient records were analysed in the pre-intervention group. A care plan was applied to 55 patients in the post-intervention group. Specific quality indicators in a medical intensive care unit to assess the clinical practice of nursing were used. Fisher's exact test was used to compare the degree of association between quality indicators in the two groups. A total of 116 records of 121 patients were evaluated: 61 pre-intervention and 55 post-intervention. Fisher test: The filling of nursing records, p=.0003. Checking cardiorespiratory arrest equipment, p <.001. Central vascular catheter related bacteraemia (B-CVC) p=.622. Ventilator associated pneumonia (VAP) p=.1000. Elevation of the head of the bed more than 30° p=.049, and the pain management in non-sedated patients p=.082. The implementation of nursing care plans in patients admitted to the intensive care area may contribute to improvement in the outcomes of nursing care. Copyright © 2015 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

  3. Development and testing of a decision aid on goals of care for advanced dementia.

    PubMed

    Einterz, Seth F; Gilliam, Robin; Lin, Feng Chang; McBride, J Marvin; Hanson, Laura C

    2014-04-01

    Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Two NHs in North Carolina. Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. Copyright © 2014 American Medical Directors Association

  4. Managed care redux: health plans shift responsibilities to consumers.

    PubMed

    Draper, Debra A; Claxton, Gary

    2004-03-01

    Confronted with conflicting pressures to stem double-digit premium increases and provide unfettered access to care, health plans are developing products that shift more financial and care management responsibilities to consumers, according to findings from the Center for Studying Health System Change's (HSC) 2002-03 site visits to 12 nationally representative communities. Plans are pursuing these strategies in collaboration with employers that want to gain control over rapidly rising premiums while continuing to respond to employee demands for less restrictive managed care practices. Mindful of the managed care backlash, health plans also are stepping up utilization management activities for high-cost services and focusing care management on high-cost patients. While the move toward greater consumer engagement is clear, the impact on costs and consumer willingness to assume these new responsibilities remain to be seen.

  5. Types of Managed Care Plans

    MedlinePlus

    ... AAP Find a Pediatrician Family Life Medical Home Health Insurance Pediatric Specialists Family Dynamics Media Work & Play Getting ... Your Community Healthy Children > Family Life > Medical Home > Health Insurance > Types of Managed Care Plans Family Life Listen ...

  6. Recent advances in multidisciplinary critical care.

    PubMed

    Blot, Stijn; Afonso, Elsa; Labeau, Sonia

    2015-01-01

    The intensive care unit is a work environment where superior dedication is crucial for optimizing patients' outcomes. As this demanding commitment is multidisciplinary in nature, it requires special qualities of health care workers and organizations. Thus research in the field covers a broad spectrum of activities necessary to deliver cutting-edge care. However, given the numerous research articles and education activities available, it is difficult for modern critical care clinicians to keep up with the latest progress and innovation in the field. This article broadly summarizes new developments in multidisciplinary intensive care. It provides elementary information about advanced insights in the field via brief descriptions of selected articles grouped by specific topics. Issues considered include care for heart patients, mechanical ventilation, delirium, nutrition, pressure ulcers, early mobility, infection prevention, transplantation and organ donation, care for caregivers, and family matters. ©2015 American Association of Critical-Care Nurses.

  7. Characteristics and care pathways of advanced cancer patients in a palliative-supportive care unit and an oncological ward.

    PubMed

    Mercadante, Sebastiano; Marchetti, Paolo; Adile, Claudio; Caruselli, Amanda; Ferrera, Patrizia; Costanzi, Andrea; Casuccio, Alessandra

    2018-06-01

    A supportive palliative care unit (SPCU) may have a positive impact on patients' care. The aim of this study was to compare the pattern of patients admitted to a specialized SPCU and to a traditional oncologic ward (OW) in a consecutive sample of advanced cancer patients. Data on patients demographics, reasons for and kind of admission, care-giver, anticancer treatments, being on/off treatment or uncertain, origin setting, who proposed hospital admission, the use of opioids, and hospitalization were gathered. The same parameters were recorded at discharge. A follow-up was performed by phone 1 month after discharge. Two-hundred patients were surveyed. Awareness of disease was more complete in OW patients (P = 0.001). Uncontrolled pain and symptoms were the prevalent reasons for admission to SPCU (P < 0.0005). Toxicity from chemotherapy was more frequently reported by OW patients (P = 0.001). SPCU patients received higher doses of opioids (P = 0.004). More SPCU patients were referred from home and were discharged home (P < 0.0005 and P = 0.018, respectively). Emergency admissions were more frequently reported in OW patients (P < 0.0005). One month after, more SPCU patients were at home and were still on active treatment (P = 0.002, and P = 0.05, respectively). More OW patients died within 1 month (P = 0.001). SPCU allows a better planning admission to hospital and a better care trajectory in advanced cancer patients in comparison to a busy OW, where unselected emergencies more frequently occur.

  8. 42 CFR 460.106 - Plan of care.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... 42 Public Health 4 2011-10-01 2011-10-01 false Plan of care. 460.106 Section 460.106 Public Health CENTERS FOR MEDICARE & MEDICAID SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES (CONTINUED) PROGRAMS OF ALL-INCLUSIVE CARE FOR THE ELDERLY (PACE) PROGRAMS OF ALL-INCLUSIVE CARE FOR THE ELDERLY (PACE) PACE...

  9. Personalised Care Plan Management Utilizing Guideline-Driven Clinical Decision Support Systems.

    PubMed

    Laleci Erturkmen, Gokce Banu; Yuksel, Mustafa; Sarigul, Bunyamin; Lilja, Mikael; Chen, Rong; Arvanitis, Theodoros N

    2018-01-01

    Older age is associated with an increased accumulation of multiple chronic conditions. The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. Integrated care is a means to address the growing demand for improved patient experience and health outcomes of multimorbid and long-term care patients. Care planning is a prevalent approach of integrated care, where the aim is to deliver more personalized and targeted care creating shared care plans by clearly articulating the role of each provider and patient in the care process. In this paper, we present a method and corresponding implementation of a semi-automatic care plan management tool, integrated with clinical decision support services which can seamlessly access and assess the electronic health records (EHRs) of the patient in comparison with evidence based clinical guidelines to suggest personalized recommendations for goals and interventions to be added to the individualized care plans.

  10. Results from a national survey on chronic care management by health plans.

    PubMed

    Mattke, Soeren; Higgins, Aparna; Brook, Robert

    2015-05-01

    The growing burden of chronic disease necessitates innovative approaches to help patients and to ensure the sustainability of our healthcare system. Health plans have introduced chronic care management models, but systematic data on the type and prevalence of different approaches are lacking. Our goal was to conduct a systematic examination of chronic care management programs offered by health plans in the commercial market (ie, in products sold to employers and individuals. We undertook a national survey of a representative sample of health plans (70 plans, 36% response rate) and 6 case studies on health plans' programs to improve chronic care in the commercial market. The data underwent descriptive and bivariate analyses. All plans, regardless of size, location, and ownership, offer chronic care management programs, which identify eligible members from claims data and match them to interventions based on overall risk and specific care gaps. Plans then report information on care gaps to providers and offer self-management support to their members. While internal evaluations suggest that the interventions improve care and reduce cost, plans report difficulties in engaging members and providers. To overcome those obstacles, plans are integrating their programs into provider work flow, collaborating with providers on care redesign and leveraging patient support technologies. Our study shows that chronic care management programs have become a standard component of the overall approach used by health plans to manage the health of their members.

  11. Building foundations for the future: the NHS Scotland advanced practice succession planning development pathway.

    PubMed

    Currie, Kay; Grundy, Maggie

    2011-10-01

    To highlight implications for managers from the implementation of a national advanced practice succession planning development pathway within Scotland. Internationally, advanced practice posts have often developed in an ad-hoc manner, with little organizational attention to succession planning. Evaluation of a pilot national succession planning development pathway identified mechanisms which facilitate or hamper effective planning for advanced practice roles. A responsive evaluation design incorporating semi-structured questionnaires to pathway participants (n = 15) and semi-structured telephone interviews with case-site pathway participants (n = 7) and their line managers. Managers believed the development pathway was worthwhile; however, there was limited strategic planning to match individuals' development to service need. Practitioners generally perceived managers as interested in their development, although levels of practical support varied. There is concern from both managers and practitioners regarding ongoing funding for advanced practice development. The present evaluation study reiterates the need for organizational commitment to succession planning including robust service needs analysis mechanisms and adequate funding for development processes. Nurse managers are viewed as the 'gatekeepers' to opportunities for developing advanced nurse practitioners; scare resources must be targeted effectively to support succession planning through the development of selected individuals for future advanced practice posts, justified by service need. © 2011 Blackwell Publishing Ltd.

  12. 25 CFR 1001.9 - Selection criteria for tribes/consortia seeking advance planning grant funding.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... planning grant funding. 1001.9 Section 1001.9 Indians OFFICE OF THE ASSISTANT SECRETARY, INDIAN AFFAIRS... advance planning grant funding. (a) Who is eligible to apply for a planning grant that will be awarded...-governance tribe and needs advance funding in order to complete the planning phase requirement may apply...

  13. Joint crisis plans and psychiatric advance directives in German psychiatric practice.

    PubMed

    Radenbach, Katrin; Falkai, Peter; Weber-Reich, Traudel; Simon, Alfred

    2014-05-01

    This study explores the attitude of German psychiatrists in leading positions towards joint crisis plans and psychiatric advance directives. This topic was examined by contacting 473 medical directors of German psychiatric hospitals and departments. They were asked to complete a questionnaire developed by us. That form contained questions about the incidence and acceptance of joint crisis plans and psychiatric advance directives and previous experiences with them. 108 medical directors of psychiatric hospitals and departments responded (response rate: 22.8%). Their answers demonstrate that in their hospitals these documents are rarely used. Among the respondents, joint crisis plans are more accepted than psychiatric advance directives. There is a certain uncertainty when dealing with these instruments. Our main conclusion is that German psychiatry needs an intensified discussion on the use of instruments for patients to constitute procedures for future critical psychiatric events. For this purpose it will be helpful to collect more empirical data. Furthermore, the proposal of joint crisis plans in psychiatric hospitals and departments should be discussed as well as the possibility of consulting an expert during the preparation of a psychiatric advance directive.

  14. Advance care planning and end-of-life decision making in dialysis: a randomized controlled trial targeting patients and their surrogates.

    PubMed

    Song, Mi-Kyung; Ward, Sandra E; Fine, Jason P; Hanson, Laura C; Lin, Feng-Chang; Hladik, Gerald A; Hamilton, Jill B; Bridgman, Jessica C

    2015-11-01

    Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates' bereavement outcomes. A randomized trial compared an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1-3.3), surrogate decision-making confidence (β=0.13; 95% CI, 0.01-0.24), and the composite (OR, 1.82; 95% CI, 1.0-3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β=-0.01; 95% CI, -0.12 to 0.10). 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β=-1.13; 95% CI, -2.23 to -0.03), depression (β=-2.54; 95% CI, -4.34 to -0.74), and posttraumatic distress (β=-5.75; 95% CI, -10.9 to -0.64) than controls. Study was conducted in a single US region. SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes. Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

  15. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.

    PubMed

    Sudore, Rebecca L; Knight, Sara J; McMahan, Ryan D; Feuz, Mariko; Farrell, David; Miao, Yinghui; Barnes, Deborah E

    2014-04-01

    We have reconceptualized advance care planning (ACP) as a multistep process focused on preparing patients with skills needed for communication and in-the-moment decision making. To operationalize this paradigm, we created an easy-to-use ACP website (prepareforyourcare.org) based on a theoretical framework of behavior change and pilot-tested its efficacy to engage older adults in ACP. At baseline and 1 week after viewing the PREPARE website, we assessed behavior change in ACP by using a validated survey that includes Process Measures (knowledge, contemplation, self-efficacy, and readiness, 5-point Likert scales) and Action Measures (yes/no whether an ACP behavior was completed). We also assigned participants into behavior change stages (i.e., precontemplation, contemplation, preparation, action, maintenance) and determined the percentage of participants who moved from precontemplation at baseline to higher stages at 1 week. We also assessed PREPARE ease-of-use (10-point scale, 10 being the easiest). Changes were assessed with Wilcoxon signed rank sum tests and McNemar's tests. Mean age of the participants was 68.4 years (SD 6.6), and 65% were nonwhite. Behavior Change Process Measures average Likert scores increased from 3.1 (0.9) to 3.7 (0.7), P < 0.001. Action Measures did not change significantly. However, precontemplation significantly decreased for most actions (e.g., talking to doctor about desired medical care, 61% to 35%, P < 0.003), with a mean decrease of 21% (range, 16%-33%). PREPARE was rated a nine of ten (±1.9) for ease-of-use. A new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change. A clinical trial of PREPARE is currently underway. Published by Elsevier Inc.

