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

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

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!

Brittany Maynard’s Widower Continues Fight for Her Legacy.

[pullquote]  Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death.  [/pullquote]

It was heartwarming to personally talk on the phone with Dan Diaz not too long ago. Both of us are working to uphold the legacy of our loved one who died. Dan’s wife, Brittany, died by taking advantage of the Death With Dignity law. She had to move to Oregon to do this. My husband, chose to VSED (Voluntarily Stop Eating and Drinking) so he did not have to live into the late stages of Alzheimer’s.

Read this article to learn more about Brittany Maynard and Dan Diaz. Brittany was 29 when she was diagnosed with a terminal brain tumor. She had exhausted all of her options for treatment, including an eight8 hour brain surgery. The tumor would not stop growing and she was determined to have six months to live. Brittany and her husband made the choice to move to Oregon where it was legal to experience gentle, medical aid-in-dying. She chose to die on November 1, 2014. Since that day, her husband Dan continues to share his personal story and tirelessly pursues politicians in every state, imploring them to vote in favor of medical aid-in-dying legislation like Death with Dignity. He carries on his late wife’s story so that others may benefit from the same gentle death she experienced.

Dan Diaz makes a point of distinguishing the importance of terminology. This is not “suicide”. Medical aid-in-dying, just as with VSED (Voluntary Stopping and Drinking), is a choice made by those who want to live but instead, after understanding they have no curative options, then choose between two different types of death. Diaz continues his fight to legalize medical aid-in-dying because he wants others to legally have that choice in the face of impossibly difficult decisions.

We’re Bad at Death. Can We Talk?

[pullquote]“Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.”[/pullquote]Dhruv Khullar M.D. writes a moving piece for The New York Times about why it is important to have deep meaningful conversations about end of life before it is too late to do so. It has been increasingly acknowledged that many Americans would rather not go through intensive care and excessive hospitalization at the end of their life. It is not even clear that the aggressive medical care allows people to live any longer than if they choose not to go through it. The two things that have the biggest impact on improving end of life for individuals is “earlier conversations about their goals and greater use of palliative care services”. Unfortunately, people often put off these discussions until it is too late. Khullar explains that “Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.” This is important because according to a 2011 Public Opinion report by the Center to Advance Palliative Care “the vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

It is important for people to understand what palliative care is. An improved definition has been described as “specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”

There seems to be a disconnect with what physicians tend to view palliative care as and what it really is. Many physicians tend to view it as synonymous with end-of-life care. This leads to certain patients not receiving the care they require because the illnesses may not be traditionally thought of as terminal, such as kidney failure (117,000 reported cases in 2013 in U.S., 89,000 die annually), or chronic obstructive pulmonary disease (15.7 million people currently diagnosed in U.S and was the 3rd leading cause of death in 2014 ). “Palliative care, with its focus on symptom control and holistic well-being, should be considered at any stage of a serious illness – not just at the end. Its use should be driven by patient need, not disease prognosis.”

Physicians and the public should understand that palliative care can be combined with treatment of a disease. We should all be more knowledgeable about these choices and understand there are options for people with serious illnesses. According to research done by the American Medical Association when having conversations about terminal illness nearly 70% of physicians] say they haven’t been trained to have this conversation and about half say they often feel unsure of what to say when discussing terminal illness.”

This needs to change. My husband and I came across this issue when he was diagnosed with both Alzheimer’ and laryngeal cancer, only six weeks apart from one another. End of life issues were never brought up. It was as if our doctors thought we had no choice. The neuro-psychologist said he had about three months of mental competency left and that we should get all our affairs in order. The throat surgeon said he had to have three invasive surgeries on his throat or else he would die a painful death within six to twelve months. That was the extent of our conversation with these professionals.

Interviewed on Podcast “Death Hangout”

Recently, I was interviewed by two wonderful men on “The Death Hangout.” This is a very creative podcast that interviews people about issues that surround death and dying. They told me they were reluctant to interview me at first because of the unusual nature of my topic – VSED (Voluntarily Stopping Eating and Drinking).

Take 30 minutes and watch this interview. Because of their honesty and excellent questions, this turned out to be one of the best interviews that I’ve had. Clearly, the two men who interviewed me had a good time too!

I not only talk about the VSED experience with Alan. I talk about conscious dying, how Alan found peace and prepared to die. I talk about my own fear of death and where it came from and how I’ve overcome it. It is a life-giving interview!

This is a podcast that originates in Europe. During the interview, Olivier was in Paris; Keith was in Ireland, and I was in Bellingham, WA.

Enjoy this. Share it with others. Thank you!

Phyllis

We’re Not Too Young

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 

Why Aren’t We Talking About It?

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/

Margot Bentley’s VSED Story

When I presented recently at the first national conference on VSED at Seattle University, Katherine Hammond followed me in the program. She was Margot Bentley’s daughter and Health Agent. She tearfully told a tragic story about how her mother’s Health Directive was not honored in a nursing home. When she could no longer feed herself, she wanted to be able to stop eating and drinking. The nursing home would not allow this to occur. With the Alzheimer’s getting progressively worse, her mother was kept alive for many years until her body turned rigid. There was a police order that prevented her daughter from taking her home where she would be able to not eat and drink and die peacefully. This is what her health directive requested. Sometimes we are grateful for a death. This is one of those times. Margot Bentley finally died at the nursing home in the Vancouver area in Canada. In order to prevent pain from her body becoming rigid, her doctor gave her additional morphine. Then she died.

From Vancouver Sun [PNG Merlin Archive]

http://vancouversun.com/health/seniors/margot-bentley-dies-a-finality-that-couldnt-come-too-soon-for-anguished-family

If you are interested in how the story has progressed here are the first two articles about the Margot Bentley case:

MEDICINE MATTERS: A family's anguish as nursing home continues feeding vegetative patient

MEDICINE MATTERS: CEO apologizes to family for breach of privacy by care aide in Margot Bentley case