Phyllis Shacter, Author at www.phyllisshacter.com

Legality Surrounding the Choice to VSED

Posted onJuly 4, 2017July 7, 2017

Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

A Better Way To Care For The Dying

Posted onJune 23, 2017June 23, 2017

With advances in modern medicine people are living longer. The Economist article states

“People in rich countries can spend eight to ten years seriously ill at the end of life”.

Also 3/5 of current deaths come “after years of relapse and recovery.” What this brings to the current status quo is unnecessary pain and suffering for many elderly individuals and their families who do not have an end-of-life care plan. This issue comes not only from people’s challenge with having the difficult conversation but also with the medical profession. Susan Block of Harvard Medical School says “Every doctor needs to be an expert in communicating”.

Doctors tend to be overly optimistic about how long terminally ill patients have to live. This causes many to leave things unsaid and end-of-life wishes unwritten. Recently Americans have seen a rise in planning for treatment care in case of incapacity. However, we are far away from where we need to be. The medical profession as well as individuals must become better at dealing with the inevitability of death.

We can find our ways to deal with the inevitability of death. Some of us may not find these ways. That is our choice. I learned a great deal observing my husband as he prepared for his death. He acknowledged that he was going to die soon and he dealt with unfinished issues in the last six months of his life. For him, he needed to resolve issues that he had with his mother who was no longer alive. With the help of a therapist, he was able to do this. This brought him deep peace. In addition, he and I met with a chaplain two months before he died. She has much experience in helping people, who are close to death, to prepare for their own. Alan was able to talk about the kind of death he wanted to have. Because he had chosen to VSED (voluntarily stop eating and drinking), he knew approximately when he was going to die. He planned the music he wanted to listen to. We talked about what people would be around him during this time. He talked about what his legacy would be to others. This two-hour conversation covered many issues.

A Better Way To Care For The Dying Article

What are our choices? How can we educate ourselves and face these choices?

Posted onJune 17, 2017June 23, 2017

Last Sunday, June 11, 2017, I spoke at our local Village Books bookstore in Bellingham. We had a good turnout, about seventy people. What strikes me is that people are truly eager to have information about end of life choices. When I present publicly, I use my personal story as a launching platform, and it does have to do with VSED, Voluntary Stopping Eating and Drinking. But the larger issue is “choice.” What are our choices? How can we educate ourselves and face these choices?

What are our choices? How can we educate ourselves and face these choices?

Because of our collective and personal fear of dying, we can go through much of our life acting as if we are not going to die. I got very good at this myself. But then I realized that under all of my fears in my life was my fear of dying. Then life gave me the lesson of getting up and personal with death by taking care of my husband when he had both cancer and Alzheimer’s. Besides being his caregiver, I became his student in a sense. I asked him lots of questions during the last year of his life about how he was perceiving his own end of life. I took copious notes and really wanted to hear what he had to say. Those notes made it possible for me to write my book, Choosing to Die.

I’m not sure I would have been able to evolve my own perspective easily if I hadn’t taken care of my husband. I wrote my book as a way to share our story as completely and intimately as possible. I’ve received some feedback from readers and have been told that their own fear of death has been lessened as a result of reading this book. This is very reassuring.

Choosing To Die Excerpt Part IV

Posted onJune 2, 2017June 23, 2017

My recently published book, Choosing to Die, is the first personal story ever written about Voluntarily Stopping Eating and Drinking (VSED). I am continuing to share excerpts from the Foreword, written by Dr. Timothy Quill, a well known palliative care doctor who is a leader in end of life issues. In much of 2015 and 2016, we both helped to organize, and speak at, the first national conference on VSED which was held at Seattle University in October 2016. Dr. Quill was the first keynote speaker.

My book goes into great detail. It is a love story, a partnership, and a journey I took with my husband as we traversed new territory. Now I share this information with others as a means to help educate others. For more resources and information on end of life choices, VSED and my personal story see the rest of my website.

The beginning of the excerpts are here.

“One of the best aspects of this book is that Phyllis is not overly romantic about her story, nor is she overly negative. This book is full to the brim of practical wisdom learned through experience—critical information for anyone who is now contemplating or might ever consider the option of VSED. The book contains no shortage of dilemmas that do not have easy answers. What is the right time to initiate the process? How does one avoid starting too early given the risk of waiting until it is too late? How much decision-making capacity does the patient need to make this decision? How do caregivers manage the patient’s desire to drink when the patient no longer remembers why he or she is not drinking? Can we offer this option to patients who do not have an advocate like Phyllis to organize and provide the care? Is it realistic to do this at home for patients who do not have the psychological, social, and financial resources that Alan and Phyllis had? Should VSED be permitted and supported in inpatient palliative care or hospice units? Should all seriously ill patients be informed about this option, or do they have to discover it on their own?

None of these questions has an easy answer, nor does Phyllis pretend to solve all such dilemmas in this book. Instead she has openly and compassionately described her VSED journey with Alan so that we can learn from her experience.”