  16. Encounters With Health-Care Providers and Advance Directive Completion by Older Adults.

    PubMed

    Koss, Catheryn

    2018-01-01

    The Patient Self-Determination Act (PSDA) requires hospitals, home health agencies, nursing homes, and hospice providers to offer new patients information about advance directives. There is little evidence regarding whether encounters with these health-care providers prompt advance directive completion by patients. To examine whether encounters with various types of health-care providers were associated with higher odds of completing advance directives by older patients. Logistic regression using longitudinal data from the 2012 and 2014 waves of the Health and Retirement Study. Participants were 3752 US adults aged 65 and older who reported not possessing advance directives in 2012. Advance directive was defined as a living will and/or durable power of attorney for health care. Four binary variables measured whether participants had spent at least 1 night in a hospital, underwent outpatient surgery, received home health or hospice care, or spent at least one night in a nursing home between 2012 and 2014. Older adults who received hospital, nursing home, or home health/hospice care were more likely to complete advance directives. Outpatient surgery was not associated with advance directive completion. Older adults with no advance directive in 2012 who encountered health-care providers covered by the PSDA were more likely to have advance directives by 2014. The exception was outpatient surgery which is frequently provided in freestanding surgery centers not subject to PSDA mandates. It may be time to consider amending the PSDA to cover freestanding surgery centers.

  17. Health Care in the United States [and] Health Care Issues: A Lesson Plan.

    ERIC Educational Resources Information Center

    Lewis, John; Dempsey, Joanne R.

    1984-01-01

    An article on American health care which focuses on health care costs and benefits is combined with a lesson plan on health care issues to enable students to consider both issues of cost effectiveness and morality in decisions about the allocation of health care. The article covers the history of interest in health care, the reasons for the…

  18. Thinking outside the box: prenatal care and the call for a prenatal advance directive.

    PubMed

    Catlin, Anita

    2005-01-01

    The concept of advance directives is well-known in the care of adults as a mechanism for choosing in advance the extent of medical interventions desired in clinical situations, particularly life-extending interventions such as ventilation support and drugs to maintain cardiopulmonary status. Infants born extremely prematurely often require life-supporting measures for which their parents or guardians report feeling unprepared to make decisions about. Current prenatal care does not include an educational component that teaches women about the length of gestation needed for a healthy viability, survivorship, and outcome without major impairment. Women who go into preterm labor are asked to make immediate decisions during times of crisis without any formal education base for this decision making. Feminist ethics (the philosophical stance that articulates that women's moral experience is worthy of respect and disallows women's subordination) (Becker LB, Becker CB, eds. Feminist ethics. In: Encyclopedia of Ethics. New York: Routledge Press; 2001) requires that healthcare decisions be based on education, context, and particular situations. The purpose of this article is to examine the current content of typical prenatal care and education and to suggest an additional educational component to prenatal care-education of women about infant viability and the planning of future decisions if a nonviable or critically ill newborn is delivered. A prenatal discussion and parental/family directive is suggested.

  19. Integrated care through disease-oriented clinical care pathways: experience from Japan’s regional health planning initiatives

    PubMed Central

    Okamoto, Etsuji; Miyamoto, Masaki; Hara, Kazuhiro; Yoshida, Jun; Muto, Masaki; Hirai, Aizan; Tatsumi, Haruyuki; Mizuno, Masaaki; Nagata, Hiroshi; Yamakata, Daisuke; Tanaka, Hiroshi

    2011-01-01

    Introduction In April 2008, Japan launched a radical reform in regional health planning that emphasized the development of disease-oriented clinical care pathways. These ‘inter-provider critical paths’ have sought to ensure effective integration of various providers ranging among primary care practitioners, acute care hospitals, rehabilitation hospitals, long-term care facilities and home care. Description of policy practice All 47 prefectures in Japan developed their Regional Health Plans pursuant to the guideline requiring that these should include at least four diseases: diabetes, acute myocardial infarction, cerebrovascular accident and cancer. To illustrate the care pathways developed, this paper describes the guideline referring to strokes and provides examples of the new Regional Health Plans as well as examples of disease-oriented inter-provider clinical paths. In particular, the paper examines the development of information sharing through electronic health records (EHR) to enhance effective integration among providers is discussed. Discussion and conclusion Japan’s reform in 2008 is unique in that the concept of ‘disease-oriented regional inter-provider critical paths’ was adopted as a national policy and all 47 prefectures developed their Regional Health Plans simultaneously. How much the new regional health planning policy has improved the quality and outcome of care remains to be seen and will be evaluated in 2013 after the five-year planned period of implementation has concluded. Whilst electronic health records appear to be a useful tool in supporting care integration they do not guarantee success in the application of an inter-provider critical path. PMID:22128281

  20. Emergency department-initiated palliative care for advanced cancer patients: protocol for a pilot randomized controlled trial.

    PubMed

    Kandarian, Brandon; Morrison, R Sean; Richardson, Lynne D; Ortiz, Joanna; Grudzen, Corita R

    2014-06-25

    For patients with advanced cancer, visits to the emergency department (ED) are common. Such patients present to the ED with a specific profile of palliative care needs, including burdensome symptoms such as pain, dyspnea, or vomiting that cannot be controlled in other settings and a lack of well-defined goals of care. The goals of this study are: i) to test the feasibility of recruiting, enrolling, and randomizing patients with serious illness in the ED; and ii) to evaluate the impact of ED-initiated palliative care on health care utilization, quality of life, and survival. This is a protocol for a single center parallel, two-arm randomized controlled trial in ED patients with metastatic solid tumors comparing ED-initiated palliative care referral to a control group receiving usual care. We plan to enroll 125 to 150 ED-advanced cancer patients at Mount Sinai Hospital in New York, USA, who meet the following criteria: i) pass a brief cognitive screen; ii) speak fluent English or Spanish; and iii) have never been seen by palliative care. We will use balanced block randomization in groups of 50 to assign patients to the intervention or control group after completion of a baseline questionnaire. All research staff performing assessment or analysis will be blinded to patient assignment. We will measure the impact of the palliative care intervention on the following outcomes: i) timing and rate of palliative care consultation; ii) quality of life and depression at 12 weeks, measured using the FACT-G and PHQ-9; iii) health care utilization; and iv) length of survival. The primary analysis will be based on intention-to-treat. This pilot randomized controlled trial will test the feasibility of recruiting, enrolling, and randomizing patients with advanced cancer in the ED, and provide a preliminary estimate of the impact of palliative care referral on health care utilization, quality of life, and survival. Clinical Trials.gov identifier: NCT01358110 (Entered 5/19/2011).

  1. 42 CFR 456.381 - Reports of evaluations and plans of care.

    Code of Federal Regulations, 2011 CFR

    2011-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care... evaluation and plan of care must be entered in the applicant's or recipient's record— (a) At the time of... plan. Utilization Review (UR) Plan: General Requirement ...

  2. 42 CFR 456.381 - Reports of evaluations and plans of care.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... SERVICES (CONTINUED) MEDICAL ASSISTANCE PROGRAMS UTILIZATION CONTROL Utilization Control: Intermediate Care... evaluation and plan of care must be entered in the applicant's or recipient's record— (a) At the time of... plan. Utilization Review (UR) Plan: General Requirement ...

  3. A planning and marketing prototype for changing health care organizations.

    PubMed

    Boshard, N

    1986-11-01

    The U.S. health care industry is undergoing a radical transformation. The consolidation of excess hospital capacity, fierce competition within a shrinking medical marketplace and a growing number of competitive health plans (PPOs and HMOs) are causing a major structural realignment within most health care organizations (HCOs). This realignment has resulted in a much greater reliance upon strategic planning and marketing by HCOs to cope with market-driven competitive challenges. Health care organizations must identify a new cadre of health professionals to support strategic planning, market promotion, market research, market sales and product line management. This new cadre must hold the value that customers (physicians, patients, and employers) are the most valuable asset of the health care organizations. The planning and marketing prototype depicted herein is designed to help HCOs find, differentiate and keep customers.

  4. Residential aged care residents and components of end of life care in an Australian hospital.

    PubMed

    Leong, Laurence Jee Peng; Crawford, Gregory Brian

    2018-06-09

    With ageing of Australians, the numbers of residential aged care (RAC) residents is rising. This places a spotlight on decisions about appropriate care for this population, including hospitalisation and end-of-life (EOL) care. The aim was to study a sample of RAC residents who attended and died in hospital, to quantify measurable components of EOL care so as to describe the extent of palliative care required. A retrospective case-note review of hospital records was conducted in Adelaide, Australia. Participants were 109 RAC residents who attended from July 2013 to June 2014 and died in hospital. Measurements were advance care planning, health care input from the RAC facilities to hospital and components of EOL care. Residents with and without advanced dementia were compared. Advance care directives (ACDs) were present from 11 to 50%, and advance care plans (ACPs) at 60%. There were more ACPs, resuscitation orders (for/against) and do-not-hospitalise orders in residents with advanced dementia than those without. General practitioner (GP) and extended care paramedic (ECP) input on decisions for hospital transfer were 30% and 1 %. Mean hospital stay to death was 5.2 days. For residents admitted under non-palliative care teams, specialist palliative care (SPC) was needed for phone advice in 5%, consultation in 45%, transfer to palliative care unit in 37%, and takeover by SPC team in 19%. Mean number of documented goals-of-care discussions with family/caregiver was 1.7. In the last 3 days of life, the mean daily number of doses of EOL medications was 4.2. Continuous subcutaneous infusion was commenced in 35%. Staff in RAC need to be adequately resourced to make complex decisions about whether to transfer to hospital. RAC nurses are mainly making these decisions as GP and ECP input were suboptimal. Ways to support nurses and optimise decision-making are needed. Advance care planning can be improved, especially documentation of EOL wishes and hospitalisation orders. By

  5. Prevalence of Use of Human Milk in US Advanced Care Neonatal Units

    PubMed Central

    Scanlon, Kelley S.

    2013-01-01

    BACKGROUND AND OBJECTIVE: The American Academy of Pediatrics recommends all preterm infants receive human milk. The objective of this study was to describe the use of human milk in advanced care neonatal units of US maternity hospitals. METHODS: We used Centers for Disease Control and Prevention’s national Maternity Practices in Infant Nutrition and Care survey from 2007, 2009, and 2011 to analyze 2 questions to describe the prevalence of US advanced care (special/level 2 or intensive/level 3) neonatal units routinely providing human milk to infants, and the use of any donor milk in these units. RESULTS: In 2011, 30.8% of maternity hospitals reported that most infants (≥90%) were routinely provided human milk in advanced care units, compared with 26.7% in 2009 and 21.2% in 2007 (trend P < .001). States in the Northwest and Northeast had a higher prevalence of hospitals routinely providing human milk to ≥90% of infants in advanced care units. In 2011, 22.0% of maternity hospitals providing advanced care used banked donor milk, compared with 14.4% in 2009 and 11.5% in 2007 (trend P < .001). Most of this increase occurred in intensive care units (25.1% 2007 vs 45.2% 2011; trend P < .001). There was substantial geographic variation in the prevalence of advanced care units using donor milk; generally the prevalence was higher in the West and in states with a milk bank in the state or a neighboring state. CONCLUSIONS: The use of human milk in US advanced care neonatal units is increasing; however, only one-third of these units are routinely providing human milk to most infants. PMID:23669517

  6. Virtual medicine: Utilization of the advanced cardiac imaging patient avatar for procedural planning and facilitation.

