White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care
The hierarchy of medical decision-making for incapacitated nursing home residents
The Patient Self-Determination Act, enacted as federal law in 1991, grants all persons or their surrogates the right to refuse or discontinue treatment, and it makes advance directives completed in any state legal and portable. This law also requires all medical facilities receiving federal funds to ask, at the time of admission, whether a prospective patient has completed a written advance directive, which usually includes the naming of a surrogate decision-maker. Nursing facilities must document at regular intervals whether a resident has an advance directive or has designated a surrogate decision-maker.
In most states, the decisions of court-appointed guardians prevail over the directives of all others, except when the ward has executed an advance directive before losing decision-making capacity. Advance directives supersede decisions by a guardian or other surrogate. When guardians appear to be disregarding advance directives, the advance directives should prevail, and it may even be necessary for medical providers to petition the court to appoint a new guardian. For incapacitated patients without a guardian, written advance directives still prevail, even over the contrary wishes of family members or other surrogates.
Providers should discuss the provisions of advance directives with surrogates, particularly when the advance directives are vague, contain inconsistent instructions, or reflect misconceptions, in an effort to interpret the directive in the context of the patient's earlier decisions or preferences when those are available. In a medical emergency, emergency responders cannot be held responsible for failing to honor an advance directive of which they are unaware.
| Table 2 - Hierarchy of Medical Decision-Making for Incapacitated Patients |
|
Advance directives specified by the patient before (s)he became incapacitated prevail, even over the contrary wishes of guardians and other surrogate decision-makers
The decisions of the guardian or of a surrogate designated in an advance directive prevail over all others except in the presence of a written advance directive
Decisions of surrogates, including guardians, should be guided by:
- Substituted judgment (if the incapacitated person's wishes were known but not formalized in an advance directive)
- Best interest of the patient, based on clinical evidence, prognosis, life expectancy, risk and benefit of proposed treatments, comfort and dignity
Family members and friends take precedence next, usually in the following order
- Spouse
- Adult children
- Siblings
- Other family members
- Friend
- Health care providers follow, in the absence of other decision-makers (not optimal)
|
When there is neither a guardian nor an advance directive that specifies a surrogate, the right to make decisions falls to family members, generally in the following order: spouse, adult children, siblings, then other family members. The provisions of states differ: in some states, law specifies this order; in others, no order is specified. While some states recognize common-law spouses and grant them decision-making power, others do not; similarly, some recognize the category of "friend," which may apply to a longtime companion or partner. In some states, all adult children or siblings must unanimously make decisions as a "class". Some states have rejected rigid hierarchies, recognizing instead that personal involvement and knowledge, as well as having the patient's best interests at heart supersedes such hierarchies.
When there is disagreement among family and friends about what a patient would have wanted or about which interventions are in the best interest of the patient, it is helpful for clinicians to spend the extra time required to reach consensus, even when only one person is technically authorized to make decisions. In rare cases, it may be necessary to petition the court for a guardian to act on the patient's behalf.
Many long-term care facility residents have no involved family members. The number of mentally incapacitated people in nursing homes for whom there is no designated surrogate decision-maker greatly outnumbers those for whom courts have appointed guardians. This puts health care providers in the circumstance of acting as de facto decision makers.18 Only a few states specify a procedure, which guides the care team's decision making on behalf of an incapacitated patient without a surrogate.
|