- Tony Hope
- Michael Ellenbogen
- Mother's final wish
- Comfort Care for my mother
- Sandra from Washington state
- Ellen from Pasadena
- James Leonard Park, Minneapolis, Minnesota
- Karl E. Steinberg, MD
- Ronald B. Miller, MD, FACP
- Barbara Coombs Lee, PA, FNP, JD
- Elliot N. Dorff, Rabbi, Ph.D.,
- John Gillman, Ph.D.
- Cecil L. “Chip” Murray, Rel. D.
- Robin Alderman Zide
- Ellen C. from Pasadena
- Robert L. Levine, M.D.
This is the place where people share both good and bad experiences about Refusal of Food and Fluid. Technical points specifically related to thirst control are found on our separate BLOG about thirst control. If you would like to share by contributing your story or information to either site, please send an e-mail to Linda Meyers and Community Liaison Director at firstname.lastname@example.org
"I am very impressed with what Dr. Terman has been doing at both a practical and theoretical level (an outstanding mix of the two) to improve the lives and control of people with dementia."
—Dr. Tony Hope, founder and Director, Oxford University’s Ethox Centre; leader of Nuffield Council’s report, “Dementia: Ethical Issues”
He won the Royal College of Psychiatrists Research Medal for research area in the behavioral problems of people with Alzheimer's Disease and co-authored over 150 articles and books including being the founding co-author of The Oxford Handbook of Clinical Medicine, Medical Ethics and Law: The Core Curriculum, and Medical Ethics: A Very Short Introduction; and co-editor of Empirical Ethics is Psychiatry. Dr. Hope chaired the Nuffield Council on Bioethics that led to publishing Dementia: Ethical Issues in October, 2009.
former member, Alzheimer's Association National Early-Stage Advisory Group
Dr. Terman and I exchanged numerous emails after we both telephoned into the public comment segment of the Advisory Council for the National Alzheimer’s Project Act in March, 2012. I alerted members of the Council about a personal need that I share with many early stage dementia patients: We need to know we can expect assistance in dying after we reach the advanced stage of dementia. There are several reasons. One is because we want to avoid years of being a burden to our families, as well as years of our own suffering. Another is that we want to be remembered as we are, instead of who we may become.
Without a plan that we have confidence in, some of us will consider leaving this world earlier than we need to. That is because we know that inevitably, we will forget this goal and also lose our mental ability to carry out a plan to hasten our dying. My initial goal was to legalize Physician-Assisted Dying in more states. But Dr. Terman convinced me that Death With Dignity laws could NOT help Advanced Dementia patients. By the time they reach Advanced Dementia, patients will NOT meet two strict requirements of these laws: First, we will NOT be terminally ill. Second, we will NOT be competent. Eventually, my conflict with Dr. Terman turned into a collaboration. I completed the “Natural Dying—Living Will” that his organization, Caring Advocates offers. Then I added my personalized version of the “Ironclad Strategy.” I now feel that others will honor my wishes after I lose the ability to independently eat and drink. So I do not need to hasten my dying now. That’s good, but I am not fully satisfied. I may not want to wait that long. So we are still looking into other options.
My Mother's final wish
C) 2007 David H. Huffman, M.D.
At the age of 89, my mother received the diagnosis of pancreatic cancer. Sadly, this was a terminal diagnosis. We talked at length about her end-of-life choices. As our discussion concluded, she made three points clear: She wanted to have control over the end of her life. She wanted to go peacefully. She wanted to forgo medical attempts to prolong her dying.
Given her choices, I helped her enter a local hospice. There, she chose to refuse food and water. I supported her decision. I remained with her to the end. She lived six days. Her final days were peaceful, without hunger or thirst.
About five hours before she died, she seemed confused. (The medical term would be mild delirium.) But after a while, she suddenly opened her eyes, reached out, and with absolute clarity said, My name is Frances. Can I come in?
Then she closed her eyes and slipped into a coma. Her breathing got progressively slower until finally, she completely stopped breathing.
As I closed her eyes, I felt at peace, certain that she had made the right choice and that she was now in the arms of her God.
I still feel the same way, today.
For me, this was a life changing and wonderful experience. It solidified my support for excellent hospice care, and for the right of all individuals to cease nutrition and hydration if they so chose.
Comfort care for my mother helped me
I had become very anxious about how I could make my mother comfortable as she neared the end of her life. After I read The BEST WAY to Say Goodbye, I checked out the relevant portions with my sister since she is a nurse practitioner. I showed her the pictures of the items the book indicated could make people more comfortable during the process. Our mainstays were the lemon swabs for her mouth, and Aquaphor Healing Ointment for her lips.