    PubMed

    Shinbane, Jerold S; Saxon, Leslie A

    Advances in imaging technology have led to a paradigm shift from planning of cardiovascular procedures and surgeries requiring the actual patient in a "brick and mortar" hospital to utilization of the digitalized patient in the virtual hospital. Cardiovascular computed tomographic angiography (CCTA) and cardiovascular magnetic resonance (CMR) digitalized 3-D patient representation of individual patient anatomy and physiology serves as an avatar allowing for virtual delineation of the most optimal approaches to cardiovascular procedures and surgeries prior to actual hospitalization. Pre-hospitalization reconstruction and analysis of anatomy and pathophysiology previously only accessible during the actual procedure could potentially limit the intrinsic risks related to time in the operating room, cardiac procedural laboratory and overall hospital environment. Although applications are specific to areas of cardiovascular specialty focus, there are unifying themes related to the utilization of technologies. The virtual patient avatar computer can also be used for procedural planning, computational modeling of anatomy, simulation of predicted therapeutic result, printing of 3-D models, and augmentation of real time procedural performance. Examples of the above techniques are at various stages of development for application to the spectrum of cardiovascular disease processes, including percutaneous, surgical and hybrid minimally invasive interventions. A multidisciplinary approach within medicine and engineering is necessary for creation of robust algorithms for maximal utilization of the virtual patient avatar in the digital medical center. Utilization of the virtual advanced cardiac imaging patient avatar will play an important role in the virtual health care system. Although there has been a rapid proliferation of early data, advanced imaging applications require further assessment and validation of accuracy, reproducibility, standardization, safety, efficacy, quality

  7. 25 CFR 1000.52 - What criteria will the Director use to award advance planning grants?

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... planning grants? 1000.52 Section 1000.52 Indians OFFICE OF THE ASSISTANT SECRETARY, INDIAN AFFAIRS... INDIAN SELF-DETERMINATION AND EDUCATION ACT Section 402(d) Planning and Negotiation Grants Advance Planning Grant Funding § 1000.52 What criteria will the Director use to award advance planning grants...

  8. Planning an Effective Child Care Center.

    ERIC Educational Resources Information Center

    Wright, Rodney; Wright, Sydney

    This conference presentation offers general guidelines for planning a new child care facility. Particular attention is given to site selection, space requirements, functional requirements, materials, climate, and choosing an architect. (RH)

  9. African Cultural Concept of Death and the Idea of Advance Care Directives

    PubMed Central

    Ekore, Rabi Ilemona; Lanre-Abass, Bolatito

    2016-01-01

    An advance care directive is a person's oral or written instructions about his or her future medical care, if he or she becomes unable to communicate. It may be in written or oral form. Africans ordinarily do not encourage the contemplation of death or any discussion about their own or their loved ones’ death. According to the African belief system, life does not end with death, but continues in another realm. Becoming an ancestor after death is a desirable goal of every individual, a feat which cannot be achieved if an individual asks for an unnatural death by attempting to utilize advance care directives. Advance care directives are considered to be too individualistic for communitarian societies such as Africa. Coupled with the communitarian nature of African societies are issues such as lack of awareness of advance directives, fear of death and grief, and the African cultural belief system, which are potential barriers to the utilization of advance care directives in the African setting. Hence, the need for culture sensitivity which makes it imperative that patient's family and loved ones are carried along as far as possible, without compromising the autonomy of the patient in question when utilizing advance care directives. PMID:27803556

  10. African Cultural Concept of Death and the Idea of Advance Care Directives.

    PubMed

    Ekore, Rabi Ilemona; Lanre-Abass, Bolatito

    2016-01-01

    An advance care directive is a person's oral or written instructions about his or her future medical care, if he or she becomes unable to communicate. It may be in written or oral form. Africans ordinarily do not encourage the contemplation of death or any discussion about their own or their loved ones' death. According to the African belief system, life does not end with death, but continues in another realm. Becoming an ancestor after death is a desirable goal of every individual, a feat which cannot be achieved if an individual asks for an unnatural death by attempting to utilize advance care directives. Advance care directives are considered to be too individualistic for communitarian societies such as Africa. Coupled with the communitarian nature of African societies are issues such as lack of awareness of advance directives, fear of death and grief, and the African cultural belief system, which are potential barriers to the utilization of advance care directives in the African setting. Hence, the need for culture sensitivity which makes it imperative that patient's family and loved ones are carried along as far as possible, without compromising the autonomy of the patient in question when utilizing advance care directives.

  11. The Impact of a Primary Care Education Program Regarding Cancer Survivorship Care Plans: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

    PubMed

    Donohue, SarahMaria; Haine, James E; Li, Zhanhai; Trowbridge, Elizabeth R; Kamnetz, Sandra A; Feldstein, David A; Sosman, James M; Wilke, Lee G; Sesto, Mary E; Tevaarwerk, Amye J

    2017-09-20

    Survivorship care plans (SCPs) have been recommended as tools to improve care coordination and outcomes for cancer survivors. SCPs are increasingly being provided to survivors and their primary care providers. However, most primary care providers remain unaware of SCPs, limiting their potential benefit. Best practices for educating primary care providers regarding SCP existence and content are needed. We developed an education program to inform primary care providers of the existence, content, and potential uses for SCPs. The education program consisted of a 15-min presentation highlighting SCP basics presented at mandatory primary care faculty meetings. An anonymous survey was electronically administered via email (n = 287 addresses) to evaluate experience with and basic knowledge of SCPs pre- and post-education. A total of 101 primary care advanced practice providers (APPs) and physicians (35% response rate) completed the baseline survey with only 23% reporting prior receipt of a SCP. Only 9% could identify the SCP location within the electronic health record (EHR). Following the education program, primary care physicians and APPs demonstrated a significant improvement in SCP knowledge, including improvement in their ability to locate one within the EHR (9 vs 59%, p < 0.0001). A brief educational program containing information about SCP existence, content, and location in the EHR increased primary care physician and APP knowledge in these areas, which are prerequisites for using SCP in clinical practice.

  12. Survivorship care planning in skin cancer: An unbiased statistical approach to identifying patterns of care-plan use.

    PubMed

    Benci, Joseph L; Minn, Andy J; Vachani, Carolyn C; Bach, Christina; Arnold-Korzeniowski, Karen; Hampshire, Margaret K; Metz, James M; Hill-Kayser, Christine E

    2018-01-01

    Nearly 1 in 5 Americans will develop skin cancer, and as a result, survivors of skin cancer compose one of the largest groups of cancer survivors. Survivorship care plans (SCPs) are an important tool for improving patient outcomes and provide critical information to both survivors and health care professionals. Recent efforts have been made to expand SCP utilization; however, which patients currently receive SCPs is poorly understood. This study used 596 individuals with a diagnosis of melanoma (n = 391) or nonmelanoma skin cancer (n = 205) who had used an Internet-based SCP tool from May 2010 to December 2016 to model the patient and provider characteristics that determine SCP utilization. Survivors were predominantly white (95.3%) and female (56.5%). Survivors who received a treatment summary were more likely to also receive an SCP. University and nonuniversity cancer centers used SCPs at a higher rate than other care settings. Survivors whose care was managed by a team rather than just an individual physician were also more likely to receive an SCP. Survivors older than 70 years at diagnosis were almost twice as likely to receive a plan as survivors who were diagnosed at a younger age. With a convenience sample of skin cancer survivors, it is possible to model factors that predict the receipt of SCPs. Important variables include the diagnosis age, treatment setting, physician type, and treatment-summary utilization. A closer examination of these variables identified several disparities in care-plan use and, therefore, opportunities to improve the distribution of SCPs. Further validation in additional cohorts of survivors is necessary to confirm these conclusions. Cancer 2018;124:183-91. © 2017 American Cancer Society. © 2017 American Cancer Society.

  13. Careful Planning Key to Accurate Fixed Reports Assets.

    ERIC Educational Resources Information Center

    MaRous, Arnold M.

    1986-01-01

    Only with careful planning can school business managers develop fixed asset information and good recordkeeping. Use of a simple inventory system and discussion with school districts already utilizing this system will assist planning. (CJH)

  14. Connection, regulation, and care plan innovation: a case study of four nursing homes.

    PubMed

    Colón-Emeric, Cathleen S; Lekan-Rutledge, Deborah; Utley-Smith, Queen; Ammarell, Natalie; Bailey, Donald; Piven, Mary L; Corazzini, Kirsten; Anderson, Ruth A

    2006-01-01

    We describe how connections among nursing home staff impact the care planning process using a complexity science framework. We completed six-month case studies of four nursing homes. Field observations (n = 274), shadowing encounters (n = 69), and in-depth interviews (n = 122) of 390 staff at all levels were conducted. Qualitative analysis produced a conceptual/thematic description and complexity science concepts were used to produce conceptual insights. We observed that greater levels of staff connection were associated with higher care plan specificity and innovation. Connection of the frontline nursing staff was crucial for (1) implementation of the formal care plan and (2) spontaneous informal care planning responsive to changing resident needs. Although regulations could theoretically improve cognitive diversity and information flow in care planning, we observed instances of regulatory oversight resulting in less specific care plans and abandonment of an effective care planning process. Interventions which improve staff connectedness may improve resident outcomes.

  15. Promoting advance directives among African Americans: a faith-based model.

    PubMed

    Bullock, Karen

    2006-02-01

    Studies show that African Americans are less likely than other ethnic groups to complete advance directives. However, what influences African Americans' decisions to complete or not complete advance directives is unclear. Using a faith-based promotion model, 102 African Americans aged 55 years or older were recruited from local churches and community-based agencies to participate in a pilot study to promote advance care planning. Focus groups were used to collect data on participants' preferences for care, desire to make personal choices, values and attitudes, beliefs about death and dying, and advance directives. A standardized interview was used in the focus groups, and the data were organized and analyzed using NUDIST 4 software (QRS Software, Victoria, Australia). Three fourths of the participants refused to complete advance directives. The following factors influenced the participants' decisions about end-of-life care and completion of an advance directive: spirituality; view of suffering, death, and dying; social support networks; barriers to utilization; and mistrust of the health care system. The dissemination of information apprises individuals of their right to self-determine about their care, but educational efforts may not produce a significant change in behavior toward completion of advance care planning. Thus, ongoing efforts are needed to improve the trust that African Americans have in medical and health care providers.

  16. Informed, advance refusals of treatment by people with severe mental illness in a randomised controlled trial of joint crisis plans: demand, content and correlates.

    PubMed

    Henderson, Claire; Farrelly, Simone; Flach, Clare; Borschmann, Rohan; Birchwood, Max; Thornicroft, Graham; Waheed, Waquas; Szmukler, George

    2017-11-24

    In the UK, crisis planning for mental health care should acknowledge the right to make an informed advance treatment refusal under the Mental Capacity Act 2005. Our aims were to estimate the demand for such treatment refusals within a sample of service users who had had a recent hospital admission for psychosis or bipolar disorder, and to examine the relationship between refusals, and service user characteristics. To identify refusals we conducted content analysis of Joint Crisis Plans, which are plans formulated by service users and their clinical team with involvement from an external facilitator, and routine care plans in sub-samples from a multi-centre randomised controlled trial of Joint Crisis Plans (plus routine mental health care) versus routine care alone (CRIMSON) in England. Factors hypothesised to be associated with refusals were identified using the trial data collected through baseline interviews of service users and clinicians and collection of routine clinical data. Ninety-nine of 221 (45%) of the Joint Crisis Plans contained a treatment refusal compared to 10 of 424 (2.4%) baseline routine care plans. No Joint Crisis Plans recorded disagreement with refusals on the part of clinicians. Among those with completed Joint Crisis Plans, adjusted analyses indicated a significant association between treatment refusals and perceived coercion at baseline (odds ratio = 1.21, 95% CI 1.02-1.43), but not with baseline working alliance or a past history of involuntary admission. We demonstrated significant demand for written treatment refusals in line with the Mental Capacity Act 2005, which had not previously been elicited by the process of treatment planning. Future treatment/crisis plans should incorporate the opportunity for service users to record a treatment refusal during the drafting of such plans. ISRCTN11501328 Registered 13th March 2008.

  17. Health care planning and education via gaming-simulation: a two-stage experiment.

    PubMed

    Gagnon, J H; Greenblat, C S

    1977-01-01

    A two-stage process of gaming-simulation design was conducted: the first stage of design concerned national planning for hemophilia care; the second stage of design was for gaming-simulation concerning the problems of hemophilia patients and health care providers. The planning design was intended to be adaptable to large-scale planning for a variety of health care problems. The educational game was designed using data developed in designing the planning game. A broad range of policy-makers participated in the planning game.

