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

Differential Patient-Caregiver Opinions of Treatment and Care For Advanced Lung Cancer Patients

PubMed Central

Zyzanski, Stephen J; Siminoff, Laura A

2010-01-01

This study examined the differences of opinion between cancer patients and caregivers with regard to treatment and care decisions. 184 advanced lung cancer patients and 171 primary caregivers were recruited as a convenience sample from clinics in Cleveland, Ohio. A telephone interview was conducted to collect data using a semi-structured questionnaire. Nonparametric tests and regression analysis were performed. The findings showed that patients and caregivers reported significant disagreement on three main issues: trade-off between treatment side effects and benefits; reporting treatment side effects to physicians, and hospice care. Caregivers were more concerned about patient’s quality of life and more willing to discuss hospice issues than were patients. Perceived family disagreement is associated with depression in both patients and caregivers. The study provided empirical evidence for patient-caregiver disagreement about treatment and care decisions and its significant adverse impact on both patients and caregivers. PMID:20137849

Perceptions of palliative care among patients with advanced cancer and their caregivers

PubMed Central

Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

2016-01-01

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801

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

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

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.

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.

Unmet spiritual care needs impact emotional and spiritual well-being in advanced cancer patients.

PubMed

Pearce, Michelle J; Coan, April D; Herndon, James E; Koenig, Harold G; Abernethy, Amy P

2012-10-01

Spiritual care is an important part of healthcare, especially when facing the crisis of advanced cancer. Do oncology inpatients receive spiritual care consistent with their needs? When inconsistent, are there deleterious effects on patient outcomes? Patients with advanced cancer (N = 150) were surveyed during their inpatient stay at a southeastern medical center using validated instruments documenting spirituality, quality of life, mood, and satisfaction with care. Relationships between the receipt of less spiritual care than desired and patient outcomes were examined. Almost all patients had spiritual needs (91%) and the majority desired and received spiritual care from their healthcare providers (67%; 68%), religious community (78%; 73%), and hospital chaplain (45%; 36%). However, a significant subset received less spiritual care than desired from their healthcare providers (17%), religious community (11%), and chaplain (40%); in absolute terms, the number who received less care than desired from one or more sources was substantial (42 of 150). Attention to spiritual care would improve satisfaction with care while hospitalized for 35% of patients. Patients who received less spiritual care than desired reported more depressive symptoms [adjusted β (SE) = 1.2 (0.47), p = 0.013] and less meaning and peace [adjusted β (SE) = -2.37 (1.15), p = 0.042]. A substantial minority of patients did not receive the spiritual care they desired while hospitalized. When spiritual needs are not met, patients are at risk of depression and reduced sense of spiritual meaning and peace. Spiritual care should be matched to cancer patients' needs.

Holistic health care: Patients' experiences of health care provided by an Advanced Practice Nurse

PubMed Central

Lindblad, Monica; Möller, Ulrika

2017-01-01

Abstract Introduction Advanced Practice Nurse (APN) is a fairly new role in the Swedish health care system. Aim To describe patients' experiences of health care provided by an APN in primary health care. Methods An inductive, descriptive qualitative approach with qualitative open‐ended interviews was chosen to obtain descriptions from 10 participants regarding their experiences of health care provided by an APN. The data were collected during the spring 2012, and a qualitative approach was used for analyze. Results The APNs had knowledge and skills to provide safe and secure individual and holistic health care with high quality, and a respectful and flexible approach. The APNs conveyed trust and safety and provided health care that satisfied the patients' needs of accessibility and appropriateness in level of care. Conclusion The APNs way of providing health care and promoting health seems beneficial in many ways for the patients. The individual and holistic approach that characterizes the health care provided by the APNs is a key aspect in the prevailing change of health care practice. The transfer of care and the increasing number of older adults, often with a variety of complex health problems, call for development of the new role in this context. PMID:29071766

Holistic health care: Patients' experiences of health care provided by an Advanced Practice Nurse.

PubMed

Eriksson, Irene; Lindblad, Monica; Möller, Ulrika; Gillsjö, Catharina

2018-02-01

Advanced Practice Nurse (APN) is a fairly new role in the Swedish health care system. To describe patients' experiences of health care provided by an APN in primary health care. An inductive, descriptive qualitative approach with qualitative open-ended interviews was chosen to obtain descriptions from 10 participants regarding their experiences of health care provided by an APN. The data were collected during the spring 2012, and a qualitative approach was used for analyze. The APNs had knowledge and skills to provide safe and secure individual and holistic health care with high quality, and a respectful and flexible approach. The APNs conveyed trust and safety and provided health care that satisfied the patients' needs of accessibility and appropriateness in level of care. The APNs way of providing health care and promoting health seems beneficial in many ways for the patients. The individual and holistic approach that characterizes the health care provided by the APNs is a key aspect in the prevailing change of health care practice. The transfer of care and the increasing number of older adults, often with a variety of complex health problems, call for development of the new role in this context. © 2017 The Authors. International Journal of Nursing Practice Published by John Wiley & Sons Australia, Ltd.

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.

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.

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.

Importance of direct patient care in advanced pharmacy practice experiences.

PubMed

Rathbun, R Chris; Hester, E Kelly; Arnold, Lindsay M; Chung, Allison M; Dunn, Steven P; Harinstein, Lisa M; Leber, Molly; Murphy, Julie A; Schonder, Kristine S; Wilhelm, Sheila M; Smilie, Kristine B

2012-04-01

The Accreditation Council for Pharmacy Education issued revised standards (Standards 2007) for professional programs leading to the Doctor of Pharmacy degree in July 2007. The new standards require colleges and schools of pharmacy to provide pharmacy practice experiences that include direct interaction with diverse patient populations. These experiences are to take place in multiple practice environments (e.g., community, ambulatory care, acute care medicine, specialized practice areas) and must include face-to-face interactions between students and patients, and students and health care providers. In 2009, the American College of Clinical Pharmacy (ACCP) identified concerns among their members that training for some students during the fourth year of pharmacy curriculums are essentially observational experiences rather than encounters where students actively participate in direct patient care activities. These ACCP members also stated that there is a need to identify effective mechanisms for preceptors to balance patient care responsibilities with students' educational needs in order to fully prepare graduates for contemporary, patient-centered practice. The 2010 ACCP Educational Affairs Committee was charged to provide recommendations to more effectively foster the integration of pharmacy students into direct patient care activities during advanced pharmacy practice experiences (APPEs). In this commentary, the benefits to key stakeholders (pharmacy students, APPE preceptors, clerkship sites, health care institutions, academic pharmacy programs) of this approach are reviewed. Recommendations for implementation of direct patient care experiences are also provided, together with discussion of the practical issues associated with delivery of effective APPE. Examples of ambulatory care and acute care APPE models that successfully integrate pharmacy students into the delivery of direct patient care are described. Enabling students to engage in high-quality patient care

Innovative Advances in Connectivity and Community Pharmacist Patient Care Services: Implications for Patient Safety.

PubMed

Bacci, Jennifer L; Berenbrok, Lucas A

2018-06-07

The scope of community pharmacy practice has expanded beyond the provision of drug product to include the provision of patient care services. Likewise, the community pharmacist's approach to patient safety must also expand beyond prevention of errors during medication dispensing to include optimization of medications and prevention of adverse events throughout the entire medication use process. Connectivity to patient data and other healthcare providers has been a longstanding challenge in community pharmacy with implications for the delivery and safety of patient care. Here, we describe three innovative advances in connectivity in community pharmacy practice that enhance patient safety in the provision of community pharmacist patient care services across the entire medication use process. Specifically, we discuss the growing use of immunization information systems, quality improvement platforms, and health information exchanges in community pharmacy practice and their implications for patient safety. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

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.

Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol.

PubMed

Teo, Irene; Singh, Ratna; Malhotra, Chetna; Ozdemir, Semra; Dent, Rebecca A; Kumarakulasinghe, Nesaretnam Barr; Yeo, Wee Lee; Cheung, Yin Bun; Malhotra, Rahul; Kanesvaran, Ravindran; Yee, Alethea Chung Pheng; Chan, Noreen; Wu, Huei Yaw; Chin, Soh Mun; Allyn, Hum Yin Mei; Yang, Grace Meijuan; Neo, Patricia Soek Hui; Nadkarni, Nivedita V; Harding, Richard; Finkelstein, Eric A

2018-04-23

Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency. This cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients' death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient. The study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore's National Strategy for Palliative Care which

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.

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.

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

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.

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.

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.

Advance directives: survey of primary care patients.

PubMed

O'Sullivan, Rory; Mailo, Kevin; Angeles, Ricardo; Agarwal, Gina

2015-04-01

To establish the prevalence of patients with advance directives in a family practice, and to describe patients' perspectives on a family doctor's role in initiating discussions about advance directives. A self-administered patient questionnaire. A busy urban family medicine teaching clinic in Hamilton, Ont. A convenience sample of adult patients attending the clinic over the course of a typical business week. The prevalence of advance directives in the patient population was determined, and the patients' expectations regarding the role of their family doctors were elucidated. The survey population consisted of 800 participants (a response rate of 72.5%) well distributed across age groups; 19.7% had written advance directives and 43.8% had previously discussed the topic of advance directives, but only 4.3% of these discussions had occurred with family doctors. In 5.7% of cases, a family physician had raised the issue; 72.3% of respondents believed patients should initiate the discussion. Patients who considered advance directives extremely important were significantly more likely to want their family doctors to start the conversation (odds ratio 3.98; P < .05). Advance directives were not routinely addressed in the family practice. Most patients preferred to initiate the discussion of advance directives. However, patients who considered the subject extremely important wanted their family doctors to initiate the discussion. Copyright© the College of Family Physicians of Canada.

Home Palliative Care for Patients with Advanced Chronic Kidney Disease: Preliminary Results

PubMed Central

Teruel, José L.; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando

2015-01-01

Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams. PMID:27417813

[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.

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.

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.

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.

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).

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.

Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2017-10-01

Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

'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

A Pilot Trial of Early Specialty Palliative Care for Patients with Advanced Pancreatic Cancer: Challenges Encountered and Lessons Learned.

PubMed

Schenker, Yael; Bahary, Nathan; Claxton, Rene; Childers, Julie; Chu, Edward; Kavalieratos, Dio; King, Linda; Lembersky, Barry; Tiver, Greer; Arnold, Robert M

2018-01-01

Patients with advanced pancreatic cancer suffer from high morbidity and mortality. Specialty palliative care may improve quality of life. Assess the feasibility, acceptability, and perceived effectiveness of early specialty physician-led palliative care for patients with advanced pancreatic cancer and their caregivers. A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized (2:1) to receive specialty palliative care, in addition to standard oncology care versus standard oncology care alone. At a National Cancer Institute-designated comprehensive cancer center in Western Pennsylvania, 30 patients with advanced pancreatic adenocarcinoma and their caregivers (N = 30), oncologists (N = 4), and palliative care physicians (N = 3) participated. Feasibility (enrollment, three-month outcome-assessment, and intervention completion rates), acceptability, and perceived effectiveness (process interviews with patients, caregivers, and physicians). Consent:approach rate was 49%, randomized:consent rate 55%, and three-month outcome assessment rate 75%. Two patients and three caregivers withdrew early. The three-month mortality rate was 13%. Patients attended a mean of 1.3 (standard deviation 1.1) palliative care visits during the three-month period. Positive experiences with palliative care included receiving emotional support and symptom management. Negative experiences included inconvenience, long travel times, spending too much time at the cancer center, and no perceived palliative care needs. Physicians suggested embedding palliative care within oncology clinics, tailoring services to patient needs, and facilitating face-to-face communication between oncologists and palliative physicians. A randomized trial of early palliative care for advanced pancreatic cancer did not achieve feasibility goals. Integrating palliative care within oncology clinics may increase acceptability and perceived effectiveness.

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.

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.

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.

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

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.

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

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.

'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.

Patient engagement and patient-centred care in the management of advanced chronic kidney disease and chronic kidney failure.

PubMed

Bear, Robert Allan; Stockie, Suzanne

2014-01-01

The purpose of this article is to review the current status of patient-centred care (PCC) and patient engagement (PE) in the management of patients with advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD), to identify some of the barriers that exist to the achievement of PCC and PE, and to describe how these barriers can be overcome. The review is based on the professional experience of one of the authors (RB) as a Nephrologist and health care consultant, on the MBA thesis of one of the authors (SS) and on a review of pertinent internet-based information and published literature. Evidence exists that, currently, the care of patients with advanced CKD and ESRD is not fully patient-centred or fully supportive of PE. A number of barriers exist, including: conflict with other priorities; lack of training and fear of change; the unequal balance of power between patients and providers; physician culture and behaviour; the fee-for-service model of physician compensation; slow implementation of electronic health records; and, fear of accountability. These barriers can be overcome by committed leadership and the development of an information-based implementation plan. Established Renal Agencies in Canada appear interested in facilitating this work by collaborating in the development of a toolkit of recommended educational resources and preferred implementation practices for use by ESRD Programs. A limitation of this review is the absence of a substantial pre-existing literature on this topic. Receiving care that is patient-centred and that promotes PE benefits patients with serious chronic diseases such as advanced CKD and ESRD. Considerable work is required by ESRD Programs to ensure that such care is provided. Canadian Renal Agencies can play an important role by ensuring that ESRD Programs have access to essential educational material and proven implementation approaches and that implementation successes are celebrated. In this area, enabling

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

Current advances in targeted therapies for metastatic gastric cancer: improving patient care.

PubMed

Aguiar, Pedro Nazareth; Muniz, Thiago Pimentel; Miranda, Raelson Rodrigues; Tadokoro, Hakaru; Forones, Nora Manoukian; Monteiro, Ines-de-Paula; Castelo-Branco, Pedro; Janjigian, Yelena Y; De Mello, Ramon Andrade

2016-03-01

In this article, we review the literature on the current advances in targeted therapies for metastatic gastric cancer aimed at improving patient care. We conclude that the key to guiding targeted therapy is individual biomarkers, which are not completely elucidated. HER2 overexpression is the only predictive biomarker currently in use. Furthermore, it is necessary to understand that gastric tumors are heterogeneous; therefore, is impossible to evaluate a novel biological compound without evaluating personal biomarkers. The selection of patients who are able to receive each treatment is paramount for improving advanced gastric cancer survival and reducing unnecessary costs.

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.

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.

Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer

PubMed Central

Sharma, Rashmi K.; Cameron, Kenzie A.; Chmiel, Joan S.; Von Roenn, Jamie H.; Szmuilowicz, Eytan; Prigerson, Holly G.; Penedo, Frank J.

2015-01-01

Purpose Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients and Methods Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. Results A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Conclusion Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. PMID:26324373

Care at home of the patient with advanced multiple sclerosis--part 2.

PubMed

Reitman, Nancy Clayton

2010-05-01

Clinicians caring for patients with advanced MS have choices of different options and approaches. Whatever path is chosen, interventions must incorporate the wishes and capabilities of the patient and be supported by the care team, usually led by the nurse. As the work of the great psychologist Abraham Maslow has shown, in his famous "hierarchy of needs," the basic levels of needs must be met before the highest self-actualization can be accomplished (Maslow, 1943). This is equally true in the nursing care of very ill patients, as authors Zalenski and Raspa write: "The five levels of the hierarchy of needs as adapted to palliative care are: (1) distressing symptoms, such as pain or dyspnea; (2) fears for physical safety, of dying or abandonment; (3) affection, love and acceptance in the face of devastating illness; (4) esteem, respect, and appreciation for the person; (5) self-actualization and transcendence. Maslow's modified hierarchy of palliative care needs could be utilized to provide a comprehensive approach for the assessment of patients' needs and the design of interventions to achieve goals that start with comfort and potentially extend to the experience of transcendence."(Zalenski & Raspa, 2006, p.1120).

Addressing Spirituality Within the Care of Patients at the End of Life: Perspectives of Patients With Advanced Cancer, Oncologists, and Oncology Nurses

PubMed Central

Phelps, Andrea C.; Lauderdale, Katharine E.; Alcorn, Sara; Dillinger, Jennifer; Balboni, Michael T.; Van Wert, Michael; VanderWeele, Tyler J.; Balboni, Tracy A.

2012-01-01

Purpose Attention to patients' religious and spiritual needs is included in national guidelines for quality end-of-life care, but little data exist to guide spiritual care. Patients and Methods The Religion and Spirituality in Cancer Care Study is a multi-institution, quantitative-qualitative study of 75 patients with advanced cancer and 339 cancer physicians and nurses. Patients underwent semistructured interviews, and care providers completed a Web-based survey exploring their perspectives on the routine provision of spiritual care by physicians and nurses. Theme extraction was performed following triangulated procedures of interdisciplinary analysis. Multivariable ordinal logistic regression models assessed relationships between participants' characteristics and attitudes toward spiritual care. Results The majority of patients (77.9%), physicians (71.6%), and nurses (85.1%) believed that routine spiritual care would have a positive impact on patients. Only 25% of patients had previously received spiritual care. Among patients, prior spiritual care (adjusted odds ratio [AOR], 14.65; 95% CI, 1.51 to 142.23), increasing education (AOR, 1.26; 95% CI, 1.06 to 1.49), and religious coping (AOR, 4.79; 95% CI, 1.40 to 16.42) were associated with favorable perceptions of spiritual care. Physicians held more negative perceptions of spiritual care than patients (P < .001) and nurses (P = .008). Qualitative analysis identified benefits of spiritual care, including supporting patients' emotional well-being and strengthening patient-provider relationships. Objections to spiritual care frequently related to professional role conflicts. Participants described ideal spiritual care to be individualized, voluntary, inclusive of chaplains/clergy, and based on assessing and supporting patient spirituality. Conclusion Most patients with advanced cancer, oncologists, and oncology nurses value spiritual care. Themes described provide an empirical basis for engaging spiritual issues

Racial/Ethnic Differences in Inpatient Palliative Care Consultation for Patients With Advanced Cancer.

PubMed

Sharma, Rashmi K; Cameron, Kenzie A; Chmiel, Joan S; Von Roenn, Jamie H; Szmuilowicz, Eytan; Prigerson, Holly G; Penedo, Frank J

2015-11-10

Inpatient palliative care consultation (IPCC) may help address barriers that limit the use of hospice and the receipt of symptom-focused care for racial/ethnic minorities, yet little is known about disparities in the rates of IPCC. We evaluated the association between race/ethnicity and rates of IPCC for patients with advanced cancer. Patients with metastatic cancer who were hospitalized between January 1, 2009, and December 31, 2010, at an urban academic medical center participated in the study. Patient-level multivariable logistic regression was used to evaluate the association between race/ethnicity and IPCC. A total of 6,288 patients (69% non-Hispanic white, 19% African American, and 6% Hispanic) were eligible. Of these patients, 16% of whites, 22% of African Americans, and 20% of Hispanics had an IPCC (overall P < .001). Compared with whites, African Americans had a greater likelihood of receiving an IPCC (odds ratio, 1.21; 95% CI, 1.01 to 1.44), even after adjusting for insurance, hospitalizations, marital status, and illness severity. Among patients who received an IPCC, African Americans had a higher median number of days from IPCC to death compared with whites (25 v 17 days; P = .006), and were more likely than Hispanics (59% v 41%; P = .006), but not whites, to be referred to hospice. Inpatient settings may neutralize some racial/ethnic differences in access to hospice and palliative care services; however, irrespective of race/ethnicity, rates of IPCC remain low and occur close to death. Additional research is needed to identify interventions to improve access to palliative care in the hospital for all patients with advanced cancer. © 2015 by American Society of Clinical Oncology.

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

Patterns of Resuscitation Care and Survival After In-Hospital Cardiac Arrest in Patients With Advanced Cancer.

