homes, assisted living, group homes, or other milieu. It. Ladislav Volicer, MD, PhD, GeriatricResearch Education Clinical. Center, EN Rogers Memorial Veterans ...
Goals of care in advanced dementia: Comfort, dignity, and psychological well-being Ladislav Volicer, MD, PhD
Abstract Current changes of the health care system force all health care providers to reassess their activities. The emphasis has shiftedfrom providing any available treatment to careful evaluation of costs and benefits of different treatment strategies. Such an evaluation is especially important for management of diseases that become more common with age because our population is rapidly aging. One group of these diseases consist of Alzheimer s disease and related dementias, which affect a large portion of our elders. The comfort, dignity,and psychological well-being of those with Alzheimer s disease must also be considered.
Introduction Individuals with advanced dementia require support in all activities of daily living for an extended period of time even though they may be otherwise healthy. This support currently is provided often in a nursing home setting that is based on a medical model of care. Because of this setting, the main goal of care is prevention of death. This goal often leads to aggressive treatment of medical conditions or complications and does not take into account the underlying dementia. Such a treatment may pose a burden for the patient, who does not understand the need for diagnostic and therapeutic interventions, and may not have a long-term benefit because the treatment does not influence dementia-related deficits and dementia progression.
Discussion More recently, an increasing number of demented individuals are cared for in a social setting-either their homes, assisted living, group homes, or other milieu. It Ladislav Volicer, MD, PhD, Geriatric Research Education Clinical Center, EN Rogers Memorial Veterans Hospital, Bedford, Massachusetts; Departments of Pharmacology, Psychiatry and Medicine, Boston University School of Medicine, Boston, Massachusetts.
is recognized that advanced dementia should be considered a terminal condition because there is no effective treatment available and the demented individuals die of consequences of dementia, most commonly infections. Dementia predisposes to development of infections because progression of dementia leads to impaired immune function, decreased motor ability, incontinence, and swallowing difficulties. In addition, the effectiveness of antibiotic treatment is decreased in individuals with advanced dementia.) Therefore, the primary goal of care in advanced dementia should be similar to the goal of care in other terminal conditions: patient's comfort. Comfort should be assured even in very advanced individuals who have only a limited contact with their environment. When individuals with very severe dementia were evaluated by three neurologists, no patient was found to be consistently in a vegetative state. Therefore, even very advanced patients can perceive discomfort and pain. Comfort, however, is not the only goal of care. Dementia robs the individual not only of the ability to care for himself, but also decreases his ability to make rational decisions and to understand his environment. However, the individual still maintains his dignity, expressed by his remaining autonomous decisions, by vestiges of his personality, appearance, and his place in human society. We need to recognize two components of dignity. One is related to the ability to make autonomous decisions as stated by Emmanuel Kant.3 The second component is based on individual's place in human society and remains after the individual cannot make any decisions. This component remains even after death and motivates dignified treatment of dead human bodies. Maintenance of the first component of an individual's dignity requires honoring as many of his decisions as possible, e.g. desire to sleep late. Maintenance of the second component of an individual's dignity requires maintenance of proper appearance of the individual. A proper appearance may not only improve a patient's sense of self worth, but also may promote respectful attitude by the staff. Unfortunately, very often an indi-
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vidual's decisions may diminish the second component of the individual's dignity. For instance, the individual may decide to undress himself or to crawl on the floor. Thus, great sensitivity is needed to balance the respect for patient's remaining autonomy with maintenance of dignified appearance. Sometimes, staff and families may differ in their perception of proper balance and a frank discussion is needed to resolve the differences. There also may be a conflict between maintenance of an individual's comfort and dignity. Assuring comfort includes prevention of injury. Individuals with advanced dementia eventually lose their ability to walk independently, but are unaware of this limitation. They may attempt to get