  18. Interprofessional collaboration regarding patients' care plans in primary care: a focus group study into influential factors.

    PubMed

    van Dongen, Jerôme Jean Jacques; Lenzen, Stephanie Anna; van Bokhoven, Marloes Amantia; Daniëls, Ramon; van der Weijden, Trudy; Beurskens, Anna

    2016-05-28

    The number of people with multiple chronic conditions demanding primary care services is increasing. To deal with the complex health care demands of these people, professionals from different disciplines collaborate. This study aims to explore influential factors regarding interprofessional collaboration related to care plan development in primary care. A qualitative study, including four semi-structured focus group interviews (n = 4). In total, a heterogeneous group of experts (n = 16) and health care professionals (n = 15) participated. Participants discussed viewpoints, barriers, and facilitators regarding interprofessional collaboration related to care plan development. The data were analysed by means of inductive content analysis. The findings show a variety of factors influencing the interprofessional collaboration in developing a care plan. Factors can be divided into 5 key categories: (1) patient-related factors: active role, self-management, goals and wishes, membership of the team; (2) professional-related factors: individual competences, domain thinking, motivation; (3) interpersonal factors: language differences, knowing each other, trust and respect, and motivation; (4) organisational factors: structure, composition, time, shared vision, leadership and administrative support; and (5) external factors: education, culture, hierarchy, domain thinking, law and regulations, finance, technology and ICT. Improving interprofessional collaboration regarding care plan development calls for an integral approach including patient- and professional related factors, interpersonal, organisational, and external factors. Further, the leader of the team seems to play a key role in watching the patient perspective, organising and coordinating interprofessional collaborations, and guiding the team through developments. The results of this study can be used as input for developing tools and interventions targeted at executing and improving interprofessional

  19. Advanced rural transportation systems (ARTS) : rural intelligent transportation systems (ITS) : program plan

    DOT National Transportation Integrated Search

    1996-08-01

    This Program Plan for the Advanced Rural Transportation Systems (ARTS) implements the goals and objectives established in the U.S. Department of Transportations (USDOTs) Strategic Plan for the ARTS. This Program Plan proposes five years (FY 97...

  20. Medical care transition planning and dental care use for youth with special health care needs during the transition from adolescence to young adulthood: a preliminary explanatory model

    PubMed Central

    Chi, Donald L.

    2013-01-01

    Objectives To test the hypotheses that youth with special health care needs (YSHCN) with a medical care transition plan are more likely to use dental care during the transition from adolescence to young adulthood and that different factors are associated with dental utilization for YSHCN with and YSHCN without functional limitations. Methods National Survey of CSHCN (2001) and Survey of Adult Transition and Health (2007) data were analyzed (N=1,746). The main predictor variable was having a medical care transition plan, defined as having discussed with a doctor how health care needs might change with age and having developed a transition plan. The outcome variable was dental care use in 2001 (adolescence) and 2007 (young adulthood). Multiple variable Poisson regression models with robust standard errors were used to estimate covariate-adjusted relative risks (RR). Results About 63% of YSHCN had a medical care transition plan and 73.5% utilized dental care. YSHCN with a medical care transition plan had a 9% greater relative risk (RR) of utilizing dental care than YSHCN without a medical care transition plan (RR:1.09; 95% CI:1.03–1.16). In the models stratified by functional limitation status, having a medical care transition plan was significantly associated with dental care use, but only for YSHCN without functional limitations (RR:1.11; 95% CI:1.04–1.18). Conclusions Having a medical care transition plan is significantly associated with dental care use, but only for YSHCN with no functional limitation. Dental care should be an integral part of the comprehensive health care transition planning process for all YSHCN. PMID:23812799

  1. Advancing Medication Safety: Establishing a National Action Plan for Adverse Drug Event Prevention.

    PubMed

    Harris, Yael; Hu, Dale J; Lee, Christine; Mistry, Mishale; York, Andrew; Johnson, Tisha K

    2015-08-01

    Adverse drug events (ADEs) are important contributors to preventable morbidity and mortality, comprising one third of all hospital adverse events. In response to growing evidence detailing the high prevalence of ADEs, particularly among vulnerable older adults, Congress requested that the Secretary of the Department of Health and Human Services (HHS) convene a Federal Interagency Steering Committee to establish a National Action Plan to focus on ADE prevention. In August 2014, the Office of Disease Prevention and Health Promotion released the final version of the National Action Plan for Adverse Drug Event Prevention. The Action Plan directly supports the goals of the HHS Strategic Plan and the Patient Protection and Affordable Care Act by providing guidance on tracking and preventing ADEs, as well as describing evidence-based tools and resources to enhance medication safety. ADE ACTION PLAN CONTENT: The Federal Interagency Steering Committee focused the Action Plan on ADEs that are clinically significant, account for the greatest number of measurable harms as identified by using existing surveillance tools, and are largely preventable. As such, the decision was made to target three medication classes: anticoagulants, diabetes agents (insulin and oral hypoglycemic agents), and opioids. The Action Plan is organized around four key areas: surveillance; evidence-based prevention; payment, policy incentives, and oversight; and research opportunities to advance medication safety. One measure of the ADE Action Plan's success will be the wider dissemination of information and educational resources to providers and patients (or consumers) regarding the risks associated with medications. Future Action Plan iterations are likely to consider other high-priority medication classes and update the recommendations.

  2. Candidate functions for advanced technology implementation in the Columbus mission planning environment

    NASA Technical Reports Server (NTRS)

    Loomis, Audrey; Kellner, Albrecht

    1988-01-01

    The Columbus Project is the European Space Agency's contribution to the International Space Station program. Columbus is planned to consist of three elements (a laboratory module attached to the Space Station base, a man-tended freeflyer orbiting with the Space Station base, and a platform in polar orbit). System definition and requirements analysis for Columbus are underway, scheduled for completion in mid-1990. An overview of the Columbus mission planning environment and operations concept as currently defined is given, and some of the challenges presented to software maintainers and ground segment personnel during mission operators are identified. The use of advanced technologies in system implementation is being explored. Both advantages of such solutions and potential problems they present are discussed, and the next steps to be taken by Columbus before targeting any functions for advanced technology implementation are summarized. Several functions in the mission planning process were identified as candidates for advanced technology implementation. These range from expert interaction with Columbus' data bases through activity scheduling and near-real-time response to departures from the planned timeline. Each function is described, and its potential for advanced technology implementation briefly assessed.

  3. A Randomized Controlled Trial of a Cardiopulmonary Resuscitation Video in Advance Care Planning for Progressive Pancreas and Hepatobiliary Cancer Patients

    PubMed Central

    Volandes, Angelo E.; Chen, Ling Y.; Gary, Kristen A.; Li, Yuelin; Agre, Patricia; Levin, Tomer T.; Reidy, Diane L.; Meng, Raymond D.; Segal, Neil H.; Yu, Kenneth H.; Abou-Alfa, Ghassan K.; Janjigian, Yelena Y.; Kelsen, David P.; O'Reilly, Eileen M.

    2013-01-01

    Abstract Background Cardiopulmonary resuscitation (CPR) is an important advance directive (AD) topic in patients with progressive cancer; however such discussions are challenging. Objective This study investigates whether video educational information about CPR engenders broader advance care planning (ACP) discourse. Methods Patients with progressive pancreas or hepatobiliary cancer were randomized to an educational CPR video or a similar CPR narrative. The primary end-point was the difference in ACP documentation one month posttest between arms. Secondary end-points included study impressions; pre- and post-intervention knowledge of and preferences for CPR and mechanical ventilation; and longitudinal patient outcomes. Results Fifty-six subjects were consented and analyzed. Rates of ACP documentation (either formal ADs or documented discussions) were 40% in the video arm (12/30) compared to 15% in the narrative arm (4/26), OR=3.6 [95% CI: 0.9–18.0], p=0.07. Post-intervention knowledge was higher in both arms. Posttest, preferences for CPR had changed in the video arm but not in the narrative arm. Preferences regarding mechanical ventilation did not change in either arm. The majority of subjects in both arms reported the information as helpful and comfortable to discuss, and they recommended it to others. More deaths occurred in the video arm compared to the narrative arm, and more subjects died in hospice settings in the video arm. Conclusions This pilot randomized trial addressing downstream ACP effects of video versus narrative decision tools demonstrated a trend towards more ACP documentation in video subjects. This trend, as well as other video effects, is the subject of ongoing study. PMID:23725233

  4. 14 CFR 151.125 - Allowable advance planning costs.

    Code of Federal Regulations, 2010 CFR

    2010-01-01

    ... 14 Aeronautics and Space 3 2010-01-01 2010-01-01 false Allowable advance planning costs. 151.125 Section 151.125 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION... as preliminary topographic and soil exploration; (2) Site evaluation; (3) Preliminary engineering...

  5. 14 CFR 151.125 - Allowable advance planning costs.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 3 2011-01-01 2011-01-01 false Allowable advance planning costs. 151.125 Section 151.125 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION... as preliminary topographic and soil exploration; (2) Site evaluation; (3) Preliminary engineering...

  6. 14 CFR 151.125 - Allowable advance planning costs.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 3 2014-01-01 2014-01-01 false Allowable advance planning costs. 151.125 Section 151.125 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION... as preliminary topographic and soil exploration; (2) Site evaluation; (3) Preliminary engineering...

  7. 14 CFR 151.125 - Allowable advance planning costs.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 3 2012-01-01 2012-01-01 false Allowable advance planning costs. 151.125 Section 151.125 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION... as preliminary topographic and soil exploration; (2) Site evaluation; (3) Preliminary engineering...

  8. 14 CFR 151.125 - Allowable advance planning costs.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 3 2013-01-01 2013-01-01 false Allowable advance planning costs. 151.125 Section 151.125 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF TRANSPORTATION... as preliminary topographic and soil exploration; (2) Site evaluation; (3) Preliminary engineering...

  9. Systematic synthesis of barriers and facilitators to service user-led care planning

    PubMed Central

    Bee, Penny; Price, Owen; Baker, John; Lovell, Karina

    2015-01-01

    Background Service user (patient) involvement in care planning is a principle enshrined by mental health policy yet often attracts criticism from patients and carers in practice. Aims To examine how user-involved care planning is operationalised within mental health services and to establish where, how and why challenges to service user involvement occur. Method Systematic evidence synthesis. Results Synthesis of data from 117 studies suggests that service user involvement fails because the patients' frame of reference diverges from that of providers. Service users and carers attributed highest value to the relational aspects of care planning. Health professionals inconsistently acknowledged the quality of the care planning process, tending instead to define service user involvement in terms of quantifiable service-led outcomes. Conclusions Service user-involved care planning is typically operationalised as a series of practice-based activities compliant with auditor standards. Meaningful involvement demands new patient-centred definitions of care planning quality. New organisational initiatives should validate time spent with service users and display more tangible and flexible commitments to meeting their needs. PMID:26243762

  10. Systematic synthesis of barriers and facilitators to service user-led care planning.

    PubMed

    Bee, Penny; Price, Owen; Baker, John; Lovell, Karina

    2015-08-01

    Service user (patient) involvement in care planning is a principle enshrined by mental health policy yet often attracts criticism from patients and carers in practice. To examine how user-involved care planning is operationalised within mental health services and to establish where, how and why challenges to service user involvement occur. Systematic evidence synthesis. Synthesis of data from 117 studies suggests that service user involvement fails because the patients' frame of reference diverges from that of providers. Service users and carers attributed highest value to the relational aspects of care planning. Health professionals inconsistently acknowledged the quality of the care planning process, tending instead to define service user involvement in terms of quantifiable service-led outcomes. Service user-involved care planning is typically operationalised as a series of practice-based activities compliant with auditor standards. Meaningful involvement demands new patient-centred definitions of care planning quality. New organisational initiatives should validate time spent with service users and display more tangible and flexible commitments to meeting their needs. © The Royal College of Psychiatrists 2015.