PubMed

Bruckel, Jeffrey T; Wong, Sandra L; Chan, Paul S; Bradley, Steven M; Nallamothu, Brahmajee K

2017-10-01

Little is known regarding patterns of resuscitation care in patients with advanced cancer who suffer in-hospital cardiac arrest (IHCA). In the Get With The Guidelines - Resuscitation registry, 47,157 adults with IHCA with and without advanced cancer (defined as the presence of metastatic or hematologic malignancy) were identified at 369 hospitals from April 2006 through June 2010. We compared rates of return of spontaneous circulation (ROSC) and survival to discharge between groups using multivariable models. We also compared duration of resuscitation effort and resuscitation quality measures. Overall, 6,585 patients with IHCA (14.0%) had advanced cancer. Patients with advanced cancer had lower multivariable-adjusted rates of ROSC (52.3% [95% CI, 49.5% to 55.3%] v 56.6% [95% CI, 53.8% to 59.5%]; P < .001) and survival to discharge (7.4% [95% CI, 6.6% to 8.4%] v 13.4% [95% CI, 12.1% to 14.8%]; P < .001). Among nonsurvivors who died during resuscitation, patients with advanced cancer had better performance on most resuscitation quality measures. Among patients with ROSC, patients with advanced cancer were made Do Not Attempt Resuscitation (DNAR) more frequently within 48 hours (adjusted relative risk, 1.30 [95% CI, 1.24 to 1.37]; P < .001). Adjustment for DNAR status explained some of the immediate effect of advanced cancer on survival; however, survival remained significantly lower in patients with cancer. Patients with advanced cancer can expect lower survival rates after IHCA compared with those without advanced cancer, and they are more frequently made DNAR within 48 hours of ROSC. These findings have important implications for discussions of resuscitation care wishes with patients and can better inform end-of-life discussions.

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

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.

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.

Perceptions and types of support coming from families caring for patients suffering from advanced illness in Kinshasa, Democratic Republic of Congo.

PubMed

Lofandjola, Jacques Masumbuku; Sumaili, Ernest Kiswaya; Mairiaux, Philippe; Petermans, Jean

2017-08-01

Perceptions of families who take care of patients suffering from advanced illness are rarely considered in Kinshasa medical practices; nevertheless, these families are the main actors involved in such care. The objective of this present study was to illustrate, in a Congolese context, the perceptions of families on the care of patients suffering from advanced illness, and to identify the possible aids provided by healthcare facilities. A qualitative study was performed among focus groups in six hospitals in Kinshasa. Each group included eight members. We gathered factors that could negatively influence the care of a patient suffering from advanced disease. Such factors included: scarcity of and inaccessibility to painkillers, economic resilience, poor quality treatment, lack of psychological counselling, seeking alternative solutions and poor communication between caregivers and patients. In contrast, the study also showed that relatives caring for these patients often receive support from the wider family and from cult members. This study focuses on the miscommunication between healthcare workers and patients, poor management in advanced illness as well as a lack of psychological support from caregivers. The findings can serve as basis for further research in palliative care.

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.

Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers.

PubMed

Røen, Ingebrigt; Stifoss-Hanssen, Hans; Grande, Gunn; Brenne, Anne-Tove; Kaasa, Stein; Sand, Kari; Knudsen, Anne Kari

2018-05-01

Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat." The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support. Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation. Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

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.

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.

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.

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.

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.

Everything safe? – Risk situations in advanced home care from the point of view of ventilated patients and their relatives

PubMed

Ewers, Michael; Schaepe, Christiane; Lehmann, Yvonne

2017-01-01

Background: The number of home mechanically ventilated (HMV) patients has been growing for years. However, little is known about requirements, processes and effects of advanced home care, provided in distance from clinics and doctors. To date, safety related aspects of the above mentioned issues have scarcely been examined. Aim: Users of advanced home care were asked about their experiences and about situations in which they felt safe or unsafe. The aim was to gain insights into the daily care provision, explore safety risks from the users’ point of view, and to develop new approaches to enhance patient safety in home care for the severely ill. Method: A qualitative explorative study has been carried out, based on semi-structured interviews (ventilated patients N = 21; relatives N = 15). Sampling, data collecting and data analysis were guided by principles of Grounded Theory. Results: Risk situations occur when (non-)verbal communication offers of HMV patients are overseen or misunderstood, patient- or technology related monitoring tasks are neglected, if coordination and collaboration requirements are undervalued and if negotiation processes as well as education and supervision needs are disregarded. Furthermore, nurses’ lack of competence, self-confidence and professionalism may produce risk situations. Conclusion: Listen carefully to patients and relatives can help to identify quality shortcomings in advanced home care, to prevent risk situations and to develop patient-centered safety concepts for this particular setting.

Physiotherapy programme reduces fatigue in patients with advanced cancer receiving palliative care: randomized controlled trial.

PubMed

Pyszora, Anna; Budzyński, Jacek; Wójcik, Agnieszka; Prokop, Anna; Krajnik, Małgorzata

2017-09-01

Cancer-related fatigue (CRF) is a common and relevant symptom in patients with advanced cancer that significantly decreases their quality of life. The aim of this study was to evaluate the effect of a physiotherapy programme on CRF and other symptoms in patients diagnosed with advanced cancer. The study was designed as a randomized controlled trial. Sixty patients diagnosed with advanced cancer receiving palliative care were randomized into two groups: the treatment group (n = 30) and the control group (n = 30). The therapy took place three times a week for 2 weeks. The 30-min physiotherapy session included active exercises, myofascial release and proprioceptive neuromuscular facilitation (PNF) techniques. The control group did not exercise. The outcomes included Brief Fatigue Inventory (BFI), Edmonton Symptom Assessment Scale (ESAS) and satisfaction scores. The exercise programme caused a significant reduction in fatigue scores (BFI) in terms of severity of fatigue and its impact on daily functioning. In the control group, no significant changes in the BFI were observed. Moreover, the physiotherapy programme improved patients' general well-being and reduced the intensity of coexisting symptoms such as pain, drowsiness, lack of appetite and depression. The analysis of satisfaction scores showed that it was also positively evaluated by patients. The physiotherapy programme, which included active exercises, myofascial release and PNF techniques, had beneficial effects on CRF and other symptoms in patients with advanced cancer who received palliative care. The results of the study suggest that physiotherapy is a safe and effective method of CRF management.

Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer.

PubMed

Gramling, Robert; Stanek, Susan; Han, Paul K J; Duberstein, Paul; Quill, Tim E; Temel, Jennifer S; Alexander, Stewart C; Anderson, Wendy G; Ladwig, Susan; Norton, Sally A

2018-03-01

Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. Observational cohort study. Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.

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.

Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

PubMed

Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke

2018-04-17

In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

PubMed

Hackett, Julia; Bekker, Hilary; Bennett, Michael I; Carder, Paul; Gallagher, Jean; Henry, Claire; Kite, Suzanne; Taylor, Sally; Velikova, Galina; Ziegler, Lucy

2018-05-14

For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via

Acute Hospital Care Is The Chief Driver of Regional Spending Variation in Medicare Patients with Advanced Cancer

PubMed Central

Brooks, Gabriel A.; Li, Ling; Uno, Hajime; Hassett, Michael J.; Landon, Bruce E.; Schrag, Deborah

2014-01-01

The root causes of regional variation in medical spending are poorly understood and vary by clinical condition. To identify drivers of regional spending variation for Medicare patients with advanced cancer, we used linked Surveillance, Epidemiology, and End Results (SEER) program–Medicare data from 2004–10. We broke down Medicare spending into thirteen cancer-relevant service categories. We then calculated the contribution of each category to spending and regional spending variation. Acute hospital care was the largest component of spending and the chief driver of regional spending variation, accounting for 48 percent of spending and 67 percent of variation. In contrast, chemotherapy accounted for 16 percent of spending and 10 percent of variation. Hospice care comprised 5 percent of spending; however variation in hospice spending was fully offset by opposing variation in other categories. Our analysis suggests that the strategy with the greatest potential to improve the value of care for patients with advanced cancer is to reduce reliance on acute hospital care for this patient population. PMID:25288424

Provision of Spiritual Care to Patients With Advanced Cancer: Associations With Medical Care and Quality of Life Near Death

PubMed Central

Balboni, Tracy Anne; Paulk, Mary Elizabeth; Balboni, Michael J.; Phelps, Andrea C.; Loggers, Elizabeth Trice; Wright, Alexi A.; Block, Susan D.; Lewis, Eldrin F.; Peteet, John R.; Prigerson, Holly Gwen

2010-01-01

Purpose To determine whether spiritual care from the medical team impacts medical care received and quality of life (QoL) at the end of life (EoL) and to examine these relationships according to patient religious coping. Patients and Methods Prospective, multisite study of patients with advanced cancer from September 2002 through August 2008. We interviewed 343 patients at baseline and observed them (median, 116 days) until death. Spiritual care was defined by patient-rated support of spiritual needs by the medical team and receipt of pastoral care services. The Brief Religious Coping Scale (RCOPE) assessed positive religious coping. EoL outcomes included patient QoL and receipt of hospice and any aggressive care (eg, resuscitation). Analyses were adjusted for potential confounders and repeated according to median-split religious coping. Results Patients whose spiritual needs were largely or completely supported by the medical team received more hospice care in comparison with those not supported (adjusted odds ratio [AOR] = 3.53; 95% CI, 1.53 to 8.12, P = .003). High religious coping patients whose spiritual needs were largely or completely supported were more likely to receive hospice (AOR = 4.93; 95% CI, 1.64 to 14.80; P = .004) and less likely to receive aggressive care (AOR = 0.18; 95% CI, 0.04 to 0.79; P = .02) in comparison with those not supported. Spiritual support from the medical team and pastoral care visits were associated with higher QOL scores near death (20.0 [95% CI, 18.9 to 21.1] v 17.3 [95% CI, 15.9 to 18.8], P = .007; and 20.4 [95% CI, 19.2 to 21.1] v 17.7 [95% CI, 16.5 to 18.9], P = .003, respectively). Conclusion Support of terminally ill patients' spiritual needs by the medical team is associated with greater hospice utilization and, among high religious copers, less aggressive care at EoL. Spiritual care is associated with better patient QoL near death. PMID:20008625

The Dangers of Involving Children as Family Caregivers of Palliative Home-Based-Care to Advanced HIV/AIDS Patients

PubMed Central

Kangethe, Simon

2010-01-01

The aim of this research paper is to explore the dangers of involving children as family caregivers of palliative care and home-based-care to advanced HIV/AIDS patients, while its objective is to discuss the dangers or perfidiousness that minors especially the girl children face as they handle care giving of advanced HIV/AIDS patients. The article has relied on eclectic data sources. The research has foundminors disadvantaged by the following: being engulfed by fear and denied rights through care giving; being emotionally and physiologically overwhelmed; being oppressed and suppressed by caring duties; being at risk of contracting HIV/AIDS; and having their education compromised by care giving. The paper recommends: (1) strengthening and emphasizing on children’s rights; (2) maintaining gender balance in care giving; (3) implementation and domestication of the United Nations conventions on the rights of children; (4) community awareness on equal gender co participation in care giving; (5) and fostering realization that relying on child care giving is a negative score in fulfilling global Millennium Development Goals. PMID:21218000

Establishing end-of-life boards for palliative care of patients with advanced diseases.

PubMed

Masel, Eva K; Unseld, Matthias; Adamidis, Feroniki; Roider-Schur, Sophie; Watzke, Herbert H

2018-04-01

Interdisciplinary tumor board decisions improve the quality of oncological therapies, while no such boards exist for end-of-life (EOL) decisions. The aim of this study was to assess the willingness of hemato-oncological and palliative care professionals to develop and participate in EOL boards. An aim of an EOL board would be to establish an interdisciplinary and comprehensive care for the remaining lifetime of patients suffering from advanced incurable diseases. Staff from the interdisciplinary teams of all hemato-oncological and palliative care wards in Vienna were invited to anonymously participate in an online survey. 309 professionals responded. 91% respondents reported a need to establish an EOL board, 63% expressed their willingness to actively participate in an EOL board, and 25% were indecisive. Regarding patient presence, 50% voted for an EOL board in the presence of the patients, and 36% voted for an EOL board in the absence of the patients. 95% had the opinion that an EOL board could improve patient care in the last phase of life. 64% stated that the development of an EOL board would be worthwhile, while 28% did not see enough resources available at their institutions. Regarding the desired type of documentation, 61% voted for a centrally available EOL decision, and 31% supported an in-house-based documentation. 94% voted for the availability of an information folder about EOL care. The willingness of professionals to establish an EOL board was very high. Further steps should be taken to implement such boards to improve EOL care.

Tracking Patient Encounters and Clinical Skills to Determine Competency in Ambulatory Care Advanced Pharmacy Practice Experiences

PubMed Central

Pereira, Chrystian R.; Harris, Ila M.; Moon, Jean Y.; Westberg, Sarah M.; Kolar, Claire

2016-01-01

Objective. To determine if the amount of exposure to patient encounters and clinical skills correlates to student clinical competency on ambulatory care advanced pharmacy practice experiences (APPEs). Design. Students in ambulatory care APPEs tracked the number of patients encountered by medical condition and the number of patient care skills performed. At the end of the APPE, preceptors evaluated students’ competency for each medical condition and skill, referencing the Dreyfus model for skill acquisition. Assessment. Data was collected from September 2012 through August 2014. Forty-six responses from a student tracking tool were matched to preceptor ratings. Students rated as competent saw more patients and performed more skills overall. Preceptors noted minimal impact on workload. Conclusions. Increased exposure to patient encounters and skills performed had a positive association with higher Dreyfus stage, which may represent a starting point in the conversation for more thoughtful design of ambulatory care APPEs. PMID:26941440

Spiritual well-being of Italian advanced cancer patients in the home palliative care setting.

PubMed

Martoni, A A; Varani, S; Peghetti, B; Roganti, D; Volpicella, E; Pannuti, R; Pannuti, F

2017-07-01

This study evaluates the spiritual well-being (SpWB) in very advanced cancer patients assisted by the home palliative care program of ANT Foundation, a no-profit Italian organisation. SpWB was assessed by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp12), including Meaning, Peace, and Faith subscales. The quality-of-life (QoL) was evaluated by using the Functional Assessment of Cancer Therapy-General scale. Questionnaires were distributed to 1,055 patients and 683 were compiled and evaluable for analysis. The mean scores of FACIT-Sp12 as well as of QoL were notably lower than reference values for cancer survivors. The FACIT-Sp12 score was higher in patients with less impaired Karnofsky Performance Status, fully participating in religious rituals and living in central Italy. A high Pearson's correlation was found between QoL and FACIT-Sp12 (r = .60), Peace (r = .71) and Meaning (r = .52), while it was marginal for Faith (r = .27). The hierarchical regression analysis showed that FACIT-Sp12 is a significant predictor of QoL. The study suggests that Italian patients with advanced cancer assisted by expert multi-professional teams in the home palliative care setting have a low level of SpWB thereby highlighting the need for the integration of spiritual support as part of comprehensive cancer care. © 2017 John Wiley & Sons Ltd.

The relationship between physical and psychological symptoms and health care utilization in hospitalized patients with advanced cancer.

PubMed

Nipp, Ryan D; El-Jawahri, Areej; Moran, Samantha M; D'Arpino, Sara M; Johnson, P Connor; Lage, Daniel E; Wong, Risa L; Pirl, William F; Traeger, Lara; Lennes, Inga T; Cashavelly, Barbara J; Jackson, Vicki A; Greer, Joseph A; Ryan, David P; Hochberg, Ephraim P; Temel, Jennifer S

2017-12-01

Patients with advanced cancer often experience frequent and prolonged hospitalizations; however, the factors associated with greater health care utilization have not been described. We sought to investigate the relation between patients' physical and psychological symptom burden and health care utilization. We enrolled patients with advanced cancer and unplanned hospitalizations from September 2014-May 2016. Upon admission, we assessed physical (Edmonton Symptom Assessment System [ESAS]) and psychological symptoms (Patient Health Questionnaire 4 [PHQ-4]). We examined the relationship between symptom burden and healthcare utilization using linear regression for hospital length of stay (LOS) and Cox regression for time to first unplanned readmission within 90 days. We adjusted all models for age, sex, marital status, comorbidity, education, time since advanced cancer diagnosis, and cancer type. We enrolled 1,036 of 1,152 (89.9%) consecutive patients approached. Over one-half reported moderate/severe fatigue, poor well being, drowsiness, pain, and lack of appetite. PHQ-4 scores indicated that 28.8% and 28.0% of patients had depression and anxiety symptoms, respectively. The mean hospital LOS was 6.3 days, and the 90-day readmission rate was 43.1%. Physical symptoms (ESAS: unstandardized coefficient [B], 0.06; P < .001), psychological distress (PHQ-4 total: B, 0.11; P = .040), and depression symptoms (PHQ-4 depression: B, 0.22; P = .017) were associated with longer hospital LOS. Physical (ESAS: hazard ratio, 1.01; P < .001), and anxiety symptoms (PHQ-4 anxiety: hazard ratio, 1.06; P = .045) were associated with a higher likelihood for readmission. Hospitalized patients with advanced cancer experience a high symptom burden, which is significantly associated with prolonged hospitalizations and readmissions. Interventions are needed to address the symptom burden of this population to improve health care delivery and utilization. Cancer 2017;123:4720-4727. © 2017 American

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

Palliative care and end-of-life care for polypathological patients.

PubMed

Martinez-Litago, E; Martínez-Velasco, M C; Muniesa-Zaragozano, M P

2017-12-01

Patients with advanced chronic diseases receive fragmented care, which entails high resource consumption and a poor quality of life. Uncertainty in the prognosis and scarce investigation into the importance of symptomatic control in this patient group hinders a proper therapeutic approach. Palliative care teams optimise the use of resources through comprehensive patient care, the optimization of the patient's environment, communication, the preparation of early care plans and the creation of coordinated healthcare circuits, which improve the quality of the patient's care in advanced stages of the disease. In the end-of-life phase, the therapeutic approach is focused on symptomatic control, selecting treatments according to the cause, comorbidities and the patient's wishes. To control refractory symptoms, palliative sedation is considered an indispensable option. Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Medicina Interna (SEMI). All rights reserved.

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

Prevalence of use of advance directives, health care proxy, legal guardian, and living will in 512 patients hospitalized in a cardiac care unit/intensive care unit in 2 community hospitals.

PubMed

Kumar, Anil; Aronow, Wilbert S; Alexa, Margelusa; Gothwal, Ritu; Jesmajian, Stephen; Bhushan, Bharat; Gaba, Praveen; Catevenis, James

2010-04-30

The prevalence of use of any advance directives was 26% in 112 patients hospitalized in a cardiac care unit (CCU)/intensive care unit (ICU) in an academic medical center. We investigated in 2 community hospitals the prevalence of use of advance directives (AD), health care proxy (HCP), legal guardian (LG), and living will (LW) in 512 patients hospitalized in a CCU/ ICU approached for AD and HCP. The use of AD was 22%, of HCP was 19%, of LG was 16%, and of LW was 5%. The use of AD was 22%, of HCP was 19%, of LG was 16%, and of LW was 5% in patients hospitalized in a CCU/ICU. Educational programs on use of AD and of HCP need to be part of cardiovascular training programs and of cardiovascular continuing medical education.

Contending with advanced illness: patient and caregiver perspectives.

PubMed

Meeker, Mary Ann; Waldrop, Deborah P; Schneider, Jaclyn; Case, Amy A

2014-05-01

Despite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used. To investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care. This was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study. Participants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness. Findings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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.

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.

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

A Soup Service for Advanced Digestive Cancer Patients with Severe Anorexia in Palliative Care.

PubMed

Kawabata, Hideaki; Kakihara, Naoki; Nishitani, Yoko; Asano, Kota; Nose, Mariko; Takanashi, Asami; Kanda, Eiichiro; Nishimura, Masako; Tokunaga, Eiko; Matsurugi, Ayako; Fujimura, Keiko; Nishikawa, Masanori; Taga, Chiaki; Ikawa, Osamu; Yamaguchi, Makiko; Masuda, Katsuhiko

2018-03-01

The palliative care team (PCT), nutrition support team (NST), and department of nutrition in our hospital developed a special soup service for patients with terminal cancer. We evaluated the usefulness of this soup service for improving the mood in patients with advanced digestive cancer with severe anorexia. We retrospectively reviewed the clinical data of 18 patients with advanced cancer originating in digestive organs who received soup service at our institution between 2015 and 2016. Members of the PCT, NST, and a licensed cook visited the bedside of each patient and served them a cup of soup twice a week. Fifteen patients (83%) were able to taste the soup with no adverse events, and 11 (73%) of them enjoyed the taste of the soup. In the five patients who died in our hospital during the service, the time between their last soup intake and death ranged from two to seven days (median three days). Even terminally ill patients suffering from advanced digestive cancer with severe anorexia were able to enjoy the taste of the soup served to them. The establishment of special meal service, such as this soup service, may not only relieve their stress but also support the strength of living and help improve their spiritual quality of life.

