End-of-Life Care in the Intensive Care Unit

PubMed Central

Engelberg, Ruth A.; Bensink, Mark E.; Ramsey, Scott D.

2012-01-01

The incidence and costs of critical illness are increasing in the United States at a time when there is a focus both on limiting the rising costs of healthcare and improving the quality of end-of-life care. More than 25% of healthcare costs are spent in the last year of life, and approximately 20% of deaths occur in the intensive care unit (ICU). Consequently, there has been speculation that end-of-life care in the ICU represents an important target for cost savings. It is unclear whether efforts to improve end-of-life care in the ICU could significantly reduce healthcare costs. Here, we summarize recent studies suggesting that important opportunities may exist to improve quality and reduce costs through two mechanisms: advance care planning for patients with life-limiting illness and use of time-limited trials of ICU care for critically ill patients. The goal of these approaches is to ensure patients receive the intensity of care that they would choose at the end of life, given the opportunity to make an informed decision. Although these mechanisms hold promise for increasing quality and reducing costs, there are few clearly described, effective methods to implement these mechanisms in routine clinical practice. We believe basic science in communication and decision making, implementation research, and demonstration projects are critically important if we are to translate these approaches into practice and, in so doing, provide high-quality and patient-centered care while limiting rising healthcare costs. PMID:22859524

Care management role in end-of-life discussions.

PubMed

Meyer, Star

2012-01-01

How do we prepare our patients for decisions that will need to be made for end-of-life care? End-of-life care discussions should occur early on in the patient's disease process and often requires a great deal of coordination between multiple caregivers. There are also ethical, cultural social and spiritual considerations during this very important time in the disease process. Research suggests that we are not doing an adequate job of addressing end-of-life care with our patients and that a great deal of money and resources are being spent in the last days of life when there may be no clinical indication to do so. Registered nurse case managers have a unique knowledge base to serve in the role of coordinating care and leading the multidisciplinary care team in an effort to use resources responsibly while providing patients and families with options for end-of-life care.

Effectiveness of palliative care services: A population-based study of end-of-life care for cancer patients.

PubMed

De Palma, Rossana; Fortuna, Daniela; Hegarty, Sarah E; Louis, Daniel Z; Melotti, Rita Maria; Moro, Maria Luisa

2018-06-01

Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life. To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life. Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model. The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015. Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04-0.06), emergency department visits (OR = 0.23, 95% CI: 0.21-0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26-0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21-0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10-0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21-1.33) ( p < 0.01 for all comparisons). Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.

End of Life Care

MedlinePlus

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[End-of-life care and end-of-life medical decisions: the ITAELD study].

PubMed

Miccinesi, Guido; Puliti, Donella; Paci, Eugenio

2011-01-01

To describe the attitudes towards end of life care and the practice of end-of-life medical decisions with possible life-shortening effect among Italian physicians. Cross sectional study (last death among the assisted patients in the last 12 months was considered). In the year 2007, 5,710 GPs and 8,950 hospital physicians were invited all over Italy to participate in the ITAELDstudy through anonymous mail questionnaire. Proportion of agreement with statements on end-of-life care issues. Proportion of deaths with an end-of-life medical decision. The response rate was 19.2%. The 65% of respondents agreed with the duty to respect any non-treatment request of the competent patient, the 55% agreed with the same duty in case of advanced directives, the 39% in case of proxy's request. The 53% of respondents agreed with the ethical acceptability of active euthanasia in selected cases. Among 1,850 deaths the 57.7% did not receive any end-of-life medical decision. For a further 21.0% no decision was possible, being sudden and unexpected deaths. In the remaining 21.3% at least one end-of-life medical decision was reported: 0.8% was classified as physician assisted death, 20.5% as non-treatment decision. Among all deceased the 19.6% were reported to have been deeply sedated. Being favourable to the use of opioids in terminal patients was associated to non-treatment decisions with possible but non-intentional life shortening effect; agreeing with the duty to fully respect any actual non-treatment request of the competent patient was associated to end-of life medical decisions with intentional life-shortening effect (adjusted OR>10 in both cases). The life stance and ethical beliefs of physicians determine their behaviour at the end of life wherever specific statements of law are lacking. Therefore education and debate are needed on these issues.

Music therapy for end-of-life care.

PubMed

Bradt, Joke; Dileo, Cheryl

2010-01-20

Music therapy in end-of-life care aims to improve a person's quality of life by helping relieve symptoms, addressing psychological needs, offering support, facilitating communication, and meeting spiritual needs. In addition, music therapists assist family and caregivers with coping, communication, and grief/bereavement. To examine effects of music therapy with standard care versus standard care alone or standard care combined with other therapies on psychological, physiological, and social responses in end-of-life care. We searched CENTRAL, MEDLINE, CINAHL, EMBASE, PSYCINFO, LILACS, CancerLit, Science Citation Index, www.musictherapyworld.de, CAIRSS for Music, Proquest Digital Dissertations, ClinicalTrials.gov, Current Controlled Trials, and the National Research Register to September 2009. We handsearched music therapy journals and reference lists, and contacted experts to identify unpublished manuscripts. There was no language restriction. We included all randomized and quasi-randomized controlled trials that compared music interventions and standard care with standard care alone or combined with other therapies in any care setting with a diagnosis of advanced life-limiting illness being treated with palliative intent and with a life expectancy of less than two years. Data were extracted, and methodological quality was assessed, independently by review authors. Additional information was sought from study authors when necessary. Results are presented using weighted mean differences for outcomes measured by the same scale and standardized mean differences for outcomes measured by different scales. Posttest scores were used. In cases of statistically significant baseline difference, we used change scores. Five studies (175 participants) were included. There is insufficient evidence of high quality to support the effect of music therapy on quality of life of people in end-of-life care. Given the limited number of studies and small sample sizes, more research is

Hospital at home: home-based end of life care

PubMed Central

Shepperd, Sasha; Wee, Bee; Straus, Sharon E

2014-01-01

Background The policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and patients with a terminal illness would prefer to receive end of life care at home. Objectives To determine if providing home-based end of life care reduces the likelihood of dying in hospital and what effect this has on patients’ symptoms, quality of life, health service costs and care givers compared with inpatient hospital or hospice care. Search methods We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library) to October 2009, Ovid MED-LINE(R) 1950 to March 2011, EMBASE 1980 to October 2009, CINAHL 1982 to October 2009 and EconLit to October 2009. We checked the reference lists of articles identified for potentially relevant articles. Selection criteria Randomised controlled trials, interrupted time series or controlled before and after studies evaluating the effectiveness of home-based end of life care with inpatient hospital or hospice care for people aged 18 years and older. Data collection and analysis Two authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible we presented the data in narrative summary tables. Main results We included four trials in this review. Those receiving home-based end of life care were statistically significantly more likely to die at home compared with those receiving usual care (RR 1.33, 95% CI 1.14 to 1.55, P = 0.0002; Chi 2 = 1.72, df = 2, P = 0.42, I2 = 0% (three trials; N=652)). We detected no statistically significant differences for functional status (measured by the Barthel Index), psychological well-being or cognitive status, between patients receiving home-based end of life care compared with those receiving standard care (which

Video Eases End-of-Life Care Discussions

Cancer.gov

Patients with advanced cancer who watched a video that depicts options for end-of-life care were more certain of their end-of-life decision making than patients who only listened to a verbal narrative.

THE LINK NURSE ROLE IN END OF LIFE CARE IN AGED CARE.

PubMed

Rosenberg, John

2016-08-01

The care of older people at the end of life is a key element of primary and community care. The Decision Assist -- Palliative Care Linkages project aimed to improve end of life care given to older Australians through establishing linkages between aged care and specialist palliative care services.

Capitated risk-bearing managed care systems could improve end-of-life care.

PubMed

Lynn, J; Wilkinson, A; Cohn, F; Jones, S B

1998-03-01

Capitated or salaried managed care systems offer an important opportunity to provide high quality, cost-effective end-of-life care. However, capitated healthcare delivery systems have strong incentives to avoid patient populations in need of such care. Care currently provided at the end of life in fee-for-service practice is commonly deficient, with high rates of avoidable pain and other burdens. Only hospice offers a better track record, yet access to hospice is limited, and length of stay is short. Traditional staff- or group-model managed care plans, with their emphasis on prevention, patient education, cost efficiency, service coordination, and integrated provider networks, present a dynamic set of conditions and organizational structures that would support real change. Advantages derived from managed care systems providing quality end-of-life care include coordinated care across delivery sites, interdisciplinary teams, integrated services, and opportunities to develop innovative care programs, service arrays, utilization controls, and accountability for care standards. We propose a special comprehensive system of managed care, which we call MediCaring, for seriously ill persons nearing the end of life. MediCaring would encompass the best elements of palliative care within a managed care structure: comprehensive, supportive, community-based services that meet personal and medical needs, a focus on patient preferences, symptom management, family counseling, and support. Other programs, such as hospice, have shown that continuity and coordinated care, financed through a capitated payment and directed at a special population, are both feasible and effective. There are obstacles to improving care at the end of life. Managed care systems, like most of medical care, have largely ignored the terminally ill patient. Current financing arrangements make it financially undesirable for insurers to recruit or retain the very sick; very ill patients can be costly over a

Developing, implementing and evaluating an end of life care intervention.

PubMed

Cox, Anna; Arber, Anne; Bailey, Fiona; Dargan, Sue; Gannon, Craig; Lisk, Radcliffe; Quinn, Barry; Samarasinghe, Jane; Wrigley, Martha; Gallagher, Ann

2017-01-31

Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.

End-of-life care of women with gynecologic malignancies: a pilot study.

PubMed

Nevadunsky, Nicole S; Spoozak, Lori; Gordon, Sharon; Rivera, Enid; Harris, Kimala; Goldberg, Gary L

2013-03-01

There are limited data regarding the end-of-life care for women with gynecologic malignancies. We set out to generate pilot data describing the care that women with gynecologic malignancies received in the last 6 months of life. Patient demographics, patterns of care, and utilization of palliative medicine consultation services were evaluated. One hundred patients who died of gynecologic malignancies were identified in our institutional database. Only patients who had received treatment with a gynecologic oncologist within 1 year of death were included. Medical records were reviewed for relevant information. Data were abstracted from the electronic medical record, and analyses were made using Student t test and Mann-Whitney U test with SPSS software. The mean age of patients was 60 years (range, 30-94 years). Racial/ethnic distribution was as follows: 38%, white; 34%, black; and 15%, Hispanic. Seventy-five percent of patients received chemotherapy within the last 6 months of life, and 30% received chemotherapy within the last 6 weeks of life. The median number of days hospitalized during the last 6 months of life was 24 (range, 0-183 days). During the last 6 months of life, 19% were admitted to the intensive care unit, 17% were intubated, 5% had terminal extubation, and 13% had cardiopulmonary resuscitative efforts. Sixty-four percent had a family meeting, 50% utilized hospice care, and 49% had palliative medicine consultations. There was a significant difference in hospice utilization when comparison was made between patients who had 14 days or more from consultation until death versus patients who had 14 days or less or no consultation, 21 (72%) versus 29 (41%), P = 0.004. Patients who were single were less likely to have a palliative medicine consultation, P = 0.005. End-of-life care for patients with gynecologic malignancies often includes futile, aggressive treatments and invasive procedures. It is unknown whether these measures contribute to longevity or

Bioethical aspects of end-of-life care.

PubMed

Zamperetti, N; Bellomo, R; Ronco, C

2008-01-01

Managing end-of-life care can be difficult because of the particular nature of intensive care support, which can separate the biological and the biographical aspects of life. Artificial organ support can temporarily delay death but, at the same time, may fail to restore a quality of life that the patient judges acceptable. For this reason, two concepts must be considered: that the mission of the healthcare system should be to care for patients according to their interests and wishes and that quality of care is related above all to the careful commitment of healthcare workers to the patient's best interests. Keeping these concepts in mind, the rule of the five Cs (competence, collegiality, communication, continuity of care and compassion) might be helpful in the management of end-of-life care. Unfortunately, neither the rule of the five Cs nor the careful use of moral principles in order to promote the patients' dignity can assure a universally acceptable decision. A reasonable level of 'moral certainty', however, might be achieved using a deliberative approach, which provides for the inclusion of all the different subjects involved in the decision-making process (patient, family, doctors, nurses and other carers), in order to reach the best possible decision in a specific situation.

Delivering End-of-Life Cancer Care: Perspectives of Providers.

PubMed

Patel, Manali I; Periyakoil, Vyjeyanthi S; Moore, David; Nevedal, Andrea; Coker, Tumaini R

2018-03-01

Persistent gaps in end-of-life cancer care delivery and growing associated expenditures remain imminent US public health issues. The objective of this study was to understand clinical providers' experiences delivering cancer care for patients at the end of life and their perspectives on potential solutions to improve quality of care. Semistructured interviews were conducted with 75 cancer care providers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Providers identified 3 major cancer care delivery challenges including lack of time to educate patients and caregivers due to clinical volume and administrative burdens, ambiguity in determining both prognosis and timing of palliative care at the end-of-life, and lack of adequate systems to support non-face-to-face communication with patients. To address these challenges, providers endorsed several options for clinical practice redesign in their settings. These include use of a lay health worker to assist in addressing early advance care planning, proactive non-face-to-face communication with patients specifically regarding symptom management, and community and in-home delivery of cancer care services. Specific strategies for cancer care redesign endorsed by health-care providers may be used to create interventions that can more efficiently and effectively address gaps in end-of-life cancer care.

End-of-life care practices of critical care nurses: A national cross-sectional survey.

PubMed

Ranse, Kristen; Yates, Patsy; Coyer, Fiona

2016-05-01

The critical care context presents important opportunities for nurses to deliver skilled, comprehensive care to patients at the end of life and their families. Limited research has identified the actual end-of-life care practices of critical care nurses. To identify the end-of-life care practices of critical care nurses. A national cross-sectional online survey. The survey was distributed to members of an Australian critical care nursing association and 392 critical care nurses (response rate 25%) completed the survey. Exploratory factor analysis using principal axis factoring with oblique rotation was undertaken on survey responses to identify the domains of end-of-life care practice. Descriptive statistics were calculated for individual survey items. Exploratory factor analysis identified six domains of end-of-life care practice: information sharing, environmental modification, emotional support, patient and family centred decision-making, symptom management and spiritual support. Descriptive statistics identified a high level of engagement in information sharing and environmental modification practices and less frequent engagement in items from the emotional support and symptom management practice areas. The findings of this study identified domains of end-of-life care practice, and critical care nurse engagement in these practices. The findings highlight future training and practice development opportunities, including the need for experiential learning targeting the emotional support practice domain. Further research is needed to enhance knowledge of symptom management practices during the provision of end-of-life care to inform and improve practice in this area. Copyright © 2015 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

Social, Economic, and Political Issues Affecting End-of-Life Care.

PubMed

Sopcheck, Janet

2016-02-01

For many decades, Americans showed a preference for delaying death through a technological imperative that often created challenges for nurses in caring for dying patients and their families. Because of their vast knowledge of health and healing, and their proximity to patients' bedsides, nurses are often well positioned to advocate for healthcare reform and legislation to improve end-of-life care. This article provides an overview of the social, economic, and political factors that are shaping end-of-life care in the United States. First, historical perspectives on end-of-life care are presented to enhance understanding of why some clinicians and patients seem to resist change to current practices. Second, end of care issues related to advanced technology utilization, societal expectations of care, clinical practices, financial incentives, palliative care services, and policy reforms are discussed. Finally, future recommendations are provided to encourage nurses and other healthcare providers to improve care for individuals facing end-of-life care decisions. © The Author(s) 2016.

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

PubMed

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

2017-04-01

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

Care of cancer patients at the end of life in a German university hospital: A retrospective observational study from 2014.

PubMed

Dasch, Burkhard; Kalies, Helen; Feddersen, Berend; Ruderer, Caecilie; Hiddemann, Wolfgang; Bausewein, Claudia

2017-01-01

Cancer care including aggressive treatment procedures during the last phase of life in patients with incurable cancer has increasingly come under scrutiny, while integrating specialist palliative care at an early stage is regarded as indication for high quality end-of-life patient care. To describe the demographic and clinical characteristics and the medical care provided at the end of life of cancer patients who died in a German university hospital. Retrospective cross-sectional study on the basis of anonymized hospital data for cancer patients who died in the Munich University Hospital in 2014. Descriptive analysis and multivariate logistic regression analyses for factors influencing the administration of aggressive treatment procedures at the end of life. Overall, 532 cancer patients died. Mean age was 66.8 years, 58.5% were men. 110/532 (20.7%) decedents had hematologic malignancies and 422/532 (79.3%) a solid tumor. Patients underwent the following medical interventions in the last 7/30 days: chemotherapy (7.7%/38.3%), radiotherapy (2.6%/6.4%), resuscitation (8.5%/10.5%), surgery (15.2%/31.0%), renal replacement therapy (12.0%/16.9%), blood transfusions (21.2%/39.5%), CT scan (33.8%/60.9%). In comparison to patients with solid tumors, patients with hematologic malignancies were more likely to die in intensive care (25.4% vs. 49.1%; p = 0.001), and were also more likely to receive blood transfusions (OR 2.21; 95% CI, 1.36 to 3.58; p = 0.001) and renal replacement therapy (OR 2.65; 95% CI, 1.49 to 4.70; p = 0.001) in the last 7 days of life. Contact with the hospital palliative care team had been initiated in 161/532 patients (30.3%). In 87/161 cases (54.0%), the contact was initiated within the last week of the patient's life. Overambitious treatments are still reality at the end of life in cancer patients in hospital but patients with solid tumors and hematologic malignancies have to be differentiated. More efforts are necessary for the timely inclusion of

Communication and Decision-Making About End-of-Life Care in the Intensive Care Unit.

PubMed

Brooks, Laura Anne; Manias, Elizabeth; Nicholson, Patricia

2017-07-01

Clinicians in the intensive care unit commonly face decisions involving withholding or withdrawing life-sustaining therapy, which present many clinical and ethical challenges. Communication and shared decision-making are key aspects relating to the transition from active treatment to end-of-life care. To explore the experiences and perspectives of nurses and physicians when initiating end-of-life care in the intensive care unit. The study was conducted in a 24-bed intensive care unit in Melbourne, Australia. An interpretative, qualitative inquiry was used, with focus groups as the data collection method. Intensive care nurses and physicians were recruited to participate in a discipline-specific focus group. Focus group discussions were audio-recorded, transcribed, and subjected to thematic data analysis. Five focus groups were conducted; 17 nurses and 11 physicians participated. The key aspects discussed included communication and shared decision-making. Themes related to communication included the timing of end-of-life care discussions and conducting difficult conversations. Implementation and multidisciplinary acceptance of end-of-life care plans and collaborative decisions involving patients and families were themes related to shared decision-making. Effective communication and decision-making practices regarding initiating end-of-life care in the intensive care unit are important. Multidisciplinary implementation and acceptance of end-of-life care plans in the intensive care unit need improvement. Clear organizational processes that support the introduction of nurse and physician end-of-life care leaders are essential to optimize outcomes for patients, family members, and clinicians. ©2017 American Association of Critical-Care Nurses.

Patient-Nurse Communication about Prognosis and End-of-Life Care.

PubMed

Hjelmfors, Lisa; van der Wal, Martje H L; Friedrichsen, Maria J; Mårtensson, Jan; Strömberg, Anna; Jaarsma, Tiny

2015-10-01

Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, p<0.001, 13% versus 4%, p<0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patient's situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

Study Shows Importance of Early End-of-Life Care Discussions

Cancer.gov

Discussions about palliative and end-of-life care are often delayed until late in a patient's life, if they take place at all. Earlier discussions may help to ensure that the care delivered at the end of life is consistent with a patient's preferences.

Acculturation of Attitudes Toward End-of-life Care

PubMed Central

Matsumura, Shinji; Bito, Seiji; Liu, Honghu; Kahn, Katharine; Fukuhara, Shunichi; Kagawa-Singer, Marjorie; Wenger, Neil

2002-01-01

OBJECTIVE Cross-cultural ethical conflicts are common. However, little is known about how and to what extent acculturation changes attitudes toward end-of-life care and advance care planning. We compared attitudes toward end-of-life care among Japanese Americans and Japanese in Japan. DESIGN Self-administered questionnaire in English and Japanese. SETTING AND PARTICIPANTS Community-based samples of Japanese Americans in Los Angeles and Japanese in Nagoya, Japan: 539 English-speaking Japanese Americans (EJA), 340 Japanese-speaking Japanese Americans (JJA), and 304 Japanese living in Japan (JJ). MEASUREMENTS AND MAIN RESULTS Few subjects (6% to 11%) had discussed end-of-life issues with physicians, while many (EJA, 40%; JJA, 55%; JJ, 54%) desired to do so. Most preferred group surrogate decision making (EJA, 75%; JJA, 57%; JJ, 69%). After adjustment for demographics and health status, desire for informing the patient of a terminal prognosis using words increased significantly with acculturation (EJA, odds ratio [OR] 8.85; 95% confidence interval, [95% CI] 5.4 to 14.3; JJA, OR 2.8; 95% CI 1.8 to 4.4; JJ, OR 1.0). EJA had more-positive attitudes toward forgoing care, advance care planning, and autonomous decision making. CONCLUSION Preference for disclosure, willingness to forgo care, and views of advance care planning shift toward western values as Japanese Americans acculturate. However, the desire for group decision making is preserved. Recognition of the variability and acculturation gradient of end-of-life attitudes among Japanese Americans may facilitate decision making and minimize conflicts. Group decision making should be an option for Japanese Americans. PMID:12133143

Bioethics for clinicians: 15. Quality end-of-life care

PubMed Central

Singer, P A; MacDonald, N

1998-01-01

A physician who receives a call from the emergency department to see a patient with heart failure will have a clear framework within which to approach this problem. The thesis of this article is that physicians do not have an analogous conceptual framework for approaching end-of-life care. The authors present and describe a framework for end-of-life care with 3 main elements: control of pain and other symptoms, the use of life-sustaining treatments and support of those who are dying and their families. This 3-part framework can be used by clinicians at the bedside to focus their effort in improving the quality of end-of-life care. PMID:9700330

Role and Involvement of Life End Information Forum Physicians in Euthanasia and Other End-of-Life Care Decisions in Flanders, Belgium

PubMed Central

Van Wesemael, Yanna; Cohen, Joachim; Onwuteaka-Philipsen, Bregje D; Bilsen, Johan; Distelmans, Wim; Deliens, Luc

2009-01-01

Objective To describe role and involvement of Life End Information Forum (LEIF) physicians in end-of-life care decisions and euthanasia in Flanders. Study Design All 132 LEIF physicians in Belgium received a questionnaire inquiring about their activities in the past year, and their end-of-life care training and experience. Principal Findings Response rate was 75 percent. Most respondents followed substantive training in end-of-life care. In 1 year, LEIF physicians were contacted 612 times for consultations in end-of-life decisions, of which 355 concerned euthanasia requests eventually resulting in 221 euthanasia cases. LEIF physicians also gave information about various end-of-life issues (including palliative care) to patients and colleagues. Conclusions LEIF physicians provide a forum for information and advice for physicians and patients. A similar health service providing support to physicians for all end-of-life decisions could also be beneficial for countries without a euthanasia law. PMID:19780854

End-of-life care decisions in the pediatric intensive care unit: roles professionals play

PubMed Central

Michelson, Kelly Nicole; Patel, Rachna; Haber-Barker, Natalie; Emanuel, Linda; Frader, Joel

2014-01-01

Objective Describe the roles and respective responsibilities of pediatric intensive care unit (PICU) health care professionals (HCPs) in end-of-life care decisions faced by PICU parents. Design Retrospective qualitative study Setting University based tertiary care children’s hospital Participants Eighteen parents of children who died in the PICU and 48 PICU HCPs (physicians, nurses, social workers, child-life specialists, chaplains, and case managers). Interventions In depth, semi-structured focus groups and one-on-one interviews designed to explore experiences in end-of-life care decision making. Measurements and Main Results We identified end-of-life care decisions that parents face based on descriptions by parents and HCPs. Participants described medical and non-medical decisions addressed toward the end of a child’s life. From the descriptions, we identified seven roles HCPs play in end-of-life care decisions. The family supporter addresses emotional, spiritual, environmental, relational and informational family needs in a nondirective way. The family advocate helps families articulate their views and needs to HCPs. The information giver provides parents with medical information, identifies decisions or describes available options, and clarifies parents’ understanding. The general care coordinator helps facilitate interactions among HCPs in the PICU, among HCPs from different subspecialty teams, and between HCPs and parents. The decision maker makes or directly influences the defined plan of action. The end-of-life care coordinator organizes and executes functions occurring directly before, during and after dying/death. The point person develops a unique trusting relationship with parents. Conclusions Our results describe a framework for HCPs’ roles in parental end-of-life care decision making in the PICU that includes directive, value-neutral and organizational roles. More research is needed to validate these roles. Actively ensuring attention to these

How Islam Influences End-of-Life Care: Education for Palliative Care Clinicians.