  11. The Clintons stump for health care reform plan as details slowly emerge.

    PubMed

    1993-10-05

    In September 1993, in the US, Hillary Rodham Clinton, testified before 5 key congressional committees on President Clinton's plan to reform health care. Most of the money needed to finance the plan would come from elimination of waste in the current system. The administration has not yet formally sent the proposal to Congress. Family planning services are part of the proposed mandated benefit package, but the draft document does not provide details on family planning coverage while it discusses other mandated services in detail. Further, the draft document mentions neither family planning supplies (e.g., pills, IUDs, or diaphragms) nor whether family planning services will be considered preventive care, thereby exempting them from copayments or deductibles. It specifies prenatal care, periodic examinations, and screening test for children and adults (e.g., well-baby care and immunizations) as preventive services. The plan covers pregnancy-related care, but, other than exclusion of in vitro fertilization, this is not defined. The plan has a conscientious exemption option, but it is not clear as to whether the administration plans to continue the standing policy granting conscientious exemption to individuals and medical facilities or to expand it to include entire health plans. The administration emphasizes that, even though the plan covers abortion. The Health Insurance Association of America opposes the plan while the American Medical Association (AMA) neither supports nor opposes it. The AMA does object, however, to the plans provisions on malpractice and limits on annual premium increases. Families USA strongly favors the plan. The Congressional Caucus on Women's Issues asks the President to include all reproductive health services. The National Black Women's Health Project appreciates the Administration's commitment and the plan's coverage of preventive care and reproductive health, but stresses that it must improve access to poor women, most of whom are black.

  12. Advanced practice nursing in performing arts health care.

    PubMed

    Weslin, Anna T; Silva-Smith, Amy

    2010-06-01

    Performing arts medicine is a growing health care profession specializing in the needs of performing artists. As part of the performing arts venue, the dancer, a combination of athlete and artist, presents with unique health care needs requiring a more collaborative and holistic health care program. Currently there are relatively few advanced practice nurses (APNs) who specialize in performing arts health care. APNs, with focus on collaborative and holistic health care, are ideally suited to join other health care professionals in developing and implementing comprehensive health care programs for the performing artist. This article focuses on the dancer as the client in an APN practice that specializes in performing arts health care.

  13. 42 CFR 456.401 - State plan UR requirements and options; UR plan required for intermediate care facility services.

    Code of Federal Regulations, 2012 CFR

    2012-10-01

    ... required for intermediate care facility services. 456.401 Section 456.401 Public Health CENTERS FOR...: General Requirement § 456.401 State plan UR requirements and options; UR plan required for intermediate care facility services. (a) The State plan must provide that— (1) UR is performed for each ICF that...

  14. 42 CFR 456.401 - State plan UR requirements and options; UR plan required for intermediate care facility services.

    Code of Federal Regulations, 2010 CFR

    2010-10-01

    ... required for intermediate care facility services. 456.401 Section 456.401 Public Health CENTERS FOR...: General Requirement § 456.401 State plan UR requirements and options; UR plan required for intermediate care facility services. (a) The State plan must provide that— (1) UR is performed for each ICF that...

  15. 42 CFR 456.401 - State plan UR requirements and options; UR plan required for intermediate care facility services.

    Code of Federal Regulations, 2013 CFR

    2013-10-01

    ... required for intermediate care facility services. 456.401 Section 456.401 Public Health CENTERS FOR...: General Requirement § 456.401 State plan UR requirements and options; UR plan required for intermediate care facility services. (a) The State plan must provide that— (1) UR is performed for each ICF that...

  16. Managed care plan performance since 1980: another look at 2 literature reviews.

    PubMed Central

    Sullivan, K

    1999-01-01

    OBJECTIVES: This article compares the quality of care provided by managed care plans (MCPs) and indemnity (or fee-for-service [FFS]) plans since 1980. METHODS: The 44 studies examined are the studies that Miller and Luft cited in their 1994 and 1997 reviews of the literature comparing MCPs with FFS plans. These studies are examined to determine how well they met Miller and Luft's selection criteria and, in addition, whether they controlled for differences in the breadth of insurance coverage. RESULTS: The 44 studies generated 57 observations. MCPs scored better than FFS plans on 10 of these, equally well on 25, and worse on 22. However, only 44 of these observations met the Miller-Luft criteria plus the coverage criterion. Four of these indicated that MCP care was better, 19 that MCP and FFS care were equivalent, and 21 that MCP care was worse. CONCLUSIONS: The small body of reliable studies comparing the quality of MCP care with that of FFS care indicates that the quality of care provided by MCPs tends to be equal or inferior to that provided by FFS plans. PMID:10394307

  17. Islam and family planning: changing perceptions of health care providers and medical faculty in Pakistan

    PubMed Central

    Mir, Ali Mohammad; Shaikh, Gul Rashida

    2013-01-01

    ABSTRACT A USAID-sponsored family planning project called “FALAH” (Family Advancement for Life and Health), implemented in 20 districts of Pakistan, aimed to lower unmet need for family planning by improving access to services. To enhance the quality of care offered by the public health system, the FALAH project trained 10,534 facility-based health care providers, managers, and medical college faculty members to offer client-centered family planning services, which included a module to explain the Islamic viewpoint on family planning developed through an iterative process involving religious scholars and public health experts. At the end of the FALAH project, we conducted a situation analysis of health facilities including interviews with providers to measure family planning knowledge of trained and untrained providers; interviewed faculty to obtain their feedback about the training module; and measured changes in women's contraceptive use through baseline and endline surveys. Trained providers had a better understanding of family planning concepts than untrained providers. In addition, discussions with trained providers indicated that the training module on Islam and family planning helped them to become advocates for family planning. Faculty indicated that the module enhanced their confidence about the topic of family planning and Islam, making it easier to introduce and discuss the issue with their students. Over the 3.5-year project period, which included several components in addition to the training activity, we found an overall increase of 9 percentage points in contraceptive prevalence in the project implementation districts—from 29% to 38%. The Islam and family planning module has now been included in the teaching program of major public-sector medical universities and the Regional Training Institutes of the Population Welfare Department. Other countries with sizeable Muslim populations and low contraceptive prevalence could benefit from this module

  18. Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study.

    PubMed

    Adams, Sherri; Cohen, Eyal; Mahant, Sanjay; Friedman, Jeremy N; Macculloch, Radha; Nicholas, David B

    2013-01-19

    The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child's major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC). This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data. A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC. Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models

  19. Basic nursing care: retrospective evaluation of communication and psychosocial interventions documented by nurses in the acute care setting.

    PubMed

    Juvé-Udina, Maria-Eulàlia; Pérez, Esperanza Zuriguel; Padrés, Núria Fabrellas; Samartino, Maribel Gonzalez; García, Marta Romero; Creus, Mònica Castellà; Batllori, Núria Vila; Calvo, Cristina Matud

    2014-01-01

    This study aimed to evaluate the frequency of psychosocial aspects of basic nursing care, as e-charted by nurses, when using an interface terminology. An observational, multicentre study was conducted in acute wards. The main outcome measure was the frequency of use of the psychosocial interventions in the electronic nursing care plans, analysed over a 12 month retrospective review. Overall, 150,494 electronic care plans were studied. Most of the intervention concepts from the interface terminology were used by registered nurses to illustrate the psychosocial aspects of fundamentals of care in the electronic care plans. The results presented help to demonstrate that the interventions of this interface terminology may be useful to inform psychosocial aspects of basic and advanced nursing care. The identification of psychosocial elements of basic nursing care in the nursing documentation may lead to obtain a deeper understanding of those caring interventions nurses consider essential to represent nurse-patient interactions. The frequency of psychosocial interventions may contribute to delineate basic and advanced nursing care. © 2013 Sigma Theta Tau International.

  20. Utilising advance care planning videos to empower perioperative cancer patients and families: a study protocol of a randomised controlled trial.

    PubMed

    Aslakson, Rebecca A; Isenberg, Sarina R; Crossnohere, Norah L; Conca-Cheng, Alison M; Yang, Ting; Weiss, Matthew; Volandes, Angelo E; Bridges, John F P; Roter, Debra L

    2017-06-06

    Despite positive health outcomes associated with advance care planning (ACP), little research has investigated the impact of ACP in surgical populations. Our goal is to evaluate how an ACP intervention video impacts the patient centredness and ACP of the patient-surgeon conversation during the presurgical consent visit. We hypothesise that patients who view the intervention will engage in a more patient-centred communication with their surgeons compared with patients who view a control video. Randomised controlled superiority trial of an ACP video with two study arms (intervention ACP video and control video) and four visits (baseline, presurgical consent, postoperative 1 week and postoperative 1 month). Surgeons, patients, principal investigator and analysts are blinded to the randomisation assignment. Single, academic, inner city and tertiary care hospital. Data collection began July 16, 2015 and continues to March 2017. Patients recruited from nine surgical oncology clinics who are undergoing major cancer surgery. In the intervention arm, patients view a patient preparedness video developed through extensive engagement with patients, surgeons and other stakeholders. Patients randomised to the control arm viewed an informational video about the hospital surgical programme. Primary Outcome: Patient centredness and ACP of patient-surgeon conversations during the presurgical consent visit as measured through the Roter Interaction Analysis System. patient Hospital Anxiety and Depression Scale score; patient goals of care; patient, companion and surgeon satisfaction; video helpfulness; medical decision maker designation; and the frequency patients watch the video. Intent-to-treat analysis will be used to assess the impact of video assignment on outcomes. Sensitivity analyses will assess whether there are differential effects contingent on patient or surgeon characteristics. This study has been approved by the Johns Hopkins School of Medicine institutional review

  1. The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care.

    PubMed

    Garden, Gill; Green, Suzanne; Pieniak, Susan; Gladman, John

    2016-04-01

    People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service >9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care. © 2016 Royal College of Physicians.

  2. Elements of progressive patient care in the Yale Health Plan HMO.

    PubMed

    Pearson, D A; Rowe, D S; Goldberg, B; Seigel, E

    1975-01-01

    The results of a study of the use of intermediate care beds in the intermediate care facility (ICF) of the Yale Health Plan, a prepaid group practice plan for students and an enrolled non-student population, indicate that the ICF may be a possible model for other health maintenance organizations. The ICF, with 30 beds in active use, is located in the Yale health center. Approximately one-third of the ICF patients would have been admitted to the affiliated short-term general hospital if the ICF did not exist. The plan's medical staff also has the option of transferring patients between the affiliated hospital and the ICF, depending on which institution is most appropriate for the patient's needs. A comparison of the levels of care provided in the ICF with those presented in selected articles from the progressive patient care literature revealed that the ICF is not only providing intermediate care but several other classic elements of progressive patient care -self care, continuing care, minimal care, and partial care.

  3. Elements of progressive patient care in the Yale Health Plan HMO.

    PubMed Central

    Pearson, D A; Rowe, D S; Goldberg, B; Seigel, E

    1975-01-01

    The results of a study of the use of intermediate care beds in the intermediate care facility (ICF) of the Yale Health Plan, a prepaid group practice plan for students and an enrolled non-student population, indicate that the ICF may be a possible model for other health maintenance organizations. The ICF, with 30 beds in active use, is located in the Yale health center. Approximately one-third of the ICF patients would have been admitted to the affiliated short-term general hospital if the ICF did not exist. The plan's medical staff also has the option of transferring patients between the affiliated hospital and the ICF, depending on which institution is most appropriate for the patient's needs. A comparison of the levels of care provided in the ICF with those presented in selected articles from the progressive patient care literature revealed that the ICF is not only providing intermediate care but several other classic elements of progressive patient care -self care, continuing care, minimal care, and partial care. PMID:805444

  4. Comparison of planned menus and centre characteristics with foods and beverages served in New York City child-care centres.

    PubMed

    Breck, Andrew; Dixon, L Beth; Kettel Khan, Laura

    2016-10-01

    The present study evaluated the extent to which child-care centre menus prepared in advance correspond with food and beverage items served to children. The authors identified centre and staff characteristics that were associated with matches between menus and what was served. Menus were collected from ninety-five centres in New York City (NYC). Direct observation of foods and beverages served to children were conducted during 524 meal and snack times at these centres between April and June 2010, as part of a larger study designed to determine compliance of child-care centres with city health department regulations for nutrition. Child-care centres were located in low-income neighbourhoods in NYC. Overall, 87 % of the foods and beverages listed on the menus or allowed as substitutions were served. Menu items matched with foods and beverages served for all major food groups by >60 %. Sweets and water had lower match percentages (40 and 32 %, respectively), but water was served 68 % of the time when it was not listed on the menu. The staff person making the food and purchasing decisions predicted the match between the planned or substituted items on the menus and the foods and beverages served. In the present study, child-care centre menus included most foods and beverages served to children. Menus planned in advance have potential to be used to inform parents about which child-care centre to send their child or what foods and beverages their enrolled children will be offered throughout the day.

