Under current federal regulations (which some groups are trying to change), the Medicare hospice benefit (which is described at length in chapter 9) requires that a patient have a prognosis of less than six months. However, as explained in chapter 1, prognostication is quite uncertain for most dying people, and Alzheimer's is no exception. End-stage Alzheimer's patients can still live for an unpredictably long time because they do not develop the kinds of infection that commonly lead to death among these patients.
Because patients live for a long time with increasing disability, families (and, often, professional caregivers) find it hard to know when a person is in the last phase of illness. The Alzheimer's Association offers educational programs for families advising them of their right to choose hospice care. Medicare's hospice benefit is available to persons who live in nursing facilities provided that they are not relying on Medicare to support their nursing home costs and a hospice program has worked out the arrangements with the nursing facility. Enhancing the use of formal hospice programs is one direction for improvement activities for advanced dementia.
Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases (Stuart, 1994) from the National Hospice Organizations recommends the following clinical criteria:
Exactly how to put these together or find other criteria is an ongoing challenge. A retrospective chart review of end-stage Alzheimer's patients at the Bedford Geriatric Research and Education Clinical Center (GRECC) (McCracken and Gerdsen, 1991) found that nurses generally recognized impending death. Their notes describing the dying process spanned from 5 to 38 days ahead of death.
The Bedford team has developed five levels of care (Innovations, 1999), an approach that tracks where patients are in the disease progress and helps to identify when patients are nearing the end of life. According to researcher Ann Hurley, RN, DNSc, "Each level of care is not only defined by what medical interventions are not applied, but by intensive care nursing interventions that are applied" (Innovations, 1999). Working with the unit physician, the nursing team negotiates a care level, which is then recommended to the family member. During a family conference, the family considers the recommendation-but is not forced to accept it. At this meeting, participants discuss advance care planning issues, such as the patient's more immediate prognosis, or the decisions the surrogate will need to make. Family members may have high expectations for the outcomes of medically aggressive treatment and may need more information about actual programs before making a decision.
The levels of treatment used at the GRECC are:
Despite the unpredictable course of the disease, the prognosis is usually clear enough for the patient who has lost weight, has low albumin, is not eating or is aspirating often, no longer speaks, and has taken to bed. These patients rarely live more than a few months, and their families can clearly benefit from supportive and palliative services. For instance, the program at the Bedford Veterans Hospital is set in a special care unit. Approximately 3,000 such units exist in nursing facilities and hospitals around the country. Groups aiming to try PDSA changes might begin by trying a few changes with a few patients in special care units, perhaps by working on advance care plans with five families and helping them understand crises that are likely to occur and how to plan for them. The group could then look at whether this approach improved family/proxy confidence or decision-making ability-and build another change cycle based on those results.
13.2.1 Case Study - On Lok Senior Health Services
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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 ].