Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 13.3 Advance Care Planning for Dying with Dementia

Just as with other conditions, advance care planning gives patients, families, and professional caregivers a better chance to have the course unfold in the best possible way for each patient. If no one has thought through the merits of hospitalizing a patient with a fever, middle-of-the-night decisions made during a crisis will generally be to pursue the conventional course of calling the ambulance and starting the sequence of emergency room evaluation and hospitalization. If, instead, family and professional caregivers had thought through the merits, perhaps the disruption, fear, iatrogenic complications, and even the prolonged life would have been deemed not worth the effort.

The On Lok Senior Health Services, Jacob Perlow Hospice, and Bedford Veterans Hospital programs discussed above all have a strong dedication to advance planning for their dementia patients. They count it as a failure to have a patient's fever or other acute complication treated as an emergency. Instead, these are considered predictable events for which plans can be made.

Thinking ahead gives professional and family caregivers a plan for ways to support the patient and family in the patient's usual living situation. That decision might require having any number of specific plans in place:

The Washington Home in Washington, D.C., evaluated advance planning and discovered that documentation was "hit or miss." Many patients had good plans that were not readily available, while others had been overlooked in planning. The facility made it standard practice to put the current plan on the "bottom line" of the cover sheet (listing diagnoses and concerns), with a reference to the progress note that explained it, and to make review of the current advance plan part of the checklist of issues in the routine quarterly review. The repeat review showed that within one year, more than 90 percent of residents had a readily available advance care plan dealing with hospitalization, resuscitation, and surrogate designation.

The approaches to advance care planning for Alzheimer's patients are similar to those used for other patients (see chapter 5 for details). However, because Alzheimer's patients will become unable to make their own decisions, issues of competence may complicate discussions. Families need to do their best to represent the patient's own preferences whenever these are known. However, that can be a difficult task. Many families will know that "Mom would never have wanted to live this way," but they will not know what she would have wanted done, given that she is, in fact, living this way. Other families will be frankly overwhelmed by the caregiving or the costs that they face. Furthermore, as outlined below, society's conflicting and uncertain support for various courses of care leaves families uncertain as to how others will evaluate their choices. Nevertheless, clear plans and regular open discussions can prevent unnecessary emergency room visits, hospital admissions, or inappropriate care, so the best programs also make advance planning a central element.

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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].

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