  5. Comparison of planned menus and centre characteristics with foods and beverages served in New York City child-care centres

    PubMed Central

    Breck, Andrew; Dixon, L Beth; Khan, Laura Kettel

    2016-01-01

    Objective The present study evaluated the extent to which child-care centre menus prepared in advance correspond with food and beverage items served to children. The authors identified centre and staff characteristics that were associated with matches between menus and what was served. Design Menus were collected from ninety-five centres in New York City (NYC). Direct observation of foods and beverages served to children were conducted during 524 meal and snack times at these centres between April and June 2010, as part of a larger study designed to determine compliance of child-care centres with city health department regulations for nutrition. Setting Child-care centres were located in low-income neighbourhoods in NYC. Results Overall, 87% of the foods and beverages listed on the menus or allowed as substitutions were served. Menu items matched with foods and beverages served for all major food groups by > 60%. Sweets and water had lower match percentages (40 and 32%, respectively), but water was served 68% of the time when it was not listed on the menu. The staff person making the food and purchasing decisions predicted the match between the planned or substituted items on the menus and the foods and beverages served. Conclusions In the present study, child-care centre menus included most foods and beverages served to children. Menus planned in advance have potential to be used to inform parents about which child-care centre to send their child or what foods and beverages their enrolled children will be offered throughout the day. PMID:27280341

  6. Factors affecting long-term-care residents' decision-making processes as they formulate advance directives.

    PubMed

    Lambert, Heather C; McColl, Mary Ann; Gilbert, Julie; Wong, Jiahui; Murray, Gale; Shortt, Samuel E D

    2005-10-01

    The purpose of this study was to describe factors contributing to the decision-making processes of elderly persons as they formulate advance directives in long-term care. This study was qualitative, based on grounded theory. Recruitment was purposive and continued until saturation was reached. Nine residents of a long-term-care facility were interviewed by use of a semistructured format. Open and axial coding of interview transcripts were carried out and the factors contributing to the decision process were defined. Elders based their decisions primarily on information gathered from personal experiences with death and illness. They obtained very little information from professionals or the media. Major factors considered by elders as they weighed information included spiritual, emotional, and social considerations. The factors considered during the decision-making process were oriented more toward the individual's experiences and less on contributions from objective sources than anticipated. Decision making for advance directives is a highly personalized process. The approach of health professionals when assisting with end-of-life decision making should be planned with these contributing factors in mind, so that the services offered to the individuals in this population best meet their needs.

  7. Advance Care Planning for Older Homeless-Experienced Adults: Results from the Health Outcomes of People Experiencing Homelessness in Older Middle Age Study.

    PubMed

    Sudore, Rebecca L; Cuervo, Isabel Arellano; Tieu, Lina; Guzman, David; Kaplan, Lauren M; Kushel, Margot

    2018-05-09

    Older homeless-experienced adults have low engagement in advance care planning (ACP) despite high morbidity and mortality. We conducted a cross-sectional analysis of a cohort of 350 homeless-experienced adults aged 50 and older in Oakland, California. We assessed the prevalence of potential surrogate decision-makers, ACP contemplation, discussions, and ACP documentation (surrogate designation, advance directives). We used multivariable logistic regression to examine factors associated with ACP discussions and documentation. The median age of the cohort was 59 (range 52-82), 75.2% were male, and 82.1% were black. Sixty-one percent reported a potential surrogate, 21.5% had discussed ACP, and 19.0% reported ACP documentation. In multivariable models, having 1 to 5 confidants versus none (adjusted odds ratio (aOR)=5.8, 95% confidence interval (CI)=1.7-20.0), 3 or more chronic conditions versus none (aOR=2.3, 95% CI=0.9-5.6), and a recent primary care visit (aOR=2.1, 95% CI=1.0-4.4) were associated with higher odds of ACP discussions and each additional 5 years of homelessness (aOR=0.7, 95% CI=0.5-0.9) with lower odds. Having 1 to 5 confidants (aOR=5.0, 95% CI=1.4-17.5), being black (aOR=5.5, 95% CI=1.5-19.5), and having adequate versus limited literacy (aOR=7.0, 95% CI=1.5-32.4) were associated with higher odds of ACP documentation and illicit drug use (aOR=0.3, 95% CI=0.1-0.9) with lower odds. Although the majority of older homeless-experienced adults have a potential surrogate, few have discussed or documented their ACP wishes; the odds of both were greater with larger social networks. Future interventions must be customized for individuals with limited social networks and address the instability of homelessness, health literacy, and the constraints of safety-net healthcare settings. © 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.

  8. Changing workforce demographics necessitates succession planning in health care.

    PubMed

    Collins, Sandra K; Collins, Kevin S

    2007-01-01

    Health care organizations continue to be plagued by labor shortage issues. Further complicating the already existing workforce challenges is an aging population poised to retire en masse within the next few years. With fewer cohorts in the age group of 25 to 44 years (Vital Speeches Day. 2004:71:23-27), a more mobile workforce (Grow Your Own Leaders: How to Identify, Develop, and Retain Leadership Talent, 2002), and an overall reduction in the number of individuals seeking employment in the health care field (J Healthc Manag. 2003:48:6-11), the industry could be faced with an unmanageable number of vacant positions throughout the organization. Bracing for the potential impact of these issues is crucial to the ongoing business continuity of health care organization. Many health care organizations have embraced succession planning to combat the potential labor famine. However, the health care industry as a whole seems to lag behind other industries in terms of succession planning efforts (Healthc Financ Manage. 2005;59:64-67). This article seeks to provide health care managers with a framework for improving the systematic preparation of the next generation of managers by analyzing the succession planning process. The proposition of these models is to initiate and simplify the gap reduction between theoretical concepts and future organizational application.

  9. A patient-centered longitudinal care plan: vision versus reality

    PubMed Central

    Dykes, Patricia C; Samal, Lipika; Donahue, Moreen; Greenberg, Jeffrey O; Hurley, Ann C; Hasan, Omar; O'Malley, Terrance A; Venkatesh, Arjun K; Volk, Lynn A; Bates, David W

    2014-01-01

    Objective As healthcare systems and providers move toward meaningful use of electronic health records, longitudinal care plans (LCPs) may provide a means to improve communication and coordination as patients transition across settings. The objective of this study was to determine the current state of communication of LCPs across settings and levels of care. Materials and methods We conducted surveys and interviews with professionals from emergency departments, acute care hospitals, skilled nursing facilities, and home health agency settings in six regions in the USA. We coded the transcripts according to the Agency for Healthcare Research and Quality (AHRQ) ‘Broad Approaches’ to care coordination to understand the degree to which current practice meets the definition of an LCP. Results Participants (n=22) from all settings reported that LCPs do not exist in their current state. We found LCPs in practice, and none of these were shared or reconciled across settings. Moreover, we found wide variation in the types and formats of care plan information that was communicated as patients transitioned. The most common formats, even when care plan information was communicated within the same healthcare system, were paper and fax. Discussion These findings have implications for data reuse, interoperability, and achieving widespread adoption of LCPs. Conclusions The use of LCPs to support care transitions is suboptimal. Strategies are needed to transform the LCP from vision to reality. PMID:24996874

  10. Health Care Providers’ Attitudes and Practices Regarding the use of Advance Directives in a Military Health Care Setting

    DTIC Science & Technology

    1998-10-02

    PROVIDERS’ ATTITUDES AND PRACTICES REGARDING THE USE OF ADVANCE DIRECTIVES IN A MILITARY HEALTH CARE SETTING by Bridget L. Larew, Maj, USAF, NC Thesis...entitled: "HEALTH CARE PROVIDER’S ATTITUDES AND PRACTICES REGARDING THE PURPOSE AND USE OF ADVANCE DIRECTIVES IN A MILITARY HEALTH CARE SETTING" beyond...health care, recognized under State law (whether statutory or as recognized by the courts of the State) and relating to the provision of such care

  11. 14 CFR 151.119 - Advance planning proposals: Procedures; funding.

    Code of Federal Regulations, 2013 CFR

    2013-01-01

    ... 14 Aeronautics and Space 3 2013-01-01 2013-01-01 false Advance planning proposals: Procedures; funding. 151.119 Section 151.119 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... donated labor, materials, or equipment. ...

  12. 14 CFR 151.119 - Advance planning proposals: Procedures; funding.

    Code of Federal Regulations, 2014 CFR

    2014-01-01

    ... 14 Aeronautics and Space 3 2014-01-01 2014-01-01 false Advance planning proposals: Procedures; funding. 151.119 Section 151.119 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... donated labor, materials, or equipment. ...

  13. 14 CFR 151.119 - Advance planning proposals: Procedures; funding.

    Code of Federal Regulations, 2012 CFR

    2012-01-01

    ... 14 Aeronautics and Space 3 2012-01-01 2012-01-01 false Advance planning proposals: Procedures; funding. 151.119 Section 151.119 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... donated labor, materials, or equipment. ...

  14. 14 CFR 151.119 - Advance planning proposals: Procedures; funding.

    Code of Federal Regulations, 2011 CFR

    2011-01-01

    ... 14 Aeronautics and Space 3 2011-01-01 2011-01-01 false Advance planning proposals: Procedures; funding. 151.119 Section 151.119 Aeronautics and Space FEDERAL AVIATION ADMINISTRATION, DEPARTMENT OF... donated labor, materials, or equipment. ...

  15. Child Care and Education: The Critical Connection. Action Plan [and] Policy Statement.

    ERIC Educational Resources Information Center

    Child Care Action Campaign, New York, NY.

    This document presents the action plan of the Child Care Action Campaign (CCAC) for improving the quantity and quality of child care services. The document also provides a policy statement on linking education and child care efforts. The action plan describes CCAC's vision of a streamlined system providing child care to infants and toddlers,…

  16. Advanced Materials Laboratory User Test Planning Guide

    NASA Technical Reports Server (NTRS)

    Orndoff, Evelyne

    2012-01-01

    Test process, milestones and inputs are unknowns to first-time users of the Advanced Materials Laboratory. The User Test Planning Guide aids in establishing expectations for both NASA and non-NASA facility customers. The potential audience for this guide includes both internal and commercial spaceflight hardware/software developers. It is intended to assist their test engineering personnel in test planning and execution. Material covered includes a roadmap of the test process, roles and responsibilities of facility and user, major milestones, facility capabilities, and inputs required by the facility. Samples of deliverables, test article interfaces, and inputs necessary to define test scope, cost, and schedule are included as an appendix to the guide.

  17. Health literacy and health care spending and utilization in a consumer-driven health plan.

    PubMed

    Hardie, Nancy A; Kyanko, Kelly; Busch, Susan; Losasso, Anthony T; Levin, Regina A

    2011-01-01

    We examined health literacy and health care spending and utilization by linking responses of three health literacy questions to 2006 claims data of enrollees new to consumer-driven health plans (n = 4,130). Better health literacy on all four health literacy measures (three item responses and their sum) was associated with lower total health care spending, specifically, lower emergency department and inpatient admission spending (p < .05). Similarly, fewer inpatient admissions and emergency department visits were associated with higher adequate health literacy scores and better self-reports of the ability to read and learn about medical conditions (p-value <.05). Members with lower health literacy scores appear to use services more appropriate for advanced health conditions, although office visit rates were similar across the range of health literacy scores.

  18. Advance directives in psychiatric care: a narrative approach

    PubMed Central

    Widdershoven, G.; Berghmans, R.

