Working in the Dark: The State of Palliative Care for Patients with Severe Dementia

Article excerpt

We fail to recognize such common symptoms as pain, and the current standard of care often does not achieve the ends we expect.

We work in the dark-we do what we can-we give what we have. Our doubt is our passion and our passion is our task.

-Henry James, The Middle Years

Over the past thirty years, dedicated workers in palliative care have developed a unique philosophy that focuses on comfort and have worked to translate that philosophy into superb end-of-life care. Palliative care encourages patients to come to terms-at their own pace-with their disease and their prognosis (Doyle, Hanks, and MacDonald, I998). Patients are encouraged to participate in medical decisions and in their own psychological and spiritual care. They can do so because up to the final weeks and days of their lives most retain the ability to give family and caregivers directions about their preferences (Breitbart et al., I995; Pereira, Hanson, and Bruera, 1997; Weinrich and Sarna, I994). Unfortunately, patients with dementia face an entirely different situation, presenting a particular challenge to those who provide palliative care. Our failure to adequately address this challenge has been the cause of unnecessary pain and suffering (Bernabei et al., I998).

Palliative care for patients with dementia is different and difficult because clinical science in this area is even more limited than it is in the palliative care of other common and chronic diseases. We know very little about the symptom experience in the terminal stage of dementia and the best ways to manage that experience. Data suggest that we fail to recognize such common symptoms as pain, and the current standard of care often does not achieve the ends we expect (Parmelee, I996; Parmelee, Smith, and Katz, I993).

Palliative care for this population is also difficult because patients with dementia progressively lose cognitive function. Their relationships with others and their ability to participate in their care declines as their need for palliative care increases. They are often denied the opportunity to negotiate their status as "terminal" and to direct the development of a plan of care. Moreover, the ambiguity of advance directives and the difficulty of defining the "end stage" of dementia make it difficult for caregivers to look to the patient's wishes for guidance. Caregivers may find that this uncertainty also isolates them from the dominant bioethic that requires that they respect a patient's autonomy by means of substituted judgments, that is, by doing what they believe the patient would want.

The problems in providing palliative care for patients with severe dementia are fundamental. The solution lies in adopting a bioethic called narrative consensus and promoting research that fosters an evidence-based practice.


Mrs. L is an 8$ year-old woman with Alzheimer's disease who has been admitted to the hospital with the diagnosis of a fever caused by a urinary tract infection. She is receiving intravenous antibiotics and fluids.

This is the patient's third hospital admission in the past five months. Two previous admissions were for urinary tract infections and the other was an episode of aspiration pneumonia. She lives at home with her daughter and her dementia leaves her dependent in all basic activities of daily living. The daughter is not sure if her mother still recognizes her Mrs. L has no advance directive.

. While in the hospital, a disagreement has arisen. Mrs L's daughter is concerned that she has been eating very lite. She is co as well that her mother's gestures and vocalizations indicate that she is hungry. The staff believe that Mrs. L is agitated and requires treatment with antipsychotics.

The daughter appeals to the staff: "I know my mother This is not her agitation. When she's agitated, she doesnt do this; she yells and even will hit me. …


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