Dementia and Advance Directives

Recently I attended the National Nursing Ethics Conference at UCLA.  The participants were primarily registered nurses but there were also a few chaplains, social workers and ethicists.

One of my favorite techniques for both teaching and learning about ethics is the use of case studies so I was thrilled when they had several in the breakout sessions. There is one in particular that I wanted to share with you. It began with a video but I do not know if it is available so I will describe it here.

The mother of two daughters has Alzheimer’s disease and resides in a nursing facility. She requires care for incontinence and needs to be dressed and fed by caregivers.  She is very disoriented but her blank stare is at times punctuated by her smiling face when given a spoonful of ice cream or being presented with a stuffed animal.

Her daughters are very clear that their mother told them that she would “never want to live like this” and if she was unable to feed herself she would not want to be fed. They express frustration that the caregivers are feeding her because this is something that she would never want and would find it as an affront to her dignity.  She had no written advance directive for health care.

The nursing facility for many reasons, not the least of which is the moral distress that the front line caregivers would experience, will not follow the daughter’s directive as to their mother’s wishes.  The nurses also point out that their mother seems to enjoy the foods she is fed, such as ice cream, and does not push the feeding away. They inquire why the daughters, if they feel this way, wouldn’t want to take mom home and follow her wishes — they reply that they couldn’t bear to watch her die but suggest that there ought to be a facility where she could be placed so that her wish not to be fed could be carried out.

It is not unusual for a competent adult, anticipating the possibility of dementia, may write in an advance directive that he or she would not want a feeding tube if no longer able to take food orally.  But, this situation is obviously quite different.

The nurses in the breakout room were familiar with ethical principles; many of them serve on ethics committees and have advanced education in the field.  All were aware of the principle that respect for autonomy requires that the wishes of someone with capacity to make medical decisions be respected. If that person has lost capacity, a person acting as their surrogate decision maker is obligated to exercise “substituted judgment” — making the decision that they believe the patient himself or herself would make.

Much discussion ensued about whether or not the mom really meant that she would want oral feeding withheld under these circumstances.  Many felt that to participate in this under the facts of this case would violate nursing ethics. Others pointed out that one of the problems, even where there is an advance directive, is knowing whether or not the writer actually understood the risks and benefits of following their wishes in a particular circumstance that would occur only after they had lost capacity to change their mind.  More than a few were very troubled by the fact that the daughters would be unwilling to take her home and withhold feeding (which could be considered elder abuse under the law) but felt that it would be fine for nurses to do this. The consensus seemed to be that even if the daughters’ statement of mom’s wishes were accurate, it was not ethically acceptable to withhold oral feeding.

But, then, one nurse-ethicist spoke up and said that even after seeing the video, if she were in the condition of the mother, she would not want oral feeding given by others. She was adamant. And, as a nurse-ethicist with years of clinical experience as well, it would be hard to argue that she didn’t have a full understanding of the risks and benefits.  A very interesting perspective. Of course, I have no doubt that she would actually put these thoughts into a clearly written advance directive and be sure she had selected a surrogate decision maker who would be willing and able to carry this out.

In many ways, this choice is similar to VSED — voluntarily stopping eating and drinking, something that is chosen by competent individuals who believe that the decision to do this is preferable to continuing to live with their medical condition and other life challenges.  However, whether this can and should be done by advance directive, is a far more complicated issue.

So this post is presented simply as food for ethical thought.  More about VSED is available through a simple Google search. But, as for the case discussed above, I would welcome your thoughts.



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