Background: Many seriously ill patients lack capacity to speak for themselves and participate in healthcare decision-making. In these situations, clinicians turn to a surrogate decision maker for guidance. Evidence suggests that within 48 hours of admission, 47.4% of hospitalized older adults required surrogate involvement (1). The goal of this Fast Fact is to explain the role of a surrogate decision maker, how to guide patients in the selection of a surrogate, and how decision-making proceeds if the patient has never selected a surrogate before becoming incapacitated.
Definitions: Surrogate is an all-encompassing term for a person legally or non-legally appointed to make decisions on behalf of a patient who lacks capacity. A healthcare proxy (also known as a durable power of attorney for healthcare) is a legal document which allows one to assign a healthcare agent (also known as a proxy or healthcare power of attorney), a person designated by the individual to make decisions on his or her behalf in the event of incapacitation. Terms for this decision-making role are often used interchangeably. For this Fast Fact, we will use the term surrogate. Nuances of these roles vary by state. Check in your jurisdiction for complete details.
Characteristics of a Surrogate: Ideally, patients choose their surrogate, as it is a personal decision. Sometimes patients know right away whom they would choose. Other times, guidance is necessary. Patients should be guided to choose a surrogate who best embodies the characteristics below (2-5):
- Have decision making capacity.
- Know the patient well, having a strong understanding of the patient’s values, beliefs and preferences.
- Express care and concern for the patient.
- Advocate for the patient’s best-known wishes, seeking to make decisions as the patient would have made them if they had decision-making capacity (substituted judgment) (6).
- Use the patient’s medical situation/preferences/values to consider what is in their “best interest” (best interest standard) (6).
- Advocate for the patient even in emotionally fraught situations. One might ask, “Facing a life and death decision, would that person state the patient’s wishes? Or, would it be too emotionally difficult?”
Designating a Surrogate: When a patient chooses a surrogate, he or she must have capacity to make that decision and be free of coercion. Because decision-making capacity is decision-specific, a patient may have capacity to assign a surrogate (which is in general felt to be a low-risk medical decision) even if they lack capacity for more complex decisions. Their choice of a surrogate should be formalized through a legal document such as an advance directive or durable power of attorney for health care. This often requires the use of a notary and/or witnesses to be legally binding. While treating clinicians cannot serve as witnesses or complete these forms, the healthcare system can often help patients complete these documents, providing social workers or other support staff for this process. Surrogates can also be designated informally via oral designation to a healthcare provider. While verbal designation may be enough in the short term (i.e. during a hospital stay), it is encouraged to legally document one’s wishes. This is particularly important when the patient-designated surrogate does not align with the legally standardized hierarchy (i.e. a friend is chosen rather than a family member or, a child is chosen rather than the spouse) (7). Consult your state laws regarding how to fill out a legally valid medical durable power of attorney for healthcare form as rules vary state-by-state.
Legal Considerations: If the situation arises that a surrogate decision-maker is required, and the patient has not previously documented a healthcare agent, in many states the default surrogate is decided via a legally specified hierarchy of surrogacy. This may or may not match the patients’ preferred surrogate (7,8). A common order for this hierarchy is: spouse, adult children, parents, adult siblings, and adult grandchildren. State-by-state differences include the standing of second spouses and children. Some states do not have a default hierarchy of surrogacy. Instead, protocol for decision-making for an incapacitated patient in the absence of a documented healthcare agent may be set by the local healthcare system. Such protocols may call for “family consensus” decision-making. In certain states, a legally documented healthcare agent is required for specific interventions in the care of an incapacitated patient, such as nursing home transfer. Without documenting a healthcare agent in advance, families can end up going through a lengthy and expensive guardianship process. Check with your hospital legal counsel for the specifics to your state and practice setting.
Tips for Communicating with Patients about Choosing a Surrogate:
- Ask the patient, “Who would you trust us to talk to if you were so sick that we could not talk to you?”
- Ask the patient, “Have you talked to ____ about what is most important should you get sicker?” Promoting the patient’s discussion with their surrogate may strengthen the surrogate’s ability to advocate in a time of need.
- There are several decision aid tools which explore preferences and aim to elicit values. These include but are not limited to: Consumer’s Tool Kit for Health Care Advance Planning, Your Life Your Choices, Planning for Future Health Care Decisions My Way, Caring Conversations: Making Your Healthcare Wishes Known, Five Wishes and Prepare for Your Care (9,10).
- Finally, one should check with the patient about how much flexibility the surrogate should have to modify the patient’s decisions (11). One might ask, “Some people say, ‘it is OK for my decision maker to change any of my medical decisions if my medical team thinks it is best for me at that time.’ Others say ‘I want my decision maker to follow my medical wishes exactly. It is NOT OK to change my decisions, even if the doctors recommend it.’ How much flexibility should your surrogate have?”. Surrogate flexibility is a component of several of the decision aids outlined above (10).
- All documentation of healthcare agents should be reviewed periodically (ex: annually) to ensure that they reflect the patient’s most updated wishes.
- Torke AM, Sachs FA, Helft PR et.al. Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med. 2014; 174 (3): 370-377.
- Edwards SJL, Brown P, Amon Twyman M, Christie D, Rakow T. A qualitative investigation of selecting surrogate decision-makers. J Med Ethics. 2011; 37: 601-605.
- Fritch J, Petronio S, Helft PR, Roke A. Making decisions for hospitalized older adults: Ethical factors considered by family surrogates. J Clin Ethics. 2013; 24 (2): 125-134.
- Pizzo PA, Walker DM, Bomba PA. Dying in America: Improving quality and honoring individual preferences near the end of life. Institute of Medicine; 2014.
- Pope TM. Legal Fundamentals of Surrogate Decision Making. CHEST 2012: 141(4): 1074-1081.
- Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press. 1989.
- Watson A, Sheridan B, Rodriquez M, Seifi A. Biologically-related or emotionally-connected: who would be the better surrogate decision-maker? Med Health Care and Philos. 2015; 18: 147-148.
- Arnold RM, Kellum J. Moral justifications for surrogate decision making in the intensive care unit: Implication and limitations. Crit Care Med. 2003; 31 (5): S357-S353.
- Bridges JFP, Lynch T, Schuster ALR, Crossnohere NL, Clegg Smith K, Aslakson RA. A review of paper-based advance care planning aids. BMC Palliative Care. 2018; 17: 54.
- Sudore RL, Knight SJ, McMahan RD et.al. A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Sym
- Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992; 267: 59-63.
Links to Decision Tools:
Consumer’s Tool Kit for Health Care Advance Planning: https://www.dshs.wa.gov/sites/default/files/ALTSA/stakeholders/documents/duals/toolkit/Consumers%20Tool%20Kit%20for%20for%20Health%20Care%20Advance%20Planning.pdf (Accessed 3 April 2019)
Your Life Your Choices: http://www.elderguru.com/downloads/your_life_your_choices_advance_directives.pdf (Accessed 3 April 2019)
http://theconversationprojectinboulder.org/wp-content/uploads/2014/11/Planning-My-Way.pdf (Accessed 3 April 2019)
https://practicalbioethics.org/files/caring-conversations/Caring-Conversations.pdf (Accessed 3 April 2019)
Authors Affiliations: University of Pittsburgh Medical Center, Division of General Medicine, Section of Palliative Care and Medical Ethics, Pittsburgh, PA
Conflicts of Interest: NoneVersion History: originally edited by Christopher Lawton MD; first electronically published May 2019.
Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.
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