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With Dementia, More is Needed than a Boilerplate Advance Directive

By Katy Butler, 02/25/2019

Katy Butler is a New York Times bestselling author, journalist and prominent end-of-life speaker. Her post is adapted from her  new book, “The Art of Dying Well: A Practical Guide to a Good End of Life,” is available on February 19th, 2019.  More info on Katy here. 

My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer.  But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.

Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.

In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.

If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.

With that in mind,  I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive.  I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.

 

Dear Medical Advocate;

If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.

  • I wish to remove all barriers to a peaceful and timely death. 
  • Please ask my medical team to provide Comfort Care Only.
  • Try to qualify me for hospice.
  • I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
  • Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
  • Do not transport me to a hospital. I prefer to die in the place that has become my home.
  • Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
  • Do not treat my infections with antibiotics—give me painkillers instead.
  • Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
  • Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
  • If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
  • Do not force or coax me to eat.
  • Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal. 
  • Ask to stop, and do not give permission to start, dialysis. 
  • Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
  • Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
  • Do keep me out of physical pain, with opioids if necessary.
  • Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
  • If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.

Adapted from The Art of Dying Well: A Practical Guide to a Good End of Lifeby Katy Butler © 2019. Reprinted with permission of Scribner.

All rights reserved. If you reproduce, please include this credit.

37 Responses

  1. Licha Kelley-King says:

    thank you so much for this article and letter added to your AHCD. this is a tough subject for a lot of people.

  2. Linda Roers says:

    This letter is fabulous!!!!!!!

  3. Amy Shutkin says:

    The sample letter was so poignant that I copied it, edited it lightly for myself, and just sent it to my husband, daughter and internist to add to my existing advance directive.
    After watching my dad die slowly of dementia, and the slippery slope of incremental interventions taken during his decline, I only know that if and when, I want a different path for myself.

  4. Jill Ryder Friedman says:

    Thank you so much for this article and, in particular, this list. This is something that should be offered to everyone! I am sending this article to family members, including two who are physicians.

    • Mary Mckay says:

      A very thoughtful professional told me about this letter knowing that I am extremely interested in similar wishes if I am ever diagnosed with “Dementia”. Reading your letter is a prayer answered. I am in disbelief of it’s comprehensive tenets touching all of the essential pieces and of it’s timeliness. It gives me a sound platform to mimic for myself. My family will be equally grateful. Most sincerely, Mary McKay

  5. Lois Tripp says:

    Beautifully written article. My family also cared for my Dad with Dementia. Although he did not have a specific health care proxy.
    We cared for him in the way you described.
    It is what I know he would have wanted. Your letter has made me realize that I also need a very similar letter.
    Thank you!

  6. Katy,

    Thank you for being so very open about your wishes should you become a victim of a disease process that effects half of people over 85, and their many caregivers. From the moment of diagnosis, a dementia sufferer loses all their legal powers. They are no longer considered competent to make medical treatment decisions, financial decisions, or choices for location of care. Being able to write a directive in advance that will be honored later is the only way to have a voice in your end-of-life experience. Another factor is choosing a person you trust to give your Power of Attorney for Healthcare, as that is the person who will have to execute your directive. One thing I have added to my own advance directive is that when I cannot feed myself, I do not want to be hand fed or tube fed. I want ony comfort care only, lots of comfort care, and someone to hold my hand.

    • Guest says:

      It’s actually not true that a dementia patient loses “all their legal powers” at the moment of diagnosis. In fact my mom’s doctor told me just the opposite- the law tends to favor the patient. Two physicians have to sign off on a patient being “incapable of making their own decisions,” and it’s not an easy process. My mom is in early dementia stages and is still making many of her own decisions.

      • Cindy says:

        Without HC Agent and detailed Advance Care Directives you aren’t necessarily protected. As a person progresses in their disease no matter what it may be and the scariest is Dementia, a person needs to know that their health is tended to according to their values, desires, and wishes and that it is vital to have an appointed HC agent that understands these in adavance as well as the HC Team.

  7. Maarten Pennink says:

    The subject of End of Life and its consequences needs to be introduced to seniors in College even better seniors in high school. This subject needs to become a dinner table type discussion. The End is a part of the beginning. One cannot exist without the other. There must be something liberating about Death. We are the only species trying to avoid it at all cost. That IS silly. All these proposed documents are useful, but are they “listened to” when the time comes? Let’s wake-up to the realities of LIFE!

  8. stan. Craig says:

    As a passionate patient advocate, I applaud your comments. I lead seminars on this topic and have not covered this aspect of ACP as well as you have described in your letter. Dementia is a critical and growing problem that touches every aspect of life for patient and caregiver. The letter is clear and a decided benefit to help with ACP.

    Your insight is much appreciated.

