Hospice, Alzheimer Patients and

"Dying the good death" is a care-giving goal, regardless of the presumed immediate cause of death, site(s) of the dying process, or cultural and ethnic differences among the dying person, their family, the community, and the health care providers. At the close of life, the patient, family members, and clinicians face decisions regarding the degree of intensive medical care to be provided for treatment of diseases, withdrawal of invasive interventions, initiation of hospice, and treatment of a range of chronic medical conditions. A hospice philosophy or care provides palliative care with a goal of maximal comfort and not maximal survival of the person. In the beginning, hospices served mostly persons with advanced cancer who decided to forgo further aggressive therapies, but the success of the hospice movement led to inclusion of persons with other life-limiting conditions, such as patients with heart disease, pulmonary disease, and dementia. Despite the recommendation made sixteen years ago that hospice care is appropriate for individuals suffering from advanced dementia, a survey of hospice programs showed that less than 1 percent of hospice patients had primary diagnosis of dementia and seven percent had dementia as a secondary diagnosis in addition to having cancer.

Dementia of the Alzheimer type (DAT) is an acquired, progressive, life-limiting disorder for which the biggest risk factor is living to an old age. According to U.S. Census data from 1900 and projections through 2050, people over age eightyfive—the category at highest risk for developing dementia—constitute the most rapidly growing segment of the population. Between 2.5 and 4 million Americans are already afflicted with DAT and evidence suggests that about 47 percent of people age eighty-five and older may develop DAT, meaning that these numbers will continue to rise as the population ages.

Persons with DAT have both a chronic and terminal illness and ultimately will become completely dependent in all aspects of activities of self-care. Cognitive deficits in dementia occur in several spheres including memory impairment, aphasia, apraxia, agnosia, and disturbance in executive function. Although some symptoms of DAT may be slowed by medications, there is no cure for DAT and ultimately the person will die either from a complication of DAT or from another age-related disorder. In either case, because new discoveries in medical science have the capacity to extend the typical dying process without restoring cognitive capacity or physical function, palliative care should be considered to provide comfort-promoting interventions and relief from aversive symptoms.

Hospice Care and DAT

Hospice care is an organized method of providing palliative care. Care can be provided in a hospital, nursing home, community setting, or as a free-standing program, but most hospice care is provided in homes. Making the hospice philosophy operational directs care-giving activities to strive for maximal comfort and not maximal survival of the person.

Persons suffering from DAT often develop behavioral problems in which different symptoms appear throughout the progressive stages. When patients with terminal cancer receive hospice care, pain relief is a focus of care. For persons with DAT, management of the challenging behaviors is a focus of care. Regardless of the pathological processes involved, both pain and behavioral symptoms cause suffering; pain can be managed for persons with terminal cancer and behavioral symptoms can be managed for persons with DAT. A two-year prospective cohort study found that caring for patients with advanced DAT on a Dementia Special Care Unit (DSCU) using a palliative care philosophy resulted in less patient discomfort and lower health care costs than when care was provided on a traditional long-term care unit. When patients with DAT are allowed to receive palliative care, their surrogate decision makers reject care that extends the dying process, and patients receive "high-touch" care provided by interdisciplinary health care team members who strive to promote patient comfort. The focus of high-touch care is not the withholding of invasive aggressive interventions, but providing specific, individualized, intensive nursing interventions.

Advance care planning is necessary to assure that individuals receive the types of health care they desire. Everyone should have an established health care proxy who would make a decision regarding health care if an individual becomes incapacitated. If a person has not completed the health care proxy process before the diagnosis of DAT, the person should select a proxy and complete required legal forms as soon as possible. Early in the dementia process, persons have the cognitive capacity to make future plans, including choosing who should represent their health, legal, and financial affairs. If there is no health care proxy and the person no longer has the capacity to select one, the health care team should work with the surrogate decision maker to establish an advance care plan so that end-of-life decisions can be made in advance of crises.

Treatment Options

There is a palliative care program for veterans with advanced DAT at the Edith Nourse Rogers Memorial Veterans Hospital in Bedford, Massachusetts. The Bedford program has two central components: advance care planning and comfort care. Family members meet with the interdisciplinary health care team to discuss therapeutic options, explore previous wishes of the patient and their relevance to the veteran's current condition, and establish an advance care plan. The advance care plan specifies interventions to promote quality of life and comfort, and identifies aggressive medical interventions to be avoided. Aggressive medical care includes invasive diagnostic tests and treatment of coexisting medical conditions including transfer to an acute-care unit if indicated, and tube feeding if normal food intake is not possible. Treatment limitations that are more consistent with a comfort approach to end-of-life care include:

• • no cardiopulmonary resuscitation;
• • no transfer to an acute-care setting for technological interventions, which excludes intravenous therapy but includes transfer for an intervention required to prevent discomfort, such as to repair a fractured hip;
• • no invasive medical or intravenous antibiotic treatment of intercurrent infections, but antipyretics, analgesics, and oral antibiotics may be prescribed for symptom management to treat discomfort; and
• • no artificial feeding, which precludes the use of long-term feeding tubes.

