Bioethics Discussion Blog: Alzheimer's Disease, Advance Directive and Feeding

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Sunday, June 03, 2007

Alzheimer's Disease, Advance Directive and Feeding

Back on October 29, 2005, I wrote a post describing an elderly Alzheimer's patient with no other medical complications and who was aware of her environment but who years earlier when she had the mental capacity to make decision stated that she didn't want medical nutrition and hydration. A feeding tube was placed a few years earlier because of difficulty swallowing during a prolonged respiratory infection, with the intention that it would be temporary but the feeding tube still remained in the patient. The issue was whether removal of the tube now would contribute to her death and whether it should be removed.

On this current post, I would like my visitors to consider an elderly Alzheimer's disease patient who appeared to the caregivers that she was really not aware of her environment except when food or liquid is placed between her lips she appears to accept the feeding and swallows. The ethical issue is that years ago when she had capacity to make medical decisions she wrote in an advance directive that if she had an irreversible disorder that left her unaware of her family or others and couldn't care for herself, she would not want to be fed and should be allowed to die. She is tolerating oral feedings but should they be stopped in view of her past directive?

The ethical issue in both cases is whether if a patient rejects food and fluid by tube or even by mouth under some stated conditions in an earlier advance directive, should that request be followed? Should the patient's prior directive against being give nutrition be questioned either by trying to communicate with the demented person or by following the decision of a current legal surrogate? Should there be a difference between feeding a patient by tube or feeding the patient orally, if the patient doesn't resist the feeding? If a patient in end-stage Alzheimer's now appears to accept food and fluid orally, should that behavior trump any previous directive to the contrary? Is the currently demented person the same person (in terms of personhood) who signed the original advance directive? If not, should the advance directive be ignored?

Has any of my visitors had similar issues arise in the management of their own family member with Alzheimer's? ..Maurice.

4 Comments:

At Friday, June 08, 2007 4:03:00 PM, Anonymous Moof said...

Dr. Bernstein, I can see that I've missed some very engaging posts while I've been busy and unable to do a blogrun ...

My mother passed away 10 years ago this past May 7. She'd had Alzheimer's for a full decade before she died. She never left "advance directives" ... and frankly, I think she would have been horrified if someone had ever approached her with the alternatives we're asked to consider today.

Had my Mum ever told any of us children that she didn't want to be kept alive if she developed dementia ... that she wanted us to let her die of dehydration or starvation, my brothers and I would have done 2 things:

1) We would have tried to reason with her. I'm certain that she would not have followed that same request from her own mother, and I'm also certain that she would understand what a burden she was placing on her children.

2) If she proved intractable, we would "Oui, Maman" her, and then forget it. We would then keep her with us as long as we could.

If she's not aware, then no harm is done ... and if she is aware, then we shouldn't be considering letting her die.

Were I to discover that I have Alzheimer's, I hope that I would have the courage to deal with the problem myself - and not leave my family with a morass of ethical nightmares.

One of the ongoing polls I'm conducting on my blog is:

"Is Suicide Ok When Faced With Alzheimer's?"

Out of 182 votes to date, 47% say yes, 30% say no, and 24% are undecided.

Not a great option, certainly, but perhaps better than leaving to dirty work to someone else.

 
At Sunday, June 10, 2007 6:21:00 AM, Anonymous Ann said...

I would like to do this!!!

 
At Saturday, June 16, 2007 7:26:00 PM, Anonymous Anonymous said...

My mother has been suffering with Alzheimer's disease for the past 2-3 years. In early April of this year, she had a stroke and brain damage due to a subsequent fall, and now she resides in a nursing home. She has essentially no speech or language, is very angry and frustrated, refuses to eat or drink much of anything, and is making very little progress in physical, occupational and speech/language therapy. She cannot walk, needs help with all activities of daily living and we're not sure where stroke symptoms and Alzheimer's symptoms begin and end. She is exhausted much of the time and prefers to sleep much of the day. Since she is not eating and continues to lost weight, we are soon going to have to make the decision about whether to insert a feeding tube. As I consider this alternative, I wonder whether it is more ethical to allow her to die, which is what I believe she wants to do, or to insert the feeding tube and prolong her life and her anguish for a period of time. My father is the one who must ultimately make the decision about the feeding tube. Mom has indicated that she would not want this, but when push comes to shove, how do you just let someone you love "starve to death?" My head tells me to do one thing (let her die, as I believe she wants) and my heart tells me to do something else (I don't want to lose her). How does one make this tough decision?

 
At Saturday, June 16, 2007 8:46:00 PM, Blogger Maurice Bernstein, M.D. said...

Anonymous, you can make the tough decision by remembering that in decisions such in this scenario, it is what the patient when she had the capacity to decide would have wanted and it is not what you yourself or someone else would want.This is called "substituted judgment". It is a decision made by a surrogate but based on the patient's expressed wishes.

It is more difficult when there is absolutely no information available about what the patient would have wanted. In that case, however, the decision is still oriented toward the patient and no one else. One must decide what an average person who found themselves in such a state with such a prognosis would request. It should always be decided with the patient's best interest paramount and this is called a "best interest" decision.
Physicians who must act on such a decision usually need to communicate about the matter with more than one person who is familiar with the patient to understand something about the patient's known interests,if that is possible.

However, any person who has been designated as a legal surrgate in a Durable Power of Attorney for Healthcare document as part of an advance directive, literally speaks for the patient and a decision made by such a person should be accepted by the physician unless there is evidence of secondary gain or frank conflict of interest by that person making such a decision.

This is the current ethical consensus of regarding medical decision-making when the patient is unable at the time to speak for themselves. ..Maurice.

 

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