up from a chair or bed and walk, even though their gait is impaired. Use of restraints that prevent them from getting up may protect them from injury but decreases their dignity. Fortunately, newer types of equipment (low beds and foam recliners) may eliminate the need for restraint in these individuals. Similarly, individuals may refuse to wear dentures or glasses because they find them uncomfortable, but the family members who are used to their loved ones wearing these appliances may find that the change in appearance decreases their dignity. Some interventions clearly decrease both comfort and dignity. Intravenous therapy or use of feeding tubes increase the patient's discomfort and commonly require use of restraints to prevent the patient from removing medical appliances. In addition, tube feeding deprives the patient of enjoyment derived from tasting the food and interaction with staff during the feeding process. Tube feeding also may cause numerous complications and increases the likelihood of aspiration.4 Nutrition may be provided by hand feeding in a dignified manner until the terminal stage of dementia when patients cannot perceive hunger or thirst. It is important, however, to maintain a moist mouth at all times even if a patient is unable to swallow liquids. Antibiotic treatment is not necessary to assure comfort in patients with pneumonia or with other systemic infections.5 Maintaining comfort and dignity is a necessary component of care for individuals with advanced dementia but does not assure optimal quality of life. Powell Lawton6 described four components of quality of life: perceived quality of life, behavioral competence, objective environment, and psychological well-being. It is difficult to evaluate quality of life in individuals with advanced dementia, because they cannot report on perceived quality of life and their behavioral competence is destroyed by dementia. However, there are still two components that can be influenced. The objective environment can be improved by architectural design, which takes into consideration needs of individuals with advanced dementia, providing
home-like atmosphere and safety. These features can be satisfied best by providing care in a dementia-specific unit, which also eliminates conflicts between cognitively intact and demented residents.7 The second component that can be influenced is psychological wellbeing. Because demented individuals cannot report their feelings, the psychological well-being has to be assessed by observation. Although Positive and Negative Affect were suggested as the main components of psychological well-being,8 we recently have proposed that psychological wellbeing in individuals with advanced dementia has three axis: happy-sad, calm-agitated, engaged-apathetic (Volicer et al, in preparation). An individual who is happy, calm and engaged can be considered to have a high level of psychological well-being. The crucial intervention, which may improve all three dimensions, is involvement in a meaningful activity. A meaningful activity may decrease agitation, improve mood and prevent apathy. This activity should be built into the daily life of demented individuals and not be a time-limited program. Of course, it is also important to maintain dignity and to prevent discomfort that may cause agitation. To improve psychological well-being of individuals with advanced dementia, we need to switch the emphasis of care from the medical to social model and from aggressive medical interventions to palliative treatment and hospice care. Palliative care approach provides not only better care but also saves health care resources.9
References 1. Fabiszewski KJ, Volicer B, Volicer L: Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. JAMA. 1990; 263: 3168-3172. 2. Volicer L, Berman SA, Cipolloni PB, Mandell A: Persistent vegetative state in Alzheimer's disease: Does it exist? Arch.Neurol. 1997; in press. 3. Hill TE: Dignity and Practical Reason, Ithaca and London:Cornell University Press, 1992; pp. 47-50. 4. Pick N, McDonald A, Bennett N, Litsche M, Dietsche L, Legerwood R, Spurgas R, LaForce FM: Pulmonary aspiration in a long-term care setting: Clinical and laboratory observations and an analysis of risk factors. J. Am. Geriatr Soc. 1996; 44: 763-768. 5. Hurley AC, Volicer B, Mahoney MA, Volicer L: Palliative fever management in Alzheimer patients: quality plus fiscal responsibility. Adv. Nurs. Sci. 1993; 16: 21-32. 6. Lawton MP: The varieties of well-being. Exper Aging Res. 1983; 9: 65-72. 7. Volicer L, Simard J: Establishing a dementia special-care unit. Nurs. Home Econ. 1996; 3 (1): 12-19. 8. Lawton MP, Van Haitsma K, Klapper J: Observed affect in nursing home residents with Alzheimer's disease. J. Gerontol.[B] 1996; 51B: P3-P14. 9. Volicer L, Collard A, Hurley A, Bishop C, Kern D, Karon S. Impact of special care unit for patients with advanced Alzheimer's disease on patients' discomfort and costs. JAGS. 1994; 42: 597-603.
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