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Advance care planning: Beyond the living will

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ABSTRACTFor a variety of reasons, the most commonly used advance directive documents (eg, the living will) may not be very useful in many situations that older adults encounter. The durable power of attorney for health care is a more versatile document. We advocate focusing less on “signing away” certain interventions and more on clarifying the goals of care in the ambulatory setting.

KEY POINTS

  • In the ambulatory setting, start by assessing the patient’s prognosis and his or her receptiveness to advance care planning.
  • For a patient in declining health who is willing to participate in the care planning process, it may be useful to take a full values history and to review the goals of care.
  • For a patient with advanced disease who is unable or unwilling to participate in advance care planning, a limited approach may be appropriate, ie, identifying a surrogate decision-maker and ascertaining how much flexibility the surrogate should have with health care decisions.
  • Whatever the patient’s life expectancy and level of receptivity, brief, episodic discussions are more useful than a one-time description of available written advance directives.


 

References

Mr. B., an 82-year-old retired accountant with hypertension, was diagnosed with early Alzheimer disease 6 years ago. He now needs supervision with bathing and dressing and no longer consistently recognizes family members. You are seeing him in the office today after a hospitalization for aspiration pneumonia, his second in the past 6 months.

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In the hospital, a brain scan showed that atrophy had progressed and white-matter disease was more extensive than 3 years earlier. A barium swallow study showed esophageal dysmotility and aspiration. He was prescribed a “dysphagia diet,”1 which he dislikes.

Since returning home, he has been disoriented, he has been wandering about the house, and he has fallen several times. He has lost 10 pounds in 6 months. Because of his confusion, his wife cannot take him out, and she is exhausted caring for him.

Reviewing his medical record, you note that 10 years ago, Mr. B. completed a living will and designated his wife as his proxy decision-maker via a medical power of attorney document.

PLANNING IS OFTEN NEGLECTED

Many clinicians and older patients feel a strong need to document, in advance, the patient’s wishes regarding medical care in the event the patient becomes seriously ill and unable to participate in treatment decisions. Professional societies such as the American Geriatrics Society promote advance care planning,2 and some indices of the quality of medical care include whether advance directives have been discussed and completed.3

Yet, despite the high profile of advance care planning,4 few patients actually fill out advance directives,5 with completion rates that vary widely,6–8 sometimes by ethnicity and sex.9,10 Furthermore, in a crisis, these directives are seldom followed.11

In this paper, we recommend an approach to advance care planning for older adults that redirects the focus from “signing away” interventions such as dialysis, mechanical ventilation, and tube feeding. Instead, the focus is on the goals of care. We also advocate naming a surrogate decision-maker, since the medical power of attorney is more flexible and more widely applicable than the living will.

START BY LISTENING

A change in function resulting from disease progression, hospitalization, trauma, or other reasons is an ideal opportunity to introduce the process of advance care planning.

The first step is to find out how well the patient and family understand the patient’s relevant medical conditions, and what their expectations, hopes, and concerns are. This listening phase can provide insight into the patient’s values and goals and how much the patient and family want to engage in these discussions.

In matters of health behavior (such as advance care planning), people change only when they are ready to change.12,13 Thus, we advise physicians to defer extensive discussions of values and goals of care until patients and families are ready to listen, hear, and talk about these topics (often, after a change for the worse in prognosis).

And it is a process. Advance care directives are most likely to be set up and followed if the patient and doctor discuss this issue during multiple visits, rather than if the physician merely hands the patient a packet of forms and information.14–16

CASE CONTINUED: A PEG TUBE REFUSED

Mrs. B. says that Mr. B. is in good health except for his memory: he does not have a serious condition such as diabetes, heart failure, or cancer. While Mr. B. was in the hospital, the hospitalist recommended placing a percutaneous endoscopic gastrostomy (PEG) tube, but Mrs. B. declined the recommendation because her husband had a living will that specified “no artificially or technologically supplied nutrition or hydration.”

At this point, Mrs. B. begins to cry. She has slept poorly because of his wandering. Also, her two daughters do not support her refusal of the PEG tube.

Comment. This brief conversation illuminates knowledge deficits in Mrs. B.’s understanding of Alzheimer disease and the circumstances in which the living will applies. Although one could argue that Mr. B.’s Alzheimer disease has advanced to the point that he is likely to die of a complication of that condition, he is not likely to die in the near future. If he is not considered by law and his physician to be terminally ill or permanently unconscious, a living will likely does not offer guidance about artificial feeding.

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