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by: Stan Terman

Michael Ellenbogen has dementia.  He took the #thickenedliquidchallenge.  He never wants to have thickenedliquids again, even if his life depends on it.  Is this ethical?

Click this link if the video doesn’t appear above.

Michael Ellenbogen’s video addresses the #Thickenedliquidchallenge from a patient’s point of view.

Mr. Ellenbogen tries orange soda, one of his favorite drinks, with thickener.  He reports, “The taste was terrible.  The drink lost all of it’s flavor, all of the enjoyment of my favorite drink was gone.”  He goes on to say, “Many people do not understand that there’s a lot more to eating than just getting the nutrition into our bodies.  The texture contributes a lot to how much you enjoy it.”

Mr. Ellenbogen states that if he had advanced dementia he would never want to be fed thickened liquids, “even if my physicians thinks that my life my continued living depends on it.”

More generally, his experience and request bring up the issue on what people can or cannot request in Living Wills, and whether health care providers will honor their wishes. Patients who reach the stage of advanced dementia may have few choices other than to forgo food and fluid because they may have “No Plug To Pull”; that is, they may not depend on any high-tech, life-sustaining treatment.

In a recent blog, Tia Powell, M.D., asked this question: “Can advance care directives ethically specify that oral feeding be withheld?” (Her essay’s lead title is: “Bioethics is not about technology” and can be found at this link, along with some discussion.

Dr. Powell stated, “A patient cannot decline a basic healthcare measure that is not a medical treatment. People cannot request that they not be bathed, or kept warm, or covered… Oral food and drink belong in this same category of basic human care, rather than in the category of medical intervention. An advance directive cannot appropriately ask that basic nourishment be withheld from a person in end-stage dementia…” Powell then asks: “Can an Advance Directive Be Cruel?” Her answer (in part) is: “An advance directive can clarify values and preferences for future treatments, but cannot ask a person, an actual person, to do something he or she should not be asked to do.”

Michael Ellenbogen and I disagree. Michael is living with dementia. I helped him complete his Advance Care Planning (including his Natural Dying—Living Will) in 2012. Michael passionately hopes health care providers will honor his wishes to implement Natural Dying if someday he reaches the stage of Advanced Dementia and no longer can feed himself.

Now Michael also wants to move up the time when “Natural Dying” may be implemented by also refusing thickened food and liquids–if his risk of aspiration pneumonia is high. Definition: “Natural Dying” withdraws the act of assistance by another person, hand-feeding/drinking, but Natural Dying never withholds food and fluid from the patient since food and fluid are always placed in front of the patient, within reach. (Note that Dr. Powell used the word, “withheld” in the title and text of her essay.)

Please take the following poll.  Feel free to elaborate on your answers in the comments.

This Post Has 6 Comments

  1. Excellent post – very moving and thought-provoking.

    I appreciate Mr Ellenbogen's comment, "…there's a lot more to eating than just getting the nutrition…" Food and drink can be many things – a social event, a way to share, to show love and care, and in the case of orange soda and Mr Ellenbogen, a special treat.

    I also appreciate that, in this case, the ethics may be more clear, since Mr Ellenbogen clearly articulates his wishes, along with an informed appreciation of the consequences.

    One point I can't emphasize enough – people with advanced disease and at end of life need particular attention paid to their oral care. Dry oral mucosa is very uncomfortable, and can result in an overwhelming sensation of thirst that isn't relieved by drinking.

    I've found a simple clean washcloth is usually the most effective tool for oral care, particularly in the home. I teach families to wet several clean washcloths thoroughly, twist them into the shape of a cigar, and keep them in the freezer. The rigid frozen cloth does an excellent job cleaning off tongue fuzz, inside the cheeks, teeth, etc.

    It's also easy for a patient to chew or suck on the clean washcloth – the cold is refreshing, and there's enough moisture to keep the mouth comfortable with less aspiration risk.

    Thanks for sharing Mr Ellenbogen's perspective.

  2. Interesting. I can't promise whether I would follow his AHD, as the future Michael also has rights. If future Michael appeared hungry or thirsty and accepted hand feeding then it brings into question the validity of the current AHD. I have no qualms with not feeding a patient and not giving thickened fluids if they do not wish. But I felt that the wording of his AHD doesn't allow me to do so. If I'm sick and you raise a cup to my lips or a spoon to my mouth that is hand feeding. But in that moment when I'm thirsty I want it.
    I do sometimes trial thickened fluids, but if a patient indicates the slightest distress over it, then it is dropped and we don't go back to it. But if a patient wants to take food or fluid from a spoon then I give it, until they no longer appear interested.

  3. I still recall the patient with advanced dementia who spontaneously stopped eating. In the days before Advance Directives were common, this patient didn't have one, but when the patient was admitted to the residential Alzheimer's Disease unit everyone understood that this was a terminal admission.

    So what did the staff do when the patient refused to eat?

    Coaxed. Pressed the patient with previously-favorite foods. "Try just one bite." Over and over, for 10-15 minutes at a time, staff members tag-teaming each other to try to "get some nutrition in."

    Long-distance family agreed to this because, as they were told, the patient's mouth did open, and chewing and swallowing did (usually) ensue. "So the patient is willing to eat, right?"

    When a family member arrived to visit, it was immediately clear that this was not "the patient is hungry/thirsty," nor even "the patient is willing to eat," this was "the patient is unable to maintain refusal in the face of enormous social pressure from several staff members one after another."

    The family member insisted on being the only one to feed the patient for the next few days. The patient appeared calmer and happier. And died peacefully on day 4.

  4. I think thickened liquids for a palliative care/end-of-life patient is to be considered very differently than for patients who need modified liquid textures for other medical reasons.

    Quality of life needs to be considered alongside advanced directives.

    I'm not sure I agree with an advanced directive of not accepting thickened liquids just because the taste is bad if that will prolong your life. Some pills also taste horribly, but that doesn't mean we can just put in our advance directives "refuse all bad-tasting pills."

  5. To the anonymous person who commented, "I'm not sure I agree with an advanced directive of not accepting thickened liquids just because the taste is bad if that will prolong your life."

    The premise is that Michael will have met the condition of Advanced Dementia for which he would have also judged that the starting of hand-feeding/drinking would provide him little or not benefit while it would cause much harm and burdens to himself and others.

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