Transcript of Expanded TEDx Presentation
Presented September 26, 2015
I’m going to share a very personal story with you about Love, Courage and Choice.
Toward the end of 2011, my husband, Alan, was diagnosed with both Alzheimer’s disease and laryngeal cancer. Ultimately he decided to voluntarily stop eating and drinking as a peaceful means to the end of his life. Sometimes I will refer to this as VSED, voluntary stopping eating and drinking. Alan died one month shy of his 77th birthday. So he is Not Here By Choice.
A few weeks before he stopped eating and drinking, he was sitting at the breakfast table. I glanced over at him and noticed that he was crying. I said, “Honey, what are you feeling? He said, “I’m not afraid of dying. I’ve lived a good life, but I want everyone to know about VSED.”
I spontaneously replied, “You’ll just have to trust that I’ll be your vehicle.” And here I am today sharing these exact words with you.
Death is something most of us don’t want to think about. It frightens us. But I’m suggesting you take the time now to learn that you have more choices about the end of your life than you may be aware of. If you do this, you may have more joy and peace in your life today.
I’m going to tell you about my husband and the five unusual choices he made during the last year-and-a-half of his life.
Alan was a very special man. I never met anyone who didn’t like him. He loved to learn and was very curious. He was a good musician and played improvisational jazz piano since he was young. He was a Harvard graduate and worked with computers for his career. For many years, we worked together in our own business and technology consulting partnership.
We had a wonderful marriage for 26 years. One of my favorite things of our relationship was our ability to laugh at each other and ourselves. For many years, rarely did a day go by where we didn’t have a deep belly laugh. We were best friends.
In 2007, we both noticed subtle cognitive changes in Alan. He was examined in 2007 and 2009, but the neuropsychologist could find no disease. For four years, we went through a medical maze, going from specialist to specialist trying to find out why Alan didn’t feel well and had such increasing fatigue.
We now know that Alzheimer’s begins many years before it is detected. Finally in 2011 Alan was diagnosed with dementia, of the Alzheimer’s type. And only six weeks later, he was also diagnosed with laryngeal cancer. For six years Alan had a HPV viral wart removed from his vocal cord with a laser every three to four months. This is what became cancerous and it needed immediate attention.
His throat surgeon did not mention anything about the Alzheimer’s or the effect of the anesthesia on his brain. He just said that Alan had to have a series of three invasive surgeries. He said Alan would most likely die a painful death within six to twelve months from the cancer if he didn’t have the surgeries. Alan was also told that the surgery might leave him without the ability to speak, swallow or breathe easily. We bought into the current medical model and scheduled the first surgery. But while we were waiting for the surgery, we asked ourselves, “Is surgery the only choice?”
Alan thought carefully about all his options and made his first unusual choice. There would be no surgery. Instead, Alan made his second unusual choice — to follow a strict naturopathic healing protocol. I became like a drill sergeant making sure Alan took all his supplements and followed his procedures from morning to night.
In addition, Alan wrote a prayer and I emailed it to friends and family throughout the world and asked them to say this prayer at 7:30pm every evening. This is the prayer that Alan wrote:
Each evening, at 7:30pm, Alan and I sat together quietly, and I read the prayer aloud and together we focused on his healing.
Because we didn’t know if these healing options would cure the cancer, and because Alan did not want to have a painful death from laryngeal cancer, as his Advocate, I then contacted Compassion & Choices of Washington to learn about the DWD law. They were very kind and helpful to me. Alan and I met with two primary care doctors in Bellingham, and he qualified for the lethal prescription. The prescription had a six-month expiration date on it.
The DWD law cannot be used with Alzheimer’s and some other neurological diseases. One of the requirements for the DWD law is that a person be mentally competent and in the last six months of life.
Then an amazing thing happened. Only four months after Alan began to use alternative healing modalities, we visited the throat surgeon and he examined Alan, and the doctor spoke the exact words that Alan had visualized: “I can find no cancer, and the HPV viral wart is gone too”. Alan remained cancer free to the last day of his life. We celebrated this good news with a large group of people who came to hear us present the details of this profound healing.
