Ethical frameworks for surrogates' end-of-life planning experiences
- PMID: 27005954
- PMCID: PMC5033678
- DOI: 10.1177/0969733016638145
Ethical frameworks for surrogates' end-of-life planning experiences
Abstract
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.
Keywords: End-of-life care; ethics; family; surrogate decision making; systematic review.
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References
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- Berlinger N, Jennings B, Wolf SM. The Hastings Center guidelines for decisions on life-sustaining treatment and care near the end of life. second Oxford University Press; New York, NY: 2013.
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- American Bar Association Default surrogate consent statutes - as of June 2014. http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014... (2014, accessed 16 January 2015)
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- Bern-Klug M. A conceptual model of family surrogate end-of-life decision-making process in the nursing home setting: goals of care as guiding stars. J Soc Work End Life Palliat Care. 2014;10:59–79. - PubMed
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- Sorrell JM. Deciding for others: surrogates struggling with health care decisions. J Psychosoc Nurs Ment Health Serv. 2014;52:17–21. - PubMed
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