scholarly journals Ethical frameworks for surrogates’ end-of-life planning experiences

2016 ◽  
Vol 24 (1) ◽  
pp. 46-69 ◽  
Author(s):  
Hyejin Kim ◽  
Janet A Deatrick ◽  
Connie M Ulrich
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Ethical Theories ◽  
Ethical Frameworks ◽  
Life Care Planning ◽  
Surrogate Decision

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision-making research. Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences.

Planning End-of-Life Care for Patients with Dementia: Roles of Families and Health Professionals

2001 ◽  
Vol 42 (4) ◽  
pp. 273-291 ◽  
Author(s):  
Charles E. Gessert ◽  
Sarah Forbes ◽  
Mercedes Bern-Klug
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Family Members ◽  
Care Planning ◽  
Life Care ◽  
Dementia Patients ◽  
Advance Care ◽  
Surrogate Decision

We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in ‘normalizing’ the discussion of death.

Whose Decision Is This?

2020 ◽  
pp. 3-6
Author(s):  
Elissa G. Miller
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Best Interest ◽  
Best Interest Standard ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision

Decision-making in palliative and end-of-life care can be difficult to navigate. This is even more so in pediatric palliative and end of life care when parents may disagree with each other or for teenagers who are not yet legally able to make their own medical decisions. Surrogate decision making can also complicate end of life decision making in pediatrics. To navigate these complex situations, the best interest standard, harm principle, and other standards are often applied when concerns arise over surrogate decision-making. This chapter presents a discussion of the ethical principles and a recommended approach to managing clinical situations with uncertain or conflicting surrogate decision-makers.

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Shared Decision Making ◽  
End Of Life Care ◽  
The United States ◽  
Ethical Framework ◽  
Shared Decision ◽  
Life Care ◽  
Best Interest ◽  
Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

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