    2001-01-01

    Advance directives for psychiatric care are the subject of debate in a number of Western societies. By using psychiatric advance directives (or so-called "Ulysses contracts"), it would be possible for mentally ill persons who are competent and with their disease in remission, and who want timely intervention in case of future mental crisis, to give prior authorisation to treatment at a later time when they are incompetent, have become non-compliant, and are refusing care. Thus the devastating consequences of recurrent psychosis could be minimised. Ulysses contracts raise a number of ethical questions. In this article the central issues of concern and debate are discussed from a narrative perspective. Ulysses contracts are viewed as elements of an ongoing narrative in which patient and doctor try to make sense of and get a hold on the recurrent crises inherent in the patient's psychiatric condition. Key Words: Medical ethics • narrative ethics • advance directives • psychiatry PMID:11314165

  19. Advance Care Planning: Experience of Women With Breast Cancer

    DTIC Science & Technology

    2006-07-01

    Dry mouth 402 781 1,183...shortness of breathcough weakness insomnia urinary frequency dry mouth pain fatigue vomiting -5 -4.5 -4 -3.5 -3 -2.5 -2 -1.5 -1 -0.5 0 Most Prevalent Least Prevalent Figure 2. Symptom prevalences according to the unconditional model. ...comorbidity. A previous study of 872 cancer patients admitted to ICU found that completion rates of advance directives were linked to stage and site

  20. A Planning Guide for Food Service in Child Care Centers.

    ERIC Educational Resources Information Center

    Food and Nutrition Service (USDA), Washington, DC.

    This publication is designed to help child care center directors and other personnel in programs receiving funding through the Child Care Food Program plan their food service. Included are sections on: (1) planning food for a day; (2) meal patterns (information on the necessary food groups, a chart of vegetables and fruits containing vitamin A, C…

  1. Building a New Model of Care for Rapid Breast Radiotherapy Treatment Planning: Evaluation of the Advanced Practice Radiation Therapist in Cavity Delineation.

    PubMed

    Lee, G; Dinniwell, R; Liu, F F; Fyles, A; Han, K; Conrad, T; Levin, W; Marshall, A; Purdie, T G; Koch, C A

    2016-12-01

    Breast radiotherapy treatment is commonly managed by a multidisciplinary team to ensure optimal delivery of care. We sought a new model of care whereby a clinical specialist radiation therapist (CSRT) delineates the cavity target for whole breast radiotherapy treatment planning and the radiation oncologist validates the contour during final plan review. This study evaluated the radiation oncologist's acceptance of these contours and identified characteristics of cavities suitable for CSRT-directed contouring. Following specialised breast oncology education and training by the radiation oncologist, the CSRT prospectively delineated cavities in 30 tangential breast radiotherapy cases and consulted the radiation oncologist in 'complex' cases but directed 'non-complex' cases for treatment planning. Changes to CSRT contours were evaluated using the conformity index. Breast density, time since surgery and cavity location, size and visualisation score [CVS: range 1 (no visible cavity) to 5 (homogenous cavity)] were captured. Of the 30 CSRT delineated cavities contours, the CSRT directed 20 (66.7%) cases for planning without radiation oncology review; 19 were accepted (without changes) by the radiation oncologist upon final plan review and one was changed by the radiation oncologist (conformity index = 0.93) for boost treatment and did not affect the tangential treatment plan. Ten (33.3%) cases, all CVS ≤ 3, were reviewed with the radiation oncologist before planning (conformity index = 0.88 ± 0.12). CVS was inversely correlated with breast density and cavity size (P < 0.01). The CSRT delineated cavities appropriate for clinical radiotherapy treatment planning in women with well-visualised cavities, whereas 'complex' cases with dense breast parenchyma, CVS ≤ 3, and/or cases needing boost radiotherapy treatment required review with the radiation oncologist before planning. Copyright © 2016 The Royal College of Radiologists. Published by Elsevier Ltd. All

  2. Complex Care Options for Patients With Advanced Heart Failure Approaching End of Life.

    PubMed

    Wordingham, Sara E; McIlvennan, Colleen K; Dionne-Odom, J Nicholas; Swetz, Keith M

    2016-02-01

    Care for patients with advanced cardiac disease continues to evolve in a complex milieu of therapeutic options, advanced technological interventions, and efforts at improving patient-centered care and shared decision-making. Despite improvements in quality of life and survival with these interventions, optimal supportive care across the advanced illness trajectory remains diverse and heterogeneous. Herein, we outline challenges in prognostication, communication, and caregiving in advanced heart failure and review the unique needs of patients who experience frequent hospitalizations, require chronic home inotropic support, and who have implantable cardioverter-defibrillators and mechanical circulatory support in situ, to name a few.

  3. Corporate buying of health care plans: a framework for marketing theory and practice.

    PubMed

    Lindenmuth, L J; Burger, P C

    1990-06-01

    Much of the research in health care plan and provider selection has focused on the patient's selection process. The authors report on the increasing need to understand the corporation's decision process in selecting health care plans and providers. Managed care marketers need to understand this process in order to design and market such plans successfully.

  4. [Cost of family planning care in 10-19 years old teenagers].

    PubMed

    Martínez-Ramírez, E A; Villarreal-Ríos, E; Vargas-Daza, E R; Galicia-Rodríguez, L; Martínez-González, L

    2016-09-01

    To identify the costs of family planning care in adolescents. Longitudinal study of the cost of care for family planning carried out in 2015 in a group of individuals with age limits of 10 and 19 years in a unit first level of health care in the state of Queretaro, Mexico. The profile of use of family planning (FP) was created for the teen was performed services through counseling, provision of contraception and review of intrauterine device (IUD) in a year; cost projections for the population of adolescents and different coverage scenarios between 5 and 100% were made. The average annual cost was 228.84 Mexican pesos. Ideally the identified cost was 2,708.94 pesos. The projection with 20 % coverage was 207,251,330 pesos. The average annual family planning consultations was 0.9. The most commonly used method was with medroxyprogesterone-estradiol at doses of 25 and 5 mg. The cost of planning in adolescents is low, taking into account the costs that the care of high-risk pregnancies and associated comorbidities.

  5. Nursing care dependence in the experiences of advanced cancer inpatients.

    PubMed

    Piredda, Michela; Bartiromo, Chiara; Capuzzo, Maria Teresa; Matarese, Maria; De Marinis, Maria Grazia

    2016-02-01

    Increasing burden of cancer in Europe and socio-demographic trends imply that more cancer patients will face high levels of dependency. Care dependency is often perceived as a distressing experience by cancer patients who are concerned about becoming a burden to others. The experience of care dependence has been scarcely investigated in advanced cancer patients, especially in the hospital setting. This study aimed at describing advanced cancer patients' experiences of care dependence in hospital and of the factors perceived by them as contributing to decrease or increase this dependence. The study used a descriptive phenomenological approach based on Husserl's (1913) life world perspective. Data collection and analysis followed Giorgi's (1997) five basic methodological steps. Data were gathered by semi-structured interviews with thirteen advanced cancer adult inpatients of a teaching hospital. The interviews were audio-recorded and the recordings transcribed word for word. Three themes emerged: 'dependency discovers new meanings of life', 'active coping with dependency' and 'the care cures the dependent person'. The essential meaning of care dependency was the possibility to become aware of being a person as both an object and subject of care. Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. Dependency is revealed as a natural experience, only partly in accordance with previous studies. Deeper insight into the meaning patients attach to care dependency can enable nurses to better meet the patient's needs, e.g. by improving caring relationships with patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

  6. Planning the Menu in the Child Care Center.

    ERIC Educational Resources Information Center

    Bomba, Anne K.; And Others

    1996-01-01

    Preschools provide a large proportion of children's daily food intake. This article guides child care center staff in understanding child nutrition guidelines and translating good nutrition into meal planning. It contains resources for menu planning, cooking, and food safety and includes specific recipes, a weekly meal planner, and contacts for…

  7. Planning for Students with Complex Health Care Needs.

    ERIC Educational Resources Information Center

    Lowman, Dianne Koontz

    1997-01-01

    This article discusses the efforts of Virginia school divisions as they prepared for and received students with complex health care needs. Findings from four studies that interviewed early childhood special education teachers and occupational therapies are described. The need for team planning and the development of a Health Services Plan is…

  8. Timeliness of Care Planning upon Initiation of Chronic Opioid Therapy for Chronic Pain.

    PubMed

    Von Korff, Michael; Turner, Judith A; Shortreed, Susan M; Saunders, Kathleen; Rosenberg, Dori; Thielke, Stephen; LeResche, Linda

    2016-03-01

    Chronic opioid therapy (COT) guidelines recommend developing a COT care plan at the initiation of COT. Assess the timeliness of care planning upon initiation of COT. Observational cohort study in a setting incentivizing and tracking documentation of COT care plans in electronic health records (EHRs). Study participants (N = 896) were aged 45 years or older, had initiated an episode of opioid use within the prior 6 months, and reported regular use of prescription analgesics when screened for a baseline interview about 3 months after an index opioid prescription MEASURES: A timely care plan was defined by an EHR documented care plan prior to or within 4 months after the index opioid prescription. Among COT initiators, 30% had a timely COT care plan documented in the EHR within 4 months following index prescription, while 51% had a documented COT care plan within 12 months following index prescription. Among those interviewed at 1 year follow-up (N = 735), 252 (34.2%) reported opioid use on 7 or more days in the prior 2 weeks. Less than half (45.6%) of the 252 individuals who sustained regular opioid use at 1 year had predicted at baseline that it was somewhat, very, or extremely likely they would be using opioids regularly in 1 year. Patients initiating COT were unlikely to have timely COT care plans. Many who sustained regular opioid use at 1 year had not anticipated using opioids long term. © 2015 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  9. Is health systems integration being advanced through Local Health District planning?

    PubMed

    Saunders, Carla; Carter, David J

    2017-05-01

    Objective Delivering genuine integrated health care is one of three strategic directions in the New South Wales (NSW) Government State Health Plan: Towards 2021. This study investigated the current key health service plan of each NSW Local Health District (LHD) to evaluate the extent and nature of health systems integration strategies that are currently planned. Methods A scoping review was conducted to identify common key principles and practices for successful health systems integration to enable the development of an appraisal tool to content assess LHD strategic health service plans. Results The strategies that are planned for health systems integration across LHDs focus most often on improvements in coordination, health care access and care delivery for complex at-risk patients across the care continuum by both state- and commonwealth-funded systems, providers and agencies. The most common reasons given for integrated activities were to reduce avoidable hospitalisation, avoid inappropriate emergency department attendance and improve patient care. Conclusions Despite the importance of health systems integration and finding that all NSW LHDs have made some commitment towards integration in their current strategic health plans, this analysis suggests that health systems integration is in relatively early development across NSW. What is known about the topic? Effective approaches to managing complex chronic diseases have been found to involve health systems integration, which necessitates sound communication and connection between healthcare providers across community and hospital settings. Planning based on current health systems integration knowledge to ensure the efficient use of scarce resources is a responsibility of all health systems. What does this paper add? Appropriate planning and implementation of health systems integration is becoming an increasingly important expectation and requirement of effective health systems. The present study is the first of

  10. Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes.

    PubMed

    Watson, Julie

    2016-12-06

    People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed. © The Author(s) 2016.

  11. 'Who's actually gonna read this?' An evaluation of staff experiences of the value of information contained in written care plans in supporting care in three different dementia care settings.

    PubMed

    Drummond, C; Simpson, A

    2017-08-01

    WHAT IS KNOWN ON THE SUBJECT?: A written plan is designed to improve communication and co-ordinate care between mental health inpatient wards and community settings. Reports of care plan quality issues and staff and service user dissatisfaction with healthcare bureaucracy have focused on working age mental health or general hospital settings. Little is known about mental health staff perspectives on the value of written care plans in supporting dementia care. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Competing demands on staff time and resources to meet administrative standards for care plans caused a tension with their own professional priorities for supporting care. Mental health staff face difficulties using electronic records alongside other systems of information sharing. Further exploration is needed of the gap between frontline staff values and those of the local organization and managers when supporting good dementia care. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Frontline staff should be involved in designing new information systems including care plans. Care plan documentation needs to be refocused to ensure it is effective in enabling staff to communicate amongst themselves and with others to support people with dementia. Practice-based mentors could be deployed to strengthen good practice in effective information sharing. Background Reports of increased healthcare bureaucracy and concerns over care plan quality have emerged from research and surveys into staff and service user experiences. Little is known of mental health staff perspectives on the value of written care plans in supporting dementia care. Aim To investigate the experiences and views of staff in relation to care planning in dementia services in one National Health Service (NHS) provider Trust in England. Method Grounded Theory methodology was used. A purposive sample of 11 multidisciplinary staff were interviewed across three sites in one NHS Trust. Interviews were transcribed, coded

  12. Implementation of a quality improvement programme to support advance care planning in five hospitals across a health region.

