Suppose you learn that your mother’s longstanding memory problems have been diagnosed as “mild dementia” by her neurologist. You are witnessing her deteriorating cognitive impairment and memory loss and so you meet privately with her doctor. You learn that your mother has Alzheimer’s. The physician counsels postponing this information to your parent because he knows that this diagnosis has been her greatest fear and it will devastate her. The doctor also thinks that your father should not be told until your mother learns of her prognosis.
You are bearing the weight of this horrible knowledge and are not sure if the physician’s recommendation is the best ethical decision. Do you reveal to your loved one the information that will lead her to despair? Or is it more ethical to allow her to believe she has escaped her worst fear?
The above dilemma was recently featured in the New York Times.
The Ethicist’s response was as follows:
“Obviously, you are in a horrific position where no outcome will be devoid of pain. I understand the desire to hide this information from your mother. But what the doctor is doing is wrong.
There are certain situations in which withholding specific knowledge is to the greater benefit of all involved (for example, there would be no reason to inform your dying mother about a fleeting romantic affair her spouse had 35 years before). This, however, is not one of those situations. This disease is going to dictate your mother’s relationship with reality. The window in which she can authentically communicate with those she loves is rapidly closing.
The fact that Alzheimer’s disease is your mom’s greatest fear validates just how essential those faculties are to the quality of her life; it’s possible she views the onset of Alzheimer’s to be a version of living death. This being the case, the dilemma must be viewed in the context of dying. If your mother had terminal cancer, would you hide that news from her? I assume you would not. You would want her to have the opportunity to initiate final, meaningful conversations with the people she values most. You would want her to have a chance to cogently look back at the life she has already lived.
The tragedy of Alzheimer’s is that it insidiously distances people from their consciousness; by withholding this diagnosis from your mother, the neurologist is effectively doing the same thing. Your mother deserves to know what’s going to happen to her, even if there’s nothing she can do to avoid the inevitable.”
My humble 2¢:
Understand that this ethical issue is extremely controversial even among academics.
For those of us with feet of clay, I am ethically bound to support the patient’s wishes. Although I respect the physician’s understanding of his patient’s mindset, I would urge the adult daughter to corroborate the doctor’s impressions. As a patient advocate, my preference is for open and direct communication with patients so that they are fully empowered to make autonomous and optimal decisions about their medical treatment. But my professional ideology is subordinate to supporting my client’s wishes – in this case, even if a patient prefers limited information.
Keep in mind, though, that the husband/father will likely become his wife’s caregiver. Caring for an Alzheimer’s patient during moderate to severe stages is arguably more traumatic for the caregiver than for the patient. It seems only right that he be informed of his wife’s diagnosis so that he can prepare for his new role, preferably with his daughter assisting him with strengthening the family’s support network and identifying programs and services which will help the family cope.
Also critical is that the mother document her wishes for future medical treatment before she loses capacity to make decisions. Often the patient advocate who is skilled in this area is the first person to broach this topic. Advance planning documents for all 50 states can be located here.
The nonprofit organization Compassion & Choices has extensive information for purposes of planning. One does not require an attorney to complete this process. Compassion & Choices also has a specific “Dementia Provision” available on its website.
An alternative to the Ethicist’s approach would be more nuanced: suggesting compliance with what treatment options are available but not attaching the Alzheimer’s label to the process. The daughter might mention her mother’s “slight” dementia and other specific circumstances as a rationale for creating some new life patterns. Find concrete examples of why the mother should make some new arrangements in her life. Discuss how others have coped with the disease.
Note that the doctor may have violated HIPAA by discussing his patient’s condition without her consent. It is a tricky area. He is in compliance if he determines that in his professional judgment such a conversation is in the best interest of the patient.
Ethical questions usually have no easy answers.