PubMed

Leong, Madeline; Olnick, Sage; Akmal, Tahara; Copenhaver, Amanda; Razzak, Rab

2016-12-01

According to the Joint Commission, cultural competency is a core skill required for end-of-life care. Religious and cultural beliefs predominantly influence patients' lives, especially during the dying process. Therefore, palliative care clinicians should have at least a basic understanding of major world religions. Islam is a major world religion with 1.7 billion followers. At our institution, a needs assessment showed a lack of knowledge with Islamic teachings regarding end-of-life care. To improve knowledge of clinically relevant Islamic teachings regarding end-of-life care. After consultation with a Muslim chaplain, we identified key topics and created a 10-question pretest. The pretest was administered, followed by a one-hour educational intervention with a Muslim chaplain. Next, a post-test (identical to the pretest) was administered. Eleven palliative care clinicians participated in this study. The average score on the pretest was 6.0 ± 1.2 (mean + SD) (maximum 10). After the educational intervention, the average score improved to 9.6 ± 0.7 (95% CI 2.7-4.4; P < 0.001). Qualitative feedback was positive as participants reported a better understanding of how Islam influences patients' end-of-life decisions. In this pilot study, a one-hour educational intervention improved knowledge of Islamic teachings regarding end-of-life care. We present a framework for this intervention, which can be easily replicated. We also provide key teaching points on Islam and end-of-life care. Additional research is necessary to determine the clinical effects of this intervention over time and in practice. In the future, we plan to expand the educational material to include other world religions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

End of life care - the importance of culture and ethnicity.

PubMed

Clark, Katherine; Phillips, Jane

2010-04-01

Australia is a culturally and ethnically diverse country. Within such diversity there will be differing beliefs systems about death and dying. This may be a challenging prospect for health professionals. This article discusses how cultural diversity may impact care and provides some strategies for the general practitioner when considering the provision of end of life care. This article does not attempt to provide GPs with a prescriptive approach to multicultural care, as this would run the risk of stereotyping individuals. Rather, it discusses the barriers to end of life care among different cultural and ethnic groups, and suggests ways in which to improve understanding of different cultural needs in end of life care.

End-of-life care content in 50 textbooks from multiple specialties.

PubMed

Rabow, M W; Hardie, G E; Fair, J M; McPhee, S J

2000-02-09

Prior reviews of small numbers of medical textbooks suggest that end-of-life care is not well covered in textbooks. No broad study of end-of-life care content analysis has been performed on textbooks across a wide range of medical, pediatric, psychiatric, and surgical specialties. To determine the quantity and rate the adequacy of information on end-of-life care in textbooks from multiple medical disciplines. DESIGN AND SOURCES: A 1998 review of 50 top-selling textbooks from multiple specialties (cardiology, emergency medicine, family and primary care medicine, geriatrics, infectious disease and acquired immunodeficiency syndrome [AIDS], internal medicine, neurology, oncology and hematology, pediatrics, psychiatry, pulmonary medicine, and surgery) for the presence and adequacy of content in 13 end-of-life care domains. Chapters on diseases commonly causing death and those devoted to end-of-life care were identified, read, rated, and compared by textbook specialty, chapter, and domain for the presence of helpful information in the 13 domains. Content for each domain was rated as absent, minimally present, or helpful. Textbook indexes were analyzed for the number of pages relevant to end-of-life care. Overall, helpful information was provided in 24.1% (range, 8.7%-44.2%) of the expected end-of-life content domains; in 19.1% (range, 6.2%-38.5%), expected content received minimal attention; and in 56.9% (range, 23.1 %-77.9%), expected content was absent. As a group, the textbooks with the highest percentages of absent content were in surgery (71.8%), infectious diseases and AIDS (70%), and oncology and hematology (61.9%). Textbooks with the highest percentage of helpful end-of-life care content were in family medicine (34.4%), geriatrics (34.4%), and psychiatry (29.6%). In internal medicine textbooks, the content domains with the greatest amount of helpful information were epidemiology and natural history. Content domains covered least well were social, spiritual

Factors affecting family satisfaction with inpatient end-of-life care.

PubMed

Sadler, Erin; Hales, Brigette; Henry, Blair; Xiong, Wei; Myers, Jeff; Wynnychuk, Lesia; Taggar, Ru; Heyland, Daren; Fowler, Robert

2014-01-01

Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality end-of-life care and determine high-priority target areas for quality improvement. Between September 1, 2010 and January 1, 2012 the Canadian Health care Evaluation Project (CANHELP) Bereavement Questionnaire was mailed to the next-of-kin of recently deceased inpatients to seek factors associated with satisfaction with end-of-life care. The primary outcome was the global rating of satisfaction. Secondary outcomes included rates of actual versus preferred location of death, associations between demographic factors and global satisfaction, and identification of targets for quality improvement. Response rate was 33% among 275 valid addresses. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. However, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. A common location of death was the intensive care unit (45.7%); however, this was not the preferred location of death for 47.6% of such patients. Multivariate Poisson regression analysis showed respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the end-of-life care that was provided (p = 0.001). Items identified as high-priority targets for improvement included: relationships with, and characteristics of health care professionals; illness management; communication; and end-of-life decision-making. Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. Intensive care units were a common, but not preferred, location of in-hospital deaths. Family satisfaction with end-of-life

End-of-life decisions in Dutch neonatal intensive care units.

PubMed

Verhagen, A A Eduard; Dorscheidt, Jozef H H M; Engels, Bernadette; Hubben, Joep H; Sauer, Pieter J

2009-10-01

To clarify the practice of end-of-life decision making in severely ill newborns. Retrospective descriptive study with face-to-face interviews. The 10 neonatal intensive care units in the Netherlands from October 2005 to September 2006. All 367 newborn infants who died in the first 2 months of life in Dutch neonatal intensive care units. Adequate documentation was available in 359 deaths. Presence of end-of-life decisions, classification of deaths in 3 groups, and physicians' considerations leading to end-of-life decisions. An end-of-life decision preceded death in 95% of cases, and in 5% treatment was continued until death. Of all of the deaths, 58% were classified as having no chance of survival and 42% were stabilized newborns with poor prognoses. Withdrawal of life-sustaining therapy was the main mode of death in both groups. One case of deliberate ending of life was found. In 92% of newborns with poor prognoses, end-of-life decisions were based on patients' future quality of life and mainly concerned future suffering. Considerations regarding the infant's present state were made in 44% of infants. Virtually all deaths in Dutch neonatal intensive care units are preceded by the decision to withdraw life-sustaining treatment and many decisions are based on future quality of life. The decision to deliberately end the life of a newborn may occur less frequently than was previously assumed.

Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

PubMed

Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina A; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

2014-09-01

South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Care of cancer patients at the end of life in a German university hospital: A retrospective observational study from 2014

PubMed Central

Dasch, Burkhard; Kalies, Helen; Feddersen, Berend; Ruderer, Caecilie; Hiddemann, Wolfgang; Bausewein, Claudia

2017-01-01

Background Cancer care including aggressive treatment procedures during the last phase of life in patients with incurable cancer has increasingly come under scrutiny, while integrating specialist palliative care at an early stage is regarded as indication for high quality end-of-life patient care. Aim To describe the demographic and clinical characteristics and the medical care provided at the end of life of cancer patients who died in a German university hospital. Methods Retrospective cross-sectional study on the basis of anonymized hospital data for cancer patients who died in the Munich University Hospital in 2014. Descriptive analysis and multivariate logistic regression analyses for factors influencing the administration of aggressive treatment procedures at the end of life. Results Overall, 532 cancer patients died. Mean age was 66.8 years, 58.5% were men. 110/532 (20.7%) decedents had hematologic malignancies and 422/532 (79.3%) a solid tumor. Patients underwent the following medical interventions in the last 7/30 days: chemotherapy (7.7%/38.3%), radiotherapy (2.6%/6.4%), resuscitation (8.5%/10.5%), surgery (15.2%/31.0%), renal replacement therapy (12.0%/16.9%), blood transfusions (21.2%/39.5%), CT scan (33.8%/60.9%). In comparison to patients with solid tumors, patients with hematologic malignancies were more likely to die in intensive care (25.4% vs. 49.1%; p = 0.001), and were also more likely to receive blood transfusions (OR 2.21; 95% CI, 1.36 to 3.58; p = 0.001) and renal replacement therapy (OR 2.65; 95% CI, 1.49 to 4.70; p = 0.001) in the last 7 days of life. Contact with the hospital palliative care team had been initiated in 161/532 patients (30.3%). In 87/161 cases (54.0%), the contact was initiated within the last week of the patient’s life. Conclusions Overambitious treatments are still reality at the end of life in cancer patients in hospital but patients with solid tumors and hematologic malignancies have to be differentiated. More efforts

Heightened vulnerabilities and better care for all: disability and end-of-life care.

PubMed

Stienstra, Deborah; D'Aubin, April; Derksen, Jim

2012-03-01

The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life. People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities. Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability. Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.

The neuroscience ICU nurse's perceptions about end-of-life care.

PubMed

Calvin, Amy O; Kite-Powell, Dorothy M; Hickey, Joanne V

2007-06-01

The purpose of this qualitative descriptive study was to describe neuroscience intensive care unit (NICU) nurses' perceptions regarding their roles and responsibilities in the decision-making process during the change in intensity of care and end-of-life care for patients. Twelve NICU nurses agreed to a private moderately structured interview. Three major themes summarize the data: (1) providing guidance, (2) being positioned in the middle of the communication process, and (3) feeling the emotions of patients and families. The nurse caring for a patient at the end of life provides guidance from the middle or "hub" of the communication process between family members and physicians. The nurses in this study describe an array of feelings associated with this role. This research adds to the limited body of knowledge concerning critical care nurses' experiences with end-of-life care. Providing guidance and being in the middle of the communication process can be a lonely, challenging, yet rewarding position. Results of this study provide a basis for offering emotional support to NICU nurses who care for patients at the end of life.

Effects of a Simulation Exercise on Nursing Students' End-of-Life Care Attitudes.

PubMed

Dame, Linda; Hoebeke, Roberta

2016-12-01

Students consider end-of-life care content in their nursing curricula to be inadequate and deficient in promoting the development of the necessary attitudes to care for dying patients. Research identifies simulation as an effective teaching strategy to examine nursing students' attitudes toward end-of-life care. An end-of-life care simulation was developed, implemented, and evaluated. Attitudes toward caring for dying patients were measured pre- and postsimulation on a convenience sample of 57 sophomore nursing students using the Frommelt Attitudes Toward Care of the Dying Scale-Form B. Repeated measures of ANOVA on outcome variables evaluated student attitudes toward end-of-life care. Participation in an end-of-life care simulation resulted in more positive student attitudes toward caring for dying patients (p < .001). Simulation is an active learning strategy to incorporate end-of-life care in nursing curricula and improve student attitudes toward caring for dying patients. [J Nurs Educ. 2016;55(12):701-705.]. Copyright 2016, SLACK Incorporated.

Educating nurse leaders in ethics and end-of-life care.

PubMed

Simpson, M

1999-01-01

The Midwest Bioethics Center's Nursing Leadership Institute 1999 focused on leadership in ethics and end-of-life care. Twenty-four nurses attended the four-day retreat, during which national speakers, community experts, and Center staff facilitated the continuing education of nurse leaders dedicated to improving end-of-life care in their communities. All participants in the Institute agreed to design and implement a community project for their constituency. Project reports will be made prior to the next nursing leadership institute. This article examines the role of nurses in providing end-of-life care.

Factors Influencing Cancer Patients' Choice of End-of-Life Care Place.

PubMed

Natsume, Maika; Watanabe, Kiyotaka; Matsumoto, Satoko; Naruge, Daisuke; Hayashi, Kazuhiko; Furuse, Junji; Kawamura, Masafumi; Jinno, Hiromitsu; Sano, Keiji; Fukushima, Ryoji; Osawa, Gakuji; Aruga, Etsuko; Hashiguchi, Yojiro; Tanaka, Atsushi; Takikawa, Hajime; Seki, Nobuhiko

2018-06-01

It is important for cancer patients to receive end-of-life care at the desired place. To identify issues in selection of place for end-of-life care of cancer patients to realize their optimal survivorship. Between September 2015 and January 2016, a questionnaire consisting of 33 items, including end-of-life care place preferences, was administered to cancer patients who attended three university hospitals in Japan. A total of 971 questionnaires were collected (response rate, 88.4%). Fifty-eight percent of patients preferred to stay at home to receive end-of-life care. In contrast, more than 80% of patients did not know the details of healthcare services. The factors significantly associated with patients' choice for place of end-of-life care at home were "male gender" (odds ratio [OR] = 1.43, p = 0.030), "living in a one-person household" (OR = 0.21, p < 0.001), "feeling close to friends" (OR = 0.94, p = 0.049), "thinking that the family is burdened" (OR = 0.55, p < 0.001), "thinking that pain is controllable at home" (OR = 1.39, p < 0.001), and "thinking that society should establish a system of home palliative care" (OR = 1.93, p < 0.001). This study identified six factors influencing the selection of a place for end-of-life care. Most patients have a desire for a social system that allows end-of-life care at home where they can live with their family, but have anxiety about treatment to deal with symptom change, with concern about burden on their family. These issues should be addressed in the future.

Courage, leadership, and end-of-life care: when courage counts.

PubMed

Kerfoot, Karlene M

2012-01-01

As leaders, we must feel a sense of moral obligation to implement evidence about end-of-life care in our practice setting. Nurse leaders can help patients and families orchestrate a beautiful experience that is an alternative to futile, expensive end-of-life care. Preparation is key in helping staff provide the best level of care. A plan built around the best care for patients can integrate with many diverse positions and people. Courageous nurse leaders are well adapted to maneuvering through political traps and advocating for patients and their families. Everyone benefits personally and financially, including our communities and nation, when courageous leaders advocate successfully for effective end-of-life care.

End-of-Life Care for Blood Cancers: A Series of Focus Groups With Hematologic Oncologists

PubMed Central

Odejide, Oreofe O.; Salas Coronado, Diana Y.; Watts, Corey D.; Wright, Alexi A.; Abel, Gregory A.

2014-01-01

Purpose: Hematologic cancers are associated with aggressive cancer-directed care near death and underuse of hospice and palliative care services. We sought to explore hematologic oncologists' perspectives and decision-making processes regarding end-of-life (EOL) care. Methods: Between September 2013 and January 2014, 20 hematologic oncologists from the Dana-Farber/Harvard Cancer Center participated in four focus groups regarding EOL care for leukemia, lymphoma, multiple myeloma, and hematopoietic stem-cell transplantation. Focus groups employed a semistructured format with case vignettes and open-ended questions and were followed by thematic analysis. Results: Many participants felt that identifying the EOL phase for patients with hematologic cancers was challenging as a result of the continuing potential for cure with advanced disease and the often rapid pace of decline near death. This difficulty was reported to result in later initiation of EOL care. Barriers to high-quality EOL care were also reported to be multifactorial, including unrealistic expectations from both physicians and patients, long-term patient-physician relationships resulting in difficulty conducting EOL discussions, and inadequacy of existing home-based EOL services. Participants also expressed concern that some EOL quality measures developed for solid tumors may be unacceptable for patients with blood cancers given their unique needs at the EOL (eg, palliative transfusions). Conclusion: Our analysis suggests that hematologic oncologists need better clinical markers for when to initiate EOL care. In addition, current quality measures may be inappropriate for identifying overly aggressive care for patients with blood cancers. Further research is needed to develop effective interventions to improve EOL care for this patient population. PMID:25294393

Cultural differences with end-of-life care in the critical care unit.

PubMed

Doolen, Jessica; York, Nancy L

2007-01-01

Critical care nurses are providing healthcare for an increasingly multicultural population. This ever-increasing diversity in cultures and subcultures presents a challenge to nurses who want to provide culturally competent care. It is common for patients and families to face difficult decisions about end-of-life care in critical care units, and minority cultures do not always believe in the Westerner's core values of patient autonomy and self-determination. Knowledge of these cultural differences is fundamental if critical care nurses wish to provide appropriate and culturally competent information regarding end-of-life decisions.

Physician Communication in Pediatric End-of-Life Care: A Simulation Study.

PubMed

Bateman, Lori Brand; Tofil, Nancy M; White, Marjorie Lee; Dure, Leon S; Clair, Jeffrey Michael; Needham, Belinda L

2016-12-01

The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent. Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely. Findings indicate that effective physician-parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units. The findings in this study, particularly that physician-parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care. © The Author(s) 2015.

Concerns About End-of-Life Care and Support for Euthanasia

PubMed Central

Givens, Jane L.; Mitchell, Susan L.

2009-01-01

Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents’ support for a doctor’s right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life. PMID:19345554

Concerns about end-of-life care and support for euthanasia.

PubMed

Givens, Jane L; Mitchell, Susan L

2009-08-01

Popular support for euthanasia is known to vary according to sociodemographic characteristics. However, little is known about whether support is associated with concerns regarding the emotional, physical, and economic burdens of end-of-life care. This study used data from the 1998 General Social Survey, a national survey of community-dwelling adults. The outcome variable assessed the respondents' support for a doctor's right to end life in the setting of terminal illness. Independent variables assessed the following concerns: 1) concern about the emotional burden of end-of-life decision making for family members; 2) worry about the economic burden of terminal illness; 3) concern about pain at the end of life; 4) worry that lack of money or insurance will result in second-class end-of-life care; and 5) belief that their religious community will be helpful at the end of life. Multivariable logistic regression estimated the independent effect of these concerns on support for euthanasia, adjusting for sociodemographic characteristics. Of 786 respondents, 70.6% approved of euthanasia in the setting of terminal illness. In adjusted analyses, respondents with concerns about the emotional toll of decision making on family members, economic burden, and poor health care because of lack of insurance were significantly more likely to support euthanasia. Respondents with faith in the helpfulness of their religious community were less likely to support euthanasia. In conclusion, emotional and economic concerns about end-of-life care were associated with support for the right to euthanasia. Future work can evaluate whether alleviating these concerns may reduce the perceived desire for euthanasia by patients near the end of life.

For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation?

PubMed Central

Seaberg, Preston; Hamm, Robert M.; McCarthy, Laine H.

2016-01-01

Clinical Question For patients with terminal chronic illness, does more face-to-face time with a healthcare provider decrease aggressive end-of-life (EOL) care such as ICU admission, feeding tube placement, CPR, or intubation? Answer Inconclusive. Existing evidence does not provide a conclusive answer to this particular question. While multiple prospective, randomized, controlled trials demonstrate an association between increased patient-provider contact time and decreased aggressive EOL care, interventions in those studies contain multiple confounding elements that preclude isolation of the time factor from the other elements in the interventions. There is a need for research focusing on physician-patient communication time and EOL care. Level of Evidence for the Answer A Search Terms Terminal care, palliative care, terminal illness, communication, patient-provider relations, time factors, life support care, resuscitation orders, enteral nutrition Inclusion Criteria Systematic reviews, meta-analyses, and comparative studies published between 2008 and the current date comparing EOL care or EOL care preferences of patients who spend more face-to-face time with a healthcare provider to those of patients who spend less face-to-face time with a healthcare provider. Exclusion Criteria Studies that do not report the primary outcome of interest (EOL care or EOL care preferences) or that do not measure discussion time or provide interventions that include face-to-face discussion. PMID:25796765

Identifying care actions to conserve dignity in end-of-life care.

PubMed

Brown, Hilary; Johnston, Bridget; Ostlund, Ulrika

2011-05-01

Community nurses have a central role in the provision of palliative and end-of-life care; helping people to die with dignity is an important component of this care. To conserve dignity, care should comprise a broad range of actions addressing the distress that might impact on the patient's sense of dignity. These care actions need to be defined. This study aims to suggest care actions that conserve dignity at the end of life based on evidence from local experience and community nursing practice. Data were collected by focus group interviews and analysed by framework analysis using the Chochinov model of dignity as a predefined framework. Suggestions on care actions were given in relation to all themes. As part of a multi-phase project developing and testing a dignity care pathway, this study might help community nurses to conserve dying patients' dignity.

