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.

For relatively healthy older adults

Figure 2 is the algorithm for older patients who are expected to live at least 5 years, ie, who are relatively healthy and functional. Patients with little or no interest in advance care planning can be asked about it annually, or sooner if their medical condition changes. Patients with limited interest can be given written information, specifically living will and medical power of attorney documents recognized in their state. Patients more open to advance care planning can be offered a values history form (Table 1), Web sites, and educational materials, with a plan to discuss them at future appointments.

Periodic reevaluation of values and goals of care is important. Patients may assert that particular interventions (eg, a PEG tube or dialysis) are “worse than death” when they are healthy, but they may change their views over time.²¹ Additionally, although a recent hospitalization or a decline in function may predispose patients to want to limit life-sustaining treatments, they may return to their earlier values and wishes a few months later, particularly if their medical condition stabilizes. ²⁰ Values and decisions should be reassessed not only when medical conditions deteriorate, but also when they improve.

For chronically ill patients

Figure 3. Algorithm for patients with a life expectancy of less than 5 years, or a new diagnosis, evidence of progression of disease, or a change in condition (decreased function or hospitalization).

Figure 3 is the algorithm for patients who are expected to live less than 5 years, owing to chronic diseases. The starting point is to ascertain the patient’s understanding of his or her condition, as well as expectations and concerns. The discussion of prognosis needs to be honest and balanced, offering both a current treatment plan that “hopes for the best” and alternatives that “plan for the rest” if the condition should decline despite treatment. Alternate plans for older adults with advanced disease should emphasize function and quality of life and may include referral to community resources.

Caregiver stress is important to identify and address, since caregivers often neglect themselves.^40–42

For terminally ill patients

Figure 4. Algorithm for patients with a life expectancy of less than 1 year, based on progression of one life-threatening disease, or progressive limitation in function and life expectancy by multiple comorbidities.

Figure 4 depicts the approach for seriously ill patients with very limited life expectancy, ie, less than 1 year).³⁷ These patients may be very functionally limited, with a variety of physical and psychosocial difficulties and a limited social network.

In this situation, patients and families need information about community resources that can assist them in the home. Some older adults with cognitive impairment may be exploited or neglect themselves, and referral to an adult protective services agency may be needed.

Treatment burden, particularly due to multiple prescribed medications, may be high and should be reassessed in light of the goals of treatment. Polypharmacy reduction is especially important at this stage in the illness, since the goals of care may be different than when the medications were prescribed.

Physical or psychosocial symptoms may be the cue to bring up the topic of palliative care. If the patient is expected to live less than 6 months, hospice referral is appropriate. With either palliative care or hospice, the focus of attention shifts explicitly from curing the disease to managing symptoms, and from the patient to the patient-family dyad. Interventions such as CPR and ventilatory support should be discussed and information from Table 2 provided to the patient and family.

Complete advance care planning incorporates taking a values history, estimating life expectancy, determining physical, psychosocial and spiritual needs, clarifying treatment goals, and estimating manageable treatment burden. Offering statistics on CPR and providing state-specific living will and medical power of attorney documents are important but are only one facet of effective advance care planning. In fact, shifting the emphasis of advance care planning from statistics and forms to values and goals of care may help in developing a more comprehensive care plan.

Goals of care range from curing the disease (with aggressive therapy, which may be burdensome) to simply improving function or decreasing pain. In the latter case, one may be able to discontinue some of the patient’s drugs, utilize medical and community resources more effectively, and better meet the patient’s needs.

Woven through all these discussions should be reassurance that the plan can be revisited and possibly revised, and that the physician will be there to help with those decisions.

References

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