During my mother's last few days of life, we changed her, we turned her, we talked to her, we played music for her, and we even used aromatherapy. She could not indicate a response but you never know. I like to think that our efforts did make her feel more comfortable. Certainly, they made me feel better because I could do something for her as she passed on.
"Sandra" in Washington state
Once she learned that her Malignant Melanoma had spread and was no longer treatable, "Sandra" (not her real name) chose to participate in directing her death by refusal of food and water. Stan Terman's new book, The BEST WAY to Say Goodbye became her guide. Her disease had caused her to retain much water and she knew this physical condition placed her in one of the categories of patients for whom the book recommends either physician-facilitated, patient-hastened dying, or palliative sedation. But Physician-Assisted Suicide is illegal in Washington state, and her pain could still be managed. So she entered her next realm with a sense of adventure and without fear.
For the first few days, she experienced no discomfort except for a bit of hunger. Her water started coming off around day 10. Over the next three days, she lost 15 pounds. By the end, she had lost over 35 pounds. Towards the end, she dreamed of drinking, but could be distracted. She reported that voluntary refusal of food and fluid was mostly comfortable and peaceful, and as her water came off, she actually became more physically comfortable.
Sandra was always very sensitive to medications. For that reason, she preferred homeopathic remedies. Unfortunately, she could not take any of the drugstore items for thirst recommended in the book. She got some relief from Tom's mouthwash, however.
Her family and she were prepared for the process to last longer than the average of two weeks because she had so much fluid. It took 23 days. She remained alert and able to communicate clearly until just one day before she died. That day, she complained of more pain so her doctor prescribed morphine drops. She only used it only on her last days, for only several hours. Previously, she had managed pain with a variety of homeopathic remedies, Bach flower remedies, acupuncture, massages, Monroe Institute's Hemi-Sync CD not to underestimate the many cards, e-mails, and the amazing amount of love with meaningful conversations.
While 23 days may seem a long time, it allowed for something precious to occur, something that otherwise would not have been possible: Sandra had worked with a church-related therapist whom she had not seen for 16 years. As the fast continued, Sandra thought about making contact with this person. They exchanged e-mails that acknowledged the mutual impact each had on the other's life. They were profoundly affirming. Only because Sandra's edema diminished slowly could they have the time to share this true gift. While there might have been quicker ways to die, I'll never forget when, after nine days of devoted attention with her mind clear and her spirit strong, Sandra said, "This is the best time in my life."
We did not know it at the time, but it turned out to be just one evening before she died when Sandra was able to hear us tell her that she would have to be "the one to do the leaving." She responded firmly, "I understand." And the next day, she did leave. --Dancing with joy, as she finally shed her vessel.
Ellen from Pasadena
After I discovered that my parents had taken pills to end their lives, I probably needed to see a psychiatrist; however it was my surviving mother who actually saw one. After being married for 62 years, my parents made a joint decision that they would not live without each other; that is, they would die together. My father was terminally ill; my mother wasn’t. Their plan—to ingest a lethal dose of sleeping pills did not work. When I arrived for my usual morning visit, I found my father was no longer breathing. But my mother was snoring loudly. I called 911. Emergency medical personnel transported her to an emergency department. From there she was transferred to a psychiatry ward.
Eight months later my mother, who did not seem depressed to me, stated she needed information on “another way to someday join” her husband. Now nearly 90, she begged me to research the internet. Obviously, she would not trust pills again as they had failed her. She tried to comfort me by saying that she only wanted information now. This knowledge would give her peace now, so she could have confidence she would not have to suffer as her husband did. My research quickly led to finding Stanley A. Terman, the psychiatrist who leads the non-profit organization, Caring Advocates.
I went to the first appointment by myself—to check Dr. Terman and his method out. At the second visit, my very intelligent and prickly mother asked many questions that he answered with patience and competence. Dr. Terman not only advised my mother about her end-of-life options, he also made her feel secure that she would not have to opt for premature dying to avoid getting stuck in a miserable state like dementia or stroke, in which she could no longer ask for treatment to stop. He called this the “ironclad strategy.”
In addition to end-of-life counseling, Dr. Terman served as our much-needed family psychiatrist, when “that time” did come. My mother and younger sister had a lifelong contentious relationship; they were estranged for three years. My sister remained 2000 miles away, so Dr. Terman could speak to her only by phone. Still, he helped immensely. My sister followed his suggestion to send my mother an e-mail, which I read aloud to Mom. That broke the ice so they could speak on the phone for the first time in three years without shouting, blaming, and hanging up on each other. I could hardly believe how my sister and mother exchanged such heartfelt and meaningful goodbyes. I’ll never forget how peaceful I felt as the three of us were “together” as Mom died. I was by her side, holding the phone that now connected my sister to Mom. Without Dr. Terman’s help, I doubt my sister would have ever have been able to make peace with Mom or feel peace with herself after Mom died. She has. We both have.
