Forty Years of Work on End-of-Life Care — From Patients' Rights to Systemic Reform

Wolf, Susan M.; Berlinger, Nancy; Jennings, Bruce

doi:10.1056/nejmms1410321

Cited by 37 publications

(24 citation statements)

References 23 publications

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“…Levine points to the need to improve informal caregivers’ well-being through better communication and involvement in the care of their loved ones. In analyzing the development of end-of-life care in the US, Wolf et al [9] describe three phases: “Securing rights (1976-1994)”, “Facing clinical realities (1995-2009),” and “Reforming end-of-life care systems (2010-).” In the last and ongoing phase, the need to include friends and families in end-of-life decisions is highlighted [9], and this development in bioethics [8] is also addressed in guidelines on end-of-life care [10]. Among others, Hilde Lindemann (Nelson), and James Nelson have contributed with important insights into families as moral communities and the importance of family perspectives in medical decision-making [8, 11, 12].…”

Section: Introductionmentioning

confidence: 99%

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

Thoresen

Lillemoen

2016

BMC Med Ethics

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

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Section: Introductionmentioning

confidence: 99%

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

Thoresen

Lillemoen

2016

BMC Med Ethics

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“…Studies have appeared in 79 different journals, ranging from general medicine (New England Journal of Medicine, Lancet), surgery (Journal of Surgical Research), and critical care (American Journal of Respiratory and Critical Care Medicine) journals to health disparities (Journal of Healthcare for the Poor and Underserved ), health services (Medical Care), health policy (Health Affairs), and gerontology (Gerontologist) journals. Most articles appeared in cancer (96 articles) or palliative care (73 articles) journals, particularly the Journal of Palliative Medicine (27), Journal of Pain and Symptom Management (17), Cancer 17, Supportive Care in Cancer (17), and Journal of Clinical Oncology (16). Outside of oncology and palliative care, the most common outlets were the Journal of the American Geriatrics Society (8), JAMA Internal Medicine (8), and JAMA (7).…”

Section: General Overviewmentioning

confidence: 99%

“…Studies have been conducted in 29 different countries, mainly in the U.S. (137 studies), Canada 26, The Netherlands (16), Italy (13), and Taiwan (13)…”

Section: General Overviewmentioning

confidence: 99%

Conceptualizing and Counting Discretionary Utilization in the Final 100 Days of Life: A Scoping Review

Duberstein

Chen

Hoerger

et al. 2020

Journal of Pain and Symptom Management

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Context. There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end of life (DIAL), an indicator of quality care. Objective. The objectives of this study were to examine how DIALs have been operationally defined and identify areas where evidence is biased or inadequate to inform practice. Methods. We conducted a scoping review of the English language literature published from 1/1/04 to 6/30/17. Articles were eligible if they reported data on $2 DIALs within 100 days of the deaths of adults aged $18 years. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases and influences were explored. Results. We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly focused on cancer care (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., intensive care unit admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of research design, professional norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half of the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs. Conclusion. Unwarranted variation in DIAL assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIAL assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.

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“…This framework has endured in American bioethics, particularly in “bedside” clinical ethics consultation, and has been adapted for use in other health care systems with similar demographics and equivalent life‐sustaining interventions. Over the decades, it has incorporated insights from subsequent research and professional consensus and debate …”

Section: Introductionmentioning

confidence: 99%

“…Over the decades, it has incorporated insights from subsequent research and professional consensus and debate. 5 Yet the question of what bioethics should aim to offer to America's aging society and to other aging societies beyond guidance for medical decision-making and the relief of suffering remained unanswered. Concerning aging, American bioethics has largely concerned itself with the end of life and the care of patients with age-associated, progressive conditions.…”

mentioning

confidence: 99%

Becoming Good Citizens of Aging Societies

Berlinger¹,

Solomon²

2018

Hastings Center Report

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The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we’ve agreed that aging is morally important and that population‐level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what is our field’s contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships.

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Forty Years of Work on End-of-Life Care — From Patients' Rights to Systemic Reform

Cited by 37 publications

References 23 publications

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

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

Conceptualizing and Counting Discretionary Utilization in the Final 100 Days of Life: A Scoping Review

Becoming Good Citizens of Aging Societies

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