White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care

An Ethical Framework for Surrogate Decision-Making

Because the health care of incapacitated people, including cognitively impaired residents of long-term care facilities, is medically and ethically complex, the decision-making required of surrogates can be conceptually and emotionally difficult.⁷ The following framework is intended to help surrogate decision-makers, including public guardians, and health care providers make ethical decisions on behalf of incapacitated nursing facility residents.

Autonomy

The principle of patient autonomy affirms the right of people to make decisions about their own medical treatment. Individuals have a constitutionally protected right to refuse treatment, including life-sustaining nutrition or hydration. Individual autonomy does not universally assume the primacy that it does in the United States, and a realization of this can help clinicians avert misunderstandings with people of different ethnic and cultural backgrounds. Autonomy may be far less valued than other factors, such as consensus, in more traditional cultures where decision-making may reside with the whole family or with the head of the family. Family members may be subject to powerful role expectations that pertain to pursuing medical treatment or providing care. Learning about the family's belief system and communicating respectfully about options can help the provider navigate these waters.⁸

Substituted Judgment

The principle of "substituted judgment" denotes for an incapacitated individual what he or she would have chosen had they been able to do so. It is difficult to know exactly what another person would have wanted, however, unless that person made his or her wishes known in advance, either by completing a written advance directive or by discussing preferences before becoming incapacitated.

Knowing what another person would want generally requires knowing that person well, though even that is often not sufficient. Public guardians, however, are often appointed specifically because no one else is available who knows the ward well. Without an advance directive, a public guardian has no clear information upon which to base substituted judgments on a ward's behalf. In some situations, public guardians and health care providers may try to ascertain what a person would have wanted by obtaining a "values history, " which comprises examples of earlier decisions and statements a person has made and which may shed light on personal values and priorities.

Although substituted judgment is an important principle in ethical decision-making, many studies have shown that neither health care providers nor surrogates are generally very good at knowing or predicting patients' preferences about medical care.^{9,10,11,12,13,14} Doctors, nurses, and surrogates identify care preferences only moderately better than would be predicted by chance. Family members and health care providers tend to underestimate both self-perceived quality of life¹⁵ and the desire for aggressive care.¹⁰ Advance care planning is effective in that surrogates who have discussed end-of-life issues with patients more accurately represent their wishes than those who have not.¹⁶

Medical care is frequently inconsistent with patients' preferences and is determined by factors other than prognosis or stated preferences.¹² Given the relatively poor performance of family members, physicians, and nursing facility staff in making accurate substituted judgments, it is unrealistic to expect public guardians, who are often strangers to their wards, to do better.

Best Interest

The decision to carry out the previously stated wishes of the patient should be supported and is a manifestation of fidelity and respect for the individual. When an incapacitated patient has not indicated preferences about medical care, the surrogate's decisions should be based upon the "best interest" of the patient: the decisions should be the same as a reasonable adult would make if faced with the same circumstances. Reasonable adults may disagree about specific treatments, especially when no single treatment exists that is clearly superior to the others. To determine which treatment option among several is in the best interest of the patient, a surrogate needs information about the risks and benefits of each option. Physicians and other health care providers are often in the best position to provide this information.

Surrogates may also ethically make the decision to withhold or withdraw treatment from an incapacitated person, though state laws about this vary.

The decision-making authority of surrogates is moderated by other ethical principles, such as 'beneficence' ('doing good') and non-maleficence ('doing no harm'). For example, surrogates are not automatically authorized, on the incapacitated person's behalf, to elect medical treatments that are considered by medical providers to be futile or harmful.⁶ In some situations, limitation of care may be preferable to further intervention. In the absence of other effective or desirable treatments, a palliative care approach, possibly including hospice care, may be appropriate for incapacitated or incompetent persons.