Dr. Terman followed Mom from the initial informing her about her options, through her making the decision to fast and die by Natural Dying. He also visited her through dying process, which took eleven days. He offered us consolation and advice and provided practical information with compassion. He graciously helped me, the ”designated“ daughter, as needed... so I finally did get “my” psychiatrist. He also prevailed strategically over the initial objections of a few of the staff of a well known teaching hospice that made it possible for Mom to eventually get their complete cooperation. My mother died peacefully in her own bed with the undivided attention of her two closest relatives—her daughters. Who would not want that?
I am so grateful that I was fortunate to find Dr. Terman and Caring Advocates to help us all attain a peaceful transition. I wish others in similar situations could find similar help.
Ellen from Pasadena
Note: Ellen’s mother is the main patient (of three) in the story that also includes features of two other patients, which appears in the book, Peaceful Transitions: Stories of Success and Compassion: “To live long enough to warm the hearts of others” -- Reflections on informing my patient about how to die.”
James Leonard Park, Minneapolis, Minnesota
Excerpt of a review of The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life by James Leonard Park. The full review is one of a series of reviews on the topic, “Voluntary Death By Dehydration,” © 2010 by James Leonard Park, existential philosopher and medical ethicist that can be read at www.tc.umn.edu/~parkx032/B-VDD.html.
This is probably the first book promoting what Dr. Stanley A. Terman calls "voluntary refusal of food and fluid" (VRFF). The idea of choosing death by giving up eating and drinking is so simple that we should ask why so few have discussed it before. But someone had to speak first. Dr. Stanley Terman is that first voice, at least in a book-length discussion.
As Dr. Terman says in the sub-title, voluntarily giving up food and water is a completely legal choice anywhere in the world. And this book argues that death by dehydration can be a very peaceful and even painless way to die. Several ways to alleviate the discomforts experienced in such a method of choosing death are discussed in detail, p. 102-112: mouth care, thirst-reducing aids, pain-relief, and even deep sedation. And Dr. Terman has experimented with (two) such fasts himself. So he writes from experience about the discomforts and how to cope with them. Of course, he has not yet fasted himself into unconsciousness or into death.
The process he recommends for ending our lives contains very important safeguards within the process itself. For one, it will take a week or two to die by this means. During any such period of continuing to refuse food and fluids, we will have numerous opportunities to reconsider any foolish decisions to end our lives. People who want to commit irrational suicide will probably never consider dehydration as their means.
The book discusses the range of attitudes within major religious traditions. But almost no religious authorities have addressed directly the possibility of voluntary death by dehydration. Most of the religious perspectives deal with refusing treatment and withdrawing life-supports.
Another major theme of this book is creating a good Advance Directive. Most of the well-known right-to-die cases would never have happened if the patients had created Advance Directives. Dr. Terman has many specific suggestions for advance care planning, so that our documents say exactly what we want under various circumstances. We also want to make certain that our Advance Directives cannot be overturned by people who would make different choices at the end-of-life.
My most basic criticism is that the book is far too long. Dr. Terman is in the process of creating a how-to guidebook, which will be a guide to taking the actual steps towards death by giving up food and water. It should tell us how to cope with the problems created by this method of voluntary death and give us some good examples of actual people who chose this pathway towards death. I believe this how-to-die book could become more popular than Derek Humphry's best-selling Final Exit.
Most of the pages of BEST WAY will be of interest to professionals in medical ethics. I found the rest of the book quite interesting. For example, Dr. Terman’s comments about Terri Schiavo keep popping up everywhere. There are 23 references to her case in the index, which enables careful readers to find all Dr. Terman's comments.
If Dr. Terman follows my advice, he will create at least two books from this one. The first—very short—book will tell laypersons everything they need to know about choosing to end their lives by giving up food and water. There might even be a place for a book just about creating Advance Directives.
—James Leonard Park, Minneapolis, Minnesota
Note: Actually, Dr. Terman did subsequently publish two books: Peaceful Transitions: Stories of Success and Compassion, and Peaceful Transitions: Plan Now, Die Later—Ironclad Strategy (although both books are also available in a single, combined edition),
Millions who will be suffering from Alzheimer’s and related dementias may receive treatment inconsistent with their preferences and values, treatment that may inflict longer and greater suffering. If you do not want this to happen to you, read this book! It offers a unique Advance Care Planning tool that offers substantial advantages over all alternatives.