But the joy we felt that evening only lasted about four more weeks because the Alzheimer’s became very noticeable and we could no longer deny it. I remember that for the following week we both just cried and cried and cried together.
There was a fair amount of Alzheimer’s in Alan’s biological family, and his mother had it for at least 10 years and died a shadow of a person with no physical capacities. My father also had Alzheimer’s.
I received a phone call from my mother in February 1987, just a couple of days before I had my first date with Alan. She asked me to get to their house as soon as possible. At this point, my mother had been a caregiver for my father for many years through a heart attack, prostate cancer and now Alzheimer’s. Very little was known about Alzheimer’s at that time, and there were almost no support systems. My mom was sleeping in a separate bedroom, and she barricaded the door with furniture in case my father tried to come into the room to harm her. He had threatened her life on previous occasions. She called 911 each time. He was always asleep on the couch when the police arrived, and had no idea that he threatened my mother. That can be the nature of this cruel disease. Alan and I both knew what lay ahead for him if he lived with into the late stages of Alzheimer’s.
Alan knew he was declining quickly. He was sleeping at least sixteen hours a day. Now he made his third unusual choice. He wanted to be at his own funeral. He used to laugh at how backwards it seemed that funerals happened after someone died. Alan wanted to be present to all that love and attention. So six months before he died, while he could still speak fairly well, we held a Celebration of Life and many friends joined us. Alan talked. I talked, and many others shared their affection with Alan. It was a beautiful celebration. So Alan had his funeral, and he was certain he didn’t want to live into the late stages of Alzheimer’s. But now, what choice was left to him?
That was when one of the volunteer chaplains from Compassion & Choices of Washington told me about Voluntary Stopping Eating and Drinking or VSED. I did some legal research about VSED and legal ways to die. I focused on a long paper by Thaddeus Pope in the Widener Law Review. He is a health law professor. I shared all this information with Alan. VSED became an option for him.
We also learned that the Supreme Court ruled in 1990 that any individual has the right to refuse unwanted lifesaving medical treatment. And the Supreme Court has asserted time and again that we each have a right to refuse hydration and nutrition.
Only a mentally competent person is capable of the consistency and discipline that is required to successfully VSED. Even the decision of a mentally competent person to VSED, who is not already very close to death, is often misunderstood or misinterpreted by hospice and long term care providers. This was the case with our local hospice, Peace Health Whatcom Hospice in Bellingham. They said they would not provide hospice to my husband until he was in the late stage of coma. I felt my husband would suffer if this occurred.
In the past year, I have spoken to other hospice medical directors in the Seattle area and they said they would have accepted Alan and supported him through the VSED process. Very recently, I learned about one hospice in Seattle that did accept two women who chose to VSED at the end of their life. One woman was in the earlier stages of dementia. They accepted her on the second day of her fast. It is essential that there be adequate medical support if someone is going to VSED.
It’s important to know that many health lawyers and ethicists believe that a decision to VSED by a mentally competent person is legitimate and deserving of respect. Currently, I am working with a group of medical, legal and academic professionals, and we are planning the first VSED national conference, to be held in the Seattle area at a University toward the end of 2016.
Another situation is also occurring. Dr. Stan Terman, caringadvocates.org has a team of people who help prepare Living Wills that state that if a person develops dementia in the future, and gets to the point of no longer being able to feed him/herself, then that person’s agent can be designated to request that the patient no longer be fed or given liquids. This Living Will is executed while the person is still mentally competent. The Living Will can state that food be put near the person. Because the person is incapacitated to feed himself or herself, their death will effectively be hastened. Due to the fear of legal charges of neglect, most facilities will not do this at this time. If you were to execute this kind of Living Will and your loved one is no longer mentally competent, make certain that the facility would be willing to respect your wishes. My husband was clear that he did not want to live to this stage of Alzheimer’s in a dementia facility. So this was not an option he chose.