Foreword Excerpt Part III

Posted onMay 28, 2017June 2, 2017

The first and second parts of the foreword have been previously posted.

” Of all the “last resort” options for elective death—including physician-assisted death, voluntary euthanasia, palliative sedation, and stopping life-sustaining therapies —VSED is the least well-described or understood by the general public. This valuable, groundbreaking book fills that gap, and is invaluable reading for any patient and family seriously considering embarking on VSED—whether soon, because of a current condition of unacceptable suffering, or for some time in the far-off future, for those exploring the full range of legally available end-of-life options. The aging of the population due to advances in public health and medical treatments means that the number of people who will eventually develop degenerative diseases will increase. If you read this compelling and informative story now, you will forever after know that VSED exists, should you or any loved one ever be in a position to need it as an option.”

Foreword Excerpt Part II from Choosing to Die

Posted onMay 23, 2017May 23, 2017

My recently published book, Choosing to Die, is the first personal story ever written about Voluntarily Stopping Eating and Drinking (VSED). I am continuing to share excerpts from the Foreword, written by Dr. Timothy Quill, a well known palliative care doctor who is a leader in end of life issues. In much of 2015 and 2016, we both helped to organize, and speak at, the first national conference on VSED which was held at Seattle University in October 2016. Dr. Quill was the first keynote speaker.

This is the second excerpt. The first excerpt is available here.

“This book offers readers an inside look at the many challenges leading up to, carrying out, and then making sense afterward of this decision. Phyllis walks the reader through every step, from Alan’s initial diagnosis, to searching for options for escape, to learning about VSED as a last resort option, to deciding when to begin the process, to carrying out the final phase, to experiencing profound bereavement, and to gradually picking up the pieces of her life after Alan’s death. VSED is not a journey for the faint of heart (but then, neither is prolonged degenerative disease). VSED is filled with times of intense intimacy and disconnection, with caregivers and friends, including those who step up and help and those who are frightened or disapproving. Phyllis’s book does not shy away from the hard parts of Alan’s story, as well as the parts that wereuplifting and inspiring.”

Excerpts from the Choosing to Die Foreward

Posted onMay 21, 2017May 21, 2017

My recently published book, Choosing to Die, is the first personal story ever written about Voluntarily Stopping Eating and Drinking (VSED). For the next few weeks, I will be sharing excerpts from the Foreword. It is written by Dr. Timothy Quill, a well known palliative care doctor who is a leader in end of life issues. In much of 2015 and 2016, we both helped to organize, and speak at, the first national conference on VSED which was held at Seattle University in October 2016. Dr. Quill was the first keynote speaker.

“Of all the illnesses to die from in this life, Alzheimer’s, ALS, Parkinson’s and other degenerative diseases have to be among the most daunting. The amount of time from initial diagnosis to eventual death is measured in years rather than months. The prognosis is so long and so uncertain that hospice, the premiere program designed to help provide comfort and dignity at the end of life, is not available until the very last stages. Patients with these diseases eventually become completely dependent upon others, so the shattering impact is on families as well as patients. Is there any way to escape the suffering and indignities that these diseases inevitably create?
This was the challenge faced by Alan Alberts. In this remarkable book, his wife Phyllis gives us an inside look at one couple’s effort to come to grips with and take charge of a devastating diagnosis.

Alan was diagnosed with Alzheimer’s. He wanted to live as long as he could remain cognitively intact and, to at least some degree, be in charge of his life. But he also wanted to escape the long relentless decline and complete loss of self associated with the late stages of Alzheimer’s disease—even if it meant hastening his death. Together Alan and Phyllis explored whether he could have access to a physician assisted death, and learned that even though he lived in one of the six states in the U.S.A. where this practice is currently legal, he would not qualify because his prognosis was too long and uncertain. They then discovered the possibility of voluntarily stopping eating and drinking (VSED for short), a process where a seriously ill patient, at a time of his or her own choosing, makes a decision to completely stop eating and drinking in a deliberate effort to hasten death. Alan decided that VSED was his best option.”

Prolonging Death is Not Extending Life

Posted onApril 25, 2017May 14, 2017

Death isn’t a four-letter word, and doctors need to learn that.

This article brings up a critical issue: Medicare will pay for hugely expensive medical procedures at the end of life, but it will not pay for twenty-four hour home care. Most people would rather be a home when they die, but many people also require good and skilled comfort care. Medicare doesn’t pay for this. This is outrageous and everyone suffers. Huge amounts of money are spent on surgeries and intensive care in the last weeks of life.

Quality of Life Versus Length of Life

Posted onMarch 30, 2017May 14, 2017

This study from the Journal of Pain and Symptom Management discusses patients who undergo life-sustaining procedures at the end of life. It turns out that this creates more stress for their loved ones.

One of the ways we can show our love to our family is by having a clear Health Directive that is witnessed and notarized. In addition, it’s essential that we discuss our wishes with our families and specifically with our health agents who will represent us when we cannot represent ourselves.

This is a link to the abstract with encompasses the entirety of the article. The full article is available for purchase if you’re interested in reading more. This is a resourceful journal.