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

Posted onOctober 6, 2017

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!

When New Cancer Treatments Do More Harm Than Good

Posted onSeptember 22, 2017September 22, 2017

Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.

Cary Gross, professor and cancer researcher at Yale University School of Medicine, writes a personal opinion piece for the Washington Post. Gross’ life work is to study whether new cancer treatments that are successful in small trials will be therapeutic in routine clinical practice. His 80-year-old father, diagnosed with Hodgkin’s Disease, was offered and took the opportunity to try a new cancer treatment drug, despite the limited research data available and the high cost.

“Like many people in his shoes, my father opted to try the new drug because he thought it might help. It was expensive, but his insurance would cover it, and the high price seemed to suggest it was special. It was also better than doing nothing.”

Gross’ continues to explain the nuances of cancer treatment drug trials. The Food and Drug Administration approved of this specific treatment with only 100 patients studied. More often than not, these drug trials are also performed on younger, healthier adults whose bodies simply respond differently than one of an 80-year-old. In fact, his father experience further debilitation as a result of the side effects of the new cancer treatment. Unable to walk and bedbound, he was in a rougher shape than when he has started.

Cary Gross explains that the government regulations are about to be loosened by President Trump in order to support pharmaceutical companies.

“The 21st Century Cures Act has already created a pathway for companies to obtain FDA approvals with less rigorous evidence. At the same time, large funders of research that study the safety and effectiveness of drugs, such as the Agency for Healthcare Research and Quality and the Patient-Centered Outcomes Research Institute, face uncertain futures in the current Congress.”

Cary Gross ends by strongly stating that people deserve more treatment options and focus should be placed on creating more possible, available cure for diseases. However, prioritizing research and the effectiveness of such drugs is necessary. Evidence-based treatments must become available so that they no longer do more harm than good.

New Feature in “Art of Dying” Magazine

Posted onSeptember 15, 2017September 15, 2017

I’m an advocate
for living into our dying, being aware of what is happening to us when it’s happening and not
denying it.

I hope you takes some relaxed time and view the “Art of Dying” Magazine, Volume 1 and
Volume II. Although the first volume was released at the end of 2016, it is timeless. The second
was released in September 2017.

This profound and beautiful online magazine, “Art of Dying,” Volume II, can be found
at www.artofdying.net. Use the right arrow to turn the pages. Enlarge the page so you can read it
easily. If you want to see Volume I, look at the left margin, and click on the image that looks like
a book cover.

In this exquisite magazine, the first of its kind, John Wadsworth, founding editor and creative
director, has designed and published stories and ideas about death and dying. John says, “Art of
Dying unconditionally respects the numberless ways through which we cooperate with death’s
mystery. All perspectives are welcome, and no insistence that pain and sorrow be negated, nor
that the Unknown be known. Death transcends the humancentric worldview. We, the living and
the dying, unite in death’s transcendence.

Since my TEDx talk, “Not Here By Choice,” given only seven months after my husband died, I
have been interviewed numerous times. I offer information generously as a way to help others
expand their own end of life choices.

In Volume I, the article about Alan and me is the last article in the magazine. It is one of the
most beautiful and poignant articles yet written about Alan’s choice and passage to VSED
(Voluntarily Stopping Eating and Drinking).

The article begins: “Alan Alberts is a harbinger of our culture’s changing relationship with death
and dying. He chose elective death through Voluntarily Stopping Eating and Drinking (VSED)
rather than suffering the disassociated life of Alzheimer’s. His wife, Phyllis Shacter intimately
participated in Alan’s death. Together, they embody the emerging paradigm of couples, families
and friends embracing individual death as a shared experience through which all, the living and
the dead, are united in a heightened awareness of life, love and one another. ”

In this first Volume I, Phyllis tells Alan’s story through conversations they held until
Alzheimer’s silenced his voice.

In Volume II (toward the end of the magazine), released in September 2017, Phyllis shares her journey about her grieving processafter her husband died, and how that led her to the work she continues to do today, advocatingand educating others about elective death and expanding end of life choices. “I’m an advocate
for living into our dying, being aware of what is happening to us when it’s happening and not
denying it.”

If you would like to purchase a hard copy of the magazine, go to www.artofdying.net. On the left side, click on “Order Print.”

