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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 email@example.com
Tony Hope, MA, BMBCh, MRCPsych, MFPH, is the founder of the Ethox Centre at the University of Oxford where he is now Professor of Medical Ethics. 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.
Tony Hope wrote this to Dr. Stanley Terman:
"I thank you for our very stimulating and interesting email discussions following the Nuffield Report, and for the excellent materials that you have sent me over the last couple of years. The work that you are doing in turning ethically well considered ideas into detailed practical ways of making a difference to people is most impressive and admirable."
HOW HENRY DIED
By Stanley A. Terman, PhD, MD
Henry was a profoundly gentle man who expressed deep concern for others--a mench (a Yiddish/German word meaning someone with noble humanity). Henry left a legacy of good memories, generous deeds, and devoted children, grandchildren and great grandchildren. While this account focuses on how he died rather than on how he lived, it was important to Henry that the last portion of his life be consistent with the rest. Thus Henry died as he lived. For that, we all should be grateful. All who survived, and hopefully also Henry.
Tuesday was Henry's last day of seven at the hospital. His wife Sarah held the phone close to him so he could talk to me. It was difficult for him to pronounce words distinctly, but when she repeated what he said, it was evident that he had in fact clearly expressed the bottom line: No surgery. I am not a candidate for anesthesia. (He sounded like he was trying to talk underwater.) His doctors would not offer him aggressive curative treatment; instead, they were discharging him to go home with hospice care. Over the past several months, Henry had sent me his doctors' reports from Florida. Although I called his current New Jersey doctor and left him a message to call me back, he never did. I therefore considered the written reports I had received plus what Henry and Sarah said, and the fact that Henry was referred to hospice as sufficiently consistent to infer that Henry was terminally ill. The picture did seem grim: metastatic kidney cancer created the need for two or more blood transfusions per week just to maintain a minimum concentration of red blood cells, but even with that, he was very weak and losing weight. And his last transfusion was three weeks ago, in Florida. Guessing that his end might be near, I flew from San Diego that night. By 10 AM the next day, I was at his bedside in New Jersey.
Wednesday : As I took his hand in mine and said hello, Henry smiled and asked, "Am I dreaming?" A clever way of expressing his pleasant surprise to see me.
I sat down next to the hospital bed that had been set up just hours before. I told him that if he wanted, we could go to Sloan Kettering Memorial Hospital to check out their new advances in chemotherapy for kidney cancer. He waived his hand and said, distinctly and with conviction: I'm writing the last chapter of my life. He pronounced this fact as a statement, without remorse or resignation, using a metaphor appropriate for his career: he was a printer and owned a printing plant for several decades. I believe this was Henry's way both to say goodbye and to indicate that he had accepted his destiny.
I asked him if he had any pain, or was uncomfortable, and he said, "no." I watched him drink half a can of Ensure. Later that day, he drank a couple of ounces of water. Each time he drank, however, he had moderate coughing that seemed to make him uncomfortable. I worried about aspiration and possible pneumonia. Later, the hospice nurse recommended that Henry be positioned straight upright in the sitting position when he was eating or drinking.
Henry fussed a lot. He directed his wife to select the right hearing aid and gave her instructions on how to insert it in his ear. That was how intent he was on being able to engage in conversation. Yet his focus demonstrated one of his most admirable qualities: He always thought of others; for example, he encouraged me to consider using the building's work-out facility and sauna.
Henry requested that his hospital bed be moved to his bedroom. This surprised Sarah because the "day room" was where he usually spent most of his time talking, reading, and watching TV. In order to accommodate his request, the hospital bed would need to be disassembled, and that could not happen until Henry's wheel chair was delivered since he needed a place to sit comfortably during the transfer. As it turned out, by the time it would have been possible to move him, Henry was no longer complaining about changing the location of his bed.
Some basics to Comfort Care (medical treatment whose goal is to relieve suffering) were ordered and implemented: one medication for sleep, another drug for anxiety. Since his intake of liquid was minimal, Senokot (senna) was substituted for the bulking fiber laxative he had been taking.
