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By Jason Karlawish, MD Should a physician tell a person that he or she has been diagnosed with dementia? Adherence to the principle of respect for autonomy supports disclosure. Failure to disclose denies a person information that is vital to making decisions about future care and plans. It leads to deception and even lying. Thus, failure to disclose undermines the very foundation of human relations: trust and honest communication. But disclosure may not be in the patient's best interests. Families and clinicians can argue, on the principles of beneficence and nonmaleficence, that this information can harm a patient. The disease is progressive and ultimately fatal. There is little that slows or halts the progression. This argument concludes that it is proper to withhold the information, especially from patients who are depressed or prone to depression. An approach to working through this dilemma addresses three issues. First, the clinician should identify the concerns of the person requesting that the diagnosis not be disclosed. In general, family members worry that disclosure will either worsen or precipitate patient depression or that the patient is in denial and they wish to respect this denial. In this case, the clinician should then learn what is the family's understanding of their relative's mood and insight. The point of this exercise is to determine how well what they believe the patient is experiencing corresponds with what the patient actually is experiencing. The issue here is the overlap in constructs. Specifically, symptoms of what seems to be depression may actually be apathy or insight, and symptoms of what appears to be denial may actually be apathy. Core features of apathy are blunted emotional response, indifference, low social engagement, diminished initiation and poor persistence. These same symptoms can appear as depression. Core features of insight are awareness of problems with memory, doing tasks and concentration. These same symptoms can also appear as depression. Core symptoms of depression focus on mood: dysphoria, suicidal ideation, self-criticism, guilt, pessimism and hopelessness. Educating the family about the syndromes the patient is experiencing guides the value of disclosure. A patient who has insight arguably knows what is going on and deserves the virtue of kind, hopeful, but honest disclosure of the problem. In contrast, a patient with marked apathy may simply lack the cognitive capacity to appreciate his or her problem. Finally, a patient with marked dysphoria requires a clear plan to address his or her mood disorder. In such patients, a plan for disclosure should be sensibly integrated into a treatment plan for depression that includes both drug therapy and counseling. A second step in addressing requests to withhold the diagnosis from the patient is to teach the family that a well-functioning caregiver-patient dyad requires recognizing the caregiving roles and the intimacy between patient and caregiver. Failure to disclose the diagnosis can lead to an emotional distancing. Hence, diagnostic disclosure may actually be in the patient's and the caregiver's best interests. Finally, the case has been made that there is no point of disclosure because nothing can be done. Although we do not have a magic-bullet treatment for Alzheimer's disease, a lot can be done. Long before biomedicine took an interest in dementia as a disease, people still lived with it. Disclosure is a first step toward making meaning out of the experience of an illness. Patients have kept diaries and can participate in support groups. Insight can last far into the disease. There is also a clear value of nonpharmacologic interventions: education and skill training. These often begin with recognizing and naming the problem. They can improve both patient and caregiver quality of life and provide an opportunity for the patient to plan future care and accomplish unmet goals. |
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