Tag: support

“Go Wish”: The Game that Sparks Important End-of-Life Discussions

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The value of Go Wish lies in the consideration and
conversations that it intends to inspire.

Dr. Jessica Zitter writes about the importance of sharing/teaching end of life information with younger
people. She has started to go into high schools to do this. Whenever I have younger people in my
audiences when I present, I make a point of talking with them afterward. They are quite comfortable
with the information. They don’t want people their families or friends to suffer at the end of life.

Go Wish is a card game that broaches difficult questions about end of life and what is most important to
the participants. Created by the Coda Alliance, a community-based, non-profit organization that
promotes the planning and preparation for the individual’s ideal death, Go Wish has a simple but
effective construct. Each card presents a statement related to end-of- life decisions and it is up to the
individual player to sort it into piles based on importance. For example, statements written on the cards
may include “To have my family with me”, “To have a nurse I feel comfortable with”, “To take care of
unfinished business with my family and friends”. The value of Go Wish lies in the consideration and
conversations that it intends to inspire.

Considering one’s own death is daunting, maybe frightening, and often avoided. However, Go Wish
encourages each participant to reflect on their own priorities and needs, and comfort zones. By openly discussing the topic, the intention is that participants will feel less anxiety having
taken the time to deliberately contemplate and record their most important values at the end of life.
The conversations between family members and friends that follow will ease the minds of those who
may someday be placed in a position to help their loved one at the end of life.

Decks of Go Wish cards are available for purchase (in multiple languages) and to play for free on their
website, www.gowish.org ! When playing the free game alone online, it is even possible to print a copy
of how you sorted each statement by importance. You can then keep it in your personal important files,
and share it with family and friends. Visit their website for testimonials and examples of how to use the
cards to spark conversations about end-of- life decisions, options, and values!

The Gentler Symptoms of Dying

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From jokes, to songs, to demonstrations of gratitude, and smiles, dying people may, for biological reasons unknown, be given a final moment by the body’s complex systems to be alert with their loved ones and take a last look around with clarity.

Sara Manning Peskin, M.D., writes a vividly descriptive piece for the New York Times on a level of consciousness experienced near death coined by biologist Michael Nahm as “terminal lucidity”. While active dying can be confirmed in individuals by observing bodily symptoms such as “the death rattle”, “terminal agitation”, or “air hunger”, Peskin expands in detail on this subtler sign of dying.

The interconnectedness of the human body’s organs is referred to by Peskin as a “compassionate gift” because, as death nears and each organ system shuts down, they communicate to the brain to fall into a numbing slumber. Peskin states: “We may be able to sense people at the bedside on a spiritual level, but we are not fully awake in the moments, and often hours, before we die.”

Terminal lucidity is described as a burst of cognitive clarity and energy unusual compared to a dying person’s usual static state. Peskin details the biological functions and shut downs that cause bodily death which may happen in different sequences depending on the ailment. However, the mystery behind terminal lucidity is that it often occurs irrespective of the patient’s condition. A person dying with dementia, brain tumors, stroke, or kidney failure, for example, may all experience this sudden energy and awareness. “Nearly 90 percent of cases happened within a week of death and almost half occurred on the final day of life.” Peskin writes. From jokes, to songs, to demonstrations of gratitude, and smiles, dying people may, for biological reasons unknown, be given a final moment by the body’s complex systems to be alert with their loved ones and take a last look around with clarity. As Alexander Batthyány, an expert on dying, said: terminal lucidity is “the light before the end of the tunnel.”

This is an interesting article about lucidity before death. Of course, every death is different. My husband had a very conscious journey, using VSED (Voluntarily Stopping Eating and Drinking) as the means to cause his death. Each day of his 9 ½ day journey took him closer to taking his last breath. Each day, his way of communicating to me shifted a little. On the eighth day, he could no longer talk and his eyes were closed, but he could answer “yes” or “no” by moving his eyelids. This is I was able to know if he was physically comfortable. On the ninth day, he was in a coma with loud rapid breathing. Our doctor said he was brain dead and would die in one to three days. His heart was still strong. She left our house. I went into his room and spontaneously began to talk with him. We were communicating even though he was brain dead. I told him he was getting his wish and would not have to live into the late stages of Alzheimer’s. I told him how brave he was and that I was going to be alright. Then he took his last breath. He went from the loud rapid breathing to taking one or two loooong, quiet, gentle breaths. He left.

All of this is explained in more detail in my recently published book, Choosing to Die. I hope you take the time to read this first memoir and guidebook written about VSED as a form of elective death in the face of degenerative disease.

 

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.

Death By Design

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More people than ever are choosing to be cremated, yet crematoriums are often grim places.”

In America and Europe, the decision and demand to be cremated is growing faster than what the crematoriums are capable of handling. Yet everyone wants to have proper ceremony and decorum surrounding the death of a loved one. Dominic Nicholls writes the story of architects attempting to provide a suitable space where people can remember their loved ones after choosing to be cremated.“…Death is a part of life. Once we leave the Earth we are still part of the universe, and architecture can help connect the two.”

Companies like RCR and Sacred Stones are trying to create a new model for burial services to meet the rising desire for cremation. This currently comes in the form of a sleek looking room that provides intimacy and privacy, or iconic burial mounds found in Anglo-Saxon areas of Europe. Both ultimately give people the same thing. A place to quietly have a moment to reflect on the memory of the ones no longer with them.

Death By Design Article

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

End of Life Choices For Young People With Life Limiting Conditions

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Many parts of Europe are far more enlightened about end of life choices and the compassion that surrounds it. It is horribly sad when we think about young people dying early in their life. Yet when this occurs, we want to have compassionate choice available to us. End of Life choices affect not only elder people but young people too. Below is a link to a full case study and guideline recommendations on how to deal with end of life care, compassion and choices with young people 0-17 with life limiting conditions. 

https://www.nice.org.uk/guidance/ng61

Important End of Life Conversations

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This is an all too human story. Having supported my mother and my husband through their end of life choices, I am grateful for the clarity of information that existed between them and me. They were open about their wishes. We had good communication. Many people don’t have these conversations because it creates discomfort for them. Usually, it’s the children who have conflicted issues about discussing the end of life. They don’t want to acknowledge their parents’ deaths.  Following that, they have to acknowledge their own death because it is something we all will eventually face. 

I remember how difficult it was for me to talk about these issues with my own mother. It took years before I got comfortable with it. The conversations made me feel very sad because I had to face that I would lose her someday. I loved her very much. Nevertheless, I learned so much about end of life issues from her courageous demonstration. She was a teacher to me. She certainly helped me pave the way for clear communication with my husband once he was diagnosed with both Alzheimer’s and laryngeal cancer. 

https://www.facebook.com/humansofnewyork/photos/a.102107073196735.4429.102099916530784/1458675897539839/?type=3&theater