    PubMed

    Schofield, G; Kreeger, L; Meyer, M; Swann, D; Wijeratne, A; Wood, J; Stone, P

    2015-03-01

    Advance care planning (ACP) can help patients with a terminal illness to prepare for the end of their lives. This report describes a regional service improvement initiative to increase the identification of hospital inpatients at this stage in their illnesses and to increase the number of such patients who are offered the opportunity to start the process of ACP. Data were collected prospectively over a 7 month period from four acute hospital trusts and a specialist cancer centre in the South-West London region. Each unit identified a specific patient population who were screened for eligibility to engage in the process of ACP. Data concerning the reasons for eligibility, the suitability for discussion and the various reasons why patients did not complete the process, were recorded. Over a 7 month period 1980 patients were screened and 559 (28.2%) were found to be potentially eligible for an ACP discussion. Of these 227/559 (40.6%) were deemed suitable for a discussion by medical staff. The majority of these patients (195/227; 86%) were offered the opportunity to undergo ACP discussions and 144/195 (73.8%) agreed to begin the process of ACP. This report shows that a targeted approach can result in increased uptake in the number of patients who engage in ACP. However, systematic identification of potentially eligible patients requires a significant investment of clinical time and resources. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  13. Justice in Health Care Decision-Making: Patients’ Appraisals of Health Care Providers and Health Plan Representatives

    PubMed Central

    Fondacaro, Mark; Frogner, Bianca; Moos, Rudolf

    2010-01-01

    This study describes the development of two versions of a Health Care Justice Inventory (HCJI). One version focuses on patients’ interactions with their providers (HCJI-P) and the other focuses on patients’ interactions with the representatives of their health plans (HCJI-HP). Each version of the HCJI assesses patients’ appraisals of their interactions (with either their Provider or representatives of their Health Plan) along three common dimensions of procedural justice: Trust, Impartiality, and Participation. Both the Provider and Health Plan scales assess indices that are relatively independent of patients’ demographic characteristics. In addition, patients’ appraisals of their interactions with their provider were only moderately related to their appraisals of their interactions with representatives of their health plan, indicating that the Provider and Health Plan scales tap distinct aspects of patients’ overall experience with the health care system. Overall, procedural justice dimensions were significantly related to patient satisfaction in both the Provider and the Health Plan contexts. As predicted, procedural justice factors were more strongly tied to patient satisfaction in the Provider than in the Health Plan context, and health care decisions based on distributive justice principles of Need (rather than Equity or Equality) were most closely tied to patient satisfaction in both contexts. PMID:16021741

  14. Cancer Survivorship Care Plan Utilization and Impact on Clinical Decision-Making at Point-of-Care Visits with Primary Care: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

    PubMed

    Donohue, SarahMaria; Haine, James E; Li, Zhanhai; Feldstein, David A; Micek, Mark; Trowbridge, Elizabeth R; Kamnetz, Sandra A; Sosman, James M; Wilke, Lee G; Sesto, Mary E; Tevaarwerk, Amye J

    2017-11-02

    Every cancer survivor and his/her primary care provider should receive an individualized survivorship care plan (SCP) following curative treatment. Little is known regarding point-of-care utilization at primary care visits. We assessed SCP utilization in the clinical context of primary care visits. Primary care physicians and advanced practice providers (APPs) who had seen survivors following provision of an SCP were identified. Eligible primary care physicians and APPs were sent an online survey, evaluating SCP utilization and influence on decision-making at the point-of-care, accompanied by copies of the survivor's SCP and the clinic note. Eighty-eight primary care physicians and APPs were surveyed November 2016, with 40 (45%) responding. Most respondents (60%) reported discussing cancer or related issues during the visit. Information needed included treatment (66%) and follow-up visits, and the cancer team was responsible for (58%) vs primary care (58%). Respondents acquired this information by asking the patient (79%), checking oncology notes (75%), the SCP (17%), or online resources (8%). Barriers to SCP use included being unaware of the SCP (73%), difficulty locating it (30%), and finding needed information faster via another mechanism (15%). Despite largely not using the SCP for the visit (90%), most respondents (61%) believed one would be quite or very helpful for future visits. Most primary care visits included discussion of cancer or cancer-related issues. SCPs may provide the information necessary to deliver optimal survivor care but efforts are needed to reduce barriers and design SCPs for primary care use.

  15. Web-based collaboration in individual care planning challenges the user and the provider roles – toward a power transition in caring relationships

    PubMed Central

    Bjerkan, Jorunn; Vatne, Solfrid; Hollingen, Anne

    2014-01-01

    Background and objective The Individual Care Plan (ICP) was introduced in Norway to meet new statutory requirements for user participation in health care planning, incorporating multidisciplinary and cross-sector collaboration. A web-based solution (electronic ICP [e-ICP]) was used to support the planning and documentation. The aim of this study was to investigate how web-based collaboration challenged user and professional roles. Methods Data were obtained from 15 semistructured interviews with users and eight with care professionals, and from two focus-group interviews with eight care professionals in total. The data were analyzed using systematic text condensation in a stepwise analysis model. Results Users and care professionals took either a proactive or a reluctant role in e-ICP collaboration. Where both user and care professionals were proactive, the pairing helped to ensure that the planning worked well; so did pairings of proactive care professionals and reluctant users. Proactive users paired with reluctant care professionals also made care planning work, thanks to the availability of information and the users’ own capacity or willingness to conduct the planning. Where both parties were reluctant, no planning activities occurred. Conclusion Use of the e-ICP challenged the user–professional relationship. In some cases, a power transition took place in the care process, which led to patient empowerment. This knowledge might be used to develop a new understanding of how role function can be challenged when users and care professionals have equal access to health care documentation and planning tools. PMID:25525367

  16. Advance directives in intensive care: Health professional competences.

    PubMed

    Velasco-Sanz, T R; Rayón-Valpuesta, E

    2016-04-01

    To identify knowledge, skills and attitudes among physicians and nurses of adults' intensive care units (ICUs), referred to advance directives or living wills. A cross-sectional descriptive study was carried out. Nine hospitals in the Community of Madrid (Spain). Physicians and nurses of adults' intensive care. A qualitative Likert-type scale and multiple response survey were made. Knowledge, skills and attitudes about the advance directives. A descriptive statistical analysis based on percentages was made, with application of the chi-squared test for comparisons, accepting p < 0.05 as representing statistical significance. A total of 331 surveys were collected (51%). It was seen that 90.3% did not know all the measures envisaged by the advance directives. In turn, 50.2% claimed that the living wills are not respected, and 82.8% believed advance directives to be a useful tool for health professionals in the decision making process. A total of 85.3% the physicians stated that they would respect a living will, in cases of emergencies, compared to 66.2% of the nursing staff (p = 0.007). Lastly, only 19.1% of the physicians and 2.3% of the nursing staff knew whether their patients had advance directives (p < 0.001). Although health professionals displayed poor knowledge of advance directives, they had a favorable attitude toward their usefulness. However, most did not know whether their patients had a living will, and some professionals even failed to respect such instructions despite knowledge of the existence of advance directives. Improvements in health professional education in this field are needed. Copyright © 2015 Elsevier España, S.L.U. and SEMICYUC. All rights reserved.

  17. Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors.

    PubMed

    Hill-Kayser, Christine E; Vachani, Carolyn C; Hampshire, Margaret K; Di Lullo, Gloria; Jacobs, Linda A; Metz, James M

    2013-11-01

    Survivorship care plans (SCP) are currently recommended by the Institute of Medicine, and will soon be required for accreditation by the American College of Surgeons Commission on Cancer. To the best of the authors' knowledge, the impact of SCPs on cancer survivors has not been previously reported. In 2007, the authors created an Internet tool for the creation of SCPs that provides customized guidelines for survivorship care. Users are sent a voluntary follow-up survey 1 month after initial use. From May 2010 through January 2013, 8690 cancer survivors used the SCP tool. The most common diagnoses were breast (45%), hematologic (12%), and gastrointestinal (11%) cancers; the median age of the survivors was 51 years. Of these, 875 (10%) respondents provided information for future electronic contact and 298 responded to a 1-month follow-up survey. They reported that the information provided was "good" to "excellent" in 93% of cases, and new in 65% of cases. With regard to the emotional impact of the SCP, 62% of responding survivors believed that it provided "just enough" information, 72% felt "more informed," and 94% believed they would recommend it to others. The majority of respondents (63%) thought that the SCP changed their health care participation, and 80% shared/planned to share it with their health care team. Of those survivors who had done so, 80% reported that it improved communication with their health care providers. Greater than one-half of survey users (54%) reported that they had made or planned to make a lifestyle change in response to the SCP, most commonly dietary modification and increased exercise. Survivorship care plans are useful vehicles with which to promote lifestyle and behavioral changes, and to assist survivors with communication with health care providers. These findings support recommendations from the Institute of Medicine and the American College of Surgeons Commission on Cancer. © 2013 American Cancer Society.

  18. Psychometric Testing of the Self-Efficacy for Interdisciplinary Plans of Care Scale.

    PubMed

    Molle, Elizabeth; Froman, Robin

    2017-01-01

    Computerized interdisciplinary plans of care have revitalized nurse-centric care plans into dynamic and meaningful electronic documents. To maximize the benefits of these documents, it is important to understand healthcare professionals' attitudes, specifically their confidence, for making computerized interdisciplinary care plans useful and meaningful documents. The purpose of the study was to test the psychometric properties of the Self-Efficacy for Interdisciplinary Plans of Care instrument intended to measure healthcare professionals' self-efficacy for using such documents. Content validity was assessed by an expert review panel. Content validity indices ranged from 0.75 to 1.00, with a scale CVI of 0.94. A sample of 389 healthcare providers completed the 14-item instrument. Principal axis factoring was used to assess factor structure. The exploratory factor analysis yielded a single-factor structure accounting for 71.76% of covariance. Cronbach internal consistency coefficient for the single factor solution was .97. The corrected item-total correlations ranged from 0.71 to 0.90. The coefficient of stability, during a 2-week period, with a subset of the sample (n = 38), was estimated at 0.82. The results of this study suggest that the Self-Efficacy for Interdisciplinary Plans of Care has sturdy reliability and validity for measuring the self-efficacy of healthcare providers to make computerized interdisciplinary plans of care meaningful and useful documents.

  19. Preconception care: promoting reproductive planning

    PubMed Central

    2014-01-01

    Introduction Preconception care recognizes that many adolescent girls and young women will be thrust into motherhood without the knowledge, skills or support they need. Sixty million adolescents give birth each year worldwide, even though pregnancy in adolescence has mortality rates at least twice as high as pregnancy in women aged 20-29 years. Reproductive planning and contraceptive use can prevent unintended pregnancies, unsafe abortions and sexually-transmitted infections in adolescent girls and women. Smaller families also mean better nutrition and development opportunities, yet 222 million couples continue to lack access to modern contraception. Method A systematic review and meta-analysis of the evidence was conducted to ascertain the possible impact of preconception care for adolescents, women and couples of reproductive age on MNCH outcomes. A comprehensive strategy was used to search electronic reference libraries, and both observational and clinical controlled trials were included. Cross-referencing and a separate search strategy for each preconception risk and intervention ensured wider study capture. Results Comprehensive interventions can prevent first pregnancy in adolescence by 15% and repeat adolescent pregnancy by 37%. Such interventions should address underlying social and community factors, include sexual and reproductive health services, contraceptive provision; personal development programs and emphasizes completion of education. Appropriate birth spacing (18-24 months from birth to next pregnancy compared to short intervals <6 months) can significantly lower maternal mortality, preterm births, stillbirths, low birth weight and early neonatal deaths. Conclusion Improving adolescent health and preventing adolescent pregnancy; and promotion of birth spacing through increasing correct and consistent use of effective contraception are fundamental to preconception care. Promoting reproductive planning on a wider scale is closely interlinked with the

  20. Comparison of patients' and health care professionals' attitudes towards advance directives.

    PubMed Central

    Blondeau, D; Valois, P; Keyserlingk, E W; Hébert, M; Lavoie, M

    1998-01-01

    OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, justice, external norms, and the affective dimension. SETTING: Health care institutions in the province of Québec, Canada. Survey sample: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy. PMID:9800589