Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction Heart failure has a poor prognosis, and the number of patients continues to increase. Moreover, since it is a disease that causes various sufferings, substantial end-of-life care is needed. Advanced care planning (ACP) is a part of end-of-life care for patients with heart failure. ACP provides patient decision-making opportunities, documenting end-of-life preferences, and increasing end-of-life conversation. However, the ACP intervention for patients with heart failure is not integrated, and studies are insufficient. In addition, Japan follows a non-Western culture, in which participation in the medical decision-making is reluctant and considered to be less prepared for ACP. Clarifying the effects of systematic ACP on patients with heart failure in Japan can be used to determine effective interventions in Japan and may provide effective ACP intervention for patients who have no preparedness worldwide. Purpose This study aimed to identify the effect of protocol-based intervention on the outcomes of ACP in Japanese outpatients with heart failure. Methods This is a single-center retrospective observational study. Data on patient attributes, conversation records, and document information from medical records of patients who have undergone intervention using the predeveloped ACP protocol were collected. Numerical data were statistically analyzed. ACP results were evaluated by performing deductive content analysis on the basis of existing frameworks. A subgroup analysis was performed on differences in ACP outcomes based on patient attributes. Results Data were collected from 13 patients who underwent ACP intervention. The median age was 69 years. Moreover, 76% were male, 84% were married, 76% were living with family, and 46% were receiving home-visit nursing care. New York Heart Association functional classification II was the most common in the severity classification of heart failure, and ischemic cardiomyopathy was the most common etiology. Documenting patient’s wishes, recording patient’s wishes in medical record, and identifying what brings value to patient"s life were achieved in 76% of the participants. Deciding surrogate decision makers, discussing values and care preferences with the surrogate, and discussing values and care preferences with health care professionals were achieved in 69% of the participants. Differences in patient attributes, such as age and presence or absence of home-visit nursing, did not affect ACP outcomes. Conclusion Protocol-based ACP allows patients with heart failure to determine surrogate decision makers and discuss care preferences with healthcare professionals, identify what they value, and record their wishes. The protocol-based ACP had a positive impact on ACP outcomes, without being restricted by patient attributes.

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

OMEGA - Journal of Death and Dying ◽

10.2190/2mt2-5gyu-gxvv-95ne ◽

2001 ◽

Vol 42 (4) ◽

pp. 273-291 ◽

Cited By ~ 51

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.

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Whose Decision Is This?

Pediatric Palliative Care ◽

10.1093/med/9780190051853.003.0001 ◽

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.

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Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

Journal of Oncology Practice ◽

10.1200/jop.2017.021766 ◽

2017 ◽

Vol 13 (10) ◽

pp. e874-e880 ◽

Cited By ~ 6

Author(s):

Emily E. Johnston ◽

Abby R. Rosenberg ◽

Arif H. Kamal

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Quality Measures ◽

Care Quality ◽

Patient Choice ◽

Decision Makers ◽

Hospital Death ◽

Life Care ◽

High Quality ◽

National Quality

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

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