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.

The frequency of alcoholism in patients with advanced cancer admitted to an acute palliative care unit and a home care program.

PubMed

Mercadante, Sebastiano; Porzio, Giampiero; Caruselli, Amanda; Aielli, Federica; Adile, Claudio; Girelli, Nicola; Casuccio, Alessandra

2015-02-01

Cancer patients with a history of alcoholism may be problematic. The frequency of alcoholism among patients with advanced cancer has never been reported in Italy or other European countries. The aim of this prospective study was to determine the frequency of alcoholism, assessed with a simple and validated instrument, among patients with advanced cancer who were referred to two different palliative care settings: an acute inpatient palliative care unit (PCU) of a comprehensive cancer center in a metropolitan area and a home care program (HCP) in a territorial district, localized in the mountains of Italy. A consecutive sample of patients admitted to an inpatient PCU and to an HCP was assessed for a period of eight months. Each patient who agreed to be interviewed completed the Cut down, Annoyed, Guilty, Eye-opener (CAGE) questionnaire. Patients were then interviewed informally to gather information about their history with alcohol. In total, 443 consecutive patients were surveyed; data from 249 to 194 patients were collected in the PCU and HCP, respectively, in the eight-month period. The mean age was 66.4 (SD 12.7) years, and 207 were males. The mean Karnofsky level was 54.2 (SD 14.6). Eighteen patients were CAGE positive (4.06%). Males (Pearson Chi-squared, P = 0.027) and younger patients (analysis of variance test, P = 0.009) were more likely to be CAGE positive. Informal interviews revealed that 17 patients (3.83%) were alcoholics or had a history of alcoholism, and that alcoholism was strongly correlated with CAGE (Pearson Chi-squared, P < 0.0001). Only a minority of patients were CAGE positive, with a similar frequency in the PCU and HCP settings. CAGE-positive patients were more likely to be male and younger, independent of diagnosis and performance status. CAGE was positively correlated with informal interviews for detecting alcoholism. As CAGE patients express more symptom distress, it is important to detect this problem with a simple tool that has a

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.

[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.

Wound management in patients with advanced illness.

PubMed

Maida, Vincent

2013-03-01

To emphasize that the management of wounds represents a significant component within the overall supportive and palliative care of patients with advanced illness. It is also intended to clarify the linguistics that are commonly used around patients with wounds. New paradigms for wound management, wound outcomes, and goal setting have been defined and graphically depicted. Recent studies show that wounds may be used as prognostic factors for patients with advanced illness. Data from recent studies also demonstrate that marginal levels of wound healing are possible for all wound classes affecting patients with advanced illness. When indicated, time-limited trials of wound healing strategies should be facilitated by the Wound Bed Preparation Paradigm. Wound palliation may be guided through the use of the Toronto Symptom Assessment System for Wounds (TSAS-W). Wound management must continue to evolve as a tenet within the overall supportive and palliative care of patients with advanced illness.

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/.

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.

Pediatric Palliative Care in the Age of eHealth: Opportunities for Advances in HIT to Improve Patient-Centered Communication

PubMed Central

Madhavan, Subha; Sanders, Amy; Chou, Wen-Ying Sylvia; Shusterdg, Alex; Boone, Keith; Dente, Mark; Shad, Aziza T.; Hesse, Bradford W.

2013-01-01

Pediatric palliative care is an organized method for delivering effective, compassionate and timely care to children with cancer and their families, but it currently faces many challenges despite advances in technology and health care delivery. A key challenge involves unnecessary suffering from debilitating symptoms, such as pain, resulting from insufficient personalized treatment. Additionally, breakdowns in communication and a paucity of usable patient-centric information impede effective care. Recent advances in informatics for consumer health through eHealth initiatives have begun to be adopted in care coordination and communication, but overall remain under-utilized. Tremendous potentials exist in effective use of health information technology (HIT) to improve areas requiring personalized care such as pain management in pediatric oncology patients. This article aims first to identify communication challenges and needs in pediatric palliative cancer care from the perspectives of the entire group of individuals around the pediatric oncology patient, and then to describe how adoption and adaptation of these technologies can improve patient-provider communication, behavioral support, pain assessment, and education through integration into existing work flows. The goal of this research is to promote the value of using HIT standards-based technology solutions and stimulate development of interoperable, standardized technologies and delivery of context-sensitive information through user-friendly portals to facilitate communication in an existing pediatric clinical care setting. PMID:21521596

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.

Continuous palliative sedation for patients with advanced cancer at a tertiary care cancer center.

PubMed

Prado, Bernard Lobato; Gomes, Diogo Bugano Diniz; Usón Júnior, Pedro Luiz Serrano; Taranto, Patricia; França, Monique Sedlmaier; Eiger, Daniel; Mariano, Rodrigo Coutinho; Hui, David; Del Giglio, Auro

2018-01-04

Palliative sedation (PS) is an intervention to treat refractory symptoms and to relieve suffering at the end of life. Its prevalence and practice patterns vary widely worldwide. The aim of our study was to evaluate the frequency, clinical indications and outcomes of PS in advanced cancer patients admitted to our tertiary comprehensive cancer center. We retrospectively studied the use of PS in advanced cancer patients who died between March 1st, 2012 and December 31st, 2014. PS was defined as the use of continuous infusion of midazolam or neuroleptics for refractory symptoms in the end of life. This study was approved by the Research Ethics Committee of our institution (project number 2481-15). During the study period, 552 cancer patients died at the institution and 374 met the inclusion criteria for this study. Main reason for exclusion was death in the Intensive Care Unit. Among all included patients, 54.2% (n = 203) received PS. Patients who received PS as compared to those not sedated were younger (67.8 vs. 76.4 years-old, p < 0.001) and more likely to have a diagnosis of lung cancer (23% vs. 14%, p = 0.028). The most common indications for sedation were dyspnea (55%) and delirium (19.7%) and the most common drugs used were midazolam (52.7%) or midazolam and a neuroleptic (39.4%). Median initial midazolam infusion rate was 0.75 mg/h (interquartile range - IQR - 0.6-1.5) and final rate was 1.5 mg/h (IQR 0.9-3.0). Patient survival (length of hospital stay from admission to death) of those who had PS was more than the double of those who did not (33.6 days vs 16 days, p < 0.001). The palliative care team was involved in the care of 12% (n = 25) of sedated patients. PS is a relatively common practice in the end-of-life of cancer patients at our hospital and it is not associated with shortening of hospital stay. Involvement of a dedicated palliative care team is strongly recommended if this procedure is being considered. Further research is

Veterans Health Administration Office of Nursing Services exploration of positive patient care synergies fueled by consumer demand: care coordination, advanced clinic access, and patient self-management.

PubMed

Wertenberger, Sydney; Yerardi, Ruth; Drake, Audrey C; Parlier, Renee

2006-01-01

The consumers who utilize the Veterans Health Administration healthcare system are older, and most are learning to live with chronic diseases. Their desires and needs have driven changes within the Veterans Health Administration. Through patient satisfaction initiatives and other feedback sources, consumers have made it clear that they do not want to wait for their care, they want a say in what care is provided to them, and they want to remain as independent as possible. Two interdisciplinary processes/models of healthcare are being implemented on the national level to address these issues: advanced clinic access and care coordination. These programs have a synergistic relationship and are integrated with patient self-management initiatives. Positive outcomes of these programs also meet the needs of our staff. As these new processes and programs are implemented nationwide, skills of both patients and nursing staff who provide their care need to be enhanced to meet the challenges of providing nursing care now and into the 21st century. Veterans Health Administration Office of Nursing Services Strategic Planning Work Group is defining and implementing processes/programs to ensure nurses have the knowledge, information, and skills to meet these patient care demands at all levels within the organization.

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

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

Patient perceptions of helpful communication in the context of advanced cancer.

PubMed

Stajduhar, Kelli I; Thorne, Sally E; McGuinness, Liza; Kim-Sing, Charmaine

2010-07-01

Based on a secondary analysis of data from a large qualitative study on cancer care communication, we address the question: what do patients with advanced cancer identify as helpful in their communication encounters with health care providers? Communication is of critical importance to the care of patients with advanced cancer. A better understanding of what such patients identify as helpful in their communication encounters with nurses and other health care providers seems critical to creating evidence-informed recommendations for best practices. Secondary analysis of qualitative interview data. Data from 18 participants interviewed individually and 16 focus group participants, with advanced cancer in the palliative phase of care. Interpretive description methodology informed data collection and analysis. Findings suggest four key elements are critically important to consider in communications with patients in an advanced or palliative phase - respecting the importance of time, demonstrating caring, acknowledging fear and balancing hope and honesty in the provision of information. Communication is an important element in the provision of advanced cancer care. Findings emphasise the complex meanings inherent in cancer care communication and identify central themes that are fundamental to effective cancer care communication. © 2010 The Authors. Journal compilation © 2010 Blackwell Publishing Ltd.

Comparison of attitudes of guilt and forgiveness in cancer patients without evidence of disease and advanced cancer patients in a palliative care setting.

PubMed

van Laarhoven, Hanneke W M; Schilderman, Johannes; Verhagen, Constans A H H V M; Prins, Judith B

2012-01-01

: Attitudes toward guilt and forgiveness may be important factors determining distress in cancer patients. Direct comparative studies in patients with different life expectancies exploring attitudes toward guilt and forgiveness are lacking. Also, sociodemographic and religious characteristics determining the attitudes toward guilt and forgiveness are unknown. : The objective of this study was to compare attitudes toward guilt and forgiveness in cancer patients without evidence of disease and advanced cancer patients. : A descriptive research design was used. Ninety-seven patients without evidence of disease and 55 advanced cancer patients filled out the Dutch Guilt Measurement Instrument and the Forgiveness of Others Scale. : Both groups had an attitude of nonreligious guilt and forgiveness, but not of religious guilt. No significant differences in attitudes toward guilt and forgiveness were observed between the 2 groups. In contrast to sociodemographic characteristics, religious characteristics were relevant predictors for guilt and forgiveness. Significant differences in relations between images of God and attitudes toward guilt were observed between the 2 patient groups. : An attitude of nonreligious guilt and forgiveness was found in cancer patients, irrespective of the stage of disease. Religious characteristics were significantly associated with attitudes of guilt and forgiveness. This correlation differed in the early and the advanced setting of disease. : The observed relations between religious characteristics and attitudes of guilt and forgiveness suggest that a careful examination of the role of religious beliefs and values is relevant in the clinical care of patients with cancer, both in the setting of early and advanced disease.

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

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.

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.

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.

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.

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.

Expert perspectives on hereditary angioedema: Key areas for advancements in care across the patient journey

PubMed Central

Baş, Murat; Bernstein, Jonathan A.; Boccon-Gibod, Isabelle; Bova, Maria; Dempster, John; Grumach, Anete Sevciovic; Magerl, Markus; Poarch, Kimberly; Ferreira, Manuel Branco

2016-01-01

Background: Published literature documents the substantial burden of hereditary angioedema (HAE) with C1 inhibitor deficiency on the quality of life and work productivity of patients. However, despite advances in the field and the availability of guidelines to advise health care providers (HCP) on the diagnosis and management of HAE, there are still many challenges to overcome. For example, delayed diagnosis and misdiagnosis are common, and treatment practices vary worldwide. Objective: An international expert panel was convened to consider opportunities for improvements that would benefit patients with HAE. Methods: Based on professional and personal experiences, the experts developed schematics to describe the journey of patients through the following stages: (1) onset of symptoms and initial evaluation; (2) referral/diagnosis; and (3) management of HAE. More importantly, the panel identified key areas in which it was possible to optimize the support provided to patients and HCPs along this journey. Results: Overall, this approach highlighted the need for wider dissemination of algorithms and scientific data to more effectively educate HCPs from multiple disciplines and the need for more research to inform appropriate treatment decisions. Furthermore, HAE awareness campaigns, accurate online information, and referral to patient advocacy groups were all considered helpful approaches to support patients. Conclusion: More detailed and widespread information on the diagnosis and management of HAE is needed and may lead to advancements in care throughout the journey of the patient with HAE. PMID:27661998

Randomized controlled trial of care bundles with chlorhexidine dressing and advanced dressings to prevent catheter-related bloodstream infections in pediatric hematology-oncology patients.

PubMed

Gerçeker, Gülçin Özalp; Yardımcı, Figen; Aydınok, Yeşim

2017-06-01

To compare the effects of the care bundles including chlorhexidine dressing and advanced dressings on the catheter-related bloodstream infection (CRBSI) rates in pediatric hematology-oncology patients with central venous catheters (CVCs). Twenty-seven PHO patients were recruited to participate in a prospective, randomized study in Turkey. The researcher used care bundles with chlorhexidine dressing in the experimental group (n = 14), and care bundles with advanced dressings in the control group (n = 13). According to the study results, 28.6% of the patients in the experimental group had CRBSI, while this rate was 38.5% in the control group patients. The CRBSI rate in the experimental group was 3.9, and the control group had 4.4 per 1000 inpatient catheter days. There was no exit-site infection in the experimental group. However, the control group had 1.7 per 1000 inpatient catheter days. Even though there was no difference between the two groups in which the researcher implemented care bundles with chlorhexidine dressing and advanced dressings in terms of CRBSI development, there was reduction in the CRBSI rates thanks to the care bundle approach. It is possible to control the CRBSI rates using care bundles in pediatric hematology-oncology patients. Copyright © 2017 Elsevier Ltd. All rights reserved.

Initiating palliative care consults for advanced dementia patients in the emergency department.

PubMed

Ouchi, Kei; Wu, Mark; Medairos, Robert; Grudzen, Corita R; Balsells, Herberth; Marcus, David; Whitson, Micah; Ahmad, Danish; Duprey, Kael; Mancherje, Noel; Bloch, Helen; Jaffrey, Fatima; Liberman, Tara

2014-03-01

Patients with dementia, an underrecognized terminal illness, frequently visit the emergency department (ED). These patients may benefit from ED-initiated palliative care (PC) consultation. The study's objective was to track the rate of ED-initiated PC consultation for patients with advanced dementia (AD) after an educational intervention, and to categorize decision making for physicians who chose not to initiate consultation. As part of a quality improvement project at a suburban, tertiary care, university-affiliated medical center, emergency physicians (EPs) were taught to identify AD patients and initiate PC consultation. A convenience sample of patients over age 70 was screened for AD by research staff from July 1, 2012 to August 1, 2012 using the Functional Assessment Staging (FAST) criteria. A questionnaire was then administered to patients' physicians to inquire about barriers to initiating consultation. Questionnaires and medical records of those who met AD criteria were reviewed to examine patient characteristics, disposition information, and consultation initiation barriers. Patients (N=548) over 70 who visited the ED were approached and 304 completed the screening. Fifty-one of the 304 met criteria for AD. Their average age was 86; 33% were male. Eighteen of the 51 (35%) patients received a PC consultation sometime during their ED or hospital stay. Four of the 18 (22%) consultations were ED initiated. In 23 of 51 (45%) unique cases, physicians responded to the questionnaire. The majority felt that a PC consult was not appropriate for patients based on their knowledge, attitudes, or beliefs. Preexisting physician attitudes, knowledge, and beliefs prevent emergency physicians from addressing PC needs for AD patients.

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

Symptom severity of patients with advanced cancer in palliative care unit: longitudinal assessments of symptoms improvement.

PubMed

Tai, Shu-Yu; Lee, Chung-Yin; Wu, Chien-Yi; Hsieh, Hui-Ya; Huang, Joh-Jong; Huang, Chia-Tsuan; Chien, Chen-Yu

2016-03-11

This study assessed the symptom severity of patients with advanced cancer in a palliative care unit and explored the factors associated with symptom improvement. This study was conducted in a palliative care unit in Taiwan between October 2004 and December 2009. Symptom intensity was measured by the "Symptom Reporting Form", and graded on a scale of 0 to 4 (0 = none, and 4 = extreme). These measures were assessed on the 1(st), 3(rd), 5(th), and 7(th) Day in the palliative care unit. The study data comprised routine clinical records and patients' demographic data. Generalized estimating equation (GEE) was used to assess the symptom improvement, and investigate the factors associated with the symptom reporting form scores. Among the 824 recruited patients with advanced cancer, pain (78.4%), anorexia (64.4%) and constipation (63.5%) were the most common and severe symptom. After controlling for other factors in the multivariate GEE model, the day of palliative care administration was a significant factor associated with all of the scales, except Days 7 on the dyspnoea and oedema scales and Day 5 on the anxiety scale. In addition, patients aged ≥ 65 years exhibited significantly lower scores on the pain, sleep disturbance, depression, and anxiety scales than did those aged < 65 years. Moreover, female patients exhibited higher scores on the vomiting, anorexia, oedema, depression, and anxiety scales than did male patients. Furthermore, patients with gastrointestinal tract cancer exhibited higher scores on the constipation, vomiting, anorexia, oedema, depression, and anxiety scales and lower scores on the dyspnoea scale than did those with lung cancer. Patients with breast cancer exhibited higher scores on the oedema scale and lower scores on the anxiety scale. Patients with genitourinary cancer exhibited higher scores on the vomiting and oedema scales and lower scores on the dyspnoea scale. Patients with head, neck, and oral cancer exhibited lower

The Challenges, Emotions, Coping, and Gains of Family Caregivers Caring for Patients With Advanced Cancer in Singapore: A Qualitative Study.

PubMed

Leow, Mabel Q H; Chan, Sally W C

Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.

Advance directives in patients with advanced cancer receiving active treatment: attitudes, prevalence, and barriers.

PubMed

McDonald, Julie C; du Manoir, Jeanne M; Kevork, Nanor; Le, Lisa W; Zimmermann, Camilla

2017-02-01

The purposes of the study were to assess awareness and prevalence of advance directives (ADs) among patients with advanced cancer undergoing active outpatient care and to determine factors associated with AD completion before and after the diagnosis of cancer. Patients with advanced solid tumor malignancy receiving treatment at the Chemotherapy Day Unit were approached for recruitment. They completed an onsite questionnaire about completion and timing of ADs, demographic information, and perceived health; a review of their medical records was conducted to document their cancer care and co-morbidities. Multinomial logistic regression analysis identified factors associated with the timing of AD completion (pre-cancer, post-cancer, or not at all). Two hundred patients were enrolled, with 193 surveys available for analysis. ADs were completed in 55 % (106/193) of patients, including a living will in 33 % (63/193), a power of attorney in 49 % (95/193), and a do-not-resuscitate (DNR) designation in 18 % (35/193). Most patients (53 %) had completed an AD before being diagnosed with cancer. Higher income (p = 0.02) and age (p = 0.004) were associated with AD completion pre-cancer diagnosis; discussion of end-of-life care (p = 0.02) and palliative care referral (p < 0.0001) were associated with AD completion post-cancer diagnosis. This study demonstrates that different factors may influence the completion of ADs before and after a diagnosis of cancer and highlights the potential for early palliative care to impact the completion of ADs in patients with advanced cancer who are undergoing active cancer treatment.

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.

What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care.

PubMed

Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W; Dunn, Laura B

2017-11-01

Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory. From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC). Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Do Symptoms among Home Palliative Care Patients with Advanced Cancer Decide the Place of Death? Focusing on the Presence or Absence of Symptoms during Home Care.

PubMed

Okamoto, Yuko; Fukui, Sakiko; Yoshiuchi, Kazuhiro; Ishikawa, Takako

2016-05-01

Our goal was to investigate the association between actual place of death among Japanese home end-of-life care patients with advanced cancer and individual, illness, and environmental factors, including the presence or absence of symptoms. Using structured interviews, we asked 44 nurses from 19 home-visit nursing agencies about changes in status of all 123 of their home end-of-life care patients with advanced cancer between April and September 2013. The main outcome variable was actual place of death (Home/Hospital/Still surviving) and independent variables were the patient's symptoms as a time-dependent variable. Competing risk analysis was conducted with adjustment for patient individual factors (demographics, medical factors, caregiver support, and patient's and caregiver's preference for place of death) and environmental factors (availability of physician-visit and policy at discharge). Among all patients, 53 died in the hospital, 52 at home, and 16 still survived. Multivariate analyses revealed the following: 1) patients were more likely to die in the hospital when pain and dyspnea were present (adjusted sub hazard ratio [SHR]: 1.50 [95% confidence interval (CI): 1.23-1.83] and 1.71 [95% CI: 1.36-2.15], respectively); 2) patients were less likely to die in the hospital when delirium was present (adjusted SHR: 0.64 [95%CI: 0.43-0.96]); and 3) other factors associated with hospital death were patient's gender, primary cancer site, caregiver support, health care service, policy at discharge, and congruence between the patient's and family's preference for place of death. To alleviate pain and dyspnea among home end-of-life care patients, development of both a rapid admission system to a hospital/hospice/care facility in the community and specialist-level palliative care at home is needed.

