SPECIAL CLINICAL SITUATIONS

    Several clinical conditions and treatment choices commonly arise in end-of-life situations and serve as examples of frequent controversy. They also represent examples of the importance of recognizing medical futility and appropriately providing palliative care.

DEMENTIA

    End-of-life care decisions in Alzheimer’s and other dementia patients may be particularly difficult because the patient’s physical health may be otherwise relatively good; dementia is typically slowly progressive, variable and unpredictable in course; and the illness may impact individual patients and families quite differently, dependent upon the specific manifestations of the disease and the social support systems available to patients. Though slow and progressive, dementia is a terminal disease and has characteristic symptoms that indicate when the end of life is near, including:(1),(2),(3)

Family members, particularly the patient’s spouse, may struggle to help the patient maintain some quality of life, yet such efforts predictably become increasingly unsuccessful and may be associated with guilt and frustration. It becomes extremely difficult for a dedicated, often physically and emotionally exhausted family member/caregiver to also serve as an objective, effective healthcare surrogate. In dealing with patients with Alzheimer’s disease, Doctors Karlwish, Quill and Meier(4) recommend working with the patient’s family through a “consensus-building process, grounded in dialogue among proxy, other close family members, physicians and immediate caregivers.” The authors emphasize an evolving dialogue, in which surrogates are asked to verbalize the patient’s conditions and perceived wishes, guided by the introduction of appropriate questions that should be considered in advocating for the patient at each stage of the process, and centered around which goals can and cannot be met. Ultimately, the family must understand the patient’s condition and, through empathy, realize that the patient with end- stage dementia has lost what most individuals would consider acceptable quality of life and would rarely, if ever, desire life-prolonging treatment.

^[1] Peck A, Cohen CE, Mulvihill MN. Lone-term enteral feeding of aged demented nursing home patients. J Am Geriatric Soc 1990;38:1195-1198.
^[2] Reisberg B, et. al. The global deterioration scale for assessment of primary degenerative dementia. Am J Psychiatry 1982;139:1136-1139.
^[3] Luchins DJ, Hanrahan P. What is appropriate health care for end-stage dementia? J Am Geriatric Soc 1993;41:25-30.
^[4] Karlawish JH, Quill T, Meier DE. A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med. 1999;130:835-840.

 

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