Respecting and Promoting Patient Autonomy in Research, End-of-Life Care, and Chronic Illness Care

2016 ◽  
Author(s):  
Mark D. Sullivan
Keyword(s):  
Informed Consent ◽  
Chronic Illness ◽  
Clinical Research ◽  
End Of Life ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Chronic Illness Care ◽  
Life Care ◽  
General Ability ◽  
A Value

Bioethics teaches us to respect patients as persons by respecting their decisional autonomy. We respect patient autonomy by seeking patients’ informed consent, a policy was first developed for clinical research, where it has worked reasonably well. In other areas, most notably end-of-life care, it has not worked as well. Respecting patient autonomy is not adequate respect for them as ill persons. Rather than opposing physician beneficence and patient autonomy, as is customary in bioethics, we should consider the promotion of patient autonomy as a part of physician beneficence. This recasts the conflict between beneficence and autonomy as the conflict between respecting and promoting patient autonomy. This autonomy needs to be understood not just as the ability to make decisions but also as the general ability to do and be things of value (i.e. agency). This autonomy is not just a value that qualifies care, but is a goal of care.

scholarly journals End-of-life care by expert clinical nurses for non-malignant chronic illness patients in genelral hospitals

2015 ◽  
Vol 10 (2) ◽  
pp. 108-115
Author(s):  
Mariko Tanimoto ◽  
Yoshiyuki Takahashi ◽  
Tomoko Hattori ◽  
Yoshiyuki Tadokoro ◽  
Akiko Sakamoto ◽  
...  
Keyword(s):  
Chronic Illness ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Clinical Nurses

scholarly journals Advance care planning in Asian culture

2020 ◽  
Vol 50 (9) ◽  
pp. 976-989 ◽  
Author(s):  
Shao-Yi Cheng ◽  
Cheng-Pei Lin ◽  
Helen Yue-lai Chan ◽  
Diah Martina ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Care Planning ◽  
Life Care ◽  
Asian Countries ◽  
Advance Care

Abstract Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.

scholarly journals Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study)

2021 ◽  
pp. 026921632110037
Author(s):  
Bregje D Onwuteaka-Philipsen ◽  
H Roeline W Pasman ◽  
Ida J Korfage ◽  
Erica Witkamp ◽  
Masha Zee ◽  
...  
Keyword(s):  
Nursing Home ◽  
Chronic Illness ◽  
Nursing Homes ◽  
The Netherlands ◽  
End Of Life ◽  
End Of Life Care ◽  
Online Survey ◽  
Healthcare Professionals ◽  
Patient Characteristics ◽  
Life Care

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home ( n = 163), hospital ( n = 249), nursing home ( n = 192), hospice ( n = 89) or elsewhere ( n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff’s favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component.

scholarly journals Reframing Patient’s Autonomy in End-of-Life Care Decision-Making: Constructions of Agency in Interviews with Physicians

2021 ◽  
Vol 17 (2) ◽  
pp. 70-87
Author(s):  
André Buscariolli ◽  
Kari Mikko Vesala
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Research Literature ◽  
Life Care ◽  
Structured Interviews ◽  
Positive Attitudes ◽  
Patient’S Autonomy ◽  
Questionnaire Studies ◽  
Care Decision

In the research literature, critical viewpoints question the idea of patient autonomy as a robust basis for approaching end-of-life treatments. Yet physicians express distinctly positive attitudes towards patient autonomy and advance directives in questionnaire studies. In this article, we unravel taken-for-granted assumptions about the agency that physicians use when evaluating patient autonomy in end-of-life care. We use Goffmanian frame analysis to analyze semi-structured interviews with eight Finnish physicians. Instead of measuring standardized responses, we explore in detail how distinct evaluations of patient autonomy are made through approving or reserved stand-taking. The results show that the interviewees reframed patient autonomy with the help of biological, medical, ethical, and interaction frames. Through such reframing, the patient’s agency was constructed as vulnerable and weak in contrast to the medical expert with the legitimated capacity to act as an agent for the patient. Further, end-of-life treatment decisions by the patient, as well as the patient’s interests appeared as relationally defined in interactions and negotiations managed by the physician, instead of attesting the sovereign agency of an autonomous actor.

Advanced and End-of-Life Care

Almost Over ◽  
2020 ◽  
pp. 85-120
Author(s):  
F. M. Kamm
Keyword(s):  
Informed Consent ◽  
Best Practices ◽  
End Of Life ◽  
End Of Life Care ◽  
General Public ◽  
Assisted Suicide ◽  
Good Life ◽  
Framing Effects ◽  
Life Care

Chapter 4 considers proposals for advanced and end-of-life care and for helping the general public make decisions about such care. Possible conflicts are identified between the aim of respecting people’s preferences and meeting objective standards of best practices, satisfying family preferences, and meeting requirements of informed consent. The chapter considers in detail questions suggested for conversations about advanced and end of life care. It locates imprecision, nudging, and framing effects in those questions that may interfere with their correctly eliciting people’s preferences. It also suggests that there may be attempts to promote specific values and goals favored by end-of-life care professionals, such as peacefulness and avoiding invasive treatments. The possible connection between the aim of a good life to the end and the use of assisted suicide is also examined.

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