Advance care planning: Beyond the living will

Cleveland Clinic Journal of Medicine. 2009 May;76(5):276-285 | 10.3949/ccjm.76a.07002

May 1, 2009|Cleveland Clinic Journal of Medicine

Barbara J. Messinger-Rapport, MD, PhD;Elizabeth E. Baum, MD;Martin L. Smith, STD

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.

CASE CONTINUED: RELIEVING CAREGIVER STRESS

Returning to Mr. B., your first goal is to address care issues, including caregiver stress. Skilled services in the home are appropriate for him at this time (and Medicare will pay for them) because he is still homebound. These services could include physical therapy, occupational therapy, and speech (swallowing) therapy. A home care agency may also provide an aide for a few weeks to assist with bathing and other personal needs.

You strongly recommend that the family (including both daughters) participate in the Alzheimer’s Association educational programs. You recommend that Mrs. B. locate an adult day care program now so that when Mr. B. completes his home therapy course and is no longer homebound, he may attend. Day care would provide a therapeutic environment for him and respite for her.

You request that the home care agency provide a social worker to advise her on community resources. Meta-analysis suggests that structured, multicomponent interventions with caregivers of demented patients reduce several types of caregiver burden and delay institutionalization.²⁶

He improves with conservative measures

Three weeks later, Mr. B. is sleeping better and has stopped wandering. However, he dislikes the thickened liquids required by the dysphagia diet and has lost another 2 pounds. If his beverages are not thickened, he coughs profusely when he swallows. His daughters are still pressuring Mrs. B. for a PEG tube; one of them has angrily asserted that the doctors are going to allow her father to die.

You explain the burdens of PEG tubes: surgical risks, continued aspiration, disrupted bowel habits, the risk of the tube being accidentally or intentionally dislodged by the patient, and special binders (which may be uncomfortable) or restraints (which may cause further functional decline) that may be necessary to prevent this complication.

You request that the speech therapist work with the patient more aggressively in the use of swallowing techniques such as the chin tuck, which may be at least as effective as thickeners in preventing both aspiration pneumonia and dehydration.²⁷ The therapist will need to include Mrs. B. in these sessions, since she will be Mr. B.’s coach at mealtime.

With more aggressive speech therapy, the patient’s weight stabilizes over the next 4 weeks. He is in day care 3 days a week, and Mrs. B. is more rested and relaxed.

Cardiopulmonary resuscitation

You continue the advance care planning discussion and suggest that if Mr. B. aspirates, is hospitalized again, and declines further care, it would be helpful to delineate instructions for resuscitation. Right now, although his Alzheimer disease is advanced, he is not clearly terminal. Thus, his living will does not strictly apply and provides limited guidance about intubation, cardiopulmonary resuscitation (CPR), or medically supplied nutrition and hydration. However, because Mrs. B. is his agent in the medical power of attorney, this document enables her to make a wide spectrum of treatment decisions on his behalf.

Mrs. B. asks about her husband’s prognosis and why CPR would not be helpful.

Comment. Further discussion with her could be guided by an estimate of Mr. B.’s prognosis. Function-based tools^28,29 may also be useful. For example,^28,30 an 80-year-old man with high functional status might have a life expectancy of more than 10 years. Mr. B., with multiple medical problems and declining function, would have an estimated life expectancy of approximately 3 years. Even without specifically categorizing function, impaired cognition by itself predicted a shorter life expectancy in population-based studies.^31,32

Regarding CPR, patients and families may overestimate successful outcomes. A recent study³³ of 10 years of outcomes of in-hospital cardiac arrest found that only 6.6% of patients survived to discharge. The average age of the survivors was 59 years, and fewer than half of them survived 3 years after cardiac arrest. In eight studies of CPR outcomes in nursing homes,³⁴ three studies had no survivors, and all but one study had a survival rate below 5%.

You encourage Mrs. B. to communicate further with her daughters to discuss resuscitation status and invite her daughters to accompany her to the next appointment. The family could review excerpts of Your Life, Your Choices (Table 1)³⁵ or Let Me Decide (Table 2)³⁶ to see how they think Mr. B. would have answered the questions in these documents, had they been discussed directly with him earlier. The family could also consider, now or in the future, filling out Physician Orders for Life-Sustaining Treatment. This is a form that translates general preferences, including those in the living will, into a set of physician orders.³⁷

PROVIDING APPROPRIATE CARE, NOT LIMITING TREATMENTS

In the case of Mr. B., as in many situations encountered with older patients, written advance directives provide little help or guidance. Instead, we recommend a model of advance care planning that takes place during multiple office visits over time, and that maintains a focus on providing appropriate care rather than on limiting life-sustaining treatments. We recommend providing estimates of prognosis and CPR outcomes when the family appeares ready to hear them. This approach should result in a care-oriented process while moving the family towards decisions regarding artificial feeding and CPR.

Figure 2. Algorithm for patients with a life expectancy greater than 5 years, or no comorbidities causing progressive functional limitation.

In Figures 2–4, we summarize this approach to advance care planning in three flowcharts.

All patients, particularly those unwilling or unable to participate in advance care planning, are encouraged to identify one or more surrogate decision-makers and articulate how much flexibility that person should be given in important health care decisions. The medical power of attorney can be activated any time the patient lacks decision-making capacity and deactivated when decision-making capacity returns.^38,39

As in the case of Mr. B., a tailored approach to advance care planning requires clinicians to estimate life expectancy (more than 5 years, less than 5 years, or less than 1 year) and to determine the patient’s and the family’s readiness to focus on a values-oriented and goal-oriented care plan. Some patients are not receptive to advance care planning, and clinical time and effort are optimized by providing the right amount of information to patients when they are ready to receive it.

References

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