It took Alan time to make his final decision. While he was exploring choices, Alan was the one of the first people in WA State to fill out the Alzheimer Advance Mental Health Directive. It was thorough and it protected both his rights and my rights as his wife while he was still alive. You’ll hear more about this Directive from our last speaker.
Before Alan made his final decision to VSED, he wanted to explore one more Choice. He wanted to visit a good dementia facility. I thought this was a good idea too. I wanted us to be informed so Alan could make a clear decision. We were fortunate because we had an excellent long term care insurance policy that would pay for his care. I picked the most expensive and reputable facility. It would cost about $72K/year. The place we went to was clean and cheerful; there were no locked doors; the staff was pleasant. But the people who lived there had frozen faces. They looked lifeless, and were heavily medicated. Within a few minutes of our tour, we both had to sit down because we were both shaky and crying at what we witnessed.
As soon as we left, Alan turned to me and said, “I will never live there.” That was his fourth unusual choice.
Alan knew he could go on living for more years. But he also knew that his brain and his mental faculties were diminishing quickly. So he made his fifth unusual choice. He decided he would stop eating and drinking so he didn’t have to live into the late stages of Alzheimer’s. I told him I would support him through this process even though this was the most difficult thing I ever had to do. I cried often, alone and with Alan, anticipating the loss of my best friend. I was in an almost constant state of anxiety wondering how this would finally resolve.
After Alan made his decision, people in the community began to hear about it. Some people became uncomfortable and said, “This is wrong.” And some of you may be thinking, “That was wrong. Why did he stop eating and drinking? He was still walking a little, talking a little, and able to eat. He was still mentally competent.” He still had some quality of life left. But for Alan, it wasn’t enough, and he knew he was declining quickly, and he knew he had to be mentally competent in order to follow through with the VSED process. It’s an issue for each individual to answer.
Some people wondered, “Is he committing suicide?” Is he doing this so Phyllis won’t have to struggle?
There is a very important distinction to make between suicide and Alan’s choice. Our words matter. Suicide is about saying “NO” to life. Alan was saying “YES” to life, up to his last breath, on his terms. Suicide is violent and outside the natural order. It’s an emotional decision and perception and usually done with emotional imbalance. It hurts one’s self and others, and has to be done secretively.
In contrast, Alan’s choice was about self-love, peace, and compassion. Alan was saying YES to life up to his last breath. He made a conscious, deliberate decision to have an organic death by means of not eating and drinking. He was grateful for the good life he had and he honored life up to his last breath.
Once he made his decision to VSED, Alan lived in a state of deep, calm accepting presence. He spoke these actual words to me two months before he died, “I am comfortable and at ease with everything. I just feel great all the time, even when I’m tired. I’d love to help people reduce their suffering. People notice how happy I look. I think that’s important because I’m really at the end of this life. I’m sure it goes on. I don’t know how to share this with other people. It’s up to you Phyllis to do that.”
Also about six weeks before he started his fast, I was visiting a close friend in Arizona, and I called Alan twice each day. One night, he told me that as he was falling asleep, people who have passed over were waiting for him. He said “what I see is a living, moving picture; not a static picture.” He says he thinks his family is waiting for him, his mother, his father, his aunts and uncles. He says this in soft, relaxed tones, with absolutely no fear. He says the experience is real. His voice is gentle as if he were almost already living this reality. I asked him, “Are you beginning to look forward to what comes next more than what you have now? He says, “Yes.”
He said he thinks people have a lot of control over when they pass. And he said with certainty that he would be able to communicate with me after he passed.
About three weeks before he started the VSED process, with tears in his eyes, he said, “Since I don’t know about this, probably not a lot of people do. And it sounded horrible. Now that I’ve investigated it, it doesn’t sound horrible, and I’m going to VSED.”
I kept checking in with Alan to make certain he didn’t change his mind. In fact, I asked him so often that he finally said to me, “Please don’t ask me anymore. I’ve made up my mind.”