  9. Nicola Finch says:

    Katy, thank you so much. I will use your excellent letter as a template for my own. You have written what I wish for myself. Thank you!

  10. Kathy Massoth says:

    Thank you. It is just this type of letter that I’ve been wanting to write and add to my directives as I had both parents die from Alzheimer’s and have a high risk. We are on the same page, Katy. Thanks for a template that I can use and complete this task.

  11. Sue Lullo says:

    As a person who works with the elderly and has helped people to fill out the advance directives, this is much needed information. I have watched family members struggle with the care of a person with dementia and agonize over their decisions. I will be sharing this information with the our support groups and family members. Thank you!

  12. neil hitz says:

    This is a wonderful and necessary letter. Coupled with My Life Directory which records location and details for those who must carry on when we are unable…..it provides the spouse or family comfort at a stressful time.

  13. Thank you for this. I will be sharing this in my dementia group and in trainings i present for therapists, social workers, and the community. And as the widow of a Lewy Body Dementia patient, I am so glad you wrote this.

  14. sara schwarzbaum says:

    I have read Katy’s book and it is outstanding. Now, this amazing letter, which I will share widely and reproduce for my self. A point of caution: I believe my mother had dementia in the last year of her life, but not every family member agreed with me. So even if I had been able to produce a letter like this, there would have been a disagreement regarding whether or not to implement her no-treatment wishes. I will add to my letter a very clear directive regarding who gets to decide when is a good time to implement it, and I will communicate this wish to my husband and children.

  15. Cathy says:

    Wonderful letter! We have some close friends whose mother fairly rapidly developed early-onset dementia when she was in her late 40’s. That was about 22 years ago. Astonishingly, she is STILL alive today at her home in a vegetative state because her husband insisted on a feeding tube. I just know she wouldn’t have wanted her husband and children caring for her 24/7 all these years. Her husband is now close to 80 years old. I’m going to add a similar letter to my advance directive. Thank you.

  16. CBlair says:

    Everything about this letter is spot on and necessary. Especially for those of us caring for a loved one with dementia and even those caring for loved ones with other illnesses. Even though painful to discuss with our parents, our children so they know what our wishes are, it’s a conversation that must take place at some point.
    Thank you.

  17. Linda Magruder Densmore says:

    Thank You. Can’t wait to read this book. This is exactly my way of thinking though I have found while currently being “in charge” of my dads end of life management of care these decisions have been hard because he couldn’t comfortably talk about this when he was able to. What we agreed on 3 years ago was to focus on quality of life and not quantity. Now that he is nearing the end the specifics of what to do about his nutrition are not as clear. I do not believe he should hav ed a feeding tube or that he should be fed…but it has taken me a long time to get the facility to understand that he still deserves to be served good tasting finger foods that he can still get to his mouth on his own. I’ve asked them to skip the minced food and thickened fluids (hasn’t been able to use silverware for months) and serve him the food that they assisted side gets sliced up a bit. He has problems with agitation so he has to be on antipsychotics…..but should he still be on his dementia patch ( which the facility swears will help his agitation). I’m actually a retired hospice/gerontology nurse….but still find this focus on quality versus quantity promise to be hard. His only quality now is the group activities and music….otherwise he is totally confused and total care.

  18. Be careful what you wish for . . .
    As an ER doc and expert on advance care planning. Most patients with dementia will not qualify for hospice (comfort) care until they have six months to live. Your best bet is to enroll in home-based palliative (compassion) care and defer on ER visits. Like natural childbirth, natural death occurs at home without a “medical team.” Your family and “midwife” palliative nurse can fulfill your wish for a stress-free, end-of-life transition.

    • Deb says:

      Dear Dr. Haselhorst, Thank you for your comment. I appreciate your advice.
      You mention ~ “Your best bet is to enroll in home-based palliative (compassion) care and defer on ER visits.” How does one enroll in home-based palliative care? Is this available everywhere? Also, is this option available to any of us, as we age and face other ailments and diagnoses? For instance, if we have heart issues and opt not to have surgery or take medicines for the same reasons listed in this article can we also enroll for this home-based palliative option so that we can have pain medicine and can suffer less? Thank you for your time.

  19. Louise Hull says:

    I wholeheartedly agree with Ms. Butler that we need to accept that death is a natural occurrence and medical intervention often only increases suffering. However, if a person cannot be admitted to hospice (there must be a 6 month terminal diagnosis), how do caregivers legally access comfort care drugs? As well, people with dementia can develop difficulty or resistance to swallowing pills. Having access to pain relievers is the keystone to a palliative care program so that needs to be answered above all other considerations.