Several visitors came that day. One was his Rabbi, to whom he clearly said, Have a nice Shabbos. He also visited with his daughter and granddaughter. The visits, though marked by few words, were meaningful to all. They also left Henry drained of energy. After his visitors left, he slept most of the rest of the day and night.
Thursday : A busy morning for Henry. His wheelchair arrived and he was placed in it while a special mattress was installed. The apparatus alternated pumping air to rows to expand to minimize the potential of bed sores by changing the points of weight bearing pressure. While sitting, Henry complained of being very dizzy. He said, "I feel like I am on a carousel." He had two reasons for too little oxygen getting to his brain: his blood pressure was low and his hemoglobin had been dropping dramatically. He returned to the bed as soon as possible. We were hoping to wheel him into his bedroom and the living room, but that was not to be. He used the wheel chair only when his bed sheets needed to be changed, and he never moved more than 6 inches from his bed. Nor did he ever leave that room.
Although Henry recognized relatives and greeted some neighbors that day, he was not able to converse. He was able to squeeze my hand, however, with moderate strength, and when I remarked that his grip was strong, he responded with a trace of a smile.
The afternoon was rather peaceful as Henry slept on and off.
Sarah prepared some soup, but he had only one tablespoon. When encouraged to eat or drink, he declined. Sarah fretted about what she could make him to eat. I urged her to try to change her thinking: from what she could do, to let Nature take its course. She has a get it done personality, so I suggested that if she wanted to do something, she could provide Comfort Care to his mouth. I acknowledged that in our culture, it is difficult to stop thinking traditionally that the only way to nurture people is with food. When patients are in the last chapter of their lives, they often lose interest in food and fluid, in which cases, it shows respect to honor their wish to decline. Also, there are many physiological reasons why patients are more comfortable if they don't eat or drink. Still, thirst can be uncomfortable.
I asked Henry if he was thirsty. At first he did not understand me, perhaps because his hearing aids were not in place. But when I used different words, he repeated the words I used: Yes, dry mouth. So I offered him Salivart spray since it had been my favorite during my own fast. Henry he did not like it. He preferred lemon-flavored glycerin swabs. Even though I knew we would still offer him Food & Fluid frequently, I posed this more general question: "When your gets dry, which would you like: to drink some liquid, or to use the glycerin coated swabs?" He indicated that he preferred the swabs. Henry had previously read The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life, and we had discussed the option of Voluntary Refusal of Food & Fluid, so now we were just confirming that now was the time for him to invoke a decision that he had previously considered.
In the breakfast room, I asked Sarah what she would do if Henry got pneumonia. She replied, "I'm not sure." I suggested that it would be best to decide now, ahead of time and she agreed to discuss it by asking, "How would pneumonia be treated?" --By hydration and antibiotics. Recalling Henry's wishes, Sarah said the answer was, "No." I also suggested that neither she nor any one else call 911, because Emergency Medical Technicians are not trained to provide medical advice and support; instead, they provide resuscitation. Sarah agreed that Henry would not want resuscitation.
Henry slept hour after hour. With resignation, Sarah would look at him and express her feeling that he seemed to no longer have any quality of life. She also wished the process of dying would not take long for him by saying, "For his sake and mine, I hope he dies soon." When I asked out of curiosity if she had ever thought about doing something more active to hasten his death, she promptly answered, "Definitely not."
Friday : Sarah told me that Henry had a restless night and, for the first time, he had complained of pain. She remained upset after calling the doctor without receiving a return phone call. She abided by our conversation about not calling 911 so she did not know where else to turn. I suggested she ask hospice to move up the nurse's scheduled visit, which she did. Then I advised Sarah that Henry's comfort was paramount so she could give him higher doses of the anti-anxiety medication and not feel strictly bound by the written instructions on the bottle.