Although I supported Alan’s decision, it was completely heart breaking that I was losing my husband. I wanted us to grow old together. I wasn’t going to get to spend the last chapter of my life with him. I cried a lot, and we cried together. I did my best not to cry often in front of him because I didn’t want him to be burdened by my grief. Of course he still knew how difficult this was for me. But he had to focus on his decision. He knew that I was on my own journey, and I would have to deal with this in my own way. I had professional support and a community of friends to help me, and I knew that the only way to get over the depth of the grief was to go through it and experience it.
Even though some people were uncomfortable with Alan’s decision, the truth is that after this intense process was over, and Alan was no longer with us, many people came forward and expressed what a profound effect Alan’s Choice had on them. People perceived Alan’s actions as loving and courageous and a demonstration of his civil rights. They saw dignity in his death and some felt deep relief knowing that this option is available to them in the future if necessary.
Alan had identified a marker, when he would know it was time to start. He had been the keyboard player for seven years at our Center for Spiritual Living. That Center represented love and community to him. When he no longer had the energy to leave the house and go there anymore, he said he was “done.” At this point he was sleeping about 16 – 18 hours a day. He also had some Parkinson-like symptoms. He was losing functions quickly. I felt that in a couple of months he would no longer be mentally competent and would not be able to follow through with his decision. I told him this.
So we consulted with a couple of other people, and he decided to pick an exact date to start the process of not eating and drinking. Alan had been seeing an excellent doctor for some years. For many months, prior to him starting the VSED process, we both talked with her privately about Alan’s wishes. When our local hospice said they would not help Alan until he was in the end stage of coma, I contacted our doctor. She knew how important this was to Alan. She was aware of how he was declining physically and mentally, but also knew that he was still mentally competent. She respected his decision and came forward to make sure Alan was comfortable and did not suffer during the VSED process.
Five days before he started, he only ate 500 calories a day to get a jump-start on the process. Also, several days before Alan started, as an extra precaution, our elder care attorney came to our house and met with the caregivers and Alan and me. She wrote up papers that were witnessed and notarized to protect me and his doctor and the two caregivers. I also had a copy of his Health Directive, a copy of his Alzheimer’s Advance Mental Health Directive, and a copy of the paper that described VSED and other legal ways to die, written by Thaddeus Pope. This came in quite handy because someone in the community did call Adult Protective Services, and they visited us, unannounced, on the morning of the third day of his fast. The social worker wrote a favorable report and nothing came of this.
Alan actually told the doctor at the beginning of the process that he wanted to remain as conscious as possible with medication only on an as needed basis. He had only small amounts of medication for the first several days. As he got more dehydrated and his body began to shut down, the doctor stayed one step ahead of him and made sure that he was kept comfortable with the proper medication. I didn’t want him to suffer at all.
The relationship between a patient and a doctor is very important. The key to success in using VSED is having a supportive physician who is willing to prescribe medications to lessen anxiety and discomfort as the body begins to shut down.
It is ideal if the physician is not at all hesitant about prescribing sufficient medication to sedate the patient if requested and desired.
In addition, Alan prepared himself emotionally. He already had his Celebration of Life. He got the necessary support and resolved important issues from his life. He felt settled and very loved. You can find a lot of detail about the medical and legal preparations on my website PhyllisShacter.com. I have business cards available that give you the name of my website and the link to my TEDx talk.
It took Alan 9 ½ days to be Not Here By Choice. Once he started, he never looked back. He basically went to bed and stopped eating and drinking. He remained quiet and asked for very little. He didn’t complain nor say he was hungry.
On the fourth and fifth days, he asked for water. Both times, I reminded him why he wasn’t eating and drinking and told him that drinking water would prolong the process. Then I said to Alan, “would you like me to give you a glass of water or would it be enough to satisfy your thirst by spraying mists of water into your mouth? Both times he said the mists of water were enough. I did this until he was relieved and comfortable. Also on my website, I have included the log that we kept with the details about what occurred during the 9-½ days during Alan’s passage.
Our doctor made 3 house calls during the 9-½ days. She was also available 24 hours a day if we had any questions, and we did need to call her a number of times. Our long-term care insurance policy paid for two wonderful caregivers who provided support 24 hours a day. Although I believe it is helpful to have professional caregiver support, not everyone will be able to afford this. It is possible for friends and family to get some training and be able to step in and help. On the blog of my website, there is a list of all the supplies that are needed to care for someone while they are going through the VSED process. Also, if someone is at home and under hospice care, hospice will provide considerable support.