  20. Robin says:

    Very good article and letter. I would ask that “dementia” be defined as there are different types and calling them all the same is wrong for the person and medical staff as they attach bias. After my Mother suffered a hemorrhagic stroke that took away her words and coordination I entered her into hospice care. Her mind was still sharp but she could no longer do anything for herself and knew it! With hospice we took her off medications no longer necessary for her comfort, did not force her to eat if she did not want to and only provided her with a very small dose of morphine to ease with her breathing. She died peacefully with no interventions, me by her side, in her room with the aides and nurses who loved her. That was her wish and I am thankful that place where she resided was respectful of that.

  21. Susan Taylor says:

    As a strong palliative and hospice proponent, this leaves me me with mixed fellings. My adopted son was extremely medically fragile…so he had all that “junk”. But he was so dearly loved and basically happy. We both knew he was “running out of time” when he turned 9…and it was time.
    So, even as a nurse I see both sides.
    Boils down to individual choices.

  22. Your letter is very thoughtful and will inspire all of us to address “natural death” decisions. Although many of the things you mentioned applied to my mothers death – the Doctors kept asking me to allow placement of a feeding tube. My mother had expressly and emphatically stated she did not want any measures to keep her alive but I still felt guilty denying the feeding tube. But some of that was relieved by knowing I followed her wishes.

  23. Sudheer Niet says:

    Wonderful letter! Thank you.

  24. Avis says:

    So meaningful and true. My big mistake with my momma was falling for the thickened liquids. Momma’s quality of life began to diminish quickly after I agreed to thickened liquids and puréed diet.
    My daughter who is an SLP convinced me that we didn’t want momma to get aspiration pneumonia. She made that recommendation out of fear of losing her grandmother. We did what we thought was best, as all caregivers do. It’s hard to see your parent shrinking away. Love to all.

  25. Wonderful article. I have been a physical therapist for the past 41 years, primarily spent providing PT at home. I have also been involved in long term care insurance sales for the past 19 years. I am currently dealing with caring for my just turned 90 year old Dad who had a stroke in October. The once genius mathematician and electrical engineer now has difficulty adding simple columns of numbers and can no longer live by himself. I am so grateful for the ltc policy that Dad has that pays for his home health aids. It takes a lot of the stress out of the situation. My Dad and I had had similar conversations about what he wanted and didn’t want, so those things are always kept in mind when making any healthcare related decisions. Death with dignity is the goal.

  26. Allen Crenshaw says:

    My wife forwarded the above excellent directive to me. I was diagnosed with Alzheimer’s 11 years ago and consider myself very lucky to have maintained reasonable communication skills. I want to live naturally as long as possible, but not artificially. My family, friends and myself deserve this respect. Thank you.

  27. Wonderfully written. What I appreciate most is the intention behind the document. It’s aimed at supporting your loved ones through what would be very complex, emotional decisions. I’ll be including this gem in our UVM doula training course!

  28. Gloria Reading says:

    So glad to read this from you, Francesca. I will be including this in my own Advanced Directive with one addition for my kids. “If one is availaable, please hire and End-of-Life doula to help you through this difficult time.”

  29. Tom L. says:

    You are correct about the boilerplate template not sufficiently covering this area of concern. When I filled out my advanced directive I used a template and modified it to include alzheimers and dementia.

  30. Diane says:

    Thank you for sharing this detailed thought out approach to dying! I am in the midst of having to care for my 87 year old mother who has dementia. My dad passed 5 years ago and even though I was flying from CA to WA every month to get them to deal and get a diagnosis for mom’s memory loss, they refused. While I was going through breast cancer treatment, dad passed and I was left to help mom. It’s been 5 years now and while I have her living near me in a memory care center, the facility and medical establishment just don’t understand this. I was called early this morning and after a fall my mom had in the night, I need to get my mother right into the doctor. She has had flu shots, the vaccination to prevent pneumonia, been given antibiotics for many UTIs and because she lived a very healthy lifestyle, walking at least 3 miles every day, maintaining a healthy weight and never having any real health issues, her mind is gone, but her body just keeps going. This experience has given me insight to how I want my end of life to be if I end up getting dementia and your article is beautifully written and spot on for how I want to be treated. I am re-writing my health care directive to include dementia care. Thank you for writing this article and I look forward to reading your book.

  31. Thank you so much for this clear list of dont’s. And acceptable do’s. The language is clear and decisive, leaving no doubt of one’s wishes. I will be passing it on to my family friends and clients. Thank you again

  32. Maureen Erwin says:

    This is very helpful and thoughtful. I would add, suggest, to consider clearly stating “DO NOT HOSPITALIZE” on all documents and discussions with loved ones to avoid emergency rushes to the hospital to prevent un-wanted treatments, pacemakers, etc. Maureen, Hospital Chaplain.

  33. I think this is one of the best blogs for me because this is really helpful for me. Thanks for sharing this valuable information for free

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