—Thaddeus Mason Pope, JD, PhD; professor and Director, Hamline Health Law Institute; member, Medicare Evidence Development & Coverage Advisory Committee; Associate Editor, Journal of Clinical Ethics.
Dr. Terman’s wisdom, compassion, and nuts-and-bolts recommendations may seem controversial to some, but compelling to others… He offers comprehensive forms, medallions, cards, and suggestions for recording interviews that combine to provide a guarantee closer to 100% than any other [for] Advance Care Planning.
—Karl E. Steinberg, MD; Past President, California Association of Long Term Care Medicine; Editor-in-Chief, Caring for the Ages.
Dr. Terman devised a set of strategic solutions including ingeniously coupling a specially designed Advance Directive and a set of physician orders with adequate safeguards that reflect Dr. Terman’s strong advocacy against ending life prematurely. Ironically, learning how to end life really empowers us to prolong our meaningful and enjoyable life.
—Ronald B. Miller, MD, FACP, Founding Director of the Program in Medical Ethics, University of California Irvine
Our greatest fear regarding end-of-life decisions: complete strangers can intrude on our most intimate decisions, and worse—make decisions that we would not make for ourselves. Dr. Terman offers a close to ironclad strategy to preserve control at the end of life, even for those individuals who may ultimately suffer from severe brain damage or dementia. Every pitfall has been considered and solved! It also guides families through the chaos that results from inadequate advance care planning. His book is so good that our organization keeps copies at every office. It is a mainstay of the recommendations we provide our clients.
—Barbara Coombs Lee, PA, FNP, JD; Family Nurse Practitioner and Attorney; President and Co-CEO, Compassion and Choices; Chief Petitioner for the Oregon Death with Dignity Act
Dr. Terman explores a way of dying that is relatively painless, effective, legal, and in keeping with many religious traditions. Critically important for individuals, families, health care professionals, and public policy experts, his book really does point to The BEST WAY to Say Goodbye.
—Elliot N. Dorff, Rabbi, Ph.D., Rector and Distinguished Professor of Philosophy, University of Judaism; author of Matters of Life and Death: A Jewish Approach to Modern Medical Ethics
“Dr. Terman has accurately and respectfully presented the Catholic position(s). I agree with the values he holds most dear: To do everything possible to learn directly from the patient what she or he wants; and to appreciate that one of life’s greatest joys—to be heard and respected—is especially true for needy and vulnerable patients in the last chapter of their lives.”
—John Gillman, Ph.D., ACPE Supervisor of Clinical Pastoral Education; VITAS Innovative Hospice Care, San Diego, California
“After four centuries of understandable distrust, African Americans are wary of ‘healers’ who make life and death decisions regarding them. Dr. Terman must be commended for examining this specific area in the context of options of life and death. Also, the section of his [first] book on religion is just awesome. It held me spellbound with its depth of understanding of our differences and our commonalities as we debate the issue of life and death. If any work should be required reading, this would qualify. I have personally used its insights in working with families and seen how they can bring great relief in the struggle to make ‘their best’ end-of-life decisions.”
— Cecil L. “Chip” Murray, Rel. D., Tanzy Chair of Christian Ethics, School of Religion, University of Southern CA; Pastor Emeritus, First African Methodist Episcopal Church, Los Angeles, CA
Your thoroughness on the legal matters, humor, and seriousness in facing this subject is astoundingly precious for me. My step-father’s ending was a nightmare over which we are still battling in court two years after his passing. His horrible ending with feeding tubes that he never wanted was due largely to the ignorance of his power of attorney. Your emphasis on completing a clear and specific Living Will is so right on…
— Robin Alderman Zide
Dr. Terman not only advised my mother about her end-of-life options, he also made her feel secure that she would not have to opt for premature dying to avoid getting stuck in a miserable state like dementia or stroke, in which she could no longer ask for treatment to stop. He called this the “Ironclad Strategy.” I’ll never forget how peaceful I felt as the three of us were “together” as Mom died. I was by her side, holding the phone that now connected my sister to Mom. Without Dr. Terman’s help, I doubt my sister would have ever have been able to make peace with Mom or feel peace with herself after Mom died. She has. We both have. My mother was able to die peacefully in her own bed with the undivided attention of her two closest relatives—her daughters. Who would not want that? I am so grateful that I fortunately found Dr. Terman to help us all attain a peaceful transition.
—Ellen C. from Pasadena
“As an intensivist, I've lived this professionally for over 30 years, trying to help families understand what you have so eloquently written.”
—Robert L. Levine, M.D.
Professor and Founding Chair
Department of Emergency Medicine and Critical Care
The Florida International University Herbert Wertheim College of Medicine