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.

The adaptation of the Sheffield Profile for Assessment and Referral for Care (SPARC) to the Polish clinical setting for needs assessment of advanced cancer patients.

PubMed

Leppert, Wojciech; Majkowicz, Mikolaj; Ahmedzai, Sam H

2012-12-01

Assessment of the needs of advanced cancer patients is a very important issue in palliative care. The aim of the study was to adapt the Sheffield Profile for Assessment and Referral for Care (SPARC) to the Polish environment and evaluate its usefulness in needs assessment of patients with advanced cancer. A forward-back translation of the SPARC to Polish was done. The SPARC was used once in 58 consecutive patients with advanced cancer during follow-up. The patients were enrolled from a palliative care unit (25 patients), home care (18 patients), and a day care center (15 patients). The reliability was evaluated by establishing the internal consistency using Cronbach's alpha coefficients. Content validity was analyzed in accordance with the theories of needs by Murray and Maslow as a nonstatistical method of validity assessment. Factor analysis with principal components extraction and varimax rotation of raw data was used to reduce the set of data and assess the construct validity. There were differences regarding religious and spiritual issues and independence and activity between patients in the palliative care unit (worse results) and those at the day care center (better scores). Communication and need for more information items were associated with psychological, social, spiritual, and treatment issues. Cronbach's alpha coefficients and factor analysis demonstrated, respectively, satisfactory reliability and construct validity of the tool. The study demonstrated that the Polish version of the SPARC is a valid and reliable tool recommended for the needs assessment and symptom evaluation of patients with advanced cancer. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Supporting Muslim Patients During Advanced Illness

PubMed Central

Boucher, Nathan A; Siddiqui, Ejaz A; Koenig, Harold G

2017-01-01

Religion is an important part of many patients’ cultural perspectives and value systems that influence them during advanced illness and toward the end of life when they directly face mortality. Worldwide violence perpetrated by people identifying as Muslim has been a growing fear for people living in the US and elsewhere. This fear has further increased by the tense rhetoric heard from the recent US presidential campaign and the new presidential administration. For many, this includes fear of all Muslims, the second-largest religious group in the world with 1.6 billion adherents and approximately 3.5 million in the US alone. Patient-centered care requires health professionals to look past news headlines and unchecked social media so they can deliver high-quality care to all patients. This article explores areas of importance in the context of advanced illness for practitioners of Islam. These include the conditions needed for prayer, the roles of medical treatment and religious authority, the importance of modesty, the religious concordance of clinicians, the role of family in medical decision making, advance care planning, and pain and symptom management. Initial recommendations to optimize care for Muslim patients and their families, informed by the described tenets of Muslim faith, are provided for clinicians and health systems administrators. These include Islamic cultural awareness training for staff, assessment of patients and families to determine needs, health education and decision-making outreach, and community health partnerships with local Islamic institutions. PMID:28609264

Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial.

PubMed

Nipp, Ryan D; El-Jawahri, Areej; Traeger, Lara; Jacobs, Jamie M; Gallagher, Emily R; Park, Elyse R; Jackson, Vicki A; Pirl, William F; Temel, Jennifer S; Greer, Joseph A

2018-04-01

Early palliative care interventions enhance patient outcomes, including quality of life, mood, and coping, but it remains unclear whether certain subgroups of patients are more likely to benefit from early palliative care. We explored whether age and sex moderate the improved outcomes seen with early palliative care. We performed a secondary analysis of data from a randomized trial of 350 patients with advanced lung and non-colorectal gastrointestinal cancer. Patients received an early palliative care intervention integrated with oncology care or usual oncology care alone. We used linear regression to determine if age (older or younger than 65) and sex moderated the effects of the intervention on quality of life (Functional Assessment of Cancer Therapy-General (FACT-G)), depression symptoms (Patient Health Questionnaire 9 (PHQ-9)), and coping (Brief COPE) within lung and gastrointestinal subgroups. At 24 weeks, younger patients with lung cancer receiving early palliative care reported increased use of active coping ( B = 1.74; p = 0.02) and decreased use of avoidant coping ( B = -0.97; p = 0.02), but the effects of early palliative care on these outcomes were not significant for older patients. Male patients with lung cancer assigned to early palliative care reported better quality of life (FACT-G: B = 9.31; p = 0.01) and lower depression scores (PHQ-9: B = -2.82; p = 0.02), but the effects of early palliative care on these outcomes were not significant for female patients. At 24 weeks, we found no age or sex moderation effects within the gastrointestinal cancer subgroup. Age and sex moderate the effects of early palliative care for patients with advanced lung cancer. Early palliative care may need to be tailored to individuals' unique sociodemographic and clinical characteristics.

Quality of life in patients with advanced lung cancer treated at home and at a palliative care unit.

PubMed

Leppert, Wojciech; Turska, Anna; Majkowicz, Mikolaj; Dziegielewska, Sylwia; Pankiewicz, Piotr; Mess, Eleonora

2012-08-01

To assess quality of life (QOL) in patients with advanced lung cancer. A prospective study of 78 patients cared at home and at a palliative care unit (PCU) with 2 QOL assessments was conducted. Fifty patients completed the study. In the EORTC QLQ-C30 role, cognitive, social functioning, global QOL, fatigue, pain, dyspnea, and appetite deteriorated; nausea/vomiting improved; dyspnea was more intense in the case of in-home patients. In the EORTC QLQ-LC13 hemoptysis improved; pain in other parts was more intense in the PCU patients. Pain (Visual Analogue scale) was more intense in the PCU patients; the level of activity (Karnofsky) decreased in the case of patients treated at home. QOL deteriorated with few differences between home and the PCU patients.

What Impact Do Chaplains Have? A Pilot Study of Spiritual AIM for Advanced Cancer Patients in Outpatient Palliative Care

PubMed Central

Kestenbaum, Allison; Shields, Michele; James, Jennifer; Hocker, Will; Morgan, Stefana; Karve, Shweta; Rabow, Michael W.; Dunn, Laura B.

2017-01-01

Context Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains’ work in palliative care are scarce. Objectives The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model (“Spiritual AIM”); and to gather pilot data on Spiritual AIM’s effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. Methods Patients with advanced cancer (n=31) who were receiving outpatient palliative care were assigned based on chaplains’ and patients’ outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale (ESAS), Steinhauser spirituality, Brief Religious Coping (Brief RCOPE), Functional Assessment of Chronic Illness Therapy—Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies – Depression (CES-D, 10-item), and Spielberger State Anxiety Inventory (STAI-S). Results From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping and an increase in Fatalism (a subscale of the Mini-MAC). Conclusion Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs, as well as religious and general coping in patients with serious illnesses. PMID:28736103

Caregiver Activation and Home Hospice Nurse Communication in Advanced Cancer Care.

PubMed

Dingley, Catherine E; Clayton, Margaret; Lai, Djin; Doyon, Katherine; Reblin, Maija; Ellington, Lee

Activated patients have the skills, knowledge, and confidence to manage their care, resulting in positive outcomes such as lower hospital readmission and fewer adverse consequences due to poor communication with providers. Despite extensive evidence on patient activation, little is known about activation in the home hospice setting, when family caregivers assume more responsibility in care management. We examined caregiver and nurse communication behaviors associated with caregiver activation during home hospice visits of patients with advanced cancer using a prospective observational design. We adapted Street's Activation Verbal Coding tool to caregiver communication and used qualitative thematic analysis to develop codes for nurse communications that preceded and followed each activation statement in 60 audio-recorded home hospice visits. Caregiver communication that reflected activation included demonstrating knowledge regarding the patient/care, describing care strategies, expressing opinions regarding care, requesting explanations of care, expressing concern about the patient, and redirecting the conversation toward the patient. Nurses responded by providing education, reassessing the patient/care environment, validating communications, clarifying care issues, updating/revising care, and making recommendations for future care. Nurses prompted caregiver activation through focused care-specific questions, open-ended questions/statements, and personal questions. Few studies have investigated nurse/caregiver communication in home hospice, and, to our knowledge, no other studies focused on caregiver activation. The current study provides a foundation to develop a framework of caregiver activation through enhanced communication with nurses. Activated caregivers may facilitate patient-centered care through communication with nurses in home hospice, thus resulting in enhanced outcomes for patients with advanced cancer.

My Team of Care Study: A Pilot Randomized Controlled Trial of a Web-Based Communication Tool for Collaborative Care in Patients With Advanced Cancer.

PubMed

Voruganti, Teja; Grunfeld, Eva; Jamieson, Trevor; Kurahashi, Allison M; Lokuge, Bhadra; Krzyzanowska, Monika K; Mamdani, Muhammad; Moineddin, Rahim; Husain, Amna

2017-07-18

The management of patients with complex care needs requires the expertise of health care providers from multiple settings and specialties. As such, there is a need for cross-setting, cross-disciplinary solutions that address deficits in communication and continuity of care. We have developed a Web-based tool for clinical collaboration, called Loop, which assembles the patient and care team in a virtual space for the purpose of facilitating communication around care management. The objectives of this pilot study were to evaluate the feasibility of integrating a tool like Loop into current care practices and to capture preliminary measures of the effect of Loop on continuity of care, quality of care, symptom distress, and health care utilization. We conducted an open-label pilot cluster randomized controlled trial allocating patients with advanced cancer (defined as stage III or IV disease) with ≥3 months prognosis, their participating health care team and caregivers to receive either the Loop intervention or usual care. Outcome data were collected from patients on a monthly basis for 3 months. Trial feasibility was measured with rate of uptake, as well as recruitment and system usage. The Picker Continuity of Care subscale, Palliative care Outcomes Scale, Edmonton Symptom Assessment Scale, and Ambulatory and Home Care Record were patient self-reported measures of continuity of care, quality of care, symptom distress, and health services utilization, respectively. We conducted a content analysis of messages posted on Loop to understand how the system was used. Nineteen physicians (oncologists or palliative care physicians) were randomized to the intervention or control arms. One hundred twenty-seven of their patients with advanced cancer were approached and 48 patients enrolled. Of 24 patients in the intervention arm, 20 (83.3%) registered onto Loop. In the intervention and control arms, 12 and 11 patients completed three months of follow-up, respectively. A mean

Evaluation of Spiritual Needs of Patients with Advanced Cancer in a Palliative Care Unit

PubMed Central

Valls, Joan; Porta, Josep; Viñas, Juan

2014-01-01

Abstract Introduction: Spiritual needs play an important role in palliative care as both a clinical dimension and a therapeutic strategy. However, recent studies have shown that the management of this dimension still remains a challenge at the clinical level of palliative care. Goals: Our goal was to evaluate the spiritual needs of patients diagnosed with advanced and terminal cancer by the palliative care unit of a hospital in Barcelona, Spain. Methods: An observational study was conducted that involved 50 patients who were recruited between May 2007 and January 2008. A questionnaire was used which included 28 items selected from a review of the literature; the responses were analyzed using a five-point Lickert scale. The results were grouped in 11 categories corresponding to different spiritual needs. Results: Two spiritual needs emerged as the most relevant for the patients: their need to be recognized as a person until the end of their life and their need to know the truth about their illness. The least important spiritual needs were identified as those: for continuity and an afterlife; to get rid of obsessions; to achieve freedom from blame and to be able to forgive others; and the need for reconciliation and to feel forgiven by others. Conclusions: When patients knew the truth about their illnesses and they were treated with dignity, their most important needs were likely to be covered. These results suggest that patients receiving palliative care wish to live for the present with as much normality as possible and show only minor concern for their past and future. PMID:24745870

Impact of Advanced (Open) Access Scheduling on Patients With Chronic Diseases

PubMed Central

Degani, N

2013-01-01

Background The goal of advanced access scheduling is to eliminate wait times for physician visits by ensuring access to same-day appointments, regardless of urgency or health care need. The intent is to reduce delays in access, leading to improvements in clinical care and patient satisfaction, and reductions in the use of urgent care. Objective To evaluate whether implementation of an advanced access scheduling system reduced other types of health service utilization and/or improved clinical measures and patient satisfaction among adults with chronic diseases. Data Sources and Review Methods A literature search was performed on January 29, 2012, for studies published from 1946 (OVID) or 1980 (EMBASE) to January 29, 2012. Systematic reviews, randomized controlled trials, and observational studies were eligible if they evaluated advanced access implementation in adults with chronic diseases and reported health resource utilization, patient outcomes, or patient satisfaction. Results were summarized descriptively. Results One systematic review in a primary care population and 4 observational studies (5 papers) in chronic disease and/or geriatric populations were identified. The systematic review concluded that advanced access did not improve clinical outcomes, but there was no evidence of harm. Findings from the observational studies in chronic disease populations were consistent with those of the systematic review. Advanced access implementation was not consistently associated with changes in clinical outcomes, patient satisfaction, or health service utilization. Limitations All studies were retrospective: 3 studies (4 papers) included historical controls only, and 1 included contemporaneous controls. Findings were inconsistent across studies for a number of outcomes. Conclusions Based on low to very low quality evidence, advanced access did not have a statistically (or clinically) significant impact on health service utilization among patients with diabetes and

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

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.

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.

[Advance directives, a tool to humanize care].

PubMed

Olmari-Ebbing, M; Zumbach, C N; Forest, M I; Rapin, C H

2000-07-01

The relationship between the patient and a medical care giver is complex specially as it implies to the human, juridical and practical points of view. It depends on legal and deontological considerations, but also on professional habits. Today, we are confronted to a fundamental modification of this relationship. Professional guidelines exist, but are rarely applied and rarely taught in universities. However, patients are eager to move from a paternalistic relationship to a true partnership, more harmonious and more respectful of individual values ("value based medicine"). Advance directives give us an opportunity to improve our practices and to provide care consistent with the needs and wishes of each patient.

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

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.

Hospital care following emergency admission: a critical incident case study of the experiences of patients with advanced lung cancer and Chronic Obstructive Pulmonary Disease.

PubMed

Bailey, Cara; Hewison, Alistair; Karasouli, Eleni; Staniszewska, Sophie; Munday, Daniel

2016-08-01

To explore the experiences of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers and healthcare professionals following emergency admission to acute care hospital. Emergency admissions of people with lung cancer and COPD have increased and there is global concern about the number of patients who die in hospital. The experience of patients with advanced lung cancer and COPD admitted to hospital as an emergency when nearing the end of life has not previously been investigated. Qualitative critical incident case study. Semistructured interviews were conducted with 39 patients (15 with COPD and 24 with lung cancer), 20 informal carers and 50 healthcare professionals, exploring patients' experiences of emergency hospital admission. Interviews took place after admission and following discharge. Participants nominated relatives and healthcare professionals for interview. Data were analysed thematically. Patients were satisfied with their 'emergency' care but not the care they received once their initial symptoms had been stabilised. The poorer quality care they experienced was characterised by a lack of attention to their fundamental needs, lack of involvement of the family, poor communication about care plans and a lack of continuity between primary and secondary care. A conceptual model of 'spectacular' and 'subtacular' trajectories of care was used to relate the findings to the wider context of health care provision. The complex nature of illness for patients with advanced respiratory disease makes emergency hospital admissions likely. Whilst patients (with COPD and lung cancer) were satisfied with care in the acute 'spectacular' phase of their admission, more attention needs to be given to the continuing care needs of patients in the 'subtacular' phase. This is the first study to explore the patient experience of acute care following an emergency admission and identifies where there is potential for care to be improved. �

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

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.

Patients' understanding and use of advance directives.

PubMed Central

Jacobson, J A; White, B E; Battin, M P; Francis, L P; Green, D J; Kasworm, E S

1994-01-01

The Patient Self-Determination Act was implemented in December 1991. Before and after its implementation, we used a structured interview of 302 randomly selected patients to determine their awareness, understanding, and use of advance directives. Implementation of the Act did not have a major effect on these. Although more than 90% of patients were aware of the living will, only about a third selected the correct definition or the correct circumstances in which it applied, and less than 20% of patients had completed one. About a third of patients were aware of a Durable Power of Attorney for Health Care and chose the correct definition, and about half identified the correct circumstances in which it applies; less than 10% had completed such a document. Surprisingly, patients who said they had completed advance directives did not demonstrate better understanding of these documents. Our results indicate that many patients, including some who have completed advance directives, do not fully understand them. It may be unwise to regard these documents as carefully considered, compelling statements of patients' preferences. Appropriate responses to our findings include increased public education, revising state statutes to bring them into congruence with public perception, and expanding the dialogue between physicians and patients. PMID:8191755

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.

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

[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.

An In-home Advanced Robotic System to Manage Elderly Home-care Patients' Medications: A Pilot Safety and Usability Study.

PubMed

Rantanen, Pekka; Parkkari, Timo; Leikola, Saija; Airaksinen, Marja; Lyles, Alan

2017-05-01

We examined the safety profile and usability of an integrated advanced robotic device and telecare system to promote medication adherence for elderly home-care patients. There were two phases. Phase I aimed to verify under controlled conditions in a single nursing home (n = 17 patients) that no robotic malfunctions would hinder the device's safe use. Phase II involved home-care patients from 3 sites (n = 27) who were on long-term medication. On-time dispensing and missed doses were recorded by the robotic system. Patients' and nurses' experiences were assessed with structured interviews. The 17 nursing home patients had 457 total days using the device (Phase I; mean, 26.9 per patient). On-time sachet retrieval occurred with 97.7% of the alerts, and no medication doses were missed. At baseline, Phase II home-dwelling patients reported difficulty remembering to take their medicines (23%), and 18% missed at least 2 doses per week. Most Phase II patients (78%) lived alone. The device delivered and patients retrieved medicine sachets for 99% of the alerts. All patients and 96% of nurses reported the device was easy to use. This trial demonstrated the safety profile and usability of an in-home advanced robotic device and telecare system and its acceptability to patients and nurses. It supports individualized patient dosing schedules, patient-provider communications, and on-time, in-home medication delivery to promote adherence. Real time dose-by-dose monitoring and communication with providers if a dose is missed provide oversight generally not seen in home care. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

Feeling Heard & Understood in the Hospital Environment: Benchmarking Communication Quality Among Patients with Advanced Cancer Before and After Palliative Care Consultation.

PubMed

Ingersoll, Luke T; Saeed, Fahad; Ladwig, Susan; Norton, Sally A; Anderson, Wendy; Alexander, Stewart C; Gramling, Robert

2018-05-02

Maximizing value in palliative care requires continued development and standardization of communication quality indicators. To describe the basic epidemiology of a newly-adopted patient-centered communication quality indicator for hospitalized palliative care patie9nts with advanced cancer. Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the United States. Participants completed the Heard & Understood quality indicator immediately before and the day following the initial palliative care consultation: "Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses and hospital staff? Completely/Quite a Bit/Moderately/Slightly/Not at All". We categorized "Completely" as indicating ideal quality. Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at end-of-life, and prognosis expectations were associated with pre-consultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day following palliative care consultation. The greatest pre-post improvement was among people who had unformed end-of-life treatment preferences or who reported having "no idea" about their prognosis at baseline. Most patients felt incompletely heard and understood at the time of referral to palliative care consultation and more than half improved following consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. Copyright © 2018. Published by Elsevier Inc.

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.

Consciousness levels one week after admission to a palliative care unit improve survival prediction in advanced cancer patients.