End-of-life care of children with diffuse intrinsic pontine glioma.

PubMed

Hasan, Fyeza; Weingarten, Kevin; Rapoport, Adam; Bouffet, Eric; Bartels, Ute

2018-05-01

The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.

End-of-life care: the long conversation.

PubMed

Byock, Ira; Sorrel, Amy Lynn

2015-04-01

California palliative care specialist, author, and consultant Ira Byock, MD, calls the issues surrounding end-of-life care "a public health crisis." But he says many of the same solutions to improving the health care system overall - shared decisionmaking, advancements in medical education, better payment and delivery structures - apply equally to this area of medical care. Dr. Byock is the General Session keynote speaker at TexMed 2015 in May.

Family-centered end-of-life care in the ICU.

PubMed

Wiegand, Debra L; Grant, Marian S; Cheon, Jooyoung; Gergis, Mary A

2013-08-01

Families of older adults are intricately involved in the end-of-life decision-making process for a family member with a serious illness in the intensive care unit (ICU) setting. However, families are not always as involved and as informed as they would like to be. Creating a culture that assesses family needs and supports families is an important component of family-centered care. There are several strategies that nurses and other members of the interdisciplinary team can use to promote family-centered end-of-life care in the ICU. Nurses can get to know the family by spending time talking with them, assessing them, seeking to understand their perspectives on their family member's condition, and discussing previously verbalized patient wishes for care. This article offers strategies nurses can use to help guide the family through the end-of-life decision-making process, support families as difficult and complex decisions are made in collaboration with the health care team, and prepare families for the dying process. Copyright 2013, SLACK Incorporated.

[End of life care difficulties in intensive care units. The nurses' perspective].

PubMed

Velarde-García, Juan Francisco; Luengo-González, Raquel; González-Hervías, Raquel; González-Cervantes, Sergio; Álvarez-Embarba, Beatriz; Palacios-Ceña, Domingo

To describe the difficulties perceived by nursing staff in the delivery of end-of-life care to critically ill patients within intensive care units (ICU). A descriptive phenomenological qualitative study was performed. A purposeful and snowball sampling of nursing staff with at least 1 year's previous experience working in an ICU was conducted. Twenty-two participants were enrolled. Data collection strategies included in-depth unstructured and semi-structured interviews and researcher's field notes. Data were analysed using the Giorgi proposal. Three themes were identified: academic-cultural barriers, related to the care orientation of the ICU and lack of training in end of life care; architectural-structural barriers, related to the lack of space and privacy for the patient and family in the last moments of life; and psycho-emotional barriers, related to the use of emotional detachment as a strategy applied by nursing staff. Nursing staff need proper training on end-of-life care through the use of guidelines or protocols and the development of coping strategies, in addition to a change in the organisation of the ICU dedicated to the terminal care of critically ill patients and family support. Copyright © 2017 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

Patient-reported assessment of quality care at end of life: development and validation of Quality Care Questionnaire-End of Life (QCQ-EOL).

PubMed

Yun, Young Ho; Kim, Soo-Hyun; Lee, Kyoung-Min; Park, Sang Min; Lee, Chang Geol; Choi, Youn Seon; Lee, Won Sup; Kim, Si-Young; Heo, Dae Seog

2006-09-01

Our goal was to validate an instrument with which terminally ill patients could evaluate the quality of care they receive at the end of life (EOL). Questionnaire development followed a four-phase process: item generation and reduction, construction, pilot testing, and field-testing. Using relevance and priority criteria and pilot testing, we developed a 16-item questionnaire. Factor analyses of data from 235 patients resulted in the Quality Care Questionnaire-End of Life (QCQ-EOL) covering dignity-conserving care, care by health care professionals, individualised care, and family relationships. All subscales and total scores showed high internal consistency (Cronbach alpha range, 0.73-0.89). The ability of total score and selective subscale scores clearly differentiated patients on the basis of clinical situation, sense of dignity, and general rating of care quality. Correlations of scores between patients and caregivers were substantial. The QCQ-EOL can be adopted to assess the quality of care received by terminally ill patients.

Male-female patient differences in association between end-of-life discussions and receipt of intensive care near death

PubMed Central

Sharma, Rashmi K.; Prigerson, Holly G.; Penedo, Frank J.; Maciejewski, Paul K.

2015-01-01

Background Patient gender plays a significant role in patient-physician communication, patient illness understanding and aggressiveness of end of life (EoL) care. However, little is known about the extent to which gender differences in the effects of EoL discussions on EoL care contribute to gender differences in EoL care. The present study aims to determine if gender differences exist in receipt of intensive care unit (ICU) care near death and in the association between EoL discussions and receipt of ICU EoL care. Methods Multi-site, prospective, cohort study of patients (N=353) with metastatic cancers, identified as terminally ill at study enrollment and interviewed a median of 4.1 months before their deaths. Postmortem chart reviews and caregiver interviews documented ICU stays in the last week of life. Results Patients who received ICU care at the EoL were more likely to be male than those who did not (73% male vs. 52% male, p=0.02). Adjusting for potential confounds, male patients reporting an EoL discussion were less likely to have an ICU stay in the last week of life than male patients with no EoL discussion (AOR=0.26, 95% CI 0.07–0.91; p=0.04). There was no association between EoL discussions and ICU stays near death among female patients. Conclusions Men with advanced cancers are more likely than women to receive aggressive, non-beneficial, ICU care near death. Gender differences in effects of EoL discussions on EoL care likely contribute to, and may even explain, gender differences in receipt of ICU care in the last week of life. PMID:25975179

Defining priorities for improving end-of-life care in Canada

PubMed Central

Heyland, Daren K.; Cook, Deborah J.; Rocker, Graeme M.; Dodek, Peter M.; Kutsogiannis, Demetrios J.; Skrobik, Yoanna; Jiang, Xuran; Day, Andrew G.; Cohen, S. Robin

2010-01-01

Background High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families. Methods We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction. Results We approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient’s condition and discussions with the doctor about final location of care and use of end-of-life technology. Interpretation End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making. PMID:20921249

Anticipatory prescribing at the end of life in Lothian care homes.

PubMed

Finucane, Anne M; Stevenson, Barbara; Gardner, Hilary; McArthur, Dorothy; Murray, Scott A

2014-11-01

Common symptoms at the end of life include pain, breathlessness, anxiety, respiratory secretions and nausea. National end-of-life care strategies advocate anticipatory prescribing for timely management of these symptoms to enhance patient care by preventing unnecessary distress. This study investigated the extent to which residents in eight Lothian care homes had anticipatory medications prescribed prior to death. Data were collected as part of a service development project to improve palliative care in nursing care homes in Edinburgh. Of the 77 residents who died in the care homes, 54% had anticipatory medicines prescribed. Only 15% had prescriptions for all four nationally recommended anticipatory medications. Many care home residents do not have the recommended anticipatory medications in place in the last days of life and thus may experience inadequate symptom control. Interventions that increase the availability of anticipatory medicines to manage common symptoms at the end of life for care home residents are required.

Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review.

PubMed

Wrigley, Anthony

2015-08-01

The Liverpool Care Pathway for the Dying has recently been the topic of substantial media interest and also been subject to the independent Neuberger Review. This review has identified clear failings in some areas of care and recommended the Liverpool Care Pathway be phased out. I argue that while the evidence gathered of poor incidences of practice by the Review is of genuine concern for end of life care, the inferences drawn from this evidence are inconsistent with the causes for the concern. Seeking to end an approach that is widely seen as best practice and which can genuinely deliver high quality care because of negative impressions that have been formed from failing to implement it properly is not a good basis for radically overhauling our approach to end of life care. I conclude that improvements in training, communication and ethical decision-making, without the added demand to end the Liverpool Care Pathway, would have resulted in a genuine advance in end of life 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.

The trajectory of experience of critical care nurses in providing end-of-life care: A qualitative descriptive study.

PubMed

Ong, Keh Kiong; Ting, Kit Cheng; Chow, Yeow Leng

2018-01-01

To understand the perceptions of critical care nurses towards providing end-of-life care. There has been an increasing interest in end-of-life care in the critical care setting. In Singapore, approximately half of deaths in the hospital occur during critical care. While nurses are well positioned to provide end-of-life care to patients and their family members, they faced barriers to providing end-of-life care. Also, providing end-of-life care has profound positive and negative psychological effects on nurses, with the latter being more prominent. Qualitative descriptive design. Data collection was performed in a medical intensive care unit of a public tertiary hospital in Singapore. Ten registered nurses were purposively sampled and interviewed individually using a semi-structured interview guide. A codebook was developed to guide coding, and data were thematically analysed. Rigour was maintained. Nurses went through a trajectory of experience. They experienced the culture of care and developed dissatisfaction with it. The tension shaped their perception and meaning of life and death, and they developed mechanisms to reach resolution. This study provides insight on nurses' perception as a trajectory of experience and raised several implications on clinical practice, policy and research. There is a need to alleviate the tension nurses face and to facilitate coming to terms with the tension by improving the culture of care and supporting nurses. Nurses could be involved more in decision-making and empowered to start end-of-life care conversations within the team and with family members. Communication with family members and between nurses and doctors could be improved. Support for nurses providing end-of-life care could be enhanced through promoting social networks, education and bereavement support. Further research is needed to explore ways to support and empower nurses to provide end-of-life care in critical care. © 2017 John Wiley & Sons Ltd.

Improving Health Care Provider Communication in End-of-Life Decision-Making.

PubMed

Wilson, Tracey; Haut, Cathy; Akintade, Bimbola

2017-01-01

Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about end-of-life decision-making is a daunting task. Often, health care providers are not trained, experienced, or comfortable facilitating these conversations. This article describes a quality improvement project that identified current views on end-of-life communication in the intensive care unit and potential barriers that obstruct open discussion, and offering strategies for improvement. ©2017 American Association of Critical-Care Nurses.

Promoting Neonatal Staff Nurses' Comfort and Involvement in End of Life and Bereavement Care

PubMed Central

Lane, Betty S.

2013-01-01

Background. Nurses who provide end of life and bereavement care to neonates and their families are potentially at risk for developing stress-related health problems. These health problems can negatively affect nurses' ability to care for their patients. Purpose. Nurses need to be knowledgeable about end of life and bereavement issues to provide quality care. This study sought to evaluate the effect of a bereavement seminar on the attitudes of nurses regarding end of life and palliative care of neonates. Design. A convenience sample of fourteen neonatal nurses completed a Bereavement/End of Life Attitudes about Care of Neonatal Nurses Scale after a bereavement seminar designed to provide information on end of life care. A pre- and posttest design with an intervention and control group was used to assess changes in nurse bereavement attitudes in relationship to comfort, role, and involvement. Results. After bereavement seminar, the seminar attendees had higher levels of comfort in providing end of life care than nurses in the control group (t = −0.214; P = 0.04). Discussion. Nurses' comfort levels can be improved by attending continuing education on end of life care and having their thoughts on ethical issues in end of life care acknowledged by their peers. PMID:23606955

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.

Relatives in end-of-life care--part 2: a theory for enabling safety.

PubMed

Ohlén, Joakim; Andershed, Birgitta; Berg, Christina; Frid, Ingvar; Palm, Carl-Axel; Ternestedt, Britt-Marie; Segesten, Kerstin

2007-02-01

To develop a goal-oriented praxis theory for enabling safety for relatives when an adult or older patient is close to end-of-life. This is the second part of a project focusing on the situation and needs of relatives in end-of-life care. Our interpretation of the existing corpus of knowledge pertaining to the needs of close relatives in this situation showed the significance of relatives' need for safety. The theory was developed step-by-step, through triangulation of critical review of empirical research in the field, our own clinical experiences from end-of-life care, renewed literature searches and theoretical reasoning. The foundation for the theory is taken from the ethical intention of the philosopher Paul Ricoeur. From this, the theory focuses on relatives in the context of end-of-life care with the goal of enabling safety. This is proposed by four aphorisms functioning as safety enablers and these are directed towards the professional's approach and attitude, the relative's concern for the patient, the specific situation for the relative and the patient's end-of-life period as a period in the life of the relative. Implications for end-of-life practice are considered and include aspects for promotion of just institutions in end-of-life care, the significance of negotiated partnership in end-of-life care, enabling safety for relatives living in existential and practical uncertainty in connection with end-of-life care and diversity of relatives' preferences as they live through this particular period.

'End of life could be on any ward really': A qualitative study of hospital volunteers' end-of-life care training needs and learning preferences.

PubMed

Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

2017-10-01

Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. To explore hospital volunteers' end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Qualitative focus groups. Volunteers from a large teaching hospital were purposively sampled. Five focus groups were conducted with 25 hospital volunteers (aged 19-80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to 'refresh' training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals.

Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis

PubMed Central

Maio, Laura; Rait, Greta; Iliffe, Steve

2014-01-01

Background: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. Aim: We explored what quality end-of-life care for dementia is from the perspective of family carers. Design: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. Data sources: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. Results: Eight studies were included. There was an overarching theme of ‘A family’s belief of death and their choice of treatment’. Three further themes were then identified to explain family carers’ beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers’ ability to think about death and dying. Conclusion: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this. PMID:24625567

Caring to learn, learning to care: Inmate Hospice Volunteers and the Delivery of Prison End-of-Life Care

PubMed Central

Cloyes, Kristin G.; Rosenkranz, Susan J.; Supiano, Katherine P.; Berry, Patricia H.; Routt, Meghan; Llanque, Sarah M.; Shannon-Dorcy, Kathleen

2017-01-01

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners. PMID:28100141

Association Between Immigrant Status and End-of-Life Care in Ontario, Canada

PubMed Central

Yarnell, Christopher J.; Fu, Longdi; Manuel, Doug; Tanuseputro, Peter; Stukel, Therese; Pinto, Ruxandra; Scales, Damon C.; Laupacis, Andreas

2017-01-01

Importance People who immigrate face unique health literacy, communication, and system navigation challenges, and they may have diverse preferences that influence end-of-life care. Objective To examine end-of-life care provided to immigrants to Canada in the last 6 months of their life. Design, Setting, and Participants This population-based cohort study (April 1, 2004, to March 31, 2015) included 967 013 decedents in Ontario, Canada, using validated linkages between health and immigration databases to identify immigrant (since 1985) and long-standing resident cohorts. Exposures All decedents who immigrated to Canada between 1985 and 2015 were classified as recent immigrants, with subgroup analyses assessing the association of time since immigration, and region of birth, with end-of-life care. Main Outcomes and Measures Location of death and intensity of care received in the last 6 months of life. Analysis included modified Poisson regression with generalized estimating equations, adjusting for age, sex, socioeconomic position, causes of death, urban and rural residence, and preexisting comorbidities. Results Among 967 013 decedents of whom 47 514 (5%) immigrated since 1985, sex, socioeconomic status, urban (vs rural) residence, and causes of death were similar, while long-standing residents were older than immigrant decedents (median [interquartile range] age, 75 [58-84] vs 80 [68-87] years). Recent immigrant decedents were overall more likely to die in intensive care (15.6% vs 10.0%; difference, 5.6%; 95% CI, 5.2%-5.9%) after adjusting for differences in age, sex, income, geography, and cause of death (relative risk, 1.30; 95% CI, 1.27-1.32). In their last 6 months of life, recent immigrant decedents experienced more intensive care admissions (24.9% vs 19.2%; difference, 5.7%; 95% CI, 5.3%-6.1%), hospital admissions (72.1% vs 68.2%; difference, 3.9%; 95% CI, 3.5%-4.3%), mechanical ventilation (21.5% vs 13.6%; difference, 7.9%; 95% CI, 7.5%-8.3%), dialysis

Factors associated with end-of-life by home-visit nursing-care providers in Japan.

PubMed

Nakanishi, Miharu; Niimura, Junko; Nishida, Atsushi

2017-06-01

Home-visit nursing-care services in Japan are expected to provide home hospice services for older patients with non-cancer diseases. The aim of the present study was to examine factors that contribute to the provision of end-of-life care by home-visit nursing-care providers in Japan. The present retrospective study was carried out using nationally representative cross-sectional data from the 2007, 2010, and 2013 Survey of Institutions and Establishments for Long-Term Care. A total of 138 008 randomly sampled home-visit nursing-care service users were included in this analysis. End-of-life care (study outcome) was defined as the provision of nursing-care within the last month of life. Of the 138 008 patients at home, 2280 (1.7%) received home-based nursing care within the last month of life, and end-of-life care was offered primarily to cancer patients (n = 1651; 72.4%). After accounting for patient characteristics, patients were more likely to receive end-of-life care when they used home-visit nursing-care providers that had a greater number of nursing staff or were located in a region with fewer hospital beds. Among home-visit nursing-care providers, the nursing staff ratio and the availability of hospital beds were related to the provision of end-of-life care. Home-visit nursing-care providers should establish specialist hospice care teams with enhanced staffing ratios to allow for the adequate provision of home-based end-of-life care. A community-based network between home-visit nursing-care providers and hospitals should also be established to attain an integrated end-of-life care system for elderly populations in regions with more hospital beds. Geriatr Gerontol Int 2017; 17: 991-998. © 2016 Japan Geriatrics Society.

Health Care Professionals' Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study.

PubMed

Milberg, Anna; Torres, Sandra; Ågård, Pernilla

2016-01-01

The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals' understandings of cross-cultural interaction during end-of-life care. Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, 'unusual' emotional and pain expressions, the expectation that these patients' families would be 'different' and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting "the unknown". In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as "the unknown" since they anticipate a variety of challenges

Health Care Professionals’ Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study

PubMed Central

Torres, Sandra; Ågård, Pernilla

2016-01-01

Objective The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals’ understandings of cross-cultural interaction during end-of-life care. Methods Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. Results The health care professionals interviewed talked about cross-cultural interaction in end-of-life care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, ‘unusual’ emotional and pain expressions, the expectation that these patients’ families would be ‘different’ and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting “the unknown”. In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. Conclusions The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as �

End-of-Life Care Policies in Flemish Residential Care Facilities Accommodating Persons with Intellectual Disabilities

ERIC Educational Resources Information Center

D'Haene, I.; Pasman, H. R. W.; Deliens, L.; Bilsen, J.; Mortier, F.; Stichele, R. Vander

2010-01-01

Objective: This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care. Methods: A…

‘End of life could be on any ward really’: A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

PubMed Central

Brighton, Lisa Jane; Koffman, Jonathan; Robinson, Vicky; Khan, Shaheen A; George, Rob; Burman, Rachel; Selman, Lucy Ellen

2017-01-01

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. PMID:28056642

Teaching End-of-Life Care Using Interprofessional Simulation.

PubMed

Gannon, Jane; Motycka, Carol; Egelund, Eric; Kraemer, Dale F; Smith, W Thomas; Solomon, Kathleen

2017-04-01

Competency in end-of-life (EOL) care is a growing expectation for health professions students. This study assessed the impact of four EOL care scenarios, using high-fidelity simulation, on the perceived learning needs and attitudes of pharmacy and nursing students. On three campuses, pharmacy students (N = 158) were exposed to standard paper EOL case scenarios, while a fourth campus exposed eight graduate nursing and 37 graduate pharmacy students to simulated versions of the same cases. The paper-based groups produced similar pre-post changes on the End of Life Professional Caregiver Survey. Results were pooled and compared with the simulation-only group, revealing significantly higher changes in pre-post scores for the simulation group. Students participating in the simulation group showed some significant differences in attitudes toward EOL care, compared with students in the classroom setting. [J Nurs Educ. 2017;56(4):205-210.]. Copyright 2017, SLACK Incorporated.

Nurses' autonomy in end-of-life situations in intensive care units.

PubMed

Paganini, Maria Cristina; Bousso, Regina Szylit

2015-11-01

The intensive care unit environment focuses on interventions and support therapies that prolong life. The exercise by nurses of their autonomy impacts on perception of the role they assume in the multidisciplinary team and on their function in the intensive care unit context. There is much international research relating to nurses' involvement in end-of-life situations; however, there is a paucity of research in this area in Brazil. In the Brazilian medical scenario, life support limitation generated a certain reluctance of a legal nature, which has now become unjustifiable with the publication of a resolution by the Federal Medical Council. In Brazil, the lack of medical commitments to end-of-life care is evident. To understand the process by which nurses exercise autonomy in making end-of-life decisions in intensive care units. Symbolic Interactionism and Corbin and Strauss theory methodology were used for this study. Data were collected through single audio-recorded qualitative interviews with 14 critical care nurses. The comparative analysis of the data has permitted the understanding of the meaning of nurse's experience in exercising autonomy relating to end-of-life decision-making. Institutional ethics approval was obtained for data collection. Participants gave informed consent. All data were anonymized. The results revealed that nurses experience the need to exercise autonomy in intensive care units on a daily basis. Their experience expressed by the process of increase opportunities to exercise autonomy is conditioned by the pressure of the intensive care unit environment, in which nurses can grow, feel empowered, and exercise their autonomy or else can continuously depend on the decisions made by other professionals. Nurses exercise their autonomy through care. They work to create new spaces at the same time that they acquire new knowledge and make decisions. Because of the complexity of the end-of-life situation, nurses must adopt a proactive attitude

Balancing: a basic process in end-of-life cancer care.

PubMed

Thulesius, Hans; Håkansson, Anders; Petersson, Kerstin

2003-12-01

In this grounded theory study, the authors interviewed caregivers and patients in end-of-life cancer care and found Balancing to be a fundamental process explaining the problem-solving strategies of most participants and offering a comprehensive perspective on both health care in general and end-of-life cancer care in particular. Balancing stages were Weighing--sensing needs and wishes signaled by patients, gauging them against caregiver resources in diagnosing and care planning; Shifting--breaking bad news, changing care places, and treatments; and Compensating--controlling symptoms, educating and team-working, prioritizing and "stretching" time, innovating care methods, improvising, and maintaining the homeostasis of hope. The Balancing outcome is characterized by Compromising, or "Walking a fine line," at best an optimized situation, at worst a deceit.

Pain and symptom management in palliative care and at end of life.

