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

Guidance for guardians and other surrogates about medical decision-making

Guardians may come to their role from a variety of different backgrounds. A Public guardian is a government employee with experience in the role, but no prior knowledge of the individual. A private guardian may be a family member or friend knowledgeable about their ward but unfamiliar about the task assigned, a hired professional such as a social worker or geriatric care manager, an attorney familiar with legal and financial matters. Thus, guardians may differ with regard to their knowledge of the ward, as well as their knowledge of medical or legal affairs. Communication between the guardian and the attending physician is therefore necessary.

Guardianship can result in decision-making that is cumbersome and slow, which itself can have adverse consequences for patients. Laws affecting guardians' decision-making vary from state to state and may be ambiguous. Administrative policies of long-term care facilities may also affect or restrict the decisions that surrogates can make, especially those that involve withdrawing or withholding life-sustaining treatment. It is helpful for the guardian or other surrogate, with the assistance of the health care provider, to plan for likely contingencies by making advance care plans on behalf of the patient. (Volicer JAGS 2002)

Perhaps the clearest way for surrogate decision-makers to begin formulating advance care plans is by thinking not about specific medical interventions but rather about the overall goals of care.^19,3 These goals should be based both on the principle of best interest of the patient and on realistic assessment of the patient's medical, functional and cognitive status, life expectancy, and prognosis. Such goals of care might include prolonging life, maximizing function, or ensuring comfort. Because a medical intervention that would further one goal might compromise another, it is helpful to prioritize goals; that way, health care providers have a sense of which interventions would be most appropriate for a given patient. Prioritizing goals of care provides a framework that is highly flexible and can serve as a guideline in unanticipated situations.¹⁹ Setting goals of care in advance can help avoid delays in the initiation of desired treatment, prevent the initiation of treatment that is not consistent with the goals of care, and prevent miscommunication at times of crisis.

Advance care planning by the guardian or other surrogate should also, in states where it is legal, result in a written advance directive, signed by the surrogate. Some states have standardized forms-- such as Oregon's Physician's Order for Life-Sustaining Treatment (POLST)²⁰ and California's Physician Documentation of Preferred Intensity of Treatment-- that ensure portability from facility to facility, e.g., from long-term care facility to hospital, of specific advance directives such as DNR orders. Surrogates should be familiar with about the regulations in their particular state.

Clear decisions about whether to use or forego specific diagnostic and therapeutic interventions are crucial to advance care planning in long-term care facilities. Such interventions include cardiopulmonary resuscitation, mechanical ventilation, artificial feeding, intravenous fluids, antibiotics, hospitalization, and dialysis. Surrogates should decide in advance in the event of acute illness whether it is appropriate, given the goals of care, to use these interventions, or opt for other approaches such as palliative care in the long-term care facility.

Health care providers should notify surrogates when a patient has had a significant change in health status or is deemed terminally ill. Surrogates should also be informed that there may be no specific and recognizable turning-point in chronic conditions such as dementia, chronic obstructive pulmonary disease, or congestive heart failure. In the presence of these conditions, it is especially important to specify goals of care in advance and reevaluate these goals as a patient's condition worsens.

Although ethicists and courts have held that there is no difference between withholding and removing life support,⁷ there is often a perceived difference between these actions that can be especially painful for surrogates and caregivers. Advance care planning may help avoid the initiation of unwanted treatment, thus preventing the need to discontinue it later.