PubMed

Tsai, Jaw-Shiun; Chen, Chao-Hsien; Wu, Chih-Hsun; Chiu, Tai-Yuan; Morita, Tatsuya; Chang, Chin-Hao; Hung, Shou-Hung; Lee, Ya-Ping; Chen, Ching-Yu

2015-02-01

Consciousness is an important factor of survival prediction in advanced cancer patients. However, effects on survival of changes over time in consciousness in advanced cancer patients have not been fully explored. This study evaluated changes in consciousness after admission to a palliative care unit and their correlation with prognosis in terminal cancer patients. This is a prospective observational study. From a palliative care unit in Taiwan, 531 cancer patients (51.8% male) were recruited. Consciousness status was assessed at admission and one week afterwards and recorded as normal or impaired. The mean age was 65.28±13.59 years, and the average survival time was 23.41±37.69 days. Patients with normal consciousness at admission (n=317) had better survival than those with impaired consciousness at admission (n=214): (17.0 days versus 6.0 days, p<0.001). In the analysis on survival within one week after admission, those with normal consciousness at admission had a higher percentage of survival than the impaired (78.9% versus 44.3%, p<0.001). Patients were further classified into four groups according to consciousness levels: (1) normal at admission and one week afterwards, (2) impaired at admission but normal one week afterwards, (3) normal at admission but impaired one week afterwards, and (4) impaired both at admission and one week afterwards. The former two groups had significantly better survival than the latter two groups: (median survival counted from day 7 after admission), 25.5, 27.0, 7.0, and 7.0 days, respectively. Consciousness levels one week after admission should be integrated into survival prediction in advanced cancer patients.

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

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.

The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers.

PubMed

Daveson, Barbara A; Harding, Richard; Shipman, Cathy; Mason, Bruce L; Epiphaniou, Eleni; Higginson, Irene J; Ellis-Smith, Clare; Henson, Lesley; Munday, Dan; Nanton, Veronica; Dale, Jeremy R; Boyd, Kirsty; Worth, Allison; Barclay, Stephen; Donaldson, Anne; Murray, Scott

2014-01-01

To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. Three cases from contrasting primary, secondary and tertiary settings within Britain. Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients' and caregivers' needs, preferences, circumstances and abilities. Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients' and caregivers' views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of

Impact of nutritional status on the quality of life of advanced cancer patients in hospice home care.

PubMed

Shahmoradi, Negar; Kandiah, Mirnalini; Peng, Loh Su

2009-01-01

Cancer patients frequently experience malnutrition and this is an important factor in impaired quality of life. This cross-sectional study examined the association between global quality of life and its various subscales with nutritional status among 61 (33 females and 28 males) advanced cancer patients cared for by selected hospices in peninsular Malaysia. The Patient Generated-Subjective Global Assessment (PG-SGA) and the Hospice Quality of Life Index (HQLI) were used to assess nutritional status and quality of life, respectively. Nine (14.7%) patients were well-nourished, 32 (52.5%) were moderately or suspected of being malnourished while 20 (32.8%) of them were severely malnourished. The total HQLI mean score for these patients was 189.9-/+51.7, with possible scores ranging from 0 to 280. The most problem areas in these patients were in the domain of functional well-being and the least problems were found in the social/spiritual domain. PG-SGA scores significantly correlated with total quality of life scores (r2= 0.38, p<0.05), psychophysiological well-being (r2= 0.37, p<0.05), functional well-being (r2= 0.42, p<0.05) and social/ spiritual well-being (r2= 0.07, p<0.05). Thus, patients with a higher PG-SGA score or poorer nutritional status exhibited a lower quality of life. Advanced cancer patients with poor nutritional status have a diminished quality of life. These findings suggest that there is a need for a comprehensive nutritional intervention for improving nutritional status and quality of life in terminally ill cancer patients under hospice care.

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.

Prevalence of delirium in advanced cancer patients in home care and hospice and outcomes after 1 week of palliative care.

PubMed

Mercadante, Sebastiano; Masedu, Francesco; Balzani, Isabella; De Giovanni, Daniela; Montanari, Luigi; Pittureri, Cristina; Bertè, Raffaella; Russo, Domenico; Ursini, Laura; Marinangeli, Franco; Aielli, Federica

2018-03-01

The aim of this study was to assess the prevalence of delirium in advanced cancer patients admitted to different palliative care services in Italy and possible related factors. The secondary outcome was to assess the changes of delirium after 1 week of palliative care. A consecutive sample of patients was screened for delirium in period of 1 year in seven palliative care services. General data, including primary tumor, age, gender, concomitant disease, palliative prognostic score (PaP), and Karnofsky status, were collected. Possible causes or factors associated with delirium were looked for. The Edmonton Symptom Assessment Scale was used to assess physical and psychological symptoms and the Memorial Delirium Assessment Scale (MDAS) to assess the cognitive status of patients, at admission (T0) and 1 week after palliative care (T7). Of 848 patients screened, 263 patients were evaluated. Sixty-six patients had only the initial evaluation. The mean Karnofsky status was 34.1 (SD = 6.69); the mean PaP score at admission was 6.9 (SD = 3.97). The mean duration of palliative care assistance, equivalent to survival, was 38.4 days (SD = 48, range 2-220). The mean MDAS values at admission and after 1 week of palliative care were 6.9 (SD = 6.71) and 8.8 (SD = 8.26), respectively. One hundred ten patients (41.8%) and 167 patients (67.3%) had MDAS values ≥ 7 at admission and after 1 week of palliative care, respectively. Age, dehydration, cachexia, chemotherapy in the last three months, and intensity of drowsiness and dyspnea were independently associated with a MDAS > 7. A worsening of drowsiness, the use of opioids, and the use of corticosteroids were independently associated with changes of MDAS from T0 to T7. Although the prevalence of delirium seems to be similar to that reported in other acute settings, delirium tended to worsen or poorly responded to a palliative care treatment. Some clinical factors were independently associated with delirium. This

Supportive Care: Integration of Patient-Centered Kidney Care to Manage Symptoms and Geriatric Syndromes

PubMed Central

Jassal, Sarbjit Vanita

2016-01-01

Dialysis care is often associated with poor outcomes including low quality of life (QOL). To improve patient-reported outcomes, incorporation of the patient’s needs and perspective into the medical care they receive is essential. This article provides a framework to help clinicians integrate symptom assessment and other measures such as QOL and frailty scores into a clinical approach to the contemporary supportive care of patients with advanced CKD. This approach involves (1) defining our understanding of kidney supportive care, patient-centered dialysis, and palliative dialysis; (2) understanding and recognizing common symptoms associated with advanced CKD; (3) discussing the concepts of physical function, frailty, and QOL and their role in CKD; and (4) identifying the structural and process barriers that may arise when patient-centered dialysis is being introduced into clinical practice. PMID:27510454

The impact of advanced technology on critical care. Dilemmas in the making.

PubMed

Aarons, D E

1998-12-01

Advanced technology has enhanced our ability to diagnose and treat critically ill patients, thereby assisting in prolonging life for many. However, its high cost has been prohibitive, and it may impose more burdens than benefits on some patients. Although technological advances have accelerated social change, many have also fuelled legal and ethical concerns. Consequently, the rationale for the use of advanced technology in the care of critically ill patients should be clear and ethically justified.

Advocating for Patient Care Literacy.

PubMed

Poirier, Therese I

2018-02-01

The value of the arts and humanities in becoming an "educated" pharmacist is reviewed in this commentary. The term "patient care literacy" is defined as becoming a more humane pharmacist. This implies not only using heads but HARTSS (humanities, arts and social sciences) for developing the necessary skills. A conceptual framework for curricular reform that focuses on using the arts and humanities is proposed for advancing patient care literacy. Methods for enhancing use of arts and humanities for developing pharmacy graduates is specifically proposed. The need for more empiric research to demonstrate the value of the arts and humanities in developing a patient care literate professional is highlighted.

Nitric oxide synthesis in patients with advanced HIV infection.

PubMed Central

Evans, T G; Rasmussen, K; Wiebke, G; Hibbs, J B

1994-01-01

The discovery that humans produce nitric oxide and that this molecule plays an important role in cell communication, host resistance to infection, and perhaps in host defence to neoplastic disease, has created much interest in further research on its function in the body. A cytokine-inducible high output L-arginine/nitric oxide pathway was recently detected in patients with advanced malignancy treated with IL-2. The production of nitric oxide was thus examined in patients with advanced HIV infection and in intensive care unit control patients. Extrinsic nitrate and nitrite consumption were carefully controlled in the diet or through the use of total parenteral nutrition. Seven of eight HIV+ patients were placed into positive nitrogen balance. Nitric oxide synthesis was found to be within the normal human range. In contrast, nitric oxide synthesis in extremely ill intensive care unit patients was low normal to depressed. PMID:8033424

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.

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 ...

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.

Exploring the potential role of the advanced nurse practitioner within a care path for patients with chronic fatigue syndrome.

PubMed

Ryckeghem, Hannah; Delesie, Liesbeth; Tobback, Els; Lievens, Stefaan; Vogelaers, Dirk; Mariman, An

2017-07-01

To explore the experiences and expectations of patients with chronic fatigue syndrome and general practitioners to develop the potential role of an advanced nurse practitioner at the diagnostic care path of abnormal fatigue developed for regional transmural implementation in the Belgian provinces of East and West Flanders. Patients with chronic fatigue syndrome experience an incapacitating chronic fatigue that is present for at least 6 months. Since many uncertainties exist about the causes and progression of the disease, patients have to cope with disbelief and scepticism. Access to health care may be hampered, which could lead to inappropriate treatments and guidance. Qualitative design. Individual semi-structured interviews were conducted with patients with chronic fatigue syndrome and general practitioners in Belgium. Data were collected over 9 months in 2014-2015. All interviews were audio recorded and transcribed for qualitative analysis using open explorative thematic coding. Fifteen patients and 15 general practitioners were interviewed. Three themes were identified: mixed feelings with the diagnosis, lack of one central intermediator and insufficient coordination. Participants stressed the need for education, knowledge and an intermediator to provide relevant information at the right time and to build up a trust relationship. This qualitative exploration underscores some clear deficiencies in the guidance of patients suffering from chronic fatigue syndrome and abnormal fatigue. An advanced nurse practitioner as a central intermediator in the transmural care of these patients could promote interdisciplinary/multidisciplinary collaboration and effective communication, provide education and ensure a structured and coordinated approach. © 2016 John Wiley & Sons Ltd.

The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care.

PubMed

Jensen, Roxanne E; Rothrock, Nan E; DeWitt, Esi M; Spiegel, Brennan; Tucker, Carole A; Crane, Heidi M; Forrest, Christopher B; Patrick, Donald L; Fredericksen, Rob; Shulman, Lisa M; Cella, David; Crane, Paul K

2015-02-01

Patient-reported outcomes (PROs) are gaining recognition as key measures for improving the quality of patient care in clinical care settings. Three factors have made the implementation of PROs in clinical care more feasible: increased use of modern measurement methods in PRO design and validation, rapid progression of technology (eg, touchscreen tablets, Internet accessibility, and electronic health records), and greater demand for measurement and monitoring of PROs by regulators, payers, accreditors, and professional organizations. As electronic PRO collection and reporting capabilities have improved, the challenges of collecting PRO data have changed. To update information on PRO adoption considerations in clinical care, highlighting electronic and technical advances with respect to measure selection, clinical workflow, data infrastructure, and outcomes reporting. Five practical case studies across diverse health care settings and patient populations are used to explore how implementation barriers were addressed to promote the successful integration of PRO collection into the clinical workflow. The case studies address selecting and reporting of relevant content, workflow integration, previsit screening, effective evaluation, and electronic health record integration. These case studies exemplify elements of well-designed electronic systems, including response automation, tailoring of item selection and reporting algorithms, flexibility of collection location, and integration with patient health care data elements. They also highlight emerging logistical barriers in this area, such as the need for specialized technological and methodological expertise, and design limitations of current electronic data capture systems.

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.

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.

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.

Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians.

PubMed

Barnett, Michael D; Williams, Beverly R; Tucker, Rodney O

2016-05-01

End-of-life discussions in critically-ill patients with acute surgical conditions may be rushed and occur earlier during hospitalization. This study explores the concept of sudden advanced illness (SAI) and its relevance to patients requiring Palliative and Surgical Critical Care. Semi-structured interviews were completed with 16 physicians, querying each about (1) definitional components, (2) illustrative cases, and (3) comfort with SAI. Analysis was done by grounded theory. SAI was characterized as unforeseen, emerging abruptly and producing devastating injury, often in healthy, younger patients. There is (1) prognostic uncertainty, (2) loss of capacity, and (3) unprepared surrogate decision-making. Cases are emotionally-charged and often personal. The emerging concept of SAI is important for understanding how Palliative Care can enhance care for this subset of patients. © The Author(s) 2014.

Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers

PubMed Central

2013-01-01

Background Communication about prognosis and treatment choices is essential for informed decision making in advanced cancer. This article describes an investigation designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. Methods/design The Values and Options in Cancer Care (VOICE) Study is a National Cancer Institute sponsored randomized controlled trial conducted in the Rochester/Buffalo, NY and Sacramento, CA regions. A total of 40 oncologists, approximately 400 patients with advanced cancer, and their family/friend caregivers (one per patient, when available) are expected to enroll in the study. Drawing upon ecological theory, the intervention uses a two-pronged approach: oncologists complete a multifaceted tailored educational intervention involving standardized patient instructors (SPIs), and patients and caregivers complete a coaching intervention to facilitate prioritizing and discussing questions and concerns. Follow-up data will be collected approximately quarterly for up to three years. Discussion The intervention is hypothesized to enhance patient-centered communication, quality of care, and patient outcomes. Analyses will examine the effects of the intervention on key elements of physician-patient-caregiver communication (primary outcomes), the physician-patient relationship, shared understanding of prognosis, patient well-being, and health service utilization (secondary outcomes). Trial registration Clinical Trials Identifier: NCT01485627 PMID:23570278

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'…

Phase III randomized clinical trial comparing tremelimumab with standard-of-care chemotherapy in patients with advanced melanoma.

PubMed

Ribas, Antoni; Kefford, Richard; Marshall, Margaret A; Punt, Cornelis J A; Haanen, John B; Marmol, Maribel; Garbe, Claus; Gogas, Helen; Schachter, Jacob; Linette, Gerald; Lorigan, Paul; Kendra, Kari L; Maio, Michele; Trefzer, Uwe; Smylie, Michael; McArthur, Grant A; Dreno, Brigitte; Nathan, Paul D; Mackiewicz, Jacek; Kirkwood, John M; Gomez-Navarro, Jesus; Huang, Bo; Pavlov, Dmitri; Hauschild, Axel

2013-02-10

In phase I/II trials, the cytotoxic T lymphocyte-associated antigen-4-blocking monoclonal antibody tremelimumab induced durable responses in a subset of patients with advanced melanoma. This phase III study evaluated overall survival (OS) and other safety and efficacy end points in patients with advanced melanoma treated with tremelimumab or standard-of-care chemotherapy. Patients with treatment-naive, unresectable stage IIIc or IV melanoma were randomly assigned at a ratio of one to one to tremelimumab (15 mg/kg once every 90 days) or physician's choice of standard-of-care chemotherapy (temozolomide or dacarbazine). In all, 655 patients were enrolled and randomly assigned. The test statistic crossed the prespecified futility boundary at second interim analysis after 340 deaths, but survival follow-up continued. At final analysis with 534 events, median OS by intent to treat was 12.6 months (95% CI, 10.8 to 14.3) for tremelimumab and 10.7 months (95% CI, 9.36 to 11.96) for chemotherapy (hazard ratio, 0.88; P = .127). Objective response rates were similar in the two arms: 10.7% in the tremelimumab arm and 9.8% in the chemotherapy arm. However, response duration (measured from date of random assignment) was significantly longer after tremelimumab (35.8 v 13.7 months; P = .0011). Diarrhea, pruritus, and rash were the most common treatment-related adverse events in the tremelimumab arm; 7.4% had endocrine toxicities. Seven deaths in the tremelimumab arm and one in the chemotherapy arm were considered treatment related by either investigators or sponsor. This study failed to demonstrate a statistically significant survival advantage of treatment with tremelimumab over standard-of-care chemotherapy in first-line treatment of patients with metastatic melanoma.

The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers

PubMed Central

Daveson, Barbara A.; Harding, Richard; Shipman, Cathy; Mason, Bruce L.; Epiphaniou, Eleni; Higginson, Irene J.; Ellis-Smith, Clare; Henson, Lesley; Munday, Dan; Nanton, Veronica; Dale, Jeremy R.; Boyd, Kirsty; Worth, Allison; Barclay, Stephen; Donaldson, Anne; Murray, Scott

2014-01-01

Objectives To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. Design A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. Methods Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. Participants Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. Settings Three cases from contrasting primary, secondary and tertiary settings within Britain. Results Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. Conclusions Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding

Guideline for the management of terminal haemorrhage in palliative care patients with advanced cancer discharged home for end-of-life care.

PubMed

Ubogagu, Edith; Harris, Dylan G

2012-12-01

Terminal haemorrhage is a rare and distressing emergency in palliative oncology. We present an algorithm for the management of terminal haemorrhage in patients likely to receive end-of-life care at home, based on a literature review of the management of terminal haemorrhage for patients with advanced cancer, where a DNAR (do not attempt resuscitation) order is in place and the patient wishes to die at home. A literature review was conducted to identify literature on the management of terminal haemorrhage in patients with advanced cancer who are no longer amenable to active interventional/invasive procedures. Electronic databases, the grey literature, local guidelines from hospitals and hospices, and online web portals were all searched systematically. The literature review was used to formulate a management algorithm. The evidence base is very limited. A three-step practical algorithm is suggested: preparing for the event, managing the event ('ABC') and 'aftercare'. Step 1 involves the identification and optimisation of risk factors. Step 2 (the event) consists of A (assure and re-assure the patient), B (be there - above all stay with the patient) and C (comfort, calm, consider dark towels and anxiolytics if possible). Step 3 (the aftercare) involves the provision of practical and psychological support to those involved including relatives and professionals. Terminal haemorrhage is a rare yet highly feared complication of advanced cancer, for which there is a limited evidence base to guide management. The suggested three-step approach to managing this situation gives professionals a logical framework within which to work.

Advocating for Patient Care Literacy

PubMed Central

2018-01-01

The value of the arts and humanities in becoming an “educated” pharmacist is reviewed in this commentary. The term “patient care literacy” is defined as becoming a more humane pharmacist. This implies not only using heads but HARTSS (humanities, arts and social sciences) for developing the necessary skills. A conceptual framework for curricular reform that focuses on using the arts and humanities is proposed for advancing patient care literacy. Methods for enhancing use of arts and humanities for developing pharmacy graduates is specifically proposed. The need for more empiric research to demonstrate the value of the arts and humanities in developing a patient care literate professional is highlighted. PMID:29491507

Palliative Care in Advanced Cancer Patients: How and When?

PubMed Central

Yennurajalingam, Sriram

2012-01-01

Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research. PMID:22252934

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

PubMed

Ho, Grace W K; Skaggs, Lauren; Yenokyan, Gayane; Kellogg, Anela; Johnson, Julie A; Lee, Mei Ching; Heinze, Katherine; Hughes, Mark T; Sulmasy, Daniel P; Kub, Joan; Terry, Peter B; Astrow, Alan B; Zheng, Jing; Lehmann, Lisa Soleymani; Nolan, Marie T

2017-02-01

There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Cardiac patients' perception of patient-centred care: a qualitative study.

PubMed

Esmaeili, Maryam; Cheraghi, Mohammad A; Salsali, Mahvash

2016-03-01

The aim of this study was to explore cardiac patients' perception of patient-centred care. Despite patient's importance in the process of care, less attention has been paid to experiences and expectations of patients in definitions of patient-centred care. As patients are an important element in process of patient-centred care, organizing care programs according to their perceptions and expectations will lead to enhanced quality of care and greater patient satisfaction. This study is a descriptive qualitative study. Content analysis approach was performed for data analysis. Participants were 18 cardiac patients (10 women and 8 men) hospitalized in coronary care units of teaching hospitals affiliated to Tehran University of Medical Sciences. We collected the study data through conducting personal face-to-face semi-structured interviews. The participants' perceptions of patient-centred care fell into three main themes including managing patients uncertainty, providing care with more flexibility and establishing a therapeutic communication. The second theme consisted of two sub-themes: empathizing with patients and having the right to make independent decisions. Receiving patient-centred care is essential for cardiac patients. Attention to priorities and preferences of cardiac patients and making decisions accordingly is among effective strategies for achieving patient-centred care. Cardiac care unit nurses ought to be aware that in spite of technological developments and advances, it is still important to pay attention to patients' needs and expectations in order to achieve patient satisfaction. In planning care programs, they should consider accountability towards patients' needs, flexibility in process of care and establishing medical interactions as an effective strategy for improving quality of care. © 2014 British Association of Critical Care Nurses.