PubMed

Wilkie, Diana J; Ezenwa, Miriam O

2012-01-01

The purpose of this review is to provide a literature update of the research published since 2004 on pain and symptom management in palliative care and at end of life. Findings suggest that pain and symptoms are inadequately assessed and managed, even at the end of life. Although not pervasive, there is evidence of racial/ethnic disparities in symptom management in palliative care and at end of life. There is a need for a broader conceptualization and measurement of pain and symptom management as multidimensional experiences. There is insufficient evidence about mechanisms underlying pain at end of life. Although there are advances in the knowledge of pain as a multidimensional experience and the many symptoms that occur sometimes with pain, gaps remain. One approach to addressing the gaps will involve assessment and management of pain and symptoms as multidimensional experiences in people receiving palliative care and at end of life. Copyright © 2012 Elsevier Inc. All rights reserved.

The Nurse Advocate in End-of-Life Care

PubMed Central

Hebert, Kathy; Moore, Harold; Rooney, Joan

2011-01-01

End-of-life nursing encompasses many aspects of care: pain and symptom management, culturally sensitive practices, assisting patients and their families through the death and dying process, and ethical decisionmaking. Advocacy has been identified as a key core competency for the professional nurse, yet the literature reveals relevant barriers to acquiring this skill. Challenges exist, such as limitations in nursing school curricula on the death and dying process, particularly in multicultural settings; differing policies and practices in healthcare systems; and various interpretations of end-of-life legal language. Patricia Benner's conceptual model of advocacy behaviors in end-of-life nursing provides the framework in which nurses can become effective patient advocates. Developing active listening and effective communication skills can enhance the nurse-patient trust relationship and create a healing environment. PMID:22190882

Japanese care workers' perception of dementia-related physically and psychologically aggressive behaviour symptoms.

PubMed

Hirata, Hiromi; Harvath, Theresa A

2017-03-01

The purpose of this study was to explore Japanese care workers' attributions, beliefs and cultural explanations of physically and psychologically aggressive behaviour symptoms. Physically and psychologically aggressive behaviour symptoms by older people with dementia have been associated with occupational stress among care workers in the United States and other Western countries and may contribute to staff turnover. However, few studies related to this issue have been conducted in Japan, where care worker reaction to physically and psychologically aggressive behaviour symptoms might be different because of cultural and customary differences in how care is provided for older people. This study reports on the results of three open-ended questions that were part of a larger study that explored Japanese care workers' experiences with aggressive behaviour symptoms in persons with dementia. Convenience sampling was used to recruit 137 care workers in 10 nursing homes in the northern and western areas of Japan. The answers to the open-ended questions were analysed using a content analysis. Most of the participants indicated that they believed that physically and psychologically aggressive behaviour symptoms came from residents' stress from dementia. Approximately, one-fourth of the participants responded that Japanese values such as chu (loyalty) and joge (hierarchy) influenced their work with residents with physically and psychologically aggressive behaviour symptoms. Seventeen participants (12%) commented either that they respected older people or that they respected older people as persons who had had many experiences in life. Interestingly, 43 responses (41.0%) indicated that physically and psychologically aggressive behaviour symptoms influenced quality of care positively, while, not surprisingly, about 30 responses indicated that those behaviour symptoms influenced quality of care negatively. Findings from this study indicate that the training and education needs to

Spirituality in end-of-life care: attending the person on their journey.

PubMed

Hayden, Deborah

2011-11-01

Spirituality is a fundamental element to the human experience of health and healing, illness and dying. Spiritual care is an essential component of palliative and end-of-life care provision and is the responsibility of all staff and carers involved in the care of patients and families. As end-of-life care is a significant element of community nursing, this article explores the relevancy of spirituality to end-of-life practice, the challenge of defining spirituality and the attributes and skills required for the practice of spiritual care. The aim of is to encourage self reflection and open dialogue about the subject, thus enhancing community nurses' understanding of spiritual care practice. By reflecting and generating talk about the practice of spiritual care, it may become more normalized, recognized, and practically meaningful, thereby retaining its significance in holistic nursing.

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

The Ambulatory and Home Care Record: A Methodological Framework for Economic Analyses in End-of-Life Care

PubMed Central

Guerriere, Denise N.; Coyte, Peter C.

2011-01-01

Provision of end-of-life care in North America takes place across a multitude of settings, including hospitals, ambulatory clinics and home settings. As a result, family caregiving is characteristically a major component of care within the home. Accordingly, economic evaluation of the end-of-life care environment must devote equal consideration to resources provided by the public health system as well as privately financed resources, such as time and money provided by family caregivers. This paper addresses the methods used to measure end-of-life care costs. The existing empirical literature will be reviewed in order to assess care costs with areas neglected in this body of literature to be identified. The Ambulatory and Home Care Record, a framework and tool for comprehensively measuring costs related to the provision and receipt of end-of-life care across all health care settings, will be described and proposed. Finally, areas for future work will be identified, along with their potential contribution to this body of knowledge. PMID:21629752

Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses

PubMed Central

Candrian, Carey; Tate, Channing; Broadfoot, Kirsten; Tsantes, Alexandra; Matlock, Daniel; Kutner, Jean

2017-01-01

to forego aggressive treatment measures when they enroll in hospice. In a literal sense, to enroll in hospice means to bring in support for end-of-life care. It means to identify the need for expertise around symptom management at end-of-life, and agree to having a care team come and manage someone’s physical, psychosocial, and/or spiritual needs. As with all care, hospice can be stopped if it is no longer considered appropriate. To uncover the communication tensions undergirding a hospice admission interaction, we use Street’s ecological theory of patient-centered communication to analyze a case exemplar of a hospice admission interaction. This analysis reveals diverse points of struggle within hospice decision-making processes around hospice care and the need for communication techniques that promote trust and acceptance of end-of-life care. Lessons learned from talking about hospice care can inform other quality initiatives around communication and informed decision-making in the context of advance care planning, palliative care, and end-of-life care. PMID:28420191

Palliative care nursing involvement in end-of-life decision-making: Qualitative secondary analysis.

PubMed

Hernández-Marrero, Pablo; Fradique, Emília; Pereira, Sandra Martins

2018-01-01

Nurses are the largest professional group in healthcare and those who make more decisions. In 2014, the Committee on Bioethics of the Council of Europe launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations" (hereinafter, Guide), aiming at improving decision-making processes and empowering professionals in making end-of-life decisions. The Guide does not mention nurses explicitly. To analyze the ethical principles most valued by nurses working in palliative care when making end-of-life decisions and investigate if they are consistent with the framework and recommendations of the Guide; to identify what disputed/controversial issues are more frequent in these nurses' current end-of-life care practices. Qualitative secondary analysis. Participants/context: Three qualitative datasets including 32 interviews from previous studies with nurses working in palliative care in Portugal. Ethical consideration: Ethical approval was obtained from the Ethics Research Lab of the Instituto de Bioética (Ethics Research Lab of the Institute of Bioethics) (Ref.04.2015). Ethical procedures are thoroughly described. All participant nurses referred to autonomy as an ethical principle paramount in end-of-life decision-making. They were commonly involved in end-of-life decision-making. Palliative sedation and communication were the most mentioned disputed/controversial issues. Autonomy was highly valued in end-of-life care and decision-making. Nurses expressed major concerns in assessing patients' preferences, wishes, and promoting advance care planning. Nurses working in palliative care in Portugal were highly involved in end-of-life decision-making. These processes embraced a collective, inclusive approach. Palliative sedation was the most mentioned disputed issue, which is aligned with previous findings. Communication also emerged as a sensitive ethical issue; it is surprising, however, that only three nurses referred to it. While the

Pediatrician Ambiguity in Understanding Palliative Sedation at the End of Life.

PubMed

Henderson, Carrie M; FitzGerald, Michael; Hoehn, K Sarah; Weidner, Norbert

2017-02-01

Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation. Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using χ 2 and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement. Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation. Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.

Measuring Experience With End-of-Life Care: A Systematic Literature Review

PubMed Central

Lendon, Jessica Penn; Ahluwalia, Sangeeta C.; Walling, Anne M.; Lorenz, Karl A.; Oluwatola, Oluwatobi A.; Price, Rebecca Anhang; Quigley, Denise; Teno, Joan M.

2016-01-01

Context Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members’ or caregivers’ experiences of care. Objectives To evaluate the instruments currently in use to inform next steps for research and policy in this area. Methods We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS® for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed. Results We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated. Conclusion This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings. PMID:25543110

Caregiver informational support in different patient care settings at end of life.

PubMed

Lavalley, Susan A

2018-01-01

Caregivers of the terminally ill face many complicated tasks including providing direct patient care, communicating with clinicians, and managing the logistical demands of daily activities. They require instructive information at all points in the illness process and across several settings where patients receive end-of-life care. This study examines how the setting where a patient receives end-of-life care affects caregivers' informational support needs by thematically analyzing data from caregiver interviews and clinical observations. Caregivers providing care for patients at home received informational support related to meeting patients' mobility, medication, and nutritional needs. Caregivers who provided care remotely received informational support to navigate transitions between patient care settings or long-term care arrangements, including financial considerations and insurance logistics. The findings document that interventions designed to enhance information for caregivers should account for caregiving context and that health care providers should proactively and repeatedly assess caregiver information needs related to end-of-life patient care.

The use of behavioural theories in end-of-life care research: A systematic review.

PubMed

Scherrens, Anne-Lore; Beernaert, Kim; Robijn, Lenzo; Deliens, Luc; Pauwels, Nele S; Cohen, Joachim; Deforche, Benedicte

2018-06-01

It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context. To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined. We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009). The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories. We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies - 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative - for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning. In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.

Nurses' care practices at the end of life in intensive care units in Bahrain.

PubMed

O'Neill, Catherine S; Yaqoob, Maryam; Faraj, Sumaya; O'Neill, Carla L

2017-12-01

The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought. This study explored nurses' care practices at the end of life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity. Research Design and context: Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated. Ethical Considerations: Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals. A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting. Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members. Despite the avoidance of death talk and nurses' lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values.

Exhaust All Measures: Ethical Issues in Pediatric End-of-Life Care.

PubMed

Thieleman, Kara J; Wallace, Cara; Cimino, Andrea N; Rueda, Heidi A

2016-01-01

The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for health care decisions of children under age 18, although the child's wishes must also be considered. Social workers must balance core social work values, bioethical values, and psychosocial issues presented by such situations. While studies have been conducted with physicians and nurses regarding ethical issues in pediatric end-of-life care settings, little is known about how social workers experience these conflicts. This article utilizes two vignettes to illustrate potential ethical issues in this setting and applies the National Association of Social Workers Standards for Palliative and End of Life Care (NASW, 2004 ) to explore options for their resolution. These vignettes provide descriptions of possible reactions in this setting and can be used as a basis for further exploration of ethics in pediatric end-of-life care from a social work perspective.

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.

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.

Team-Based Models for End-of-Life Care: An Evidence-Based Analysis

PubMed Central

2014-01-01

Background End of life refers to the period when people are living with advanced illness that will not stabilize and from which they will not recover and will eventually die. It is not limited to the period immediately before death. Multiple services are required to support people and their families during this time period. The model of care used to deliver these services can affect the quality of the care they receive. Objectives Our objective was to determine whether an optimal team-based model of care exists for service delivery at end of life. In systematically reviewing such models, we considered their core components: team membership, services offered, modes of patient contact, and setting. Data Sources A literature search was performed on October 14, 2013, using Ovid MEDLINE, Ovid MEDLINE In-Process and Other Non-Indexed Citations, Ovid Embase, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and EBM Reviews, for studies published from January 1, 2000, to October 14, 2013. Review Methods Abstracts were reviewed by a single reviewer and full-text articles were obtained that met the inclusion criteria. Studies were included if they evaluated a team model of care compared with usual care in an end-of-life adult population. A team was defined as having at least 2 health care disciplines represented. Studies were limited to English publications. A meta-analysis was completed to obtain pooled effect estimates where data permitted. The GRADE quality of the evidence was evaluated. Results Our literature search located 10 randomized controlled trials which, among them, evaluated the following 6 team-based models of care: hospital, direct contact home, direct contact home, indirect contact comprehensive, indirect contact comprehensive, direct contact comprehensive, direct, and early contact Direct contact is when team members see the patient; indirect contact is when they advise another health care practitioner (e.g., a family doctor) who sees

Training Providers and Patients to Talk about End-of-Life Care

Cancer.gov

Failing to discuss the transition from active cancer treatment to end-of-life care can leave doctors unsure of what a patient truly wants. Failing to receive end-of-life care in line with their values and wishes can cause patients and their families great distress. Researchers have developed innovative, evidence-based programs to help doctors and patients improve their communication skills and grow comfortable with these discussions.

The Evolution of End-of-Life Care: Ethical Implications for Case Management.

PubMed

Fink-Samnick, Ellen

2016-01-01

This article: : Applicable to all health care sectors where case management is practiced. Few topics are more intimate and multifaceted for case managers than engaging with today's culturally diverse patient populations around end-of-life processes. The already prominent focus of this issue has been further elevated by a series of events to receive public attention. These include the Institute of Medicine's 2014 report-Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, rising numbers of patients around the globe requesting to end life on their own terms, and corresponding death with dignity initiatives and legislation.Another vital factor in the end-of-life equation involves how the latest generation of shared decision making influences the management of treatment dialogues among practitioners, patients, as well as insurance companies. Case managers are at the intersection of these complex interactions, working to achieve ethical, as well as legal accountability to the patient, employer, and profession while balancing personal perspectives. Professionals strive to effectively intervene with patients and their support systems facing end-of-life care decisions. It is essential case managers actively consider the intricacies of ethical practice and current contexts including death with dignity legislation, shared decision making, and shifts in regulations and reimbursement for end-of-life care.Case management's ethical envelope will continue to be pushed. To that end amid shifting societal constructs, professionals must have mastery of applicable codes, standards, principles, and rules essential for adherence to ethical practice.

Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment

PubMed Central

Wright, Alexi A.; Zhang, Baohui; Ray, Alaka; Mack, Jennifer W.; Trice, Elizabeth; Balboni, Tracy; Mitchell, Susan L.; Jackson, Vicki A.; Block, Susan D.; Maciejewski, Paul K.; Prigerson, Holly G.

2010-01-01

Context Talking about death can be difficult. Without evidence that end-of-life (EOL) discussions improve patient outcomes, physicians must balance their desire to honor patient autonomy against a concern that EOL discussions may inflict psychological harm. Objective To determine whether EOL discussions with physicians are associated with fewer aggressive interventions. Design, Setting, Participants A United States multi-site, prospective, longitudinal cohort study of advanced cancer patients and their informal caregivers (n=332 dyads), September 2002-February 2008. Patients were followed from enrollment to death a median of 4.4 months later. Bereaved caregivers’ psychiatric illness and quality of life (QoL) was assessed a median 6.5 months later. Main Outcome Measures The primary outcome were aggressive medical care (e.g., ventilation, resuscitation) and hospice in the final week of life. Secondary outcomes included patients’ mental health and caregivers’ bereavement adjustment. Results 123 of 332 (37.0%) patients reported EOL discussions before baseline. EOL discussions were not associated with higher rates of Major Depressive Disorder (8.3% vs. 5.8; AOR 1.33, 95% CI 0.54-3.32), or more “worry” (6.5 vs. 7.0; p=0.19)). After propensity-score weighted adjustment, EOL discussions were associated with lower rates of ventilation (1.6% vs. 11.0%; AOR 0.26, 95% CI 0.08-0.83), resuscitation (0.8% vs. 6.7%; AOR 0.16, 95% CI 0.03-0.80), ICU admission (4.1 vs. 12.4%; AOR 0.35, 95% CI 0.14-0.90), and earlier hospice enrollment (65.6% vs. 44.5%; AOR 1.58, 95% CI 1.04-2.63). In adjusted analyses, more aggressive medical care was associated with worse patient QoL (6.4 vs. 4.6; F=3.60, p=0.01) and higher risk for Major Depressive Disorder in bereaved caregivers (AOR 3.37, 95% CI 1.12-10.13), while longer hospice stays were associated with better patient QoL (5.6 vs. 6.9; F=3.70, p=0.01). Better patient QoL was associated with better caregiver QoL at follow-up (β=0

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

Caring for Older Patients on Peritoneal Dialysis at End of Life.

PubMed

Meeus, Frédérique; Brown, Edwina A

2015-11-01

End of life is the last phase of life, not merely the last few days. For many older patients on peritoneal dialysis (PD), the end-of-life phase commences with the start of dialysis. The principal aim of management of this phase should be optimizing the quality of life of the patient. Evidence suggests that patients on dialysis mostly want involvement in decisions at this stage, but most do not have the opportunity to do so. Management should therefore include discussions with the patient and their family to determine lifestyle goals, treatment wishes, and ceilings of care (including resuscitation and dialysis withdrawal). Care should also include symptom identification and management, psychosocial support, and adaptation of dialysis to the ability and needs of the patient. By doing this, quality of life at end of life is achievable. Copyright © 2015 International Society for Peritoneal Dialysis.

Intensity of Care at the End of Life Among Older Adults in Korea.

PubMed

Kim, Su Hyun; Kang, Sangwook; Song, Mi-Kyung

2018-01-01

To examine the intensity of care at the end of life among older adults in Korea and to identify the individual and institutional factors associated with care intensity. This secondary data analysis included a sample of 6278 decedents aged 65 years or older who were identified from the 2009 to 2010 Korean National Health Insurance Service-National Sample Cohort Claims data. We examined the medical care received by the cohort in the last 30 days of their lives. Overall, 36.5% of the sample received at least 1 intensive care procedure in the last 30 days of their lives; 26.3% of patients experienced intensive care unit admission, with an average stay of 7.45 days, 19.5% received mechanical ventilation, 12.3% received cardiopulmonary resuscitation, and 15.5% had a feeding tube placement. A statistical analysis using a multiple logistic regression model with random effects showed that younger age, higher household income, primary diagnoses of diseases (ischemic heart disease, infectious disease, chronic lung disease, or chronic heart disease), and characteristics of care setting (large hospitals and facilities located in metropolitan areas) were significantly associated with the likelihood of receiving high-intensity care at the end of life. A substantial number of older adults in Korea experienced high-intensity end-of-life care. Both individual and institutional factors were associated with the likelihood of receiving high-intensity care. Gaining an understanding of the intensity of care at the end of life and the impact of the determinants would advance efforts to improve quality of care at the end of life for older adults in Korea.

Better care for the dying. Hawaii healthcare system develops a manual for end-of-life care.

PubMed

Kalua, P M; Tan, S Y; Bacon, J G

1999-01-01

In early 1996, as it became clear that Americans were becoming increasingly concerned about end-of-life care, the leaders of St. Francis Healthcare System (SFHS), Honolulu, convened a meeting at which local people--community and parish representatives as well as healthcare professionals--discussed the matter. The meeting's participants identified 10 issues as essential in end-of-life care: decision making, pain management and comfort care, pastoral and spiritual care, psychosocial care, hospice and home care, cardiopulmonary resuscitation, futility, withholding and withdrawing treatment, artificial nutrition and hydration, physician-assisted suicide and euthanasia. The participants then divided themselves into 10 teams, each of which spent six months studying one of the identified essential issues. In each case, the team reviewed the relevant SFHS policies and procedures and compared them with national standards. The team also interviewed staff members about the policies and procedures, comparing the written versions with actual practices. Each team then wrote a chapter on its assigned issue, after which a core committee wove the chapters into an end-of-life care manual for SFHS. The manual was published in June 1997. The system's leaders currently use the manual to educate staff members in good end-of-life care.

Patient-clinician communication about end-of-life care for Dutch and US patients with COPD.

PubMed

Janssen, D J A; Curtis, J R; Au, D H; Spruit, M A; Downey, L; Schols, J M G A; Wouters, E F M; Engelberg, R A

2011-08-01

Improving patient-clinician communication about end-of-life care is important in order to enhance quality of care for patients with chronic obstructive pulmonary disease (COPD). Our objective was to compare quality of patient-clinician communication about end-of-life care, and endorsement of barriers and facilitators to this communication in the Netherlands and the USA. The present study was an analysis of survey data from 122 Dutch and 391 US outpatients with COPD. We compared quality of patient-clinician communication about end-of-life care (Quality of Communication questionnaire) and barriers and facilitators to communication about end-of-life care (Barriers and Facilitators Questionnaire) between the Netherlands and the USA, controlling for patients' demographic and illness characteristics. Although Dutch patients in this study had worse lung function and disease-specific health status than US patients, Dutch patients reported lower quality of communication about end-of-life care (median score 0.0 (interquartile range 0.0-2.0) versus 1.4 (0.0-3.6); adjusted p<0.005). Clinicians in both countries rarely discussed life-sustaining treatment preferences, prognoses, dying processes or spiritual issues. Quality of communication about end-of-life care needs to improve in the Netherlands and the USA. Future studies to improve this communication should be designed to take into account international differences and patient-specific barriers and facilitators to communication about end-of-life care.

Factors considered in end-of-life care decision making by health care professionals.

PubMed

Foo, Wei Ting; Zheng, Yiliang; Kwee, Ann K; Yang, Grace M; Krishna, Lalit

2013-06-01

To explore the importance of factors influencing the end-of-life care decision making of health care professionals (HCPs) in Singapore. This cross-sectional survey encompassed facets of patient, family, and HCP-related care considerations. In total, 187 questionnaires were distributed to physicians and nurses and had a response rate of 78.6%. The respondents rated patients' wishes (96.6%), their clinical symptoms (93.9%), and patients' beliefs (91.1%) very high. In all, 94.6% of the HCPs would respect a competent patient's wishes over the family's wishes when goals conflict. However, 59.9% of HCPs would abide by the family's wishes when the patient loses capacity even if the patient's previously expressed wishes are known. End-of-life care decision making by HCPs appears largely patient centered, although familial determination still wields significant influence with implications for advance care planning.

[Analysis of end-of-life care for elderly with dementia in group homes managed by different corporations].

PubMed

Konagaya, Yoko

2010-01-01

The number of group homes for elderly people with dementia has been increasing since the introduction of public long-term care insurance in Japan. The aim of this report is to clarify the differences in the end-of-life policy and practices among group homes managed by medical corporations and those run by social welfare corporations. A questionnaire for end-of-life care policy and practices was mailed to 1,535 group homes managed by medical corporations and 2,022 group homes managed by social welfare corporations. The questions related to the general characteristics of group homes, availability of admission to hospital, whether a doctor visits regularly or not, involvement in end-of-life care, experiences of previous end-of-life care, and provisions for anticipated end-of life care. The response rates were 55.2% for medical corporations and 59.6% for public welfare corporations. Most group homes have one care unit. More than 50% of medical corporation-managed and more than 30% of social welfare corporation-managed group homes were involved with end-of-life care. Previous experiences with end-of-life care experienced in both types of group homes were reported to be 38.0% and 30.1%, respectively. The results of end-of-life care were evaluated positively in both types of group home. Group homes managed by medical corporations which also managed hospitals and group homes managed by social welfare corporations with regular visits of doctors showed a high percentage of cooperation with and previous experience of end-of-life care. Cooperation between medical and care staffs in end-of-life care of the elderly with dementia in group homes is important. This report demonstrated that education about end-of-life care to the staffs of group home is necessary.

Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life.

PubMed

Patel, Arpan A; Walling, Anne M; Ricks-Oddie, Joni; May, Folasade P; Saab, Sammy; Wenger, Neil

2017-10-01

There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this

The dying neonate: family-centered end-of-life care.

PubMed

De Lisle-Porter, Martine; Podruchny, Ann Marie

2009-01-01

There is a need in the NICU for an end-of-life care guideline that nurses can follow when working with dying infants and their families. Maintaining intravenous access to relieve the infant's pain, communicating sensitively to the family, and creating precious, everlasting memories are goals that should be part of every dying infant's care. The nurse's ability to partner with the family in caring for the infant is integral to helping the family take the first steps in their grief journey. Evidence-based literature provides NICU nurses with the knowledge that they are the facilitators of end-of-life care for dying infants. New mothers and fathers are not aware of the caring parental tasks they can perform for their dying baby. They look to and depend on their infant's nurses to encourage them. The guideline included here provides nurses with a tool for ensuring that families have the opportunity to create memories that will not only help them with their immediate pain, but also comfort them for a lifetime.

Strengthening Nursing Education To Improve End-of-life Care.

ERIC Educational Resources Information Center

Ferrell, Betty R.; Virani, Rose; Grant, Marcia

1999-01-01

As the members of the health care team who spend the most time with patients who are facing death, nurses are aware of the need for improved end-of-life (EOL) care and have identified resources to achieve that goal by improving education. A survey of 725 nursing faculty and state boards indicates an awareness of the need for improved EOL care and…

Moral distress in end-of-life care in the intensive care unit.

PubMed

St Ledger, Una; Begley, Ann; Reid, Joanne; Prior, Lindsay; McAuley, Danny; Blackwood, Bronagh

2013-08-01

To explore moral distress in relatives doctors and nurses, in end-of-life care decision-making, in the adult intensive care unit. Many deaths in intensive care involve decisions about withholding and withdrawing therapy, potentially triggering moral distress. Moral distress occurs when individuals feel constrained from acting in accordance with moral choice, or act against moral judgement, generating painful, unresolved emotions, and problems that continue long after an event. Prior research has focused mainly on nurses; less is known about doctors' experiences and occurrence and impact on relatives is unknown. A narrative inquiry case study approach, funded by a Northern Ireland Health and Social Care Doctorate Fellowship Award (April 2011). In-depth digitally recorded interviews will be conducted with relatives, doctors, and nurses involved in end-of-life cases comprising: (1) withdrawal of therapy, including circulatory death organ donation; (2) non-escalation of therapy; and (3) brain stem death with a request for organ donation. Relatives will be offered the opportunity to share their experiences on 'Healthtalkonline' by copyrighting audio-visual interviews to the Health Experiences Research Group, Oxford University. Research Ethics Committee approval was obtained (April 2012). This is the first time that moral distress is explored, in a case approach, among relatives, doctors, and nurses intimately involved in end-of-life decisions in intensive care. Dissemination of findings will make a large contribution to international knowledge and understanding in this area and alert healthcare professionals and relatives to an otherwise under-recognized, but potentially detrimental, experience. Findings will inform education, practice, and policy. © 2012 Blackwell Publishing Ltd.

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

PubMed

Churchill, Larry R

2015-04-01

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

End-of-life care beliefs among Hindu physicians in the United States.

PubMed

Ramalingam, Vijaya Sivalingam; Saeed, Fahad; Sinnakirouchenan, Ramapriya; Holley, Jean L; Srinivasan, Sinnakirouchenan

2015-02-01

Several studies from the United States and Europe showed that physicians' religiosity is associated with their approach to end-of-life care beliefs. No such studies have focused exclusively on Hindu physicians practicing in the United States. A 34-item questionnaire was sent to 293 Hindu physicians in the United States. Most participants believed that their religious beliefs do not influence their practice of medicine and do not interfere with withdrawal of life support. The US practice of discussing end-of-life issues with the patient, rather than primarily with the family, seems to have been adopted by Hindu physicians practicing in the United States. It is likely that the ethical, cultural, and patient-centered environment of US health care has influenced the practice of end-of-life care by Hindu physicians in this country. © The Author(s) 2013.

76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-16

... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

Learning About End-of-Life Care in Nursing-A Global Classroom Educational Innovation.

PubMed

Bailey, Cara; Hewison, Alistair; Orr, Shelly; Baernholdt, Marianne

2017-11-01

Teaching nursing students how to provide patient-centered end-of-life care is important and challenging. As traditional face-to-face classroom teaching is increasingly supplanted by digital technology, this provides opportunities for developing new forms of end-of-life care education. The aim of this article is to examine how a global classroom was developed using online technology to enhance nursing students' learning of end-of-life care in England and the United States. The PDSA (Plan-Do-Study-Act) quality improvement approach was used to guide the design and delivery of this curriculum innovation. The global classroom enhanced the educational experience for students. Teaching needs to be inclusive, focused, and engaging; the virtual platform must be stable and support individual learning, and learning needs to be collaborative and authentic. These findings can be used to inform the integration of similar approaches to end-of-life care education in other health care professional preparation programs. [J Nurs Educ. 2017;56(11):688-691.]. Copyright 2017, SLACK Incorporated.

End-of-Life Care in an Acute Care Hospital: Linking Policy and Practice

ERIC Educational Resources Information Center

Sorensen, Ros; Iedema, Rick

2011-01-01

The care of people who die in hospitals is often suboptimal. Involving patients in decisions about their care is seen as one way to improve care outcomes. Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be…

End-of-Life Care for Undocumented Immigrants With Advanced Cancer: Documenting the Undocumented.

PubMed

Jaramillo, Sylvia; Hui, David

2016-04-01

There are approximately 11.1 million undocumented immigrants in the United States, with a majority being Latino. Cancer is now the leading cause of death in Latinos. There is little research guiding providers on how to deliver optimal end-of-life care in this population. We describe a case of an undocumented Latino patient with advanced cancer, and provide a review of the literature on end-of-life care in undocumented immigrants. Our patient encountered many challenges as he navigated through the healthcare system in the last months of life. These included delayed diagnosis, limited social support, financial issues, fear of deportation, and language and cultural barriers, which resulted in significant physical and psychological distress. Within the undocumented patient population, there is often a lack of advance care planning, prognostic understanding, mistrust, religious practices, and cultural beliefs that may affect decision making. Given the growing number of undocumented immigrants in the United States, it is important for clinicians and policy makers to have a better understanding of the issues surrounding end-of-life care for undocumented immigrants, and work together to improve the quality of life and quality of end-of-life care for these disadvantaged individuals. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Advanced Cancer and End-of-Life Preferences: Curative Intent Surgery Versus Noncurative Intent Treatment.

PubMed

Schubart, Jane R; Green, Michael J; Van Scoy, Lauren J; Lehman, Erik; Farace, Elana; Gusani, Niraj J; Levi, Benjamin H

2015-12-01

People with cancer face complex medical decisions, including whether to receive life-sustaining treatments at the end of life. It is not unusual for clinicians to make assumptions about patients' wishes based on whether they had previously chosen to pursue curative treatment. We hypothesized that cancer patients who initially underwent curative intent surgery (CIS) would prefer more aggressive end-of-life treatments compared to patients whose treatment was noncurative intent (non-CIT). This study was a retrospective review of data from a large, randomized controlled trial examining the use of an online decision aid for advance care planning, "Making Your Wishes Known" (MYWK), with patients who had advanced cancer. We reviewed patients' medical records to determine which patients underwent CIS versus non-CIT. In the parent trial, conducted at an academic medical center (2007-2012), 200 patients were enrolled with stage IV malignancy or other poor prognosis cancer. Patients' preferences for aggressive treatment were measured in two ways: using patient-selected General Wishes statements generated by the decision aid and patient-selected wishes for specific treatments under various hypothetical clinical scenarios (Specific Wishes). We evaluated 79 patients. Of these, 48 had undergone initial CIS and 31 had non-CIT. Cancer patients who initially underwent CIS did not prefer more aggressive end-of-life treatments compared to patients whose treatment was non-CIT. Clinicians should avoid assumptions about patients' preferences for life-sustaining treatment based on their prior choices for aggressive treatment.

U.S. Clergy Religious Values and Relationships to End-of-Life Discussions and Care.

PubMed

Balboni, Michael J; Sullivan, Adam; Enzinger, Andrea C; Smith, Patrick T; Mitchell, Christine; Peteet, John R; Tulsky, James A; VanderWeele, Tyler; Balboni, Tracy A

2017-06-01

Although clergy interact with approximately half of U.S. patients facing end-of-life medical decisions, little is known about clergy-congregant interactions or clergy influence on end-of-life decisions. The objective was to conduct a nationally representative survey of clergy beliefs and practices. A mailed survey to a nationally representative sample of clergy completed in March 2015 with 1005 of 1665 responding (60% response rate). The primary predictor variable was clergy religious values about end-of-life medical decisions, which measured belief in miracles, the sanctity of life, trust in divine control, and redemptive suffering. Outcome variables included clergy-congregant end-of-life medical conversations and congregant receipt of hospice and intensive care unit (ICU) care in the final week of life. Most U.S. clergy are Christian (98%) and affirm religious values despite a congregant's terminal diagnosis. Endorsement included God performing a miracle (86%), pursuing treatment because of the sanctity of life (54%), postponement of medical decisions because God is in control (28%), and enduring painful treatment because of redemptive suffering (27%). Life-prolonging religious values in end-of-life medical decisions were associated with fewer clergy-congregant conversations about considering hospice (adjusted odds ratio [AOR], 0.58; 95% CI 0.42-0.80), P < 0.0001), stopping treatment (AOR 0.58, 95% CI 0.41-0.84, P = 0.003), and forgoing future treatment (AOR 0.50, 95% CI 0.36-0.71, P < 0.001) but not associated with congregant receipt of hospice or ICU care. Clergy with lower medical knowledge were less likely to have certain end-of-life conversations. The absence of a clergy-congregant hospice discussion was associated with less hospice (AOR 0.45; 95% CI 0.29-0.66, P < 0.001) and more ICU care (AOR 1.67; 95% CI 1.14-2.50, P < 0.01) in the final week of life. American clergy hold religious values concerning end-of-life medical decisions, which appear to

Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada.

PubMed

Yu, Mo; Guerriere, Denise N; Coyte, Peter C

2015-11-01

In Canada, health system restructuring has led to a greater focus on home-based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end-of-life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end-of-life care associated with two places of death (hospital and home) using a prospective cohort design in a home-based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out-of-pocket, informal care-giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care-giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end-of-life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00 CDN = $1.00 USD). The estimated total societal cost of end-of-life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end-of-life care, resulted in changes in the distribution of

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes.

PubMed

Manheim, Chelsea E; Haverhals, Leah M; Jones, Jacqueline; Levy, Cari R

2016-01-01

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans' family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans' families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans' needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans' end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran's death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.

End-of-life care: Indian perspective

PubMed Central

Sharma, Himanshu; Jagdish, Vankar; Anusha, Prabhakaran; Bharti, Sharma

2013-01-01

According to Hinduism, the main religion of India, the end-of-life (EOL) deals with good and bad death. The WHO definition of palliative care stresses on improving not only the quality of life of patients facing incurable diseases but also their families by providing relief from the pain and suffering that includes the psychosocial and spiritual needs as well. The Indian Society of Palliative Care has been doing a commendable work and appreciable efforts are being done by the Kerala model of delivering the EOL care. The spiritual, ethical issues and ethical challenges raised when the patients are in terminal phase are also reviewed keeping in mind the socio-cultural norms. The Indian Penal Code (IPC) has lacunae, which hamper the physicians from taking proper decision in the EOL care. Some of the sections like IPC 309 are defunct and need to be changed. The Indian Society for Critical Care Medicine has developed a position statement on the patient management of the terminally ill patient in the Intensive Care Unit (ICU) which states that the society should move from the paternalistic model to the share based decision model of the West when deciding the fate of such patients. The literature review on the Indian research on palliative care shows very little emphatic results and the medical under graduates show illiteracy. To strengthen it Medical Council of India has included the palliative care in its curriculum by starting a PG course. Literature review revealed that more research from Indian perspective should be done in this area. This article studies the core issues of developing palliative care in Indian setting keeping in mind the ethical, spiritual and legal issues. PMID:23858271

Achieving Quality Care at the End of Life: A Focus of the End-of-Life Nursing Education Consortium (ELNEC) Curriculum.

ERIC Educational Resources Information Center

Sherman, Deborah Witt; Matzo, Marianne LaPorte; Rogers, Susan; McLaughlin, Maureen; Virani, Rose

2002-01-01

Describes one of nine modules in the End-of-Life Nursing Education Consortium Curriculum, a train-the-trainer course to prepare nurses for palliative care. Discuses teaching strategies to achieve high-quality care and includes a list of print and web resources. (SK)

A palliative approach for heart failure end-of-life care

PubMed Central

Maciver, Jane; Ross, Heather J.

2018-01-01

Purpose of review The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. Recent findings North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program. There is limited evidence to support the effectiveness of the individual elements. However, results from the palliative care in heart failure trial suggest an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL. Summary Integration of a palliative approach to heart failure EOL care helps to ensure patients receive the care that is congruent with their values, wishes and preferences. Specialist palliative care referrals are limited to those who are truly at heart failure EOL. PMID:29135524

Patient-Clinician Communication About End-of-Life Care in Patients With Advanced Chronic Organ Failure During One Year.

PubMed

Houben, Carmen H M; Spruit, Martijn A; Schols, Jos M G A; Wouters, Emiel F M; Janssen, Daisy J A

2015-06-01

Patient-clinician communication is an important prerequisite to delivering high-quality end-of-life care. However, discussions about end-of-life care are uncommon in patients with advanced chronic organ failure. The aim was to examine the quality of end-of-life care communication during one year follow-up of patients with advanced chronic organ failure. In addition, we aimed to explore whether and to what extent quality of communication about end-of-life care changes toward the end of life and whether end-of-life care communication is related to patient-perceived quality of medical care. Clinically stable outpatients (n = 265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess quality of end-of-life care communication (Quality of Communication questionnaire). Two years after baseline, survival status was assessed, and if patients died during the study period, a bereavement interview was done with the closest relative. One year follow-up was completed by 77.7% of the patients. Quality of end-of-life care communication was rated low at baseline and did not change over one year. Quality of end-of-life care communication was comparable for patients who completed two year follow-up and patients who died during the study. The correlation between quality of end-of-life care communication and satisfaction with medical treatment was weak. End-of-life care communication is poor in patients with chronic organ failure and does not change toward the end of life. Future studies should develop an intervention aiming at initiating high-quality end-of-life care communication between patients with advanced chronic organ failure and their clinicians. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Palliative care: between humanization and medicalization at the end of life].

PubMed

Alonso, Juan Pedro

2013-09-01

This paper analyzes the palliative care of terminal patients, examining the tensions between the humanization of care and the progressive medicalization at the end-of-life situation. The research upon which the article is based adopts a qualitative methodological approach derived from interviews with professionals and patients and ethnographic observations in a palliative care unit in the City of Buenos Aires, Argentina. The article describes the configuration of personalized and comprehensive health care based on the core values of more humanized end-of-life care promoted by palliative care supporters. Similarly, the paper analyzes how these practices are assisted by progress in the medicalization process in which the dimension of care is considered less an unprofessional area of medical practice than an area of care in which specific technical skills and know-how are employed. The articles explores how instead of being divergent, the logic of care and medicalization work in a complementary fashion.

End-of-Life Care Interventions: An Economic Analysis.

PubMed

Pham, B; Krahn, M

2014-01-01

The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76-108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191-$385 million in health care costs. Results for the other interventions were uncertain. The cost-effectiveness analysis was

2016 AAHA/IAAHPC End-of-Life Care Guidelines.

PubMed

Bishop, Gail; Cooney, Kathleen; Cox, Shea; Downing, Robin; Mitchener, Kathy; Shanan, Amir; Soares, Nancy; Stevens, Brenda; Wynn, Tammy

End-of-life (EOL) care and decisionmaking embody the critical final stage in a pet's life and are as important and meaningful as the sum of the clinical care provided for all prior life stages. EOL care should focus on maximizing patient comfort and minimizing suffering while providing a collaborative and supportive partnership with the caregiver client. Timely, empathetic, and nonjudgmental communication is the hallmark of effective client support. Veterinarians should not allow an EOL patient to succumb to a natural death without considering the option of euthanasia and ensuring that other measures to alleviate discomfort and distress are in place. Animal hospice care addresses the patient's unique emotional and social needs as well as the physical needs traditionally treated in clinical practice. An EOL treatment plan should consist of client education; evaluating the caregiver's needs and goals for the pet; and a collaborative, personalized, written treatment plan involving the clinical staff and client. Primary care practices should have a dedicated team to implement palliative and hospice care for EOL patients. How the healthcare team responds to a client's grief after the loss of a pet can be a key factor in the client's continued loyalty to the practice. Referral to professional grief-support counseling can be a helpful option in this regard.

Community end-of-life care among Chinese older adults living in nursing homes.

PubMed

Chu, Leung-Wing; So, Jason C; Wong, Lai-Chin; Luk, James K H; Chiu, Patrick K C; Chan, Cherry S Y; Kwan, Fiona S M; Chau, June; Hui, Elsie; Woo, Jean; McGhee, Sarah M

2014-04-01

The aim of the present study was to investigate the preference and willingness-to-pay (WTP) of older Chinese adults for community end-of-life care in a nursing home rather than a hospital. A total of 1540 older Chinese adults from 140 nursing homes were interviewed. Four hypothetical questions were asked to explore their preferences for end-of-life care. Using a discrete choice approach, specific questions explored acceptable trade-offs between three attributes: availability of doctors onsite, attitude of the care staff and additional cost of care per month. Approximately 35% of respondents preferred end-of-life care in the nursing home, whereas 23% of them would consider it in a better nursing home. A good attitude of staff was the most important attribute of the care site. Respondents were willing to pay an extra cost of US$5 (HK$39) per month for more coverage of doctor's time, and US$49 (HK$379) for a better attitude of staff in the nursing home. The marginal WTP for both more coverage of doctor's time and better attitude of staff amounted to US$54 (HK$418). Respondents on government subsidy valued the cost attribute more highly, as expected, validating the hypothesis that those respondents would be less willing to pay an additional cost for end-of-life care. Older Chinese adults living in nursing homes are willing to pay an additional fee for community end-of-life care services in nursing homes. Both the availability of the doctor and attitudes of nursing home staff are important, with the most important attribute being the staff attitudes. Geriatr Gerontol Int 2013; 14: 273-284. © 2013 Japan Geriatrics Society.

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands.

PubMed

Brouwer, Marije; Maeckelberghe, Els; DE Weerd, Willemien; Verhagen, Eduard

2018-07-01

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is

Comfort goal of care and end-of-life outcomes in dementia: A prospective study.

PubMed

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

2015-06-01

Many people with dementia die in a nursing home. A comfort care goal may be beneficial. Little research has examined the relationship between care goals and outcome. To investigate whether family satisfaction with end-of-life care and quality of dying is associated with whether or not dementia patients have a comfort goal shortly after admission. Prospective data collection from 28 long-term care facilities (the Dutch End of Life in Dementia study). We included 148 patients who died after prospective follow-up. Main outcomes were family satisfaction (End-of-Life in Dementia-Satisfaction with Care scale; range: 10-40) and quality of dying (End-of-Life in Dementia-Comfort Assessment in Dying; range: 14-42). We performed generalized estimating equations regression analyses to analyze whether these outcomes are associated with a comfort goal established shortly after admission compared with another or no care goal as reported by the physician. Families of patients were more satisfied with end-of-life care when a comfort goal was established shortly after admission. We found this pattern only for patients who died within 6 months of admission (adjusted b: 4.5; confidence interval: 2.8, 6.3 vs -1.2; confidence interval: -3.0, 0.6 for longer stay). For quality of dying, no such association was found. We found that family satisfaction with care is related to a comfort care goal shortly after admission, but quality of dying did not. Establishing a comfort goal at an early stage may be important to the family. Advance care planning interventions should be studied for their effects on patient and family outcome. © The Author(s) 2015.

End-of-Life Care Education for Psychiatric Residents: Attitudes, Preparedness, and Conceptualizations of Dignity

ERIC Educational Resources Information Center

Tait, Glendon R.; Hodges, Brian D.

2009-01-01

Objective: The authors examined psychiatric residents' attitudes, perceived preparedness, experiences, and needs in end-of-life care education. They also examined how residents conceptualized good end-of-life care and dignity. Methods: The authors conducted an electronic survey of 116 psychiatric residents at the University of Toronto. The survey…

LGBT people's knowledge of and preparedness to discuss end-of-life care planning options.

PubMed

Hughes, Mark; Cartwright, Colleen

2014-09-01

Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients. © 2014 John Wiley & Sons Ltd.

End-of-life care: an agenda for policy improvement.

PubMed

Shugarman, Lisa R; Lorenz, Karl; Lynn, Joanne

2005-02-01

Current arrangements for health care in the United States do not adequately address the needs of a growing population that has serious, eventually fatal chronic illness. New programs and policies are necessary to encourage coordination of care; better match services to the needs of patients; better provide education and incentives; and better support formal and informal caregivers. Models of end-of-life care, such as MediCaring, are described along with a research and policy agenda that focuses on modifying the health care system and building on new innovations.

Hospice or community network? Choices in end-of-life care in Jamaica.