Alan was grateful for his good care, and as long as he could, he continued to thank the people around him for the good care he was receiving. “Thank you. Thank you. Thank you.”
As long as Alan was conscious, his daughter called daily from California, and we put the phone by his ear and she would talk to him. By the fifth day, I began to spend a lot of time with Alan in his little single hospital bed. This was comforting for both of us. On the sixth day, while I was in bed with him, he began to speak in metaphorical language. Very softly and slowly, “I’ve got to get the milk.” “The people are at the party.” “What time is it?”
When Alan could no longer open his eyes or speak, I wanted to make sure he was physically comfortable and free of suffering. I got close to him at his bedside and said, “Alan, I am here with you. If you are comfortable, blink your eyes,” and with his eyelids still closed, he was able to move them. And while he was in that state, he was still able to move his lips and mouth his last words, “I love you.”
By the ninth day, Alan was in a deep coma with loud, rapid breathing. Our doctor examined Alan and said that he was very close to death; that only his brain stem was still alive and he would probably live another 1 – 3 days because his heart was still strong. But I felt Alan was really no longer with us. I wanted to help him release from his body. I wasn’t sure what to do. After the doctor left, I stood alone in the room with Alan at his bedside. The doors were closed. I waited until I knew what to do.
Then with a great deal of presence, I actively began to do Therapeutic Touch. This is a deep healing energy modality that I learned from nurses many years ago. I used my intuition and began to move my hands vigorously from Alan’s head, down his body and toward the window that was close by.
And then I waited a little more, and then I began to talk to Alan. It sounded more like a pep talk. “Alan, we’ve partnered together for 26 years. We’ve supported each other through everything. This is our last partnership, and I’m right here with you. You’ve been so courageous, and you’re going to get to do what you really want to do. You won’t have to live into the late stages of Alzheimer’s.
Then I just stood still and waited. He was still breathing fast and loudly. And then, I began to sing something sacred and very meaningful to me. It was something that was familiar to Alan too.
And then I began to talk to Alan some more. I had the strongest sensation, a knowing, that Alan had already left his body even though he was still breathing loudly. I looked up and to the right and said, “You’re not even in your body. You’ve already left. You’re watching the whole thing. I told him he was very courageous and that he was only holding on by a couple of threads and that it was OK for him to let go and that I was going to be OK. I said, “You can release yourself and be free. I’m going to help usher you home. There’s nothing else that you have to do. I’m going to midwife you home.”
While I was talking to Alan, his breath abruptly shifted from the loud, rapid breathing to a quiet, gentle breath. (Demonstrate). He took just a few more of those quiet, long breaths. His last breath was so quiet; I couldn’t even detect the last breath. Instead of it taking 1 – 3 more days like the doctor had said, he left his body in about 15 minutes with me at his bedside, talking to him and loving him.
Every step of the way, Alan made HIS choices. He chose not to have surgery. He chose to use naturopathic healing. He chose to be at his own funeral. He chose not to live in a dementia facility. And he chose not to live into the late stages of Alzheimer’s disease. His final decision to be Not Here by choice brought him great peace.
Everyone needs to know we have legal rights and choices about how and when we die. It’s not up to our doctors or anyone else. Alan’s choices may be different from the ones you will make. But my wish is that everyone is empowered to participate in the planning of his or her own death and is able to have the kind of peace that my husband experienced.
It’s now almost 2 ½ years since Alan died. I’ve experienced a profound grieving process. Now I am feeling joy again. I am grateful for the years I had with Alan. The legacy he left to me is one of deep love, courage and knowing that all is well eternally.
Even though I miss my husband very much, I’m glad he didn’t have to suffer and live into the late stages of Alzheimer’s. My support of my husband through his process, his choice to die peacefully and consciously was my biggest act of love.
Thank you very much.