Abstract
Background
Many seriously ill patients lack capacity to speak for themselves and participate in health care 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 nonlegally appointed to make decisions on behalf of a patient who lacks capacity. A health care proxy (also known as a durable power of attorney for health care) is a legal document that allows one to assign a health care agent (also known as a proxy or health care 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 as follows2–5
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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).
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Use the patient's medical situation/preferences/values to consider what is in their “best interest” (best interest standard).
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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. Although treating clinicians cannot serve as witnesses or complete these forms, the health care system can often help patients complete these documents, providing social workers or other support staff for this process. Surrogates can also be designated informally through oral designation to a health care provider. Although 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 health care 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 health care agent, in many states the default surrogate is decided through 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 health care agent may be set by the local health care system. Such protocols may call for “family consensus” decision making. In certain states, a legally documented health care agent is required for specific interventions in the care of an incapacitated patient, such as nursing home transfer. Without documenting a health care 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 that explore preferences and aim to elicit values. These include but are not limited to the following: 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 Health care 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 earlier. 10
All documentation of health care agents should be reviewed periodically (e.g., annually) to ensure that they reflect the patient's most updated wishes.