PubMed

Mendoza, Roger Lee

2017-09-01

Now considered a subspecialty of medicine and nursing, palliative care is a critical aspect of healthcare at the end of life. National and international healthcare agencies typically attribute its slow or haphazard growth in developing countries to various resource constraints. However, this study provides evidence of the substantial and widening gap between policy advocacy and patient choices in end-of-life care. It does so by establishing the incentives and risks that underlie decision-making by patients and providers against the relative scarcity of palliative care and hospices in these countries. Jamaica offers an illustrative case. It shares the socioeconomic conditions and isolated provision of hospice and palliative care that remain prevalent in many developing countries. Empirical information was collected from all Jamaican hospices, along with agency and media reports, for comparative institutional analysis. Financial and infrastructural challenges hamper hospice expansion and integration into formal healthcare systems in developing countries. Yet, other equally vital considerations are too often neglected. These include the high transaction costs of decision-making, which account for limited hospice accessibility, affordability, and efficiency, particularly to underserved populations. Risk and payoff calculations by patients and their families as well as hospices and their providers lead to two strategic options in maximizing hospice value and/or minimizing transaction costs in end-of-life care. Policy formulation and advocacy for hospice and palliative care should match aggregate demand. The socio-cultural milieu of care is critical and should be equally considered. Otherwise, providing and expanding free or subsidized palliative care at the end-of-life stage can become cost-inefficient relative to robust family and grassroots community networks.

Conversations in end-of-life care: communication tools for critical care practitioners.

PubMed

Shannon, Sarah E; Long-Sutehall, Tracy; Coombs, Maureen

2011-01-01

Communication skills are the key for quality end-of-life care including in the critical care setting. While learning general, transferable communication skills, such as therapeutic listening, has been common in nursing education, learning specific communication tools, such as breaking bad news, has been the norm for medical education. Critical care nurses may also benefit from learning communication tools that are more specific to end-of-life care. We conducted a 90-min interactive workshop at a national conference for a group of 78 experienced critical care nurses where we presented three communication tools using short didactics. We utilized theatre style and paired role play simulation. The Ask-Tell-Ask, Tell Me More and Situation-Background-Assessment-Recommendation (SBAR) tools were demonstrated or practiced using a case of a family member who feels that treatment is being withdrawn prematurely for the patient. The audience actively participated in debriefing the role play to maximize learning. The final communication tool, SBAR, was practiced using an approach of pairing with another member of the audience. At the end of the session, a brief evaluation was completed by 59 nurses (80%) of the audience. These communication tools offer nurses new strategies for approaching potentially difficult and emotionally charged conversations. A case example illustrated strategies for applying these skills to clinical situations. The three tools assist critical care nurses to move beyond compassionate listening to knowing what to say. Ask-Tell-Ask reminds nurses to carefully assess concerns before imparting information. Tell Me More provides a tool for encouraging dialogue in challenging situations. Finally, SBAR can assist nurses to distill complex and often long conversations into concise and informative reports for colleagues. © 2011 The Authors. Nursing in Critical Care © 2011 British Association of Critical Care Nurses.

Providing high-quality care at the end of life: the role of education and guidance.

PubMed

Dobson, Jill

2017-11-09

Palliative care in the UK has been ranked as the best in the world. So where did palliative care go so wrong that a 168-page document is required to inform staff how to care for dying patients if it has been going so well for so long? Those nearing the end of their life deserve to be given optimum care, attention, compassion and consideration, but this is not always the case. The Liverpool Care Pathway was a tool originally devised to help health professionals provide high-quality end-of-life care to people in the final phase of life. This tool, when used in the correct way, could provide the 'gold standard' of end-of-life care for patients. However, a national review found that rather than a tick-box exercise, care of the dying should be centred around individualised care planning for the dying patient, as highlighted in the publication of the guidance: One Chance to Get It Right. Care of the dying is a complex skill that requires nurses to provide some of the most challenging care, and for which many nurses have received little or no training. The implementation of this guidance into practice will require thoughtful change management, abandoning an old way of working in order to ensure excellence and high-quality care for patients nearing the end of life.

A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

PubMed

Davies, Nathan; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Lamahewa, Kethakie; Iliffe, Steve

2016-08-02

The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting

End-of-life conversations and care: an asset-based model for community engagement.

PubMed

Matthiesen, Mary; Froggatt, Katherine; Owen, Elaine; Ashton, John R

2014-09-01

Public awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader educational principles, but little is known about how to undertake such initiatives in a way that equally engages both the health and social care sector and the local communities. An asset-based community engagement approach has been developed that facilitates community-led awareness initiatives concerning end-of-life conversations and care by identifying and connecting existing skills and expertise. (1) To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care; and (2) to identify key community-identified priorities for sustainable community engagement processes. An asset-based model of community engagement specific to end-of-life issues using a four-step process is described (getting started, coming together, action planning and implementation). The use of this approach, in two regional community engagement programmes, based across rural and urban communities in the northwest of England, is described. The assets identified in the facilitated community engagement process encompassed people's talents and skills, community groups and networks, government and non-government agencies, physical and economic assets and community values and stories. Five priority areas were addressed to ensure active community engagement work: information, outreach, education, leadership and sustainability. A facilitated, asset-based approach of community engagement for end-of-life conversations and care can catalyse community-led awareness initiatives. This occurs through the involvement of community and local health and social care organisations as co-creators of this change across multiple sectors in a sustainable way. This approach

Informal Care and the Division of End-of-Life Transfers

ERIC Educational Resources Information Center

Brown, Meta

2006-01-01

Unmarried parents in the AHEAD study derive the majority of their long-term care hours from their children, and child caregivers are generally unpaid. This paper examines the extent to which the division of end-of-life transfers compensates caregiving children. In a model of siblings' altruistic contribution of care to a shared parent, the…

Evaluation of the Dignity Care Pathway for community nurses caring for people at the end of life.

PubMed

Johnston, Bridget; Östlund, Ulrika; Brown, Hilary

2012-10-01

People nearing the end of life fear loss of dignity, and a central tenet of palliative care is to help people die with dignity. The Dignity Care Pathway (DCP) is an intervention based on the Chochinov theoretical model of dignity care. It has four sections: a manual, a Patient Dignity Inventory, reflective questions, and care actions. The feasibility and acceptability of the DCP were evaluated using a qualitative design with a purposive sample of community nurses. Data was collected from April to October 2010 using in-depth interviews, reflective diaries, and case studies and then analysed using framework analysis. The DCP was acceptable to the community nurses, helped them identify when patients were at the end of life, identified patients' key concerns, and aided nurses in providing holistic end-of-life care. It requires the nurse to have excellent communication skills. Some of the nurses found it hard to initiate a conversation on dignity-conserving care. The DCP helps nurses to deliver individualised care and psychological care, which has previously been identified as a difficult area for community nurses. All of the nurses wished to continue to use the DCP and would recommend it to others.

Palliative and end of life care for people with dementia: lessons for clinical commissioners.

PubMed

Raymond, Mareeni; Warner, Alex; Davies, Nathan; Nicholas, Nirusha; Manthorpe, Jill; Iliffe, Steve

2014-10-01

To synthesize information about management of end of life care in people with dementia using review papers. There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life. A search of electronic databases of English language papers published in peer-reviewed journals, 2000-2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care. Our critical synthesis generated five main themes from this review of the reviews: (1) carers' (family caregivers') experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

Exploring end-of-life care for South Asian kidney patients: interviewer reflections.

PubMed

Wilkinson, Emma; Waqar, Muhammad; Gill, Balbir; Hoque, Pina; Jetha, Champa; Bola, Kulwinder Kaur; Mahmood, Riffat; Mahmood, Sultan; Saujani, Rita; Randhawa, Gurch

2017-03-16

The reduction of inequalities in access to quality care has been a central tenet of UK health policy. Ethnic minorities may experience additional inequalities because of language and other cultural barriers. This article reports interviewer reflections of conducting interviews with South Asian kidney patients about their experiences of end-of-life care. It explores themes which emerged from the analysis of a focus group held with eight bilingual research interviewers. The relevance of these themes to understanding inequalities and access to end-of-life care is discussed; together with the potential for the research process to contribute to service improvement.

End-of-Life Care Interventions: An Economic Analysis

PubMed Central

Pham, B; Krahn, M

2014-01-01

Background The annual cost of providing care for patients in their last year of life is estimated to account for approximately 9% of the Ontario health care budget. Access to integrated, comprehensive support and pain/symptom management appears to be inadequate and inequitable. Objective To evaluate the cost-effectiveness of end-of-life (EoL) care interventions included in the EoL care mega-analysis. Data Sources Multiple sources were used, including systematic reviews, linked health administration databases, survey data, planning documents, expert input, and additional literature searches. Review Methods We conducted a literature review of cost-effectiveness studies to inform the primary economic analysis. We conducted the primary economic analysis and budget impact analysis for an Ontario cohort of decedents and their families and included interventions pertaining to team-based models of care, patient care planning discussions, educational interventions for patients and caregivers, and supportive interventions for informal caregivers. The time horizon was the last year of life. Costs were in 2013 Canadian dollars. Effectiveness measures included days at home, percentage dying at home, and quality-adjusted life-days. We developed a Markov model; model inputs were obtained from a cohort of Ontario decedents assembled from Institute for Clinical Evaluative Sciences databases and published literature. Results In-home palliative team care was cost-effective; it increased the chance of dying at home by 10%, increased the average number of days at home (6 days) and quality-adjusted life-days (0.5 days), and it reduced costs by approximately $4,400 per patient. Expanding in-home palliative team care to those currently not receiving such services (approximately 45,000 per year, at an annual cost of $76–108 million) is likely to improve quality of life, reduce the use of acute care resources, and save $191–$385 million in health care costs. Results for the other

[End-of-Life Care in Intensive Care Units: Nursing strategies of family involvement at the end of life].

PubMed

Cyrol, Katharina; Fröhlich, Martin R; Piatti, Francesca; Imhof, Lorenz

2018-06-01

Background: Family members of people dying in the intensive care unit (ICU) are exposed to many stress factors and they often do not experience involvement in End-of-Life (EoL) situations. For example, they criticize a low degree of participation in patients care, delayed or incomplete information and lack of privacy. Even nursing staff is facing various obstacles in EoL situations in ICUs. Aim: This study investigates strategies used by ICU nursing staff in German-speaking Switzerland to increase family members participation in situations at the end of life. Method: Data was collected by conducting 12 semi-structured interviews using an approach based on Grounded Theory. A model was developed to explain nursing strategies for family involvement in EoL situations in the ICU. Conclusions: Nurses provide personal space and tranquillity for family members and allow them to be present at any time. Against this background, they support family members and enable them to say goodbye consciously to a loved one. Subsequent work should examine the effectiveness of the strategies described, particularly in terms of stress reactions displayed by family members in the aftermath of EoL situations. In practice, family members should be provided space for privacy. The entire healthcare team is recommended to identify and pursue common values and objectives. Moreover, intradisciplinary exchange and mentoring need to be encouraged. In order to prepare future nursing staff for EoL situations in the ICU, recognizing and promoting their educational skills is mandatory.

Challenges in Providing End-of-Life Care for People with Intellectual Disability: Health Services Access

ERIC Educational Resources Information Center

Wark, Stuart; Hussain, Rafat; Müller, Arne; Ryan, Peta; Parmenter, Trevor

2017-01-01

Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods: Focus group…

"End-of-Life Care? I'm not Going to Worry About That Yet." Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients.

PubMed

Ladin, Keren; Buttafarro, Katie; Hahn, Emily; Koch-Weser, Susan; Weiner, Daniel E

2018-03-19

Between 2000 and 2012, the incident dialysis population in the United States increased by nearly 60%, most sharply among adults 75 years and older. End-of-life (EOL) conversations among dialysis patients are associated with better patient-centered outcomes and lower use of aggressive interventions in the last month of life. This study examined how health literacy may affect engagement, comprehension, and satisfaction with EOL conversations among elderly dialysis patients. Qualitative/descriptive study with semi-structured interviews about health literacy, EOL conversations, and goals of care with 31 elderly dialysis patients at 2 centers in Boston. Themes were interpreted in the context of Nutbeam's health literacy framework. Despite high mortality risk in this population, only 13% of patients had discussed EOL preferences with physicians, half had discussed EOL with their social network, and 25% of participants explicitly stated that they had never considered EOL preferences. Less than 30% of participants could correctly define terminology commonly used in EOL conversations. Analyses yielded 5 themes: (1) Misunderstanding EOL terminology; (2) Nephrologists reluctant to discuss EOL; (3) Patients conforming to socially constructed roles; (4) Discordant expectations and dialysis experiences; and (5) Reconciling EOL values and future care. Patients had limited understanding of EOL terminology, lacked of opportunities for meaningful EOL discussion with providers and family, resulting in uncertainty about future care. Limited health literacy presents a substantial barrier to communication and could lead to older adults committing to an intensive pattern of care without adequate information. Clinicians should consider health literacy when discussing dialysis initiation.

Public, patient and carers' views on palliative and end-of-life care in India.

PubMed

Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

2018-06-01

To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may

End-of-life care of oncology inpatients: Are we getting it right?

PubMed

Batten, Monique; Nguyen, Bella; Burke, Brandon; Harryanto, Hilman; Mitchell, Imogen; Davis, Alison

2018-06-13

To examine the current patterns of end-of-life care of medical oncology patients dying in an Australian tertiary acute hospital setting in order to determine potential areas for improvement. A retrospective observational study was undertaken of 295 consecutive adult medical oncology inpatients dying between 2010 and 2015. Charts were reviewed for evidence of (1) resuscitation plans, (2) acute interventions in the 48-h period prior to death, (3) palliative care involvement and (4) recognition of the dying patient and comfort care plans. At the time of death, 98% of patients had a resuscitation plan, 71% of which were completed by the medical oncology team. Fifty-nine percent of medical emergency team reviews occurred in patients without a documented resuscitation plan. Within 48 h of death, active interventions were still being given to 64% of patients in the total patient population. Comfort care plans were documented in 86% of patients; however, 62% of these were only documented within 48 h of death and 20% of patients with a documented comfort care plan still received noncomfort measures. There was a high level of documented resuscitation plans, comfort care plans and recognition of dying. However, active interventions were common within 48 h of death, and comfort care plans and recognition of dying often occurred late. These data indicate a gap between documenting a resuscitation plan and providing timely and appropriate end-of-life care. Understanding the gaps in delivering appropriate care provides an opportunity for improving end-of-life care. © 2018 John Wiley & Sons Australia, Ltd.

A Randomized Trial to Improve Communication About End-of-Life Care Among Patients With COPD

PubMed Central

Udris, Edmunds M.; Engelberg, Ruth A.; Diehr, Paula H.; Bryson, Christopher L.; Reinke, Lynn F.; Curtis, J. Randall

2012-01-01

Objective: Patients with COPD consistently express a desire to discuss end-of-life care with clinicians, but these discussions rarely occur. We assessed whether an intervention using patient-specific feedback about preferences for discussing end-of-life care would improve the occurrence and quality of communication between patients with COPD and their clinicians. Methods: We performed a cluster-randomized trial of clinicians and patients from the outpatient clinics at the Veterans Affairs Puget Sound Health Care System. Using self-reported questionnaires, we assessed patients’ preferences for communication, life-sustaining therapy, and experiences at the end of life. The intervention clinicians and patients received a one-page patient-specific feedback form, based on questionnaire responses, to stimulate conversations. The control group completed questionnaires but did not receive feedback. Patient-reported occurrence and quality of end-of-life communication (QOC) were assessed within 2 weeks of a targeted visit. Intention-to-treat regression analyses were performed with generalized estimating equations to account for clustering of patients within clinicians. Results: Ninety-two clinicians contributed 376 patients. Patients in the intervention arm reported nearly a threefold higher rate of discussions about end-of-life care (unadjusted, 30% vs 11%; P < .001). Baseline end-of-life communication was poor (intervention group QOC score, 23.3; 95% CI, 19.9-26.8; control QOC score, 19.2; 95% CI, 15.9-22.4). Patients in the intervention arm reported higher-quality end-of-life communication that was statistically significant, although the overall improvement was small (Cohen effect size, 0.21). Conclusions: A one-page patient-specific feedback form about preferences for end-of-life care and communication improved the occurrence and quality of communication from patients’ perspectives. Trial registry: ClinicalTrials.gov; No.: NCT00106080; URL: www

End of life care preferences among people of advanced age: LiLACS NZ.

PubMed

Gott, Merryn; Frey, Rosemary; Wiles, Janine; Rolleston, Anna; Teh, Ruth; Moeke-Maxwell, Tess; Kerse, Ngaire

2017-12-19

Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori. Data on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used. The top priority for both Māori and non-Māori participants at end of life was 'not being a burden to my family'. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants. That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.

Evaluating strategies for changing acute care nurses' perceptions on end-of-life care.

PubMed

Kruse, Barbara G; Melhado, Lolita W; Convertine, Linda; Stecher, Jo

2008-01-01

Providing quality care to the dying has become a primary concern in the United States. Eighty percent of deaths still occur in the hospital even though nurses report they do not think that good deaths are routinely possible within a hospital setting due to lack of appropriate education on end-of-life care. The aim of this pilot study was to test the best method for changing acute nurse's perceptions about end-of-life care. A 3-group experimental design tested the efficacy of a nurse-led hospice collaborative. Hypotheses were: (1) nurses who receive classroom instruction will have greater change in perceptions than the control group and (2) nurses who receive a combination of classroom and hospice experiences will demonstrate greater changes than the classroom or control group. No significant differences were found among the 3 groups. However, the intervention group showed increased guilt about not having enough time to spend with the dying.

[Therapeutic Aggressiveness and Liquid Oncology].

PubMed

Barón Duarte, F J; Rodríguez Calvo, M S; Amor Pan, J R

2017-01-01

Aggressiveness criteria proposed in the scientific literature a decade ago provide a quality judgment and are a reference in the care of patients with advanced cancer, but their use is not generalized in the evaluation of Oncology Services. In this paper we analyze the therapeutic aggressiveness, according to standard criteria, in 1.001 patients with advanced cancer who died in our Institution between 2010 and 2013. The results seem to show that aggressiveness at the end of life is present more frequently than experts recommend. About 25% of patients fulfill at least one criterion of aggressiveness. This result could be explained by a liquid Oncology which does not prioritize the patient as a moral subject in the clinical appointment. Medical care is oriented to necessities and must be articulated in a model focused on dignity and communication. Its implementation through Advanced Care Planning, consideration of patient's values and preferences, and Limitation of therapeutic effort are ways to reduce aggressiveness and improve clinical practice at the end of life. We need to encourage synergic and proactive attitudes, adding the best of cancer research with the best clinical care for the benefit of human being, moral subject and main goal of Medicine.

Racial, cultural, and ethnic factors influencing end-of-life care.

PubMed

Crawley, LaVera M

2005-01-01

Past efforts in the palliative and end-of-life care field have been laudably directed at increasing the cultural competence of providers and institutions and improving outreach to multicultural communities. Today, however, we face new challenges with regard to racial, cultural, and ethnic factors at the end of life. We now have documented evidence of disparities in almost every area of health care. In addition, breakthroughs in genomics research, including "race-based therapeutics," have redefined the meaning of our human differences. These trends, unfolding in an increasingly polarized post-9/11 world, greatly challenge our understanding of concepts of race, culture, and ethnicity. By definition, when considering these concepts, our focus shifts from the individual to that of group membership. In turn, this suggests using a population-based or epidemiological approach, which at once reveals inequalities and inequities in mortality patterns across diverse groups. Understanding and serving the needs of specific populations requires us to apply a framework of equity and to consider strategies to eliminate disparities. These include identifying sources of bias and discrimination in health care; enhancing the collection of racial, ethnic, and other demographic data; and increasing the representation of a range of diverse population groups in well designed qualitative and quantitative research. Using an epidemiological framework does not suggest, however, that we lose sight of dying individuals and their families. At the end of life, an individualized approach to care with a focus on quality is paramount for any patient, regardless of racial, ethnic, or cultural background.

Default Options In Advance Directives Influence How Patients Set Goals For End-Of-Life Care

PubMed Central

Halpern, Scott D.; Loewenstein, George; Volpp, Kevin G.; Cooney, Elizabeth; Vranas, Kelly; Quill, Caroline M.; Mckenzie, Mary S.; Harhay, Michael O.; Gabler, Nicole B.; Silva, Tatiana; Arnold, Robert; Angus, Derek C.; Bryce, Cindy

2015-01-01

Although decisions regarding end-of-life care are personal and important, they may be influenced by the ways in which options are presented. To test this hypothesis, we randomly assigned 132 seriously ill patients to complete one of three types of advance directives. Two types had end-of-life care options already checked—a default choice—but one of these favored comfort-oriented care, and the other, life-extending care. The third type was a standard advance directive with no options checked. We found that most patients preferred comfort-oriented care, but the defaults influenced those choices. For example, 77 percent of patients in the comfort-oriented group retained that choice, while 43 percent of those in the life-extending group rejected the default choice and selected comfort-oriented care instead. Among the standard advance directive group, 61 percent of patients selected comfort-oriented care. Our findings suggest that patients may not hold deep-seated preferences regarding end-of-life care. The findings provide motivation for future research examining whether using default options in advance directives may improve important outcomes, including patients’ receipt of wanted and unwanted services, resource use, survival, and quality of life. PMID:23381535

Hospice family members’ perceptions and experiences with end-of-life care in the nursing home

PubMed Central

Washington, Karla; Kruse, Robin L.; Albright, David L; Lewis, Alexandria; Demiris, George

2014-01-01

Objective Despite the fact that more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had two research questions; 1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared to family members of community dwelling hospice patients? 2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family member of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n=176) with family members of community dwelling hospice patients (n=267). The family members of nursing home residents reported higher quality of life however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for

Improved quality of life at end of life related to home-based palliative care in children with cancer.

PubMed

Friedrichsdorf, Stefan J; Postier, Andrea; Dreyfus, Jill; Osenga, Kaci; Sencer, Susan; Wolfe, Joanne

2015-02-01

Nearly 2000 children die due to a malignancy in the United States annually. Emerging data suggest that home is the desired location of care for children with cancer at end of life. However, one obstacle to enrollment in a pediatric palliative care (PPC) home care program may be fear that distressing symptoms at end of life cannot be adequately managed outside the hospital. To compare the symptom distress and quality-of-life experience for children who received concurrent end-of-life care from a PPC home care program (PPC/Oncology) with that of those who died without exposure to the PPC program (Oncology). We conducted a retrospective survey study of a cohort of bereaved parents of children who died of cancer between 2002 and 2008 at a U.S. tertiary pediatric institution. Sixty bereaved parents were surveyed (50% PPC/Oncology). Prevalence of constipation and high distress from fatigue were more common in the PPC/Oncology group; other distressing symptoms were similar between groups, showing room for improvement. Children who received PPC/Oncology were significantly more likely to have fun (70% versus 45%), to experience events that added meaning to life (89% versus 63%), and to die at home (93% versus 20%). This is the first North American study to assess outcomes among children with cancer who received concurrent oncology and palliative home care compared with those who received oncology care alone. Symptom distress experiences were similar in groups. However, children enrolled in a PPC home care program appear to have improved quality of life and are more likely to die at home.