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

Primary care physician assistant and advance practice nurses roles: Patient healthcare utilization, unmet need, and satisfaction.

PubMed

Everett, Christine M; Morgan, Perri; Jackson, George L

2016-12-01

Team-based care involving physician assistants (PAs) and advance practice nurses (APNs) is one strategy for improving access and quality of care. PA/APNs perform a variety of roles on primary care teams. However, limited research describes the relationship between PA/APN role and patient outcomes. We examined multiple outcomes associated with primary care PA/APN roles. In this cross-sectional survey analysis, we studied adult respondents to the 2010 Health Tracking Household Survey. Outcomes included primary care and emergency department visits, hospitalizations, unmet need, and satisfaction. PA/APN role was categorized as physician only (no PA/APN visits; reference), usual provider (PA/APN provide majority of primary care visits) or supplemental provider (physician as usual provider, PA/APN provide a subset of visits). Multivariable logistic and multinomial logistic regressions were performed. Compared to people with physician only care, patients with PA/APNs as usual providers [5-9 visits RRR=2.4 (CI 1.8-3.4), 10+ visits RRR=3.0 (CI 2.0-4.5): reference 2-4 visits] and supplemental providers had increased risk of having 5 or more primary care visits [5-9 visits RRR=1.3 (CI 1.0-1.6)]. Patients reporting PA/APN as supplemental providers had increased risk of emergency department utilization [2+ visits: RRR 1.8 (CI 1.3, 2.5)], and lower satisfaction [very dissatisfied: RRR 1.8 (CI 1.03-3.0)]. No differences were seen for hospitalizations or unmet need. Healthcare utilization patterns and satisfaction varied between adults with PA/APN in different roles, but reported unmet need did not. These findings suggest a wide range of outcomes should be considered when identifying the best PA/APN role on primary care teams. Copyright © 2016 Elsevier Inc. All rights reserved.

Standardizing biomarker testing for Canadian patients with advanced lung cancer

PubMed Central

Melosky, B.; Blais, N.; Cheema, P.; Couture, C.; Juergens, R.; Kamel-Reid, S.; Tsao, M.-S.; Wheatley-Price, P.; Xu, Z.; Ionescu, D.N.

2018-01-01

Background The development and approval of both targeted and immune therapies for patients with advanced non-small cell lung cancer (nsclc) has significantly improved patient survival rates and quality of life. Biomarker testing for patients newly diagnosed with nsclc, as well as for patients progressing after treatment with epidermal growth factor receptor (EGFR) inhibitors, is the standard of care in Canada and many parts of the world. Methods A group of thoracic oncology experts in the field of thoracic oncology met to describe the standard for biomarker testing for lung cancer in the Canadian context, focusing on evidence-based recommendations for standard-of-care testing for EGFR, anaplastic lymphoma kinase (ALK), ROS1, BRAF V600 and programmed death-ligand (PD-L1) at the time of diagnosis of advanced disease and EGFR T790M upon progression. As well, additional exploratory molecules and targets are likely to impact future patient care, including MET exon 14 skipping mutations and whole gene amplification, RET translocations, HER2 (ERBB2) mutations, NTRK, RAS (KRAS and NRAS), as well as TP53. Results The standard of care must include the incorporation of testing for novel biomarkers as they become available, as it will be difficult for national guidelines to keep pace with technological advances in this area. Conclusions Canadian patients with nsclc should be treated equally; the minimum standard of care is defined in this paper. PMID:29507487

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

The Role of Technical Advances in the Adoption and Integration of Patient-Reported Outcomes in Clinical Care

PubMed Central

Jensen, Roxanne E.; Rothrock, Nan E.; DeWitt, Esi Morgan; Spiegel, Brennan; Tucker, Carole A.; Crane, Heidi M.; Forrest, Christopher B.; Patrick, Donald L.; Fredericksen, Rob; Shulman, Lisa M.; Cella, David; Crane, Paul K.

2016-01-01

Background Patient-reported outcomes (PROs) are gaining recognition as key measures for improving the quality of patient care in clinical care settings. Three factors have made the implementation of PROs in clinical care more feasible: increased use of modern measurement methods in PRO design and validation, rapid progression of technology (e.g., touch screen tablets, Internet accessibility, and electronic health records (EHRs)), and greater demand for measurement and monitoring of PROs by regulators, payers, accreditors, and professional organizations. As electronic PRO collection and reporting capabilities have improved, the challenges of collecting PRO data have changed. Objectives To update information on PRO adoption considerations in clinical care, highlighting electronic and technical advances with respect to measure selection, clinical workflow, data infrastructure, and outcomes reporting. Methods Five practical case studies across diverse healthcare settings and patient populations are used to explore how implementation barriers were addressed to promote the successful integration of PRO collection into the clinical workflow. The case studies address selecting and reporting of relevant content, workflow integration, pre-visit screening, effective evaluation, and EHR integration. Conclusions These case studies exemplify elements of well-designed electronic systems, including response automation, tailoring of item selection and reporting algorithms, flexibility of collection location, and integration with patient health care data elements. They also highlight emerging logistical barriers in this area, such as the need for specialized technological and methodological expertise, and design limitations of current electronic data capture systems. PMID:25588135

Perception of Curability Among Advanced Cancer Patients: An International Collaborative Study.

PubMed

Yennurajalingam, Sriram; Rodrigues, Luis Fernando; Shamieh, Omar; Tricou, Colombe; Filbet, Marilène; Naing, Kyaw; Ramaswamy, Akhileshwaran; Perez-Cruz, Pedro Emilio; Bautista, Mary Jocelyn S; Bunge, Sofia; Muckaden, Mary Ann; Sewram, Vikash; Fakrooden, Sarah; Noguera-Tejedor, Antonio; Rao, Shobha S; Liu, Diane; Park, Minjeong; Williams, Janet L; Lu, Zhanni; Cantu, Hilda; Hui, David; Reddy, Suresh K; Bruera, Eduardo

2018-04-01

There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p  = .027), higher education (OR 0.37, p  < .0001), unemployment status (OR 0.69, p  = .02), and being from France (OR 0.26, p  < .0001) and South Africa (OR 0.52, p  = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p  = .0005), and being from Philippines (OR 15.49, p  < .0001), Jordan (OR 8.43, p  < .0001), Brazil (OR 2.17, p  = .0037), and India (OR 2.47, p  = .039). Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer

Physician allocation of Medicare resources for patients with advanced cancer.

PubMed

Rocke, Daniel J; Lee, Walter T; Beumer, Halton W; Taylor, Donald H; Schulz, Kristine; Thomas, Steven; Puscas, Liana

2013-08-01

Little is known about what patients and physicians value in end-of-life care, or how these groups would craft a health plan for those with advanced cancer. The study objective was to assess how otolaryngology, head and neck surgery (OHNS) physicians would structure a Medicare benefit plan for patients with advanced cancer, and to compare this with cancer patient and cancer patient caregiver preferences. OHNS physicians used an online version of a validated tool for assessing preferences for health plans in the setting of limited resources. These data were compared to cancer patient and caregiver preferences. OHNS physicians nationwide were assessed with comparison to similar data obtained in a separate study of cancer patients and their caregivers treated at Duke University Medical Center. Otolaryngology physicians (n=767) completed the online assessment and this was compared with data from 146 patients and 114 caregivers. OHNS physician allocations differed significantly in 14 of the 15 benefit categories when compared with patients and caregivers. Physicians elected more coverage in the Advice, Emotional Care, Palliative Care, and Treatment for Cancer benefit categories. Patients and their caregivers elected more coverage in the Cash, Complementary Care, Cosmetic Care, Dental and Vision, Drug Coverage, Home Improvement, House Calls, Nursing Facility, Other Medical Care, and Primary Care benefit categories. Otolaryngology physicians have significantly different values in end-of-life care than cancer patients and their caregivers. This information is important for efficient allocation of scarce Medicare resources and for effective end-of-life discussions, both of which are key for developing appropriate health policy.

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

Health care resource use among patients with advanced non-small cell lung cancer: the PIvOTAL retrospective observational study.

PubMed

Lee, Dae Ho; Isobe, Hiroshi; Wirtz, Hubert; Aleixo, Sabina Bandeira; Parente, Phillip; de Marinis, Filippo; Huang, Min; Arunachalam, Ashwini; Kothari, Smita; Cao, Xiting; Donnini, Nello; Woodgate, Ann-Marie; de Castro, Javier

2018-03-01

Data are scarce regarding real-world health care resource use (HCRU) for non-small cell lung cancer (NSCLC). An understanding of current clinical practices and HCRU is needed to provide a benchmark for rapidly evolving NSCLC management recommendations and therapeutic options. The objective of this study was to describe real-world HCRU for patients with advanced NSCLC. This multinational, retrospective chart review study was conducted at academic and community oncology sites in Italy, Spain, Germany, Australia, Japan, South Korea, Taiwan, and Brazil. Deidentified data were drawn from medical records of 1440 adults (≥18 years old) who initiated systemic therapy (2011 to mid-2013) for a new, confirmed diagnosis of advanced or metastatic (stage IIIB or IV) NSCLC. We summarized HCRU associated with first and subsequent lines of systemic therapy for advanced/metastatic NSCLC. The proportion of patients who were hospitalized at least once varied by country from 24% in Italy to 81% in Japan during first-line therapy and from 22% in Italy to 84% in Japan during second-line therapy; overall hospitalization frequency was 2.5-11.1 per 100 patient-weeks, depending on country. Emergency visit frequency also varied among countries (overall from 0.3-5.9 per 100 patient-weeks), increasing consistently from first- through third-line therapy in each country. The outpatient setting was the most common setting of resource use. Most patients in the study had multiple outpatient visits in association with each line of therapy (overall from 21.1 to 59.0 outpatient visits per 100 patient-weeks, depending on country). The use of health care resources showed no regular pattern associated with results of tests for activating mutations of the epidermal growth factor receptor (EGFR) gene or anaplastic lymphoma kinase (ALK) gene rearrangements. HCRU varied across countries. These findings suggest differing approaches to the clinical management of advanced NSCLC among the eight countries

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.

Factors associated with emergency services use in Taiwanese advanced cancer patients receiving palliative home care services during out-of-hours periods: a retrospective medical record study.

PubMed

Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun

2018-03-12

For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.

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.

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.

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.

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

Transition towards end of life in palliative care: an exploration of its meaning for advanced cancer patients in Europe.

PubMed

Larkin, Philip J; Dierckx de Casterlé, Bernadette; Schotsmans, Paul

2007-01-01

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.

Is early integration of palliative care feasible and acceptable for advanced respiratory and gastrointestinal cancer patients? A phase 2 mixed-methods study.

PubMed

Costantini, Massimo; Apolone, Giovanni; Tanzi, Silvia; Falco, Francesco; Rondini, Ermanno; Guberti, Monica; Fanello, Silvia; Cavuto, Silvio; Savoldi, Luisa; Piro, Roberto; Mecugni, Daniela; Di Leo, Silvia

2018-01-01

There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration. Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists. A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700). Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention. The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team. Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.

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.

Pain experiences of patients with advanced cancer: A qualitative descriptive study.

PubMed

Erol, Ozgul; Unsar, Serap; Yacan, Lale; Pelin, Meryem; Kurt, Seda; Erdogan, Bülent

2018-04-01

Uncontrolled pain, especially in patients with advanced cancer, affects quality of life negatively and causes negative physical and psychological conditions. The aim of this study was to explore the pain experiences of patients with advanced cancer and how they manage with pain, and to present a view of pain management approaches of nurses from the perspectives of the patients. This was a qualitative descriptive study of sixteen hospitalized patients with advanced cancer. Data were collected using semi-structured interviews with patients. Data were analysed by Colaizzi's phenomenological method. This study found that patients with advanced cancer who had pain experienced anxiety, helplessness, hopelessness and many restrictions in daily life as well as inability to manage with pain. Most of the patients with advanced cancer were not satisfied with their nursing care with regard to pain management. The themes that emerged were pain perception and experiences, effects of pain on daily life, pain management and management strategies and the patients' perspectives about nursing approaches to pain. This study demonstrated the difficulties of patients with advanced cancer who experienced pain in their daily lives, yet lack pain management strategies. Furthermore, nurses' caring approaches to patients with advanced cancer who experienced pain was found inadequate. Oncology nurses should provide educational interventions in order to enhance knowledge and skills about pain assessment and non-pharmacologic and pharmacologic strategies used in pain management. Copyright © 2018 Elsevier Ltd. All rights reserved.

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

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

An Online Learning Module to Increase Self-Efficacy and Involvement in Care for Patients With Advanced Lung Cancer: Research Protocol.

PubMed

Janssen, Anna; Shaw, Tim; Nagrial, Adnan; Pene, Christopher; Rabbets, Melanie; Carlino, Matteo; Zachulski, Clare; Phillips, Jane; Birnbaum, Robert; Gandhi, Tejal; Harnett, Paul

2016-08-08

Improving patient care for individuals with lung cancer is a priority due to the increasing burden of the disease globally. One way this can be done is by improving patient self-management capabilities through increasing their self-efficacy. This can improve positive outcomes for patients with chronic conditions and increase their ability to manage the challenges of such illnesses. Unfortunately, patients with chronic conditions often struggle to travel far from home to engage with patient education events, a common means of improving self-efficacy. The development of more accessible tools for improving patient self-efficacy is required to increase quality of life for patients with chronic conditions. To evaluate the feasibility of delivering symptom identification and management information to patients with advanced lung cancer using an online program. This article describes a pre-post test study to evaluate a Qstream online learning platform to improve patient self-efficacy for managing advanced lung cancer symptoms. Undertaking this program should increase participant knowledge about the side-effects they may experience as a result of their treatment and in turn increase help-seeking behavior and self-efficacy for the participant cohort. Quantitative data collected by the Qstream platform on the completion rates of participants will be used as a tool to evaluate the intervention. Additionally, validated scales will be used to collect data on patient self-efficacy. Qualitative data will also be collected via an exit survey and thematic content analysis of semi-structured interviews. The research is in the preliminary stages but thus far a protocol has been approved in support of the project. Additionally, advisory committee members have been identified and initial meetings have been undertaken. Development of new approaches for increasing patient understanding of their care is important to ensure high quality care continues to be delivered in the clinical setting.

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

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.

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

Patterns of Care for Elderly Patients With Locally Advanced Head and Neck Cancer.

PubMed

Juarez, Jesus E; Choi, Jehee; St John, Maie; Abemayor, Elliot; TenNapel, Mindi; Chen, Allen M

2017-07-15

To compare patterns of care for elderly patients aged ≥70 years with locally advanced head and neck cancer versus those of younger patients treated for the same disease. The medical records of 421 consecutive patients over the age of 50 years treated at a single institution between April 2011 and June 2016 for stage III/IV squamous cell carcinoma of the head and neck were reviewed. The primary treatment approach was compared using a t test statistic among 3 age cohorts: 50 to 59 years (118 patients); 60 to 69 years (152 patients); and 70 years and older (151 patients). Logistical regression was used to determine variables that influenced the likelihood of receiving surgery versus nonsurgical treatment, as well as radiation alone versus chemoradiation. There was no difference in sex, T stage, N stage, Karnofsky performance status, or the number of chronic comorbid conditions among the 3 age cohorts (P>.05 for all). A greater proportion of elderly patients aged ≥70 years were treated by radiation alone compared with those aged 50 to 59 and 60 to 69 years (44% vs 16% and 24%, P=.01). Increasing age was associated with a greater likelihood of receiving primary nonsurgical versus surgical treatment (odds ratio 1.023, 95% confidence interval 1.004-1.042) and radiation alone compared with chemoradiation (odds ratio 1.054; 95% confidence interval 1.034-1.075). Ten chemotherapy regimens were used concurrently with radiation for patients aged ≥70 years, including carboplatin/paclitaxel (19%), carboplatin/cetuximab (19%), cisplatin (17%), and cetuximab (17%). Despite similar performance status and comorbidity burden compared with their younger counterparts, patients aged ≥70 years were more commonly treated with less-aggressive strategies, including radiation alone. The variability of concurrent chemotherapy regimens used further suggests that the standard of care remains to be defined for this population. Copyright © 2017 Elsevier Inc. All rights reserved.

Consensus Statement on Advancing Research in Emergency Department Operations and Its Impact on Patient Care

PubMed Central

Ward, Michael J.; Chang, Anna Marie; Pines, Jesse M.; Jouriles, Nick; Yealy, Donald M.

2016-01-01

The Consensus Conference on “Advancing Research in Emergency Department (ED) Operations and Its Impact on Patient Care,” hosted by The ED Operations Study Group (EDOSG), convened to craft a framework for future investigations in this important but underserved area. The EDOSG is a research consortium dedicated to promoting evidence based clinical practice in Emergency Medicine. The consensus process format was a modified version of the NIH Model for Consensus Conference Development. Recommendations provide an action plan for how to improve ED operations study design, create a facilitating research environment, identify data measures of value for process and outcomes research, and disseminate new knowledge in this area. Specifically, we called for eight key initiatives: 1) the development of universal measures for ED patient care processes; 2) attention to patient outcomes, in addition to process efficiency and best practice compliance; 3) the promotion of multi-site clinical operations studies to create more generalizable knowledge; 4) encouraging the use of mixed methods to understand the social community and human behavior factors that influence ED operations; 5) the creation of robust ED operations research registries to drive stronger evidence based research, 6) prioritizing key clinical questions with the input of patients, clinicians, medical leadership, emergency medicine organizations, payers, and other government stakeholders; 7) more consistently defining the functional components of the ED care system including observation units, fast tracks, waiting rooms, laboratories and radiology sub-units; and 8) maximizing multidisciplinary knowledge dissemination via emergency medicine, public health, general medicine, operations research and nontraditional publications. PMID:26014365

Consensus statement on advancing research in emergency department operations and its impact on patient care.

PubMed

Yiadom, Maame Yaa A B; Ward, Michael J; Chang, Anna Marie; Pines, Jesse M; Jouriles, Nick; Yealy, Donald M

2015-06-01

The consensus conference on "Advancing Research in Emergency Department (ED) Operations and Its Impact on Patient Care," hosted by The ED Operations Study Group (EDOSG), convened to craft a framework for future investigations in this important but understudied area. The EDOSG is a research consortium dedicated to promoting evidence-based clinical practice in emergency medicine. The consensus process format was a modified version of the NIH Model for Consensus Conference Development. Recommendations provide an action plan for how to improve ED operations study design, create a facilitating research environment, identify data measures of value for process and outcomes research, and disseminate new knowledge in this area. Specifically, we call for eight key initiatives: 1) the development of universal measures for ED patient care processes; 2) attention to patient outcomes, in addition to process efficiency and best practice compliance; 3) the promotion of multisite clinical operations studies to create more generalizable knowledge; 4) encouraging the use of mixed methods to understand the social community and human behavior factors that influence ED operations; 5) the creation of robust ED operations research registries to drive stronger evidence-based research; 6) prioritizing key clinical questions with the input of patients, clinicians, medical leadership, emergency medicine organizations, payers, and other government stakeholders; 7) more consistently defining the functional components of the ED care system, including observation units, fast tracks, waiting rooms, laboratories, and radiology subunits; and 8) maximizing multidisciplinary knowledge dissemination via emergency medicine, public health, general medicine, operations research, and nontraditional publications. © 2015 by the Society for Academic Emergency Medicine.

Development and Validation of a Multidisciplinary Mobile Care System for Patients With Advanced Gastrointestinal Cancer: Interventional Observation Study.

