Tag: death

Here is another recent podcast with Death by Design

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The concept of “Death by Design” is to inspire individuals and their families to create a blueprint for an inevitable journey that reflects the beauty of life and the positive destination of end of life.

Episode 32: Phyllis Shacter, Author/ Advocate of VSED

Each of these podcasts have felt very unique because the interviewers have been asking me different questions. Here is the info to the Death by Design podcast I did last week. I hope you enjoy it.

August 03, 2017 – Death by Design podcast: Episode 32: Phyllis Shacter, Author/ Advocate of VSED. Applying her vast experience as a storyteller to her passion, Kimberly C. Paul is radically changing the way people face end of life. The concept of “Death by Design” is to inspire individuals and their families to create a blueprint for an inevitable journey that reflects the beauty of life and the positive destination of end of life.

 

 

Choosing to Die | VoiceAmerica

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Phyllis Shacter’s husband made a series of radical choices about how his life would end. When he received two life limiting diagnoses within six weeks of each other, Alzheimers and cancer, he refused cancer treatment and employed natural methods instead.

See the link below for my live interview with Cheryl Jones on a program called “Good Grief” on voiceamerica.com, Wed., July 26, 2017, at 2:00 pm PST. I look forward to sharing my transformative journey through the grieving process. You can listen live, and it will be available afterward also.
It was not an easy journey to be an advocate for my husband when he decided to VSED (Voluntarily Stop Eating and Drinking) so he didn’t have to live into the late stages of Alzheimer’s. I dove deep into the grief, and over time this grieving energy transformed. My husband achieved his wish to not suffer through the late stages of Alzheimer’s, and over time, I became “free” again, feeling joy and gratitude for the gift of life.

Source: Choosing to Die | VoiceAmerica

Legality Surrounding the Choice to VSED

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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

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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.

Being An Advocate For VSED For a Loved One

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The very good news is that law will uphold a right to VSED in the context of persons stricken with fatal or serious degenerative maladies.

There will continue to be grey areas and varying perspectives about whether or not a Health Directive, when written when someone is healthy, will hold up and be followed when someone is in the late stages of dementia and is no longer mentally competent. This is a good article exploring this issue. Certainly at this time, I would not rely on a Health Directive to dictate whether or not a person is fed in the late stages of dementia. 

Maybe the issue is bigger and deeper. Maybe the issue is getting clear about the kind of death we want to have. This is something that my husband spent a lot of energy on before he made his decision to voluntarily stop eating and drinking. His demonstration became his legacy to me. It motivated me to look closely at my own thoughts about death and death, and my fears surrounding this. I go into depth of my journey through grief on my website. In my own way, I am already preparing myself emotionally for my death. And I expect to live many more good years! Rather than avoiding this charged issue, I’ve begun to explore it myself. This doesn’t mean that I won’t change my mind. But increasing clarity is bringing me more peace of mind. There are no easy answers. This is deeply personal.

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?

Spiritual Beliefs are Important when Preparing for your Death

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Many religions accept death as a part of life or a state of transition. Discussing death as a part of life, being more accepting and educated about end of life care is something thinking about long before you die.  Write all your needs in your Advance health directive and talk to your health providers about it. We can all live our lives to the fullest and not fear death. Death occurs to everyone. It is simply a part of life.

 

If you are interested in different religious ideas around death, this is a great resource. By expanding our thinking cross-culturally we can understand death in more than our own way. Education is a key part of the dying process. By thinking about what occurs after death can make death more approachable. Even if you are not religious assessing your values and how you want to leave your body can affect your end of life decisions.

Reading about beliefs and aspects of other spiritual practices can help you identify how you see death and want to make your directive for end of life.

http://lmrpcc.org.au/admin/wp-content/uploads/2011/07/Customs-Beliefs-Death-Dying.pdf

Loddon Mallee: Regional Palliative Care Consortium

We’re Not Too Young

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As newly weds it was important to have a discussion about what matters most at the end of life so we can make the right decisions for each other when the time comes

I hope that someday everyone fills out a health directive when they become an adult at 18. Our parents are legally responsible for us in the United States until then. At 18 ideally everyone should fill out a health directive. If you don’t do this and you are in an accident or get a terminal disease doctors and hospitals have a the legal right to make all decisions for you. Your health directive ensures that your loved ones will be able to represent you and your wishes. I filled out my first health directive when I was 40. I still didn’t believe I was going to die someday. I know It is challenging to think about a health directive when you think you are immortal. They vary from state to state, but what is important is what you write. Nevertheless, we are all going to die and we all want to have a good death. We are all familiar with death and through figuring out what what state we want to live into is something only you can decide. That is why preparing is important even when we are young and do not think about death.

A touching story of two Newlyweds 

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

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When my husband was diagnosed with Alzheimer’s disease, instead of living into the late stages, he chose to vsed. I was his advocate. We discussed everything. He had excellent support. In order for my husband to have a good quality of death there was a lot to talk about. Being able to comfortably talk about end of life is essential in order to prepare for a good quality of death.. Informing ourselves and others without judgment is key to living a good life and having a good death. Cultivating support systems will help yourself and others.

This article reiterates the difficulty of discussing end of life with someone in every stage of Alzheimer’s disease and how you can try to communicate how they want to leave their body

The Conversation Project is a great resource for end of life preparation and support.

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

Why Aren’t We Talking About It?

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I wrote my first Health Directive when I was forty years old. It felt uncomfortable. Now it feels so routine when I update my Health Directive because I’ve exercised the muscle of learning about end of life choices. I acknowledge that death is a certainty and an extension of life.

Maybe someday everyone will fill out a basic Health Directive when they get their driver’s license. Once we turn eighteen years old, if we don’t have a Health Directive, we turn our power over to the medical profession to make decisions for us. By talking about our values and wants with loved ones we can pave the path to a more conscious way of dying. 

The conversation project is also a great resource for discussing end of life choices.

http://theconversationproject.org/

End of Life Choices Conversation Starter

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It’s important to have many ways to initiate the conversation with your loved ones about your end of life wishes. Then they can be written into a formal Health Directive which is witnessed and notarized.

This is another tool to help you get started and stay on track!

As elders in our larger community, we have a responsibility to be role models for younger people. I feel this all the time in my own life. I’m aware of how keenly younger people want to know about aging and end of life issues.

http://www.aafp.org/news/health-of-the-public/20161205conversationstarter.html