Networking to improve end of life care.

PubMed

McGivern, Gerry

2009-01-01

Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a 'network' as a formal entity and the more informal process of 'networking'. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and 'distributed leadership' facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS.

Quality Of End-Of-Life Care Is Higher In The VA Compared To Care Paid For By Traditional Medicare.

PubMed

Gidwani-Marszowski, Risha; Needleman, Jack; Mor, Vincent; Faricy-Anderson, Katherine; Boothroyd, Derek B; Hsin, Gary; Wagner, Todd H; Lorenz, Karl A; Patel, Manali I; Joyce, Vilija R; Murrell, Samantha S; Ramchandran, Kavitha; Asch, Steven M

2018-01-01

Congressional and Veterans Affairs (VA) leaders have recommended the VA become more of a purchaser than a provider of health care. Fee-for-service Medicare provides an example of how purchased care differs from the VA's directly provided care. Using established indicators of overly intensive end-of-life care, we compared the quality of care provided through the two systems to veterans dying of cancer in fiscal years 2010-14. The Medicare-reliant veterans were significantly more likely to receive high-intensity care, in the form of chemotherapy, hospital stays, admission to the intensive care unit, more days spent in the hospital, and death in the hospital. However, they were significantly less likely than VA-reliant patients to have multiple emergency department visits. Higher-intensity end-of-life care may be driven by financial incentives present in fee-for-service Medicare but not in the VA's integrated system. To avoid putting VA-reliant veterans at risk of receiving lower-quality care, VA care-purchasing programs should develop coordination and quality monitoring programs to guard against overly intensive end-of-life care.

Self-care and end of life care--patients' and carers' experience a qualitative study utilising serial triangulated interviews.

PubMed

Johnston, Bridget Margaret; Milligan, Stuart; Foster, Claire; Kearney, Nora

2012-08-01

This study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care? This paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7. Maintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants. Self-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

PubMed

Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

2017-02-02

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

Blended e-learning and end of life care in nursing homes: a small-scale mixed-methods case study

PubMed Central

2014-01-01

Background A ‘blended’ (e-learning and facilitated workshops) training course for Group C staff (i.e. staff with relatively infrequent contact with end of life care) has been delivered across several English counties with the aim of improving end of life care in nursing and residential care homes. This paper evaluates the impact of the course on participants’ understandings of and confidence in delivering end of life care in one nursing home, while also considering barriers to change in practice. Methods A mixed-methods case study approach, incorporating pre- and post-course questionnaires (SHA East of England End of Life Care Education Programme ‘ABC’ Project Work Force C or Non Nurse Workforce B Pre and Post Course Questionnaire; E-Learning in End of Life Care Study Pre and Post Course Questionnaire), documentary analysis, semi-structured interviews, and observation of course workshops. Participants were 20 members of staff at a nursing home in a city in the East of England, including 14 Health Care Assistants (carers) and 6 others (administrative, activities, hosting, and catering staff). The questionnaires and interviews assessed understandings of and confidence towards end of life care delivery. Results Improvements in participants’ confidence in delivering end of life care were observed, particularly in the core competency areas of symptom management, communication, and advance care planning. A shift towards more detailed and more holistic understandings of end of life care was in evidence; some participants also championed end of life care in the home as a result of the course. Several barriers to changes in practice were encountered, including uneven participation, the absence of mechanisms for disseminating new insights and knowledge within the home, and a widespread perception that nurses’ professional dominance in the home made sustainable change difficult to enact. Conclusions While blended e-learning courses have the potential to generate

Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study.

PubMed

Sprung, Charles L; Truog, Robert D; Curtis, J Randall; Joynt, Gavin M; Baras, Mario; Michalsen, Andrej; Briegel, Josef; Kesecioglu, Jozef; Efferen, Linda; De Robertis, Edoardo; Bulpa, Pierre; Metnitz, Philipp; Patil, Namrata; Hawryluck, Laura; Manthous, Constantine; Moreno, Rui; Leonard, Sara; Hill, Nicholas S; Wennberg, Elisabet; McDermid, Robert C; Mikstacki, Adam; Mularski, Richard A; Hartog, Christiane S; Avidan, Alexander

2014-10-15

Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as >80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had >90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.

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.

End of life care skills are essential for all students.

PubMed

Stapleton, Vanessa; Holland, Dan

2009-09-09

Further to the art&science article, 'An educational programme for end of life care in an acute setting' (August 12), I agree that modules on communication and bereavement are needed at all stages of nurse training.

General Practitioners' Attitudes towards Essential Competencies in End-of-Life Care: A Cross-Sectional Survey.

PubMed

Giezendanner, Stéphanie; Jung, Corinna; Banderet, Hans-Ruedi; Otte, Ina Carola; Gudat, Heike; Haller, Dagmar M; Elger, Bernice S; Zemp, Elisabeth; Bally, Klaus

2017-01-01

Identifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. To determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training. GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in

Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care.

PubMed

Dunning, Trisha; Duggan, Nicole; Savage, Sally; Martin, Peter

2013-03-01

Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. © 2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.

Differences in attitudes to end-of-life care among patients, relatives and healthcare professionals

PubMed Central

Ang, Guat Cheng; Zhang, Di; Lim, Kim Hwa Jim

2016-01-01

INTRODUCTION This study explored and compared the differences in attitudes toward end-of-life care among patients, relatives and healthcare professionals, including doctors and nurses. METHODS We performed a descriptive study on a cross-section of the population of a tertiary hospital in Singapore. Data was collected using a questionnaire survey involving 50 participants from each of the four groups of patients, relatives, doctors and nurses. RESULTS Family members were the most commonly nominated surrogate decision-makers by the patient group (76%) and the majority of the relative group (74%) felt comfortable deciding on end-of-life care for their loved ones. However, the patient and relative groups differed significantly in their preferences on end-of-life care options, including cardiopulmonary resuscitation (CPR) (p = 0.001), intubation (p = 0.003), nasogastric tube feeding (p < 0.001) and the use of antibiotics (p = 0.023). Doctors, nurses and relatives demonstrated differences in preference between end-of-life care for themselves and for their loved ones, especially with regard to the use of nasogastric tube feeding. There was also a difference between patients and doctors in their decisions on CPR (p < 0.001) and intubation (p = 0.008). CONCLUSION This study demonstrated the importance of early planning for end-of-life care. This must be initiated proactively by healthcare professionals to engage patients in a culturally sensitive manner to discuss their preferences, in order to facilitate open communication between the patient and family. PMID:26831313

Enhance End-of-Life Care

MedlinePlus

... care provided to a dying patient. It includes palliative care (easing symptoms, such as pain) for those faced ... live. Ideally, all health care planning should include palliative care at the time of diagnosis of any life- ...

Mediating Systems of Care: Emergency Calls to Long-Term Care Facilities at Life's End.

PubMed

Waldrop, Deborah P; McGinley, Jacqueline M; Clemency, Brian

2018-04-09

Nursing home (NH) residents account for over 2.2 million emergency department visits yearly; the majority are cared for and transported by prehospital providers (emergency medical technicians and paramedics). The purpose of this study was to investigate prehospital providers' perceptions of emergency calls at life's end. This article focuses on perceptions of end-of-life calls in long-term care (LTC). This pilot study employed a descriptive cross-sectional design. Concepts from the symbolic interaction theory guided the exploration of perceptions and interpretations of emergency calls in LTC facilities. A purposeful sample of prehospital providers was developed from one agency in a small northeastern U.S. city. Semistructured interviews were conducted with 43 prehospital providers to explore their perceptions of factors that trigger emergency end-of-life calls in LTC facilities. Qualitative data analysis involved iterative coding in an inductive process that included open, systematic, focused, and axial coding. Interview themes illustrated the contributing factors as follows: care crises; dying-related turmoil; staffing ratios; and organizational protocols. Distress was crosscutting and present in all four themes. The findings illuminate how prehospital providers become mediators between NHs and emergency departments by managing tension, conflict, and challenges in patient care between these systems and suggest the importance of further exploration of interactions between LTC staff, prehospital providers, and emergency departments. Enhanced communication between LTC facilities and prehospital providers is important to address potentially inappropriate calls and transport requests and to identify means for collaboration in the care of sick frail residents.

Do palliative care interventions reduce emergency department visits among patients with cancer at the end of life? A systematic review.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Mayer, Deborah K; Jackson, George L; Biddle, Andrea K

2014-12-01

Frequent emergency department (ED) visits are an indicator of poor quality of cancer care. Coordination of care through the use of palliative care teams may limit aggressive care and improve outcomes for patients with cancer at the end of life. To systematically review the literature to determine whether palliative care interventions implemented in the hospital, home, or outpatient clinic are more effective than usual care in reducing ED visits among patients with cancer at the end of life. PubMed, EMBASE, and CINAHL databases were searched from database inception to May 7, 2014. Only randomized/non-randomized controlled trials (RCTs) and observational studies examining the effect of palliative care interventions on ED visits among adult patients with cancer with advanced disease were considered. Data were abstracted from the articles that met all the inclusion criteria. A second reviewer independently abstracted data from 2 articles and discrepancies were resolved. From 464 abstracts, 2 RCTs, 10 observational studies, and 1 non-RCT/quasi-experimental study were included. Overall there is limited evidence to support the use of palliative care interventions to reduce ED visits, although studies examining effect of hospice care and those conducted outside of the United States reported a statistically significant reduction in ED visits. Evidence regarding whether palliative care interventions implemented in the hospital, home or outpatient clinic are more effective than usual care at reducing ED visits is not strongly substantiated based on the literature reviewed. Improvements in the quality of reporting for studies examining the effect of palliative care interventions on ED use are needed.

A practice model for rural district nursing success in end-of-life advocacy care.

PubMed

Reed, Frances M; Fitzgerald, Les; Bish, Melanie R

2017-08-24

The development of a practice model for rural district nursing successful end-of-life advocacy care. Resources to help people live well in the end stages of life in rural areas can be limited and difficult to access. District nurse advocacy may promote end-of-life choice for people living at home in rural Australia. The lack of evidence available internationally to inform practice in this context was addressed by exploratory study. A pragmatic mixed method study approved by the University Faculty Ethics Committee and conducted from March 2014 to August 2015 was used to explore the successful end-of-life advocacy of 98 rural Australian district nurses. The findings and results were integrated then compared with theory in this article to develop concepts for a practice model. The model illustrates rural district nurse advocacy success based on respect for the rights and values of people. Advocacy action is motivated by the emotional responses of nurses to the end-of-life vulnerability people experience. The combination of willing investment in relationships, knowing the rural people and resources, and feeling supported, together enables district nurses to develop therapeutic emotional intelligence. This skill promotes moral agency in reflection and advocacy action to overcome emotional and ethical care challenges of access and choice using holistic assessment, communication, organisation of resources and empowering support for the self-determination of person-centred end-of-life goals. Recommendations are proposed from the theoretical concepts in the model. Testing the model in practice is recommended to gain the perceptions of a broader range of rural people both giving and receiving end-of-life-care. A model developed by gathering and comparing district nursing experiences and understanding using mixed methods and existing theory offers evidence for practice of a philosophy of successful person-centred advocacy care in a field of nursing that lacks specific

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

PubMed

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Patterns of End-of-Life Care in Children with Advanced Solid Tumor Malignancies Enrolled on a Palliative Care Service

PubMed Central

Vern-Gross, Tamara Z.; Lam, Catherine G.; Graff, Zachary; Singhal, Sara; Levine, Deena R.; Gibson, Deborah; Coan, April; Anghelescu, Doralina L.; Yuan, Ying; Baker, Justin N.

2015-01-01

Context Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life and end-of-life care needs. Objectives We evaluated outcomes and symptoms in children with solid tumors, and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care service. Methods We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children’s Research Hospital, before and after implementation of the institutional Quality of Life/Palliative Care (QoL/PC) Service in January 2007. Patients who died between July 2001- February 2005 (historical cohort; n=134) were compared to those who died between January 2007- January 2012 (QoL/PC cohort; n=57). Results Median time to first QoL/PC consultation was 17.2 months (range, 9–33 months). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms; 94% required intervention for ≥ 3 symptoms; 76% received intervention for ≥ 5 symptoms. Eighty-three percent achieved their preferred place of death. Compared to the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median, 12 vs. 3; P<0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median, 195 vs. 2 days; P<0.001), and greater hospice enrollment (71% vs. 46%, P=0.002). Conclusion Although children with solid tumor malignancies may have significant symptom burden towards end of life, positive changes were documented in communication and in places of care and death following implementation of a pediatric palliative care service. PMID:25891664

Discussing Death, Dying, and End-of-Life Goals of Care: A Communication Skills Training Module for Oncology Nurses.

PubMed

Coyle, Nessa; Manna, Ruth; Shen, Megan; Banerjee, Smita C; Penn, Stacey; Pehrson, Cassandra; Krueger, Carol A; Maloney, Erin K; Zaider, Talia; Bylund, Carma L

2015-12-01

Effective communication, particularly at the end of life, is an essential skill for oncology nurses, but few receive formal training in this area. The aim of this article is to adapt an end-of-life care communication skills training (CST) module, originally developed for oncologists, for oncology nurses and to evaluate participants' confidence in using the communication skills learned and their satisfaction with the module. The adapted end-of-life care module consisted of a 45-minute didactic, exemplary video and 90 minutes of small group interaction and experiential role play with a simulated patient. Using a five-point Likert-type scale, 247 inpatient oncology nurses completed pre-/post-workshop surveys rating their confidence in discussing death, dying, and end-of-life goals of care with patients, as well as overall satisfaction with the module. Nurses' confidence in discussing death, dying, and end-of-life goals of care increased significantly after attending the workshop. Nurse participants indicated satisfaction with the module by agreeing or strongly agreeing to all six items assessing satisfaction 90%-98% of the time. Nurses' CST in discussing death, dying, and end-of-life care showed feasibility, acceptability, and potential benefit at improving confidence in having end-of-life care discussions.

Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey

PubMed Central

Pazart, Lionel; Godard-Marceau, Aurélie; Chassagne, Aline; Vivot-Pugin, Aurore; Cretin, Elodie; Amzallag, Edouard; Aubry, Regis

2017-01-01

Background: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. Aim: To assess the number and characteristics of prisoners requiring palliative care in French prisons. Design: A prospective, national survey collecting data over a 3-month period. Setting/participants: All healthcare units (n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. Results: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5–18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care (n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. Conclusion: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners. PMID:28786339

Networking to improve end of life care

PubMed Central

2009-01-01

Network organisations are increasingly common in healthcare. This paper describes an example of clinically led networking, which improved end of life care (EOLC) in care homes, differentiating between a ‘network’ as a formal entity and the more informal process of ‘networking’. The paper begins with a brief discussion of networks and their development in healthcare, then an overview of EOLC policy, the case setting and methods. The paper describes four key features of this networking; (1) how it enabled discussions and implemented processes to help people address difficult taboos about dying; (2) how personal communication and ‘distributed leadership’ facilitated learning; (3) how EOLC occasionally lapsed during the handover of patient care, where personal relationship and communication were weaker; and (4) how successful learning and sharing of best practice was fragile and could be potentially undermined by wider financial pressures in the NHS. PMID:25949588

Cost accounting for end-of-life care: recommendations to the field by the Cost Accounting Workgroup.

PubMed

Seninger, Stephen; Smith, Dean G

2004-01-01

Accurate measurement of economic costs is prerequisite to progress in improving the care delivered to Americans during the last stage of life. The Robert Wood Johnson Excellence in End-of-Life Care national program assembled a Cost Accounting Workgroup to identify accurate and meaningful methods to measure palliative and end-of-life health care use and costs. Eight key issues were identified: (1) planning the cost analysis; (2) identifying the perspective for cost analysis; (3) describing the end-of-life care program; (4) identifying the appropriate comparison group; (5) defining the period of care to be studied; (6) identifying the units of health care services; (7) assigning monetary values to health care service units; and (8) calculating costs. Economic principles of cost measurement and cost measurement issues encountered by practitioners were reviewed and incorporated into a set of recommendations.

Physician Approaches to Conflict with Families Surrounding End-of-Life Decision-making in the Intensive Care Unit. A Qualitative Study.

PubMed

Mehter, Hashim M; McCannon, Jessica B; Clark, Jack A; Wiener, Renda Soylemez

2018-02-01

Families of critically ill patients are often asked to make difficult decisions to pursue, withhold, or withdraw aggressive care or resuscitative measures, exercising "substituted judgment" from the imagined standpoint of the patient. Conflict may arise between intensive care unit (ICU) physicians and family members regarding the optimal course of care. To characterize how ICU physicians approach and manage conflict with surrogates regarding end-of-life decision-making. Semistructured interviews were conducted with 18 critical care physicians from four academically affiliated hospitals. Interview transcripts were analyzed using methods of grounded theory. Physicians described strategies for engaging families to resolve conflict about end-of-life decision-making and tending to families' emotional health. Physicians commonly began by gauging family receptiveness to recommendations from the healthcare team. When faced with resistance to recommendations for less aggressive care, approaches ranged from deference to family wishes to various persuasive strategies designed to change families' minds, and some of those strategies may be counterproductive or harmful. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family's "substituted judgment" and the ability to control patient pain and suffering. Physicians reported concern for the family's emotional needs and made efforts to alleviate the burden on families by assuming decision-making responsibility and expressing nonabandonment and commitment to the patient. Physicians were attentive to repairing damage to their relationship with the family in the aftermath of conflict. Finally, physicians described their own emotional responses to conflict, ranging from frustration and anxiety to satisfaction with successful resolution of conflict. Critical care physicians described a complex and multilayered approach to physician-family conflict. The reported strategies

Improving end of life care in care homes; an evaluation of the six steps to success programme.

PubMed

O'Brien, Mary; Kirton, Jennifer; Knighting, Katherine; Roe, Brenda; Jack, Barbara

2016-06-03

There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme. In order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012-2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC - Achieving Quality in Care Homes. The programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes. Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as 'Champions' and staff sickness/high staff turnover presented challenges to embedding programme values. Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes. The findings suggested an overall

End of Life Care Policy for the Dying: Consensus Position Statement of Indian Association of Palliative Care

PubMed Central

Macaden, Stanley C; Salins, Naveen; Muckaden, Maryann; Kulkarni, Priyadarshini; Joad, Anjum; Nirabhawane, Vivek; Simha, Srinagesh

2014-01-01

EXECUTIVE SUMMARY Purpose: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. Evidence: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. Recommendations: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education. PMID:25191002

Organizational capacities for 'residential care homes for the elderly' to provide culturally appropriate end-of-life care for Chinese elders and their families.

PubMed

Kong, Sui-Ting; Fang, Christine Meng-Sang; Lou, Vivian Weiqun

2017-01-01

Developing culturally appropriate end-of-life care for Chinese elderly and families is not an endemic challenge for Hong Kong, but that of the Western countries with a noticeable trend of rising Chinese population. The particular development of Hong Kong healthcare system, which is currently the major provider of end-of-life care, makes Hong Kong a fruitful case for understanding the confluence of the West and the East cultures in end-of-life care practices. This study therefore aims at building our best practice to enhance the capacity of residential care homes in providing culturally appropriate end-of-life care. We conducted two phases of research, a questionnaire survey and a qualitative study, which respectively aims at (1) understanding the EoL care service demand and provision in RCHEs, including death facts and perceived barriers and challenges in providing quality end-of-life care in care homes, and (2) identifying the necessary organizational capacities for the 'relational personhood' to be sustained in the process of ageing and dying in residential care homes. Findings shed light on how to empower residential care homes with necessary environmental, structural and cultural-resource-related capacity for providing quality end-of-life care for Chinese elders and their families. Copyright © 2016 Elsevier Inc. All rights reserved.

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

PubMed

Boogaard, Jannie A; van Soest-Poortvliet, Mirjam C; Anema, Johannes R; Achterberg, Wilco P; Hertogh, Cees M P M; de Vet, Henrica C W; van der Steen, Jenny T

2013-08-07

End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia. Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) - instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses. The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia. The Netherlands National Trial Register (NTR). NTR3942.

Developing the science of end-of-life and palliative care research: National Institute of Nursing Research summit.

PubMed

Csikai, Ellen L

2011-01-01

A rare opportunity to examine accomplishments and identify ways to advance research in end-of-life and palliative care was offered by the National Institute of Nursing Research (NINR) through a summit meeting held in August 2011. The Science of Compassion: Future Directions in End-of-Life and Palliative Care brought together nationally recognized leaders in end-of-life and palliative care research, including grantees of NINR, as well as more than 700 attendees from all disciplines. It was an exciting affirmation of the importance of moving forward in the field. Presented in this article is a summary of the summit and a call to action for end-of-life and palliative care social workers to engage in seeking funding to conduct needed research and to ensure our unique perspective is represented.

End of Life (Hospice Care)

MedlinePlus

... days of life. Meier DE, et al. Hospice: Philosophy of care and appropriate utilization in the United ... Care Organization. http://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care. Accessed ...

Comparing end-of-life care for hospitalized patients with chronic obstructive pulmonary disease and lung cancer in Taiwan.

PubMed

Chou, Wen-Chi; Lai, Yu-Te; Huang, Yun-Chin; Chang, Chen-Ling; Wu, Wei-Shan; Hung, Yu-Shin

2013-01-01

When it comes to end-of-life care, chronic obstructive pulmonary disease (COPD) patients are often treated differently from lung cancer patients. However, few reports have compared end-of-life care between these two groups. We investigated the differences between patients with end-stage COPD and end-stage lung cancer based on end-of-life symptoms and clinical practice patterns using a retrospective study of COPD and lung cancer patients who died in an acute care hospital in Taiwan. End-stage COPD patients had more comorbidities and spent more days in the intensive care unit (ICU) than end-stage lung cancer patients. They were more likely to die in the ICU and less likely to receive hospice care. COPD patients also had more invasive procedures, were less likely to use narcotic and sedative drugs, and were less likely to have given do-not-resuscitate consent. Symptoms were similar between these two groups. Differences in treatment management suggest that COPD patients receive more care aimed at prolonging life than care aimed at relieving symptoms and providing end-of-life support. It may be more difficult to determine when COPD patients are at the end-of-life stage than it is to identify when lung cancer patients are at that stage. Our findings indicate that in Taiwan, more effort should be made to give end-stage COPD patients the same access to hospice care as end-stage lung cancer patients.

