A Legal and Ethical Analysis of the Effects of Triggering Conditions on Surrogate Decision-Making in End-of-Life Care in the US

HEC Forum ◽  
2015 ◽  
Vol 28 (1) ◽  
pp. 11-33 ◽  
Author(s):  
J. Clint Parker ◽  
Daniel S. Goldberg
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Ethical Analysis ◽  
Surrogate Decision Making ◽  
Life Care ◽  
The Us ◽  
Triggering Conditions ◽  
Surrogate Decision

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.

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.

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.

The Intensive Care Unit

2019 ◽  
pp. 624-638
Author(s):  
Jennifer L. McAdam ◽  
Céline Gélinas
Keyword(s):  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Symptom Assessment ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Icu Patients ◽  
Family Meetings ◽  
Patient Goals ◽  
Surrogate Decision

This chapter on intensive care discusses the provision of palliative care in intensive care units (ICUs), with an emphasis on end-of-life care. Specifically, it will cover the challenges and barriers to providing end-of-life care in ICUs. Recommendations are offered for the provision of symptom assessment and management. Current issues related to holding family meetings, establishing patient goals of care, surrogate decision-making, and withholding and withdrawing life-sustaining therapies are covered. Finally, recommendations are offered for attending to the needs of families as well as healthcare professionals who care for ICU patients at the end of life.

The intensive care unit

2015 ◽  
pp. 740-760
Author(s):  
Jennifer McAdam ◽  
Kathleen Puntillo
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Symptom Assessment ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Icu Patients ◽  
Family Meetings ◽  
Patient Goals ◽  
Surrogate Decision

This chapter discusses the provision of palliative care in ICUs, with an emphasis on end-of-life care. Specifically, challenges and barriers to providing such care in ICUs are described, and recommendations are offered for the provision of symptom assessment and management. Current issues related to holding family meetings, establishing patient goals of care, surrogate decision-making, and withholding and withdrawing life-sustaining therapies are covered. Recommendations are offered for attending to the needs of families and of healthcare providers who care for ICU patients at the end of life. Finally, an international agenda for improving end-of-life care in ICUs is presented.

Ethics consultations in patients with neuro-oncologic diseases.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e13519-e13519
Author(s):  
Ugur Sener ◽  
Elizabeth C. Neil ◽  
Alan Carver ◽  
Eli L. Diamond ◽  
Louis Voigt
Keyword(s):  
Decision Making ◽  
Family Conflict ◽  
End Of Life Care ◽  
Ethical Issues ◽  
Ethics Consultation ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Ethical Conflicts ◽  
Surrogate Decision ◽  
Oncologic Diseases

e13519 Background: In patients with cancer, ethical issues regarding patient autonomy, surrogate decision making, and end-of-life care often arise. Ethics consultation can help clarify perspectives of different stakeholders involved in a patient’s care, facilitate communication, and resolve conflicts. Neurologic manifestations of cancer can cause impairment of cognition, communication, and functional independence. Ethical conflicts in the specific context of neuro-oncologic diseases have yet to be characterized. Methods: In this retrospective study, we reviewed 50 cases where ethics consultation was requested for patients with neurologic malignancies or neurologic complications of cancer treated at Memorial Sloan Kettering Cancer Center (MSK). Results: Of 50 patients (ages 4-76, 56% female) reviewed, 27 had a primary central nervous system (CNS) malignancy, 21 had CNS metastasis, one had a vascular malformation, and one had no clear diagnosis. Neurologic issues contributing to patients’ clinical status included toxic metabolic encephalopathy (14), leptomeningeal disease (10), intracerebral hemorrhage (10), hydrocephalus (9), seizures (6), cord compression (5), and ischemic stroke (3). At the time of ethics consultation, 39 patients lacked decision-making capacity, 47 did not have an advance directive, and 38 did not have a do not resuscitate (DNR) order. Ethical issues identified included surrogate decision making (20), DNR (18), capacity (6), refusal of treatment (5), futility (4), brain death (4), and research ethics (2). Contextual issues included staff-family conflict (22), cultural or religious considerations (10), intra-family conflict (7), intra-staff conflict (6), and physician attitude toward treatment (3). Conclusions: Neuro-oncologic diseases present a unique constellation of ethical conflicts, particularly about end-of-life care. Language and cognitive deficits, impaired decision-making, and sudden neurological decline are factors that shape ethical conflicts in this clinical setting. Further study of ethical issues in neuro-oncology may help patients receive care that is consistent with their goals and values.

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