The additional dose of the anti-anxiety agent under the tongue with a small ice chip, plus changing his position in bed, and Comfort Care to his mouth, and all helped but not enough. Henry still complained of pain. Sarah became more anxious. Fortunately, it was not long before the hospice nurse arrived and determined the source of discomfort: impacted bowels. A half-hour later, we were all feeling calmer. I'm sure that Henry was thankful for the successful efforts of the hospice nurse, but the ordeal had left him almost completely drained of energy.
When I offered Henry a different spray called Oasis, he nodded his head to indicate that liked it. Although I cannot say for sure since I was not with him constantly, it is my impression that by this time, Henry had not taken in more that a couple of ounces of fluid for about two days, despite being offered. After a couple of sprays and applying the swabs, I moved close to his head and said rather loudly, "If you can hear me, squeeze my hand." I waited but there was no squeeze. Clearly, it was time to let him sleep.
On previous days, Henry's rate of breathing did not change when he received oxygen through nasal prongs. Today however, his color was becoming more ashen, and his breathing shallower. Since providing oxygen could do no harm and it might provide additional comfort, he was offered oxygen continuously. With both anti-anxiety and sleeper medications, he slept peacefully through the night.
Saturday : His breathing was even slower and shallower, and his color paler and more ashen. When provided Comfort Care to his mouth, he became a bit agitated. He calmed down after an anti-anxiety pill was placed under his tongue along with a small chip of ice.
Sarah asked, "What can I do?" The answer, again: "Let Nature take its course." It was obvious, and the hospice worker stated so, that Henry was getting closer to his end. But we didn't know whether it would be hours or days. It turned out to be minutes.
Sarah and I went into the breakfast room, divided the New York Times into sections, and began reading. We talked about the Governor of New Jersey's car accident that was made more serious by his not wearing a seat belt. Less than ten minutes later, the hospice worker called us back into Henry's room. There she and I stood, silently watching Henry breath
Slower and shallower. Then, he stopped breathing. We waited. About forty seconds later, he took another breath. We waited, again. This time, after about 3 minutes, we realized Henry had taken his last breath. The hospice worker said his passing was one of the most peaceful she had ever seen.
Standing by the bed, somewhat in shock, and not knowing what to do, Sarah asked, "What now?" I said that the hospice nurse and I would leave the room so she could be alone and say her last words of love and goodbye.
# # #
A few hours later, the living room was full of daughters and sons, nephews and nieces, grandsons and granddaughters. They were relating their favorite stories about the wonderfully gentle, generous, and kind the man they had loved for so many years.
Henry died two months before his 94 th birthday. We were all graced by his good fortune that as he aged, not only did his reasoning remain intact, but his mind also became increasingly profound and philosophical. His concern for others continued to his very last days.
Did Henry die of dehydration or from his underlying diseases of kidney cancer and extreme anemia?
Mostly likely both, which fact probably accounts for why the process of dying took only a few days.
Did Henry die by Voluntary Refusal of Food & Fluid, or by the loss of appetite that terminally ill cancer patients often experience?
Again, most likely both. Certainly, he did not seem hungry. But when I asked him to choose how he would prefer to relieve his dry mouth, he stated he would decline drinking liquid and deliberately chose instead the lemon-glycerin swab and a spray. This was a critically important decision.
How peaceful was Henry's dying?
The most peaceful I could imagine. Henry's process of dying was both gentle and gradual. Three days before he died, he had tried to control his environment by asking for his preferred hearing aid and for a change in his bed's location. One day later, he had to accept that he could hardly sit up. Over the course of a few days, he went from being able to converse, to show recognition only by hand squeezing, to just being alive and breathing, to not breathing. His end was softly marked by slower breathing that just stopped. The process was gradual, without a death rattle (that often comes from over-hydration). His last breath was like every other breath in his life, but for one exception: it was followed by no other.
Henry slipped peacefully away from this world. I do not understand where he went, nor can I appreciate where he is now. But there is something that I do know for sure. Henry experienced a dying he truly deserved: a gentle dying for a profoundly gentleman.
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),