The important role for nurses in supporting the Asian Hindu patient and family at end of life: providing culturally sensitive end-of-life care.

PubMed

Singh, Anuradha; Freeman, Michelle

2011-01-01

As cultural ecology of Canada evolves with daily arrival of new immigrants, Canadians welcome them and feel very proud of preserving their multicultural heritage. As minority groups, especially South Asian Hindus, continue to grow, there is a need to understand their cultural perspectives and accommodate their cultural preferences for end-of-life care. This article addresses end-of-life care from a point of view of Hindu culture and religion and provides a brief overview of their beliefs and rituals related to it. This article also guides nurses to understand diverse Hindu cultural practices and beliefs to help support their patients and families at this difficult time of life.

Knowing Loved Ones’ End-of-Life Health Care Wishes: Attachment Security Predicts Caregivers’ Accuracy

PubMed Central

Turan, Bulent; Goldstein, Mary K.; Garber, Alan M.; Carstensen, Laura L.

2011-01-01

Objective At times caregivers make life-and-death decisions for loved ones. Yet very little is known about the factors that make caregivers more or less accurate as surrogate decision makers for their loved ones. Previous research suggests that in low stress situations, individuals with high attachment-related anxiety are attentive to their relationship partners’ wishes and concerns, but get overwhelmed by stressful situations. Individuals with high attachment-related avoidance are likely to avoid intimacy and stressful situations altogether. We hypothesized that both of these insecure attachment patterns limit surrogates’ ability to process distressing information and should therefore be associated with lower accuracy in the stressful task of predicting their loved ones’ end-of-life health care wishes. Methods Older patients visiting a medical clinic stated their preferences toward end-of-life health care in different health contexts and surrogate decision makers independently predicted those preferences. For comparison purposes, surrogates also predicted patients’ perceptions of everyday living conditions so that surrogates’ accuracy of their loved ones’ perceptions in non-stressful situations could be assessed. Results Surrogates high on either type of insecure attachment dimension were less accurate in predicting their loved ones’ end-of-life health care wishes. Interestingly, even though surrogates’ attachment-related anxiety was associated with lower accuracy of end-of-life health care wishes of patients, it was associated with higher accuracy in the non-stressful task of predicting their everyday living conditions. Conclusions Attachment orientation plays an important role in accuracy about loved ones’ end-of-life health care wishes. Interventions may target emotion regulation strategies associated with insecure attachment orientations. PMID:22081941

The role of the bioethicist in family meetings about end of life care.

PubMed

Watkins, Liza T; Sacajiu, Galit; Karasz, Alison

2007-12-01

There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the "consultant" role, in which bioethicists define and support ethical principles such as those enshrined in the "rational choice" model; and the "mediator" role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the "rational choice" decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context-dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, "persuader", to official roles of "consultant" and "mediator".

Neonatal end-of-life care: a review of the research literature.

PubMed

Moro, Teresa; Kavanaugh, Karen; Okuno-Jones, Susan; Vankleef, Jody A

2006-01-01

While advances in neonatal medicine have increased the possibility of sustaining life for many infants, more infants still die in the neonatal period (birth to 27 days of life) than those in any other time in childhood. Despite this statistic, there still remains much that is unknown about both the needs and the care of these critically ill babies. Palliative care is a viable option for many of these infants and their families. However, palliative care is rarely provided as an option for families. To provide healthcare providers with an overview of palliative and end-of-life care for infants in the neonatal period, we conducted an integrative review of the current research literature. A total of 10 articles were selected for the review. Findings from these studies were summarized in 1 of 4 categories: practices of withdrawing or withholding life-sustaining treatment, pain management during ventilator withdrawal, parents and the decision-making process, and the dying process.

Education and Training in End-of-Life Care for Certified Nursing Assistants in Long-Term Care.

PubMed

Malik, Mansura; Chapman, Wendy

2017-02-01

The growth in the number of older adults in the United States requires appropriately prepared health care providers at all levels who will be able to effectively care for this population. First-line caregivers such as certified nursing assistants (CNAs) need education and training in end-of-life care so they can provide high-quality care for residents and families in the long-term-care (LTC) setting. CNAs were recruited from an LTC facility in western New York to attend an educational intervention consisting of six 45-minute sessions on various topics selected by the researchers using the curriculum from the Core Curriculum for the Hospice and Palliative Nursing Assistant. Pretests and posttests were administered to assess changes in knowledge, and a satisfaction survey was used for the CNAs to identify additional learning needs. Nineteen CNAs completed the six education and training sessions. Data analysis revealed a significant increase in knowledge for the participants. CNAs were also able to identify additional learning needs. Significant improvement in knowledge was seen after the CNAs attended the educational intervention. CNAs working in LTC facilities need education and training in end-of-life care so they can provide appropriate and effective care to residents and their families. Education and training for CNAs led to increased knowledge of end-of-life care and desire for more educational opportunities. J Contin Educ Nurs. 2017;48(2):81-85. Copyright 2017, SLACK Incorporated.

The implementation of an end-of-life integrated care pathway in a Chinese population.

PubMed

Lo, S-H; Chan, C-Y; Chan, C-H; Sze, W-k; Yuen, K-K; Wong, C-S; Ng, T-Y; Tung, Y

2009-08-01

The integrated care pathway is used in end-of-life care to improve quality of care; the Liverpool Care Pathway (LCP) has been used in Europe and North America. Tuen Mun Hospital is a regional hospital in Hong Kong, China. The End-of-life Care Pathway (ECP) based on the concepts used in the Liverpool Care Pathway, was developed, with modification to suit the local condition. Criteria for entry onto the ECP were that the multidisciplinary team agreed the patient was dying, and was at least two of the following: bedbound; semi-comatose; only able to take sips of fluid; no longer able to take tablets. The ECP template replaced all other inpatient documents. The ECP was implemented in the palliative care unit for terminal cancer patients. An audit was performed to review the result. Fifty-one Chinese patients were included in the audit with mean age 64. The median duration of ECP use was 24 hours. All patients had current medication assessed and non-essential drugs were discontinued. The audit result suggested integrated care pathway in end-of-life care could be implemented successfully in an Oriental culture. The acceptance of using the ECP as a standard clinical practice takes time and education. Appropriate template design and supervision are the keys to success.

What matters most in end-of-life care: perceptions of seriously ill patients and their family members

PubMed Central

Heyland, Daren K.; Dodek, Peter; Rocker, Graeme; Groll, Dianne; Gafni, Amiram; Pichora, Deb; Shortt, Sam; Tranmer, Joan; Lazar, Neil; Kutsogiannis, Jim; Lam, Miu

2006-01-01

Background Initiatives to improve end-of-life care are hampered by our nascent understanding of what quality care means to patients and their families. The primary purpose of this study was to describe what seriously ill patients in hospital and their family members consider to be the key elements of quality end-of-life care. Methods After deriving a list of 28 elements related to quality end-of-life care from existing literature, focus groups with experts and interviews with patients, we administered a face-to-face questionnaire to older patients with advanced cancer and chronic end-stage medical disease and their family members in 5 hospitals across Canada to assess their perspectives on the importance. We compared differences in ratings across various subgroups of patients and family members. Results Of 569 eligible patients and 176 family members, 440 patients (77%) and 160 relations (91%) agreed to participate. The elements rated as “extremely important” most frequently by the patients were “To have trust and confidence in the doctors looking after you” (55.8% of respondents), “Not to be kept alive on life support when there is little hope for a meaningful recovery” (55.7%), “That information about your disease be communicated to you by your doctor in an honest manner” (44.1%) and “To complete things and prepare for life's end — life review, resolving conflicts, saying goodbye” (43.9%). Significant differences in ratings of importance between patient groups and between patients and their family members were found for many elements of care. Interpretation Seriously ill patients and family members have defined the importance of various elements related to quality end-of-life care. The most important elements related to trust in the treating physician, avoidance of unwanted life support, effective communication, continuity of care and life completion. Variation in the perception of what matters the most indicates the need for customized or

Death Attitudes Among Middle-Aged Koreans: Role of End-of-Life Care Planning and Death Experiences

PubMed Central

Hong, Michin; Hong, Seunghye; Adamek, Margaret E.; Kim, Mee Hye

2017-01-01

The purpose of this study was to examine factors affecting death attitudes among middle-aged Koreans. In addition, the study explored the interaction effect between knowledge about end-of-life care planning and the experience of death of family or friends on death attitudes. The sample was obtained from a national survey with middle-aged adults in South Korea (n = 2,026). Multivariate regression analysis revealed significant main effects and an interaction effect between knowledge about end-of-life care planning and the experience of death on death attitudes. Greater knowledge of end-of-life care planning was associated with more positive attitudes toward death; however, the effect was stronger for those who had not experienced the death of family or friends. Being older and having greater life satisfaction were also associated with more positive attitudes toward death. This study suggests that end-of-life education can help middle-aged adults embrace the final stage of life and prepare for their own death. PMID:28105867

Death Attitudes Among Middle-Aged Koreans: Role of End-of-Life Care Planning and Death Experiences.

PubMed

Hong, Michin; Hong, Seunghye; Adamek, Margaret E; Kim, Mee Hye

2018-01-01

The purpose of this study was to examine factors affecting death attitudes among middle-aged Koreans. In addition, the study explored the interaction effect between knowledge about end-of-life care planning and the experience of death of family or friends on death attitudes. The sample was obtained from a national survey with middle-aged adults in South Korea ( n = 2,026). Multivariate regression analysis revealed significant main effects and an interaction effect between knowledge about end-of-life care planning and the experience of death on death attitudes. Greater knowledge of end-of-life care planning was associated with more positive attitudes toward death; however, the effect was stronger for those who had not experienced the death of family or friends. Being older and having greater life satisfaction were also associated with more positive attitudes toward death. This study suggests that end-of-life education can help middle-aged adults embrace the final stage of life and prepare for their own death.

[Organising and supporting the end of life when faced with a refusal of care].

PubMed

Rautureau, Pascal

2018-04-01

Often ethically complex, end-of-life situations can mean nursing teams are confronted with a refusal of care. Through a representative clinical situation, a nurse describes the support provided by a multidisciplinary team, in the home, to comply with the wishes of a person at the end of life, support the family, anticipate possible difficulties and organise adapted care which respects all those concerned. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Measuring End-of-Life Care Processes in Nursing Homes

ERIC Educational Resources Information Center

Temkin-Greener, Helena; Zheng, Nan; Norton, Sally A.; Quill, Timothy; Ladwig, Susan; Veazie, Peter

2009-01-01

Purpose: The objectives of this study were to develop measures of end-of-life (EOL) care processes in nursing homes and to validate the instrument for measuring them. Design and Methods: A survey of directors of nursing was conducted in 608 eligible nursing homes in New York State. Responses were obtained from 313 (51.5% response rate) facilities.…

Out-of-hours primary care use at the end of life: a descriptive study

PubMed Central

Fisher, Rebecca FR; Lasserson, Daniel; Hayward, Gail

2016-01-01

Background Out-of-hours (OOH) primary care services are integral to the care of patients at end of life. Little is known about the OOH service usage of patients with palliative care needs. Aim To describe patterns of usage of patients presenting to an OOH service and coded as ‘palliative’. Design and setting A descriptive study of data from the Oxfordshire OOH service. Method A database of all patient contacts with the Oxfordshire OOH service from a 4-year period (June 2010–August 2014) was used to extract demographic and service usage data for all contacts to which clinicians had applied a ‘palliative’ code. Observed differences in demographic features between palliative and non-palliative contacts were tested using logistic regression. Results Out of a total of 496 931 contacts, there were 6045 contacts coded palliative; those ‘palliative’ contacts provided care to 3760 patients. Patients contacting the OOH service with palliative care needs did so predominantly during weekend daytime periods, and over a third had more than one contact. Patients were predictably older than the average population, but contacts coded as ‘palliative’ were relatively less deprived than contacts to the OOH service for all causes, even after adjusting for age and sex. Conclusion The current ‘one-size-fits-most’ model of OOH primary care may not allow for the specific needs of patients at the end of life. Wider analysis of palliative patient flow through urgent care services is needed to identify whether healthcare access at the end of life is inequitable, as well as the capacity requirements of a community-based service that can provide high-quality end-of-life care. PMID:27381487

Hospice family members' perceptions of and experiences with end-of-life care in the nursing home.

PubMed

Oliver, Debra Parker; Washington, Karla; Kruse, Robin L; Albright, David L; Lewis, Alexandria; Demiris, George

2014-10-01

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting? This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community. Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing

Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life

PubMed Central

2011-01-01

Background Over the past ten years there has been an increasing focus on the need for improving the experience of end of life care. A number of policy initiatives have been introduced to develop approaches to discussing and documenting individual preferences for end of life care, in particular preferred place to die. Methods The aim was to investigate practice in relation to discussing and documenting end of life care and preferred place to die in the last 4 weeks of life with patients and their families. The study utilised an audit of 65 case notes, alongside four group interviews with a mix of health care professionals involved in palliative care provision. Results While there was evidence that discussions relating to end of life care and preferred place to die had taken place in around half of the audited case notes, there appeared to be a lack of a systematic approach to the recording of discussions with patients or carers about these kind of issues. Health care staff subsequently highlighted that initiating discussions about end of life care and preferences in relation to place of death was challenging and that the recording and tracking of such preferences was problematic. Conclusions Further work is required to establish how information may be adequately recorded, revised and transferred across services to ensure that patients' preferences in relation to end of life care and place of death are, as far as possible, achieved. PMID:22053810

General Practitioners’ Attitudes towards Essential Competencies in End-of-Life Care: A Cross-Sectional Survey

PubMed Central

Giezendanner, Stéphanie; Jung, Corinna; Banderet, Hans-Ruedi; Otte, Ina Carola; Gudat, Heike; Haller, Dagmar M.; Elger, Bernice S.; Zemp, Elisabeth; Bally, Klaus

2017-01-01

Background Identifying essential competencies in end-of-life care, as well as general practitioners’ (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain. Aim To determine which competencies in end-of-life care are considered important by GPs, to assess GPs’ confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist. Design and Setting Cross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. Method Survey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs’ assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models. Results The response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs’ age, practice size, home visits and palliative training. Conclusions GPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings

Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members.

PubMed

Krawczyk, Marian; Gallagher, Romayne

2016-07-12

This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care. Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care. Our study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was "sick enough to die". Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient's admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die. While a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.

End-of-life care in the Western world: where are we now and how did we get here?

PubMed

Guilbeau, Catherine

2018-06-01

Recent movements in end-of-life care emphasise community care for the dying; however, integrating community with medical care continues to be a work in progress. Historically tracing brain hemispheric dominance, Ian McGilchrist believes we are overemphasising functionality, domination and categorisation to the detriment of symbolism, empathy and connectedness with others. The aim of this historical review is to bring McGilchrist's sociobiological narrative into dialogue with the history and most recent trends in end-of-life care. This review used widely referenced historical accounts of end-of-life care, recent literature reviews on relevant topics and current trends in end-of-life care. While contemporary end-of-life care emphasises community care for the dying, implementation of these new approaches must be considered in its historical context. McGilchrist's arguments call for a critical consideration of what seems a rather simple change in end-of-life care. We must question whether it is possible to hand death responsibilities back to the community when medical services have largely assumed this responsibility in countries supporting individualism, secularism and materialism. © 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 Literature Review on Care at the End-of-Life in the Emergency Department

PubMed Central

Forero, Roberto; McDonnell, Geoff; Gallego, Blanca; McCarthy, Sally; Mohsin, Mohammed; Shanley, Chris; Formby, Frank; Hillman, Ken

2012-01-01

The hospitalisation and management of patients at the end-of-life by emergency medical services is presenting a challenge to our society as the majority of people approaching death explicitly state that they want to die at home and the transition from acute care to palliation is difficult. In addition, the escalating costs of providing care at the end-of-life in acute hospitals are unsustainable. Hospitals in general and emergency departments in particular cannot always provide the best care for patients approaching end-of-life. The main objectives of this paper are to review the existing literature in order to assess the evidence for managing patients dying in the emergency department, and to identify areas of improvement such as supporting different models of care and evaluating those models with health services research. The paper identified six main areas where there is lack of research and/or suboptimal policy implementation. These include uncertainty of treatment in the emergency department; quality of life issues, costs, ethical and social issues, interaction between ED and other health services, and strategies for out of hospital care. The paper concludes with some areas for policy development and future research. PMID:22500239

Ethical Dilemmas at the End of Life: Islamic Perspective.

PubMed

Chamsi-Pasha, Hassan; Albar, Mohammed Ali

2017-04-01

Many Muslim patients and families are often reluctant to accept fatal diagnoses and prognoses. Not infrequently, aggressive therapy is sought by the patient or his/her family, to prolong the life of the patient at all costs. A series of searches were conducted of Medline databases published in English between January 2000 and January 2015 with the following Keywords: End-of-life, Ethics and Islam. Islamic law permits the withdrawal of futile treatment, including all kinds of life support, from terminally ill patients leaving death to take its natural course. However, such decision should only take place when the physicians are confident that death is inevitable. All interventions ensuring patient's comfort and dignity should be maintained. This topic is quite challenging for the health care providers of Muslim patients in the Western World.

End-of-life care in the intensive care unit: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine.

PubMed

Myburgh, John; Abillama, Fayez; Chiumello, Davide; Dobb, Geoff; Jacobe, Stephen; Kleinpell, Ruth; Koh, Younsuk; Martin, Claudio; Michalsen, Andej; Pelosi, Paolo; Torra, Lluis Blanch; Vincent, Jean-Louis; Yeager, Susan; Zimmerman, Janice

2016-08-01

End-of-life care in the intensive care unit (ICU) was identified as an objective in a series of Task Forces developed by the World Federation of Societies of Intensive and Critical Care Medicine Council in 2014. The objective was to develop a generic statement about current knowledge and to identify challenges relevant to the global community that may inform regional and local initiatives. An updated summary of published statements on end-of-life care in the ICU from national Societies is presented, highlighting commonalities and differences within and between international regions. The complexity of end-of-life care in the ICU, particularly relating to withholding and withdrawing life-sustaining treatment while ensuring the alleviation of suffering, within different ethical and cultural environments is recognized. Although no single statement can therefore be regarded as a criterion standard applicable to all countries and societies, the World Federation of Societies of Intensive and Critical Care Medicine endorses and encourages the role of Member Societies to lead the debate regarding end-of-life care in the ICU within each country and to take a leading role in developing national guidelines and recommendations within each country. Copyright © 2016 Elsevier Inc. All rights reserved.

Reflection on stroke deaths and end-of-life stroke care.

PubMed

Quadri, Syed Z; Huynh, Thang; Cappelen-Smith, Cecilia; Wijesuriya, Nirupama; Mamun, Abul; Beran, Roy G; McDougall, Alan J; Cordato, Dennis

2018-03-01

The benefit of palliative care referral for severe stroke patients on end-of-life care pathway (EOLCP) is increasingly recognised. Palliative care provides assistance with symptom management and transition to end-of-life care. Advance care planning (ACP) may help accommodate patient/family expectations and guide management. This is a retrospective study of all stroke deaths (2014-2015) at Liverpool Hospital, Sydney, Australia. Data examined included age, comorbidities, living arrangements, pre-existing ACP, palliative care referral rates and 'survival time'. In total, 123 patient (mean age ± SD = 76 ± 13 years) deaths were identified from 1067 stroke admissions (11.5% mortality); 64 (52%) patients had ischaemic stroke and 59 (48%) intracerebral haemorrhage (ICH), and 40% suffered a prior stroke, and 43% required a carer at home or were in an aged care facility. Survival time from admission was significantly longer in patients with ischaemic stroke compared to intracerebral haemorrhage (median, interquartile range [IQR]: 9.5 [18] vs 2 [4] days, P < 0.001). Only two patients had pre-existing ACP; 44% of patients were referred to palliative care and 41% were commenced on dedicated EOLCP. Palliative care referral was less likely in patients who died under neurosurgery. EOLCP were significantly less likely to be commenced in patients who underwent acute intervention or were not referred to palliative care. In this cohort, palliative care referral and EOLCP were commenced in less than 50% of patients, highlighting significant variations in clinical care. These data support the need to promote awareness of ACP, particularly in patients with prior stroke or significant comorbidities. This may help reduce potentially futile invasive investigations and treatment. © 2017 Royal Australasian College of Physicians.

Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

PubMed

Sharma, Rashmi K; Khosla, Nidhi; Tulsky, James A; Carrese, Joseph A

2012-03-01

Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. Content analysis of focus group transcripts. First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for

Developing graduate student competency in providing culturally sensitive end of life care in critical care environments - a pilot study of a teaching innovation.

PubMed

Northam, Holly L; Hercelinskyj, Gylo; Grealish, Laurie; Mak, Anita S

2015-11-01

Australia's immigration policy has generated a rich diverse cultural community of staff and patients in critical care environments. Many different cultural perspectives inform individual actions in the context of critical care, including the highly sensitive area of end of life care, with nurses feeling poorly prepared to provide culturally sensitive end of life care. This article describes and evaluates the effectiveness of an educational innovation designed to develop graduate-level critical care nurses' capacity for effective interpersonal communication, as members of a multi-disciplinary team in providing culturally sensitive end-of-life care. A mixed method pilot study was conducted using a curriculum innovation intervention informed by The Excellence in Cultural Experiential Learning and Leadership Program (EXCELL),(1) which is a higher education intervention which was applied to develop the nurses' intercultural communication skills. 12 graduate nursing students studying critical care nursing participated in the study. 42% (n=5) of the participants were from an international background. Information about students' cultural learning was recorded before and after the intervention, using a cultural learning development scale. Student discussions of end of life care were recorded at Week 2 and 14 of the curriculum. The quantitative data was analysed using descriptive statistical analysis and qualitative data was thematically analysed. Students demonstrated an increase in cultural learning in a range of areas in the pre-post surveys including understandings of cultural diversity, interpersonal skills, cross cultural interactions and participating in multicultural groups. Thematic analysis of the end of life discussions revealed an increase in the levels of nurse confidence in approaching end of life care in critical care environments. The EXCELL program provides an effective and supportive educational framework to increase graduate nurses' cultural learning