PubMed

Soh, Ji Yeong; Cha, Won Chul; Chang, Dong Kyung; Hwang, Ji Hye; Kim, Kihyung; Rha, Miyong; Kwon, Hee

2018-05-07

Mobile health apps have emerged as supportive tools in the management of advanced cancers. However, only a few apps have self-monitoring features, and they are not standardized and validated. This study aimed to develop and validate a multidisciplinary mobile care system with self-monitoring features that can be useful for patients with advanced gastrointestinal cancer. The development of the multidisciplinary mobile health management system was divided into 3 steps. First, the service scope was set up, and the measurement tools were standardized. Second, the service flow of the mobile care system was organized. Third, the mobile app (Life Manager) was developed. The app was developed to achieve 3 major clinical goals: support for quality of life, nutrition, and rehabilitation. Three main functional themes were developed to achieve clinical goals: a to-do list, health education, and in-app chat. Thirteen clinically oriented measures were included: the modified Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events questionnaire, Scored Patient-Generated Subjective Global Assessment (PG-SGA), distress, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, International Physical Activity Questionnaire-Short Form, Low anterior resection syndrome score, satisfaction rate, etc. To validate the system, a prospective observational study was conducted. Patients with gastric cancer or colon cancer undergoing chemotherapy were recruited. We followed the subjects for 12 weeks, and selected clinical measures were taken online and offline. After the development process, a multidisciplinary app, the Life Manager, was launched. For evaluation, 203 patients were recruited for the study, of whom 101 (49.8%) had gastric cancer, and 102 (50.2%) were receiving palliative care. Most patients were in their fifties (35.5%), and 128 (63.1%) were male. Overall, 176 subjects (86.7%) completed the study. Among subjects who

Collaboration and entanglement: An actor-network theory analysis of team-based intraprofessional care for patients with advanced heart failure

PubMed Central

McDougall, A.; Goldszmidt, M.; Kinsella, E.A.; Smith, S.; Lingard, L.

2017-01-01

Despite calls for more interprofessional and intraprofessional team-based approaches in healthcare, we lack sufficient understanding of how this happens in the context of patient care teams. This multi-perspective, team-based interview study examined how medical teams negotiated collaborative tensions. From 2011 to 2013, 50 patients across five sites in three Canadian provinces were interviewed about their care experiences and were asked to identify members of their health care teams. Patient-identified team members were subsequently interviewed to form 50 “Team Sampling Units” (TSUs), consisting of 209 interviews with patients, caregivers and healthcare providers. Results are gathered from a focused analysis of 13 TSUs where intraprofessional collaborative tensions involved treating fluid overload, or edema, a common HF symptom. Drawing on actor-network theory (ANT), the analysis focused on intraprofessional collaboration between specialty care teams in cardiology and nephrology. The study found that despite a shared narrative of common purpose between cardiology teams and nephrology teams, fluid management tools and techniques formed sites of collaborative tension. In particular, care activities involved asynchronous clinical interpretations, geographically distributed specialist care, fragmented forms of communication, and uncertainty due to clinical complexity. Teams ‘disentangled’ fluid in order to focus on its physiological function and mobilisation. Teams also used distinct ‘framings’ of fluid management that created perceived collaborative tensions. This study advances collaborative entanglement as a conceptual framework for understanding, teaching, and potentially ameliorating some of the tensions that manifest during intraprofessional care for patients with complex, chronic disease. PMID:27490299

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.

A qualitative analysis of an advanced practice nurse-directed transitional care model intervention.

PubMed

Bradway, Christine; Trotta, Rebecca; Bixby, M Brian; McPartland, Ellen; Wollman, M Catherine; Kapustka, Heidi; McCauley, Kathleen; Naylor, Mary D

2012-06-01

The purpose of this study was to describe barriers and facilitators to implementing a transitional care intervention for cognitively impaired older adults and their caregivers lead by advanced practice nurses (APNs). APNs implemented an evidence-based protocol to optimize transitions from hospital to home. An exploratory, qualitative directed content analysis examined 15 narrative case summaries written by APNs and fieldnotes from biweekly case conferences. Three central themes emerged: patients and caregivers having the necessary information and knowledge, care coordination, and the caregiver experience. An additional category was also identified, APNs going above and beyond. APNs implemented individualized approaches and provided care that exceeds the type of care typically staffed and reimbursed in the American health care system by applying a Transitional Care Model, advanced clinical judgment, and doing whatever was necessary to prevent negative outcomes. Reimbursement reform as well as more formalized support systems and resources are necessary for APNs to consistently provide such care to patients and their caregivers during this vulnerable time of transition.

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.

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

Depression and end-of-life care for patients with cancer

PubMed Central

Rosenstein, Donald L.

2011-01-01

Patients with cancer and depression experience more physical symptoms, have poorer quality of life, and are more likely to have suicidal thoughts or a desire for hastened death than are cancer patients who are not depressed. Despite the ubiquity of depressive symptoms in cancer patients at the end of life, critical questions remain unanswered with respect to etiopathogenesis, diagnosis, and treatment of depression in these vulnerable patients. The pharmacotherapy of depression in patients with advanced cancer should be guided by a palliative care approach focused on symptom reduction, irrespective of whether the patient meets diagnostic criteria for major depression. Earlier and more intensive supportive care for patients with cancer reduces symptom burden and may prolong life for patients with advanced disease. Symptom-oriented clinical trials are needed to improve end-of-life cancer care. PMID:21485750

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

Health Care Resource Utilization for Outpatient Cardiovascular Disease and Diabetes Care Delivery Among Advanced Practice Providers and Physician Providers in Primary Care.

PubMed

Virani, Salim S; Akeroyd, Julia M; Ramsey, David J; Deswal, Anita; Nasir, Khurram; Rajan, Suja S; Ballantyne, Christie M; Petersen, Laura A

2018-06-01

Although effectiveness of diabetes or cardiovascular disease (CVD) care delivery between physicians and advanced practice providers (APPs) has been shown to be comparable, health care resource utilization between these 2 provider types in primary care is unknown. This study compared health care resource utilization between patients with diabetes or CVD receiving care from APPs or physicians. Diabetes (n = 1,022,588) or CVD (n = 1,187,035) patients with a primary care visit between October 2013 and September 2014 in 130 Veterans Affairs facilities were identified. Using hierarchical regression adjusting for covariates including patient illness burden, the authors compared number of primary or specialty care visits and number of lipid panels and hemoglobinA1c (HbA1c) tests among diabetes patients, and number of primary or specialty care visits and number of lipid panels and cardiac stress tests among CVD patients receiving care from physicians and APPs. Physicians had significantly larger patient panels compared with APPs. In adjusted analyses, diabetes patients receiving care from APPs received fewer primary and specialty care visits and a greater number of lipid panels and HbA1c tests compared with patients receiving care from physicians. CVD patients receiving care from APPs received more frequent lipid testing and fewer primary and specialty care visits compared with those receiving care from physicians, with no differences in the number of stress tests. Most of these differences, although statistically significant, were numerically small. Health care resource utilization among diabetes or CVD patients receiving care from APPs or physicians appears comparable, although physicians work with larger patient panels.

Quality of life assessment in advanced cancer patients treated at home, an inpatient unit, and a day care center

PubMed Central

Leppert, Wojciech; Majkowicz, Mikolaj; Forycka, Maria; Mess, Eleonora; Zdun-Ryzewska, Agata

2014-01-01

Aim of the study To assess quality of life (QoL) in cancer patients treated at home, at an in-patient palliative care unit (PCU), and at a day care center (DCC). Patients and methods QoL was assessed in advanced cancer patients at baseline and after 7 days of symptomatic treatment using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care (EORTC QLQ-C15-PAL), the Edmonton Symptom Assessment System (ESAS), and the Karnofsky Performance Status (KPS) scale. Results A total of 129 patients completed the study, with 51 patients treated at home, 51 patients treated at the PCU, and 27 patients at DCC. In the EORTC QLQ-C15-PAL, improvement in functional and symptom scales was observed except in physical functioning and fatigue levels; patients at DCC had a better physical functioning, global QoL, appetite, and fatigue levels. In the ESAS, improvement in all items was found except for drowsiness levels, which was stable in patients treated at DCC and deteriorated in home and PCU patients. Higher activity, better appetite and well-being, and less drowsiness were observed in patients treated at DCC. KPS was better in DCC patients compared to those treated at home and at the PCU; the latter group deteriorated. Conclusions QoL improved in all patient groups, with better results in DCC patients and similar scores in those staying at home and at the PCU. Along with clinical assessment, baseline age, KPS, physical and emotional functioning may be considered when assigning patients to care at a DCC, PCU, or at home. PMID:24855379

[Qualitative research of self-management behavior in patients with advanced schistosomiasis].

PubMed

Wang, Jian-ping; Wang, Xing-ju; Bao, Hui-hong; Zhang, Hong; Xu, Zheng-rong

2013-10-01

To explore the self-management behavior of patients with advanced schistosomiasis, so as to provide the evidence for improving clinical nursing. A total of 18 patients with advanced schistosomiasis were interviewed in depth by using a semi structured interview method. The results were analyzed with Miles and Huberman content analysis method. Most of the patients with advanced schistosomiasis had self-management control behavior and were cooperated with medical assistance because of their seriously illness. Based on data analysis, the symptom management, follow-up management, a healthy lifestyle, medication awareness, and emotional management were obtained. The patients with advanced schistosomiasis have self management control behavior. Health care workers should promote the patients, their families and social people to participate in the self-management behavior of advanced schistosomiasis patients.

Battlefield anesthesia: advances in patient care and pain management.

PubMed

Baker, Bruce C; Buckenmaier, Chester; Narine, Nalan; Compeggie, Michael E; Brand, George J; Mongan, Paul D

2007-03-01

Expeditionary maneuver warfare and the asymmetric battlefield have forced changes in the traditional methods with which we deliver anesthesia and surgery to the wounded. Although in many ways similar to how we have operated on the wounded for the past half century, new advances in diagnostic and therapeutic modalities and doctrinal shifts have changed the face of the battlefield hospital. In this article, the authors discuss these changes in regard to anesthetic care for surgical and pain management for wounded airmen, sailors, soldiers, and marines.

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions.

PubMed

Verreault, René; Arcand, Marcel; Misson, Lucie; Durand, Pierre J; Kroger, Edeltraut; Aubin, Michèle; Savoie, Maryse; Hadjistavropoulos, Thomas; Kaasalainen, Sharon; Bédard, Annick; Grégoire, Annie; Carmichael, Pierre-Hughes

2018-03-01

Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Physician Reimbursement for Critical Care Services Integrating Palliative Care for Patients Who Are Critically Ill

PubMed Central

Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall

2012-01-01

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564

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

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

Providing Palliative Care to LGBTQ Patients.

PubMed

Barrett, Nina; Wholihan, Dorothy

2016-09-01

Nurses should be familiar with and equipped to address the challenges that arise when caring for lesbian, gay, bisexual, transgender, or queer-identified (LGBTQ) patients. LGBTQ individuals have increased rates of certain physical diseases and are at greater risk of suffering from stress-sensitive mental health issues. Negative social attitudes, widespread discrimination and stigma, physical and psychological victimization, and less social support with aging contribute to the complexity of care for these individuals. Open communication, welcoming and accepting attitudes and environments, and sensitivity to unique multidimensional issues improve care to LGBTQ patients with serious advanced illness. Nursing can reach this vulnerable minority and positively impact the quality of care. Copyright © 2016 Elsevier Inc. All rights reserved.

Law on advance health care directives: a medical perspective.

PubMed

Di Luca, A; Del Rio, A; Bosco, M; Di Luca, N M

2018-01-01

The paper's authors aim to elaborate on law 22 dicembre 2017, n. 219 , designed to regulate informed consent practices and advance health care directives", which has sparked a passionate debate centered on the substantial innovation achieved over the past decades in bio-medical science and at the same time, the noteworthy accomplishments made in enforcing human and personal rights. Within the paper, article three is delved into, which covers the creation of the so-called DAT ("Disposizioni anticipate di trattamento", advance health care directives), by which patients, in light of possible future incapacity to choose, can express their convictions and decisions on how to be treated and their consent or dissent to undergo treatments and procedures, including artificial nutrition and hydration. The authors peruse the new law's provisions through a medical perspective, and observe how they are heavily tilted towards patient choice, thus making doctors little more than mere tools of such decisions.

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.

Palliative wound care management strategies for palliative patients and their circles of care.

PubMed

Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia

2015-03-01

To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.

Are severely injured trauma victims in Norway offered advanced pre-hospital care? National, retrospective, observational cohort.

PubMed

Wisborg, T; Ellensen, E N; Svege, I; Dehli, T

2017-08-01

Studies of severely injured patients suggest that advanced pre-hospital care and/or rapid transportation provides a survival benefit. This benefit depends on the disposition of resources to patients with the greatest need. Norway has 19 Emergency Helicopters (HEMS) staffed by anaesthesiologists on duty 24/7/365. National regulations describe indications for their use, and the use of the national emergency medical dispatch guideline is recommended. We assessed whether severely injured patients had been treated or transported by advanced resources on a national scale. A national survey was conducted collecting data for 2013 from local trauma registries at all hospitals caring for severely injured patients. Patients were analysed according to hospital level; trauma centres or acute care hospitals with trauma functions. Patients with an Injury Severity Score (ISS) > 15 were considered severely injured. Three trauma centres (75%) and 17 acute care hospitals (53%) had data for trauma patients from 2013, a total of 3535 trauma registry entries (primary admissions only), including 604 victims with an ISS > 15. Of these 604 victims, advanced resources were treating and/or transporting 51%. Sixty percent of the severely injured admitted directly to trauma centres received advanced services, while only 37% of the severely injured admitted primarily to acute care hospitals received these services. A highly developed and widely distributed HEMS system reached only half of severely injured trauma victims in Norway in 2013. © 2017 The Authors. Acta Anaesthesiologica Scandinavica published by John Wiley & Sons Ltd on behalf of Acta Anaesthesiologica Scandinavica Foundation.

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

Goals of patient care system change with video-based education increases rates of advance cardiopulmonary resuscitation decision-making and discussions in hospitalised rehabilitation patients.

PubMed

Johnson, Claire E; Chong, Jeffrey C; Wilkinson, Anne; Hayes, Barbara; Tait, Sonia; Waldron, Nicholas

2017-07-01

Advance cardiopulmonary resuscitation (CPR) discussions and decision-making are not routine clinical practice in the hospital setting. Frail older patients may be at risk of non-beneficial CPR. To assess the utility and safety of two interventions to increase CPR decision-making, documentation and communication for hospitalised older patients. A pre-post study tested two interventions: (i) standard ward-based education forums with CPR content; and (ii) a combined, two-pronged strategy with 'Goals of Patient Care' (GoPC) system change and a structured video-based workshop; against usual practice (i.e. no formal training). Participants were a random sample of patients in a hospital rehabilitation unit. The outcomes were the proportion of patients documented as: (i) not for resuscitation (NFR); and (ii) eligible for rapid response team (RRT) calls, and rates of documented discussions with the patient, family and carer. When compared with usual practice, patients were more likely to be documented as NFR following the two-pronged intervention (adjusted odds ratio (aOR): 6.4, 95% confidence interval (CI): 3.0; 13.6). Documentation of discussions with patients was also more likely (aOR: 3.3, 95% CI:1.8; 6.2). Characteristics of patients documented NFR were similar between the phases, but were more likely for RRT calls following Phase 3 (P 0.03). An increase in advance CPR decisions occurred following GoPC system change with education. This appears safe as NFR patients had the same level of frailty between phases but were more likely to be eligible for RRT review. Increased documentation of discussions suggests routine use of the GoPC form may improve communication with patients about their care. © 2017 Royal Australasian College of Physicians.

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.

[Ethical issues in the practice of advance directives, living wills, and self-determination in end of life care].

PubMed

Fang, Hui-Feng; Jhing, Huei-Yu; Lin, Chia-Chin

2009-02-01

The Hospice-Palliative Care Act, enacted in Taiwan in 2000, was designed to respect the end of life medical wishes of patients with incurable illnesses, safeguard the rights of these patients, and provide clinical guidelines for healthcare workers responsible to provide end of life care. Self-determination is a core element of human dignity. Advance directive documents include a living will, and durable power of attorney for healthcare. This article reviews current issues and ethical dilemmas with regard to advance directives. Patients, family members, and clinicians may require better education on the Hospice-Palliative Care Act in order to respect more appropriately patient end of life medical care wishes.

Evaluation of nutritional status and dietary intake in patients with advanced cancer on palliative care.

PubMed

Bovio, G; Bettaglio, R; Bonetti, G; Miotti, D; Verni, P

2008-09-01

Cancer cachexia and malnutrition are very common in patients receiving palliative care. They cause a deterioration in the quality of life. We studied 144 patients (52 females, 92 males) admitted to our Palliative Care Unit. Anthropometric measurements, food and nutritional intake, and plasma levels of few serum proteins were determined. Basal metabolic rate (BMR) was calculated. A body mass index (BMI) below 18.5 kg/m2 was observed in 23% of females and in 13% of males (P = NS). Twenty females (44%) and 52 males (63%) showed a weight loss of more than 10% over the 6-month period (P = 0.073). Ten females (19%) and 58 males (63%) had an arm muscle area (AMA) below the 5th percentile (P < 0.001), while 20 females (38%) and 21 males (23%) had an arm fat area (AFA) below the 5th percentile (P = 0.071). The daily calorie intake was below the BMR in 22 females (42%) and in 53 males (58%) (P = NS). Plasma levels of prealbumin, transferrin, and albumin were found below the normal range in more than 70% in both sexes. Protein energy malnutrition can be easily detected by anthropometric and laboratory indexes. The larger percentage of males with a reduction in lean body mass compared to females could signify an advantage for females since lean body mass is preserved for longer in them. Patients with advanced cancer receiving palliative care should thus be evaluated routinely to assess their nutritional status in order to plan an adequate nutritional program when appropriate.

Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care.

PubMed

Umezawa, Shino; Fujimori, Maiko; Matsushima, Eisuke; Kinoshita, Hiroya; Uchitomi, Yosuke

2015-12-01

The objective of this study was to clarify the communication preferences of patients with advanced cancer regarding discussions about ending anticancer treatment and transitioning to palliative care and to explore the variables associated with those preferences. Participants were 106 Japanese patients with cancer who had been informed at least 1 week earlier about the cessation of their anticancer treatment. They completed a survey measuring their preferences for communication about ending anticancer treatment and transitioning to palliative care as well as their demographic characteristics. Medical records were also examined to investigate medical characteristics. Results of the descriptive analysis indicated that patients strongly preferred their physicians to listen to their distress and concerns (96%), to assure them that their painful symptoms would be controlled (97.1%), and to explain the status of their illness and the physical symptoms that would likely occur in the future (95.1%). Multiple regression analyses identified the factors associated with these preferences: telling patients to prepare mentally and informing them of their expected life expectancy were associated with cancer site; sustaining hope was associated with cancer site and children; and empathic paternalism was associated with duration since cancer diagnosis. The majority of patients preferred their physicians to be realistic about their likely future and wanted to be reassured that their painful symptoms would be controlled. For patients with cancer at certain sites, those with children, and those more recently diagnosed, physicians should communicate carefully and actively by providing information on life expectancy and mental preparation, sustaining hope, and behaving with empathic paternalism. © 2015 American Cancer Society.

Use of a Shared Mental Model by a Team Composed of Oncology, Palliative Care, and Supportive Care Clinicians to Facilitate Shared Decision Making in a Patient With Advanced Cancer.

PubMed

D'Ambruoso, Sarah F; Coscarelli, Anne; Hurvitz, Sara; Wenger, Neil; Coniglio, David; Donaldson, Dusty; Pietras, Christopher; Walling, Anne M

2016-11-01

Our case describes the efforts of team members drawn from oncology, palliative care, supportive care, and primary care to assist a woman with advanced cancer in accepting care for her psychosocial distress, integrating prognostic information so that she could share in decisions about treatment planning, involving family in her care, and ultimately transitioning to hospice. Team members in our setting included a medical oncologist, oncology nurse practitioner, palliative care nurse practitioner, oncology social worker, and primary care physician. The core members were the patient and her sister. Our team grew organically as a result of patient need and, in doing so, operationalized an explicitly shared understanding of care priorities. We refer to this shared understanding as a shared mental model for care delivery, which enabled our team to jointly set priorities for care through a series of warm handoffs enabled by the team's close proximity within the same clinic. When care providers outside our integrated team became involved in the case, significant communication gaps exposed the difficulty in extending our shared mental model outside the integrated team framework, leading to inefficiencies in care. Integration of this shared understanding for care and close proximity of team members proved to be key components in facilitating treatment of our patient's burdensome cancer-related distress so that she could more effectively participate in treatment decision making that reflected her goals of care.

Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients.

PubMed

Costantini, Massimo; Rabitti, Elisa; Beccaro, Monica; Fusco, Flavio; Peruselli, Carlo; La Ciura, Pietro; Valle, Alessandro; Suriani, Cinzia; Berardi, Maria Alejandra; Valenti, Danila; Mosso, Felicita; Morino, Piero; Zaninetta, Giovanni; Tubere, Giorgio; Piazza, Massimo; Sofia, Michele; Di Leo, Silvia; Higginson, Irene J

2016-02-26

There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care. Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24-48 h after T1 to assess its reliability (test re-test analysis). Phase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5-0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16-0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time. Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected

A pilot study on understanding the journey of advanced prostate cancer patients.

PubMed

Wagholikar, Amol; Fung, Maggie; Nelson, Colleen

2011-01-01

To understand the journey of advanced prostate cancer patients for supporting development of an innovative patient journey browser. Prostate cancer is one of the common cancers in Australia. Due to the chronic nature of the disease, it is important to have effective disease management strategy and care model. Multi-disciplinary care is a well-proven approach for chronic disease management. The Multi-disciplinary team (MDT) can function more effectively if all the required information is available for the clinical decision support. The development of innovative technology relies on an accurate understanding of the advanced prostate cancer patient's journey over a prolonged period. This need arises from the fact that advanced prostate cancer patients may follow various treatment paths and change their care providers. As a result of this, it is difficult to understand the actual sources of patient's clinical records and their treatment patterns. The aim of the research is to understand variable sources of clinical records, treatment patterns, alternative therapies, over the counter (OTC) medications of advanced prostate cancer patients. This study provides better and holistic understanding of advanced prostate cancer journey. The study was conducted through an on-line survey developed to seek and analyse the responses from the participants. The on-line questionnaire was carefully developed through consultations with the clinical researchers at the Australian Prostate Cancer Research Centre-Queensland, prostate cancer support group representatives and health informaticians at the Australian E-Health Research Centre. The non-identifying questionnaire was distributed to the patients through prostate cancer support groups in Queensland, Australia. The pilot study was carried out between August 2010 and December 2010. The research made important observations about the advanced prostate cancer journey. It showed that General Practitioner (GP) was the common source of

Predictive model of complexity in early palliative care: a cohort of advanced cancer patients (PALCOM study).

PubMed

Tuca, Albert; Gómez-Martínez, Mónica; Prat, Aleix

2018-01-01

Model of early palliative care (PC) integrated in oncology is based on shared care from the diagnosis to the end of life and is mainly focused on patients with greater complexity. However, there is no definition or tools to evaluate PC complexity. The objectives of the study were to identify the factors influencing level determination of complexity, propose predictive models, and build a complexity scale of PC. We performed a prospective, observational, multicenter study in a cohort of advanced cancer patients with an estimated prognosis ≤ 6 months. An ad hoc structured evaluation including socio-demographic and clinical data, symptom burden, functional and cognitive status, psychosocial problems, and existential-ethic dilemmas was recorded systematically. According to this multidimensional evaluation, investigator classified patients as high, medium, or low palliative complexity, associated to need of basic or specialized PC. Logistic regression was used to identify the variables influencing determination of level of PC complexity and explore predictive models. We included 324 patients; 41% were classified as having high PC complexity and 42.9% as medium, both levels being associated with specialized PC. Variables influencing determination of PC complexity were as follows: high symptom burden (OR 3.19 95%CI: 1.72-6.17), difficult pain (OR 2.81 95%CI:1.64-4.9), functional status (OR 0.99 95%CI:0.98-0.9), and social-ethical existential risk factors (OR 3.11 95%CI:1.73-5.77). Logistic analysis of variables allowed construct a complexity model and structured scales (PALCOM 1 and 2) with high predictive value (AUC ROC 76%). This study provides a new model and tools to assess complexity in palliative care, which may be very useful to manage referral to specialized PC services, and agree intensity of their intervention in a model of early-shared care integrated in oncology.

[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.

"Better pathways of care": suggested improvements to the emergency department management of people with advanced cancer.

PubMed

Jelinek, George A; Boughey, Mark; Marck, Claudia H; Phillip, Jennifer; Weil, Jennifer; Lane, Heather; Weiland, Tracey J

2014-01-01

It is difficult to provide optimal care to people with advanced cancer presenting to emergency departments (EDs). Recent data suggest that the ED environment, the skills and priorities of treating staff, and the lack of clear communication related to goals of care contribute to the difficulty. By exploring the views of emergency, palliative care (PC), and oncology clinicians on the care of these patients, this study aimed to describe potential solutions. This qualitative study involved focus groups with clinicians at two major hospitals and two community PC services in Melbourne, Australia, and semistructured telephone interviews with emergency clinicians from all other Australian states and territories. Discussions were recorded and transcribed verbatim. Thematic analysis identified ways to improve or enhance care. Throughout discussions with 94 clinicians, a number of possible improvements to care were raised; these were broadly grouped into service areas: clinical care, pathways, information access, and education. The provision of care to patients with advanced cancer in the ED occurs across sites, across disciplines, and across teams. To make improvements to care, we must address these complexities. The improvements suggested in this study place the patient (and the patient's family) at the centre of care.

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.

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.

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

Effect of physician perspective on allocation of Medicare resources for patients with advanced cancer.

PubMed

Rocke, Daniel J; Beumer, Halton W; Thomas, Steven; Lee, Walter T

2014-05-01

To assess how physician perspective (perspective of patient vs perspective of physician) affects Medicare resource allocation for patients with advanced cancer and compare physician allocations with actual cancer patient and caregiver allocations. Cross-sectional assessment. National assessment. Otolaryngologists. Physicians used a validated tool to create a Medicare plan for patients with advanced cancer. Participants took the perspective of an advanced cancer patient and made resource allocations between 15 benefit categories (assessment 2, November/December 2012). Results were compared with data from a prior assessment made from a physician's perspective (assessment 1, February/March 2012) and with data from a separate study with patients with cancer and caregivers. In total, 767 physicians completed assessment 1 and 237 completed assessment 2. Results were compared with 146 cancer patient and 114 caregiver assessments. Assessment 1 physician responses differed significantly from patients/caregivers in 14 categories (P < .05), while assessment 2 differed in 11. When comparing physician data, assessment 2 allocations differed significantly from assessment 1 in 7 categories. When these 7 categories were compared with patient/caregiver data, assessment 2 allocations in emotional care, drug coverage, and nursing facility categories were not significantly different. Assessment 1 allocations in cosmetic care, dental, home care, and primary care categories were more similar to patient/caregiver preferences, although all but home care were still significantly different. Otolaryngology-head and neck surgery physician perspectives on end-of-life care differ significantly from cancer patient/caregiver perspectives, even when physicians take a patient's perspective when allocating resources. This demonstrates the challenges inherent in end-of-life discussions.

Reconciling employment with caring for a husband with an advanced illness.

PubMed

Gysels, Marjolein; Higginson, Irene J

2009-11-25

Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles. A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data. Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy. A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.

Characteristics and outcomes of patients with advanced cancer evaluated by a palliative care team at an emergency center. A retrospective study.

PubMed

Delgado-Guay, Marvin Omar; Rodriguez-Nunez, Alfredo; Shin, Seong Hoon; Chisholm, Gary; Williams, Janet; Frisbee-Hume, Susan; Bruera, Eduardo

2016-05-01

Patients with advanced cancer may be referred for a palliative care consultation (PC) from a hospital emergency center (EC) or as inpatients. However, research about symptoms and outcomes in patients with advanced cancer who receive PC at the EC is limited. We reviewed demographic variables, frequency and intensity of symptoms (using the Edmonton Symptom Assessment Scale (ESAS)), PC interventions, time from admission to PC consultation, hospitalization duration, and discharge destination of 200 advanced cancer patients referred to PC services from the EC ("EC patients") and 200 matched advanced cancer inpatients referred to PC services ("inpatients") from January 1, 2010, through December 31, 2011. The median age for all patients was 56 years (range, 48-64 years); 222 (56 %) patients were female, and 243 (61 %) were white. There were no significant demographic differences between the EC patients and inpatients. The median time from admission to PC was 12 h (range, 7-23 h) for the EC patients and 24 h (24-96 h) for the inpatients (p < 0.0001). For EC patients and inpatients, symptoms at presentation for PC consultation included uncontrolled pain (83 and 45 %, respectively; p < 0.0001), nausea/vomiting/constipation (41 and 19 %, respectively; p < 0.0001), and dyspnea (29 and 19 %, respectively; p = 0.02). The medians and interquartile ranges of baseline symptom intensities for EC patients and inpatients, respectively, were as follows: pain, 7 (5-9) and 5 (2-8) (p < 0.0001); fatigue, 7 (4-8) and 6 (4-8) (p = 0.0517); and sleep, 6 (0-8) and 4 (1-7) (p = 0.1064). At follow-up, improvement was observed in pain (125/238 [53 %]), sleep (59/131 [45 %]), well-being (32/82 [39 %]), fatigue (53/139 [38 %]), anxiety (51/132 [39 %]), appetite (46/132 [35 %]), dyspnea (49/160 [31 %]), nausea (52/170 [31 %]), depression (36/123 [29 %]), and drowsiness (37/126 [29 %]). After PC consultations, discharge/admission destinations for EC patients were as follows: home, 65 (33 %); home

Pressure ulcer prevention in patients with advanced illness.

PubMed

White-Chu, E Foy; Reddy, Madhuri

2013-03-01

Pressure ulcers can be challenging to prevent, particularly in patients with advanced illnesses. This review summarizes the relevant literature since 2011. Through a MEDLINE and CINAHL database search from January 1, 2011 to June 1, 2012, a total of 14 abstracts were found addressing the prevention of pressure ulcers in persons with advanced illness. Search terms included pressure ulcer, prevention, and control. Advanced illness was defined as patients transitioning from curative to supportive and palliative care. Ten original studies and four review articles specifically addressed pressure ulcer prevention. There were four articles that specifically addressed patients with advanced illness. The studies varied in quality. One systematic review, one randomized controlled trial, three prospective trials, two retrospective trials, one cost-effectiveness analysis, one quality improvement project, one comparative descriptive design, and four review articles were found. The interventions for pressure ulcer prevention were risk assessment, repositioning, surface selection, nutritional support and maintenance of skin integrity with or without incontinence. The quality of pressure ulcer prevention studies in persons with advanced illness is poor. Increased number and higher quality studies are needed to further investigate this important topic for these fragile patients.

Intensive Care Management of Patients with Cirrhosis.

PubMed

Olson, Jody C

2018-06-01

Cirrhosis is a major worldwide health problem which results in a high level of morbidity and mortality. Patients with cirrhosis who require intensive care support have high mortality rates of near 50%. The goal of this review is to address the management of common complications of cirrhosis in the ICU. Recent epidemiological studies have shown an increase in hospitalizations due to advanced liver disease with an associated increase in intensive care utilization. Given an increasing burden on the healthcare system, it is imperative that we strive to improve our management cirrhotic patients in the intensive care unit. Large studies evaluating the management of patients in the intensive care setting are lacking. To date, most recommendations are based on extrapolation of data from studies in cirrhosis outside of the ICU or by applying general critical care principles which may or may not be appropriate for the critically ill cirrhotic patient. Future research is required to answer important management questions.

Patient versus health care provider perspectives on spirituality and spiritual care: the potential to miss the moment.

PubMed

Selby, Debbie; Seccaraccia, Dori; Huth, Jim; Kurppa, Kristin; Fitch, Margaret

2017-04-01

Spirituality and spiritual care are well recognized as important facets of patient care, particularly in the palliative care population. Challenges remain, however, in the provision of such care. This study sought to compare patient and health care professional (HCP) views on spirituality/spiritual care, originally with a view to exploring a simple question(s) HCP's could use to identify spiritual distress, but evolved further to a comparison of how patients and HCPs were both concordant and discordant in their thoughts, and how this could lead to HCP's 'missing' opportunities to both identify spirituality/spiritual distress and to providing meaningful spiritual care. Patients (n=16) with advanced illnesses and HCP's (n=21) with experience providing care to those with advanced disease were interviewed using a semi-structured interview guide. Qualitative analysis distress and spiritual care, and screening for spiritual distress). Within each category there were areas of both concordance and discordance. Most notably, HCP's struggled to articulate definitions of spirituality whereas patients generally spoke with much more ease, giving rich examples. Equally, HCP's had difficulty relating stories of patients who had experienced spiritual distress while patients gave ready responses. Key areas where HCP's and patients differed were identified and set up the strong possibility for an HCP to 'miss the moment' in providing spiritual care. These key misses include the perception that spiritual care is simply not something they can provide, the challenge in defining/ recognizing spirituality (as HCP and patient definitions were often very different), and the focus on spiritual care, even for those interested in providing, as 'task oriented' often with emphasis on meaning making or finding purpose, whereas patients much more commonly described spiritual care as listening deeply, being present and helping them live in the moment. Several discrepancies in perception of

Variables Affecting Pharmacy Students’ Patient Care Interventions during Advanced Pharmacy Practice Experiences

PubMed Central

Patterson, Brandon J.; Sen, Sanchita; Bingham, Angela L.; Bowen, Jane F.; Ereshefsky, Benjamin; Siemianowski, Laura A.

2016-01-01

Objective. To identify the temporal effect and factors associated with student pharmacist self-initiation of interventions during acute patient care advanced pharmacy practice experiences (APPE). Methods. During the APPE, student pharmacists at an academic medical center recorded their therapeutic interventions and who initiated the intervention throughout clinical rotations. At the end of the APPE student pharmacists completed a demographic survey. Results. Sixty-two student pharmacists were included. Factors associated with lower rates of self-initiated interventions were infectious diseases and pediatrics APPEs and an intention to pursue a postgraduate residency. Timing of the APPE, previous specialty elective course completion, and previous hospital experience did not result in any significant difference in self-initiated recommendations. Conclusion. Preceptors should not base practice experience expectations for self-initiated interventions on previous student experience or future intentions. Additionally, factors leading to lower rates of self-initiated interventions on infectious diseases or pediatrics APPEs should be explored. PMID:27756924

Effects of rehabilitation among patients with advances cancer: a systematic review.

PubMed

Salakari, Minna R J; Surakka, Tiina; Nurminen, Raija; Pylkkänen, Liisa

2015-05-01

In parallel with the rising incidence of cancer and improved treatment, there is a continuous increase in the number of patients living with cancer as a chronic condition. Many cancer patients experience long-term disability and require continuous oncological treatment, care and support. The aim of this review is to evaluate the most recent data on the effects of rehabilitation among patients with advanced cancer. A systematic review was conducted according to Fink's model. Only randomized controlled trials (RCTs) published in 2009-2014 were included. Medline/PubMed and Cochrane databases were searched; five groups of keywords were used. The articles were evaluated for outcome and methodological quality. Thirteen RCTs (1169 participants) were evaluated. Most studies were on the effects of physical exercise in patients with advanced cancer (N = 7). Physical exercise was associated with a significant improvement in general wellbeing and quality of life. Rehabilitation had positive effects on fatigue, general condition, mood, and coping with cancer. Rehabilitation is needed also among patients with advanced disease and in palliative care. Exercise improves physical performance and has positive effects on several other quality of life domains. More data and RCTs are needed, but current evidence gives an indication that rehabilitation is suitable and can be recommended for patients living with advanced cancer.

Pharmacist Advancement of Transitions of Care to Home (PATCH) Service.

PubMed

Trang, Joseph; Martinez, Amanda; Aslam, Sadaf; Duong, Minh-Tri

2015-11-01

There is a paucity of literature on a well-defined role of a pharmacist in different aspects of transition of care service (TCS). Although health care institutions have specific details on the discharge process, there is a need for a sustainable TCS with a well-defined role of pharmacists. To describe the impact of a pharmacist-led TCS on acute health care utilization, clinic quality indicators, and identification and resolution of medication-related problems (MRPs). A pharmacist-managed TCS service, referred to as the Pharmacist Advancement of Transitions of Care to Home (PATCH) service, was established at an academic medical center, where high-risk patients received a postdischarge phone call from a pharmacist followed by a face-to-face meeting with the pharmacist and the patient's primary care provider (PCP). In a prospective transitions of care group (n = 74), outcomes of patients such as acute health care utilization (an emergency department visit or an inpatient readmission, within 30 days post discharge), clinic quality indicators, and identification and resolution of MRPs were compared to a retrospective control group (n = 87) who received the standard of care. Utilization of acute health care services was significantly lower in the prospective group compared to the retrospective control group (23% vs 41.4%; P = .013). A total of 49 MRPs were discovered in patients who received the TCS. Pharmacists play an integral role in improving the transitions of care to reduce acute health care utilization. In addition, they may improve care transitions by optimizing clinic quality indicators and by identifying and resolving MRPs.

A review of patients with advanced cervical cancer presenting to palliative care services at Queen Elizabeth Central Hospital in Blantyre, Malawi.

PubMed

Bates, M J; Mijoya, A

2015-09-01

Cervical cancer is the commonest cancer affecting women in Malawi, which has the highest rate of this disease in the world. Most cases are diagnosed at an advanced stage. To describe the symptom burden, palliative care interventions, and outcomes of cervical cancer patients who entered care at Tiyanjane Clinic in Blantyre, Malawi, between January and December 2012. We reviewed the case files of 72 patients presenting to our hospital-based palliative care service over one year. The mean age was 49.5 years. Twenty-six patients (36%) were HIV-positive and the majority of these (n = 22; 85%) were on antiretroviral medication at presentation to palliative care. Pain (n = 66; 92%), vaginal discharge (n = 44; 61%), and unpleasant odour (n = 37; 51%) were commonly reported. Over a third of patients (n = 26; 36%) reported pain in two or more sites. Fourteen patients (19%) reported vaginal bleeding. Spousal breakdown (through widowhood or divorce) was noted in over half (n = 41; 57%) of all cases. Pain relief was provided to 69 (96%) of the patients (morphine to 40 patients; 56%). Common interventions provided included metronidazole tablets (used vaginally), sanitary items, and counselling. At the end of the study period, 18 patients (25%) were still under the care of palliative services. Access to medications such as morphine, metronidazole and tranexamic acid can improve quality of life, even when radiotherapy is limited. Health care teams require necessary skills and training, including how to perform a comprehensive assessment, with an emphasis on the provision of psychosexual counselling, to assist with the complexity of symptoms occurring in this vulnerable group.

Improving chemotherapy for patients with advanced non-small cell lung cancer.

PubMed

von Plessen, Christian

2011-01-01

Lung cancer is the third most common mortal disease in industrialised countries and the prognosis has been slow to improve. The largest subgroup has locally advanced or metastatic non-small cell lung cancer (NSCLC). Unfortunately, these patients can usually not be cured and the main treatment option is palliative chemotherapy. Given the palliative intention of the chemotherapy, it is clinically highly relevant to establish the optimal treatment duration. While chemotherapy prolongs survival and improves quality of life (QoL), it also has side effects and only a minority of patients achieve an objective treatment response. Clinicians need guidance on treatment duration from controlled trials to balance these aspects. Improvements of the conditions under which chemotherapy is given can increase patient and staff satisfaction and increase system performance. This is especially relevant to incurable patients who spend a lot of their limited time at oncology outpatient clinics. Staffing, infrastructure and organisation of these units are often suboptimal to serve patients with palliative needs and reports of improvement projects can inspire and guide clinicians in improving their microsystems of care. Clinicians, health care administrators and the public need knowledge about the outcomes of palliative chemotherapy in unselected patient populations. The efficacy of palliative chemotherapy for advanced NSCLC has been amply documented in controlled clinical trials. Meanwhile, the elderly and patients with higher performance status have usually been under-represented in these trials and population studies of the effectiveness of chemotherapy are needed. (i) To establish the optimal duration of platinum-based first line chemotherapy for advanced NSCLC; (ii) To improve the care processes at an oncology outpatient clinical microsystem; (iii) To describe the use of chemotherapy in a national population and investigate associations between chemotherapy use and survival; and (iv

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.