Infections and eating difficulties are two inevitable consequences of terminal DAT. Changes in immune function, incontinence, decreased mobility, and propensity for aspiration of food, liquids, and respiratory secretions predispose persons to life-threatening infections. Infections are the most frequent cause of death in the terminal stage of dementia. Even excellent intensive nursing care and high vaccination rates cannot eliminate the influence of risk factors that cause development of many infections, relapse after successful treatment, and infections that gradually become more difficult to treat. Because a life-threatening infection is highly probable in advanced DAT, clinicians should be prepared to help surrogates make decisions about palliative treatment options.

Under the leadership of Ladislav Volicer (who initiated hospice care for persons with dementia), the Bedford team conducted a series of studies to examine "treatment success," which has to be weighed against the risk benefit ratio of management strategies and the likelihood of successfully achieving positive outcomes for individual persons. Study one found no difference in the mortality rate for patients with severe DAT who received antibiotic therapy versus those who received palliative care—suggesting that aggressive treatment did not alter the survival of patients with severe DAT. Study two found that managing infections on a DSCU results in lower discomfort, even for patients treated aggressively.

Study three developed and tested a predictive model for short-term survival and found that older age and higher severity of DAT at the time of the infection, palliative care, and admission for longterm care within six months prior to the febrile event were positively associated with the likelihood of dying within six months following onset of a fever. Clinicians can consider this predictive model when making the decision whether or not to certify patients with DAT for Medicare hospice coverage. Study four found that an infection did not have its own effect on DAT progression; disease severity increased in most patients, but more so in patients who received aggressive medical treatment. Providing palliative care for infections: (1) prevents patients from undergoing invasive diagnostic workups and treatments, does not accelerate the progression of DAT; (2) is associated with lower observed discomfort; (3) is not associated with higher rates of mortality for more advanced patients; and (4) also conserves scarce health care resources.

Instead of aggressive "high-tech" care, strategies to prevent infections or decrease their severity should be provided by:

• •offering meticulous nursing care to keep the skin clean and dry despite incontinence;
• • avoiding urinary catheters;
• • instituting therapy programs striving to maintain ambulation as long as possible; and
• • minimizing aspiration of food and liquids through the adjustment of diet texture and by using thickened liquids and physiological positioning.

During the course of the illness, the main eating difficulties are food refusal and choking. Many late-stage patients also forget how to chew and swallow and the terminal stage is marked by swallowing difficulty due to brain pathology. Decreased appetite causing food refusal may be a symptom of depression or a sign of the dying process as the body goes through a physical shutting down. Using skillful hand feeding techniques with pleasing to the taste caloric-rich foods in a composition to prevent choking prevents the use of feeding tubes. There will come a time, however, when serious eating problems will lead to the person with DAT being unable to eat or swallow. At that time, the person may be kept comfortable by offering a single ice chip at a time under the tongue or in the cheek or by artificial saliva spray.

End-of-life care should be characterized by a sense of contentment and ease as the dying person makes the transition to death. For the very vulnerable group of persons with DAT, many health professionals believe foregoing aggressive interventions, which do not ultimately result in improvement of an underlying dementia and may cause discomfort, is more compassionate than striving to extend survival at all costs.

See also: Hospice in Historical Perspective; Saunders, Cicely

Bibliography

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Hurley, Ann C., R. Bottino, and Ladislav Volicer. "Nursing Role in Advance Proxy Planning for Alzheimer Patients." CARING Magazine (August 1994):72–76.

Hurley, Ann C., M. A. Mahoney, and Ladislav Volicer. "Comfort Care in End-Stage Dementia: What to Do after Deciding to Do No More." In E. Olson, E. R. Chichin, and L. Libow eds, Controversies in Ethics in Long-Term Care. New York: Springer, 1995.

Hurley, Ann C., B. Volicer, and Ladislav Volicer. "Effect of Fever Management Strategy on the Progression of Dementia of the Alzheimer Type." Alzheimer Disease and Associated Disorders 10, no. 1 (1996):5–10.

Hurley, Ann C., B. J. Volicer, M. A. Mahoney, and Ladislav Volicer. "Palliative Fever Management In in Alzheimer Patients: Quality Plus Fiscal Responsibility." Advances in Nursing Science 16, no. 1 (1993):21–32.

Mahoney, E. K., Ladislav Volicer, and Ann C. Hurley. Management of Challenging Behaviors in Dementia. Baltimore, MD: Health Professions Press, 2000.

Rempusheski, V. F., and Ann C. Hurley. "Advance Directives and Dementia." Journal of Gerontological Nursing 26, no. 10 (2000):27–33.

Volicer, B. J., Ann C. Hurley, K. J. Fabiszewski, P. Montgomery, and Ladislav Volicer. "Predicting Short-Term Survival for Patients with Advanced Alzheimer's Disease." Journal of the American Geriatrics Society 41 (1993):535–540.

Volicer, Ladislav, and L. Bloom-Charette. Enhancing the Quality of Life in Advanced Dementia. Philadelphia: Taylor & Francis, 1999.

Volicer, Ladislav, A. Collard, Ann C. Hurley, C. Bishop, D. Kern, and S. Karon. "Impact of Special Care Unit for Patients with Advanced Alzheimer's Disease on Patients' Discomfort and Cost." Journal of the American Geriatrics Society 42 (1994):597–603.

Volicer, Ladislav, and Ann C. Hurley. Hospice Care for Patients with Advanced Progressive Dementia. New York: Springer, 1998.

ANN C. HURLEY LADISLAV VOLICER