Each Volume is a beautiful and heartfelt piece of art to enjoy and share with others.

Considering Your Options When Lethal Injection Is Not Available

Posted onSeptember 9, 2017

I do encourage everyone to develop a vision of their death, knowledge of their illnesses, acceptance of the inevitable, an appreciation for palliative care, and an understanding of the end-of-life options available in their jurisdiction.

Physician Sam Harrington offers his own ranking of end-of-life options that hasten death in order to reduce suffering from easiest to most difficult. Harrington lends a critical eye to physician-assisted suicide that is legal in Canada and extends opinionated consideration of the choices American citizens have at the end of their lives. Referring to the highly publicized story of John Shields, a terminally ill Canadian man who recently chose to die through means of lethal injection, Harrington addresses the reality that the majority of Americans do not have such an option. But, Harrington explains that not having this option may not be such a bad thing.

The medical aid in dying law, often referred to as Death with Dignity, is legal in 6 states: California, Montana, Washington, Oregon, Colorado, Vermont and in the District of Columbia. Medical aid in dying is the prescription by a physician for a lethal dose of medication that absolutely must be self-administered. Harrington explains that these lethal doses of medication prescribed through the medical aid in dying law (which only applies to people deemed to be in their last 6 months of life) are not risk-proof themselves. Vomiting, difficulty swallowing, and paradoxical reactions are all in the realm of possibility. Medical aid in dying may not always be as clean and simple so it is important for advocates and those considering their options to remember other methods available to reduce suffering and hasten death at the end of life.

Harrington goes into some detail regarding withholding care; such as manual feedings, antibiotics administration, and ventilation. These must all be considered when creating an advanced directive because often those decisions otherwise fall on the shoulders of loved ones. However, VSED (Voluntarily Stopping Eating & Drinking) is one way of withholding care made as an alert, competent person. It is the choice to stop eating and drinking in order for the body to naturally, organically die. Harrington points out that VSED is an “actively passive step to hasten death that everyone should be aware of”. In contrast to medical aid in dying, Harrington says VSED “is effective, fast enough to be tolerable, and slow enough to vanquish any familial concerns about an irretrievably impulsive decision sometimes associated with physician-assisted suicide.”

Harrington explores the nuances of the subject but ends by emphasizing what is most important: choice.

“I do not presume to tell you how each individual patient should parse his or her own decision. I do encourage everyone to develop a vision of their death, knowledge of their illnesses, acceptance of the inevitable, an appreciation for palliative care, and an understanding of the end-of-life options available in their jurisdiction. Then they can maximize control of their death.”

Another Interview Coming Soon With John Wadsworth

Posted onJuly 28, 2017

The soul doesn’t go anywhere;
it’s the body that dissolves and returns to the earth.

My friend and colleague, John Wadsworth, is a gifted photographer and videographer. He is the Founding Editor and Creative Director of the beautiful “Art of Dying” magazine. In the opening “Editor’s Note,” John says: “Death is approaching everyone. One moment we will no longer be who we have believed ourselves to be. Our bodies will be lifeless. And all that we have experienced, our loss, our hates, our successes and our failures, will dissipate as dreams. How we die is important.”

John interviewed me last year, and I shared intimate information about my husband’s death when he decided to VSED rather than live into the late stages of Alzheimer’s. Soon John will interview me again about my personal story and how I navigated that journey with Alan.

John has collected the largest volume of quotes about death and dying. For some years now, he has put a daily quote on the internet about death and dying. You can find it at www.DeathKnells.com. These are quotes by philosophers, teachers, and sages of all persuasions.

One of the ways I start my day is by reading the daily quote on DeathKnells.com. I hope you’ll do the same. After you do this for a while, you’ll see that your perspective about death and dying may begin to change. Below is a recent quote.

Pure consciousness cannot be destroyed;
it can only be expressed.
Knowing this frees us from the fear of death
because nothing in the universe is ever lost;
it is only transformed.
If you and I are speaking on the phone,
and somebody cuts off the phone lines,
what happens to us?
Where do we go?
Nothing happens to us, and we don’t go anywhere.
So, too, when physical death occurs,
nothing happens to us.
Certain lines of communication
that use a certain nervous system
have temporarily been disrupted.
But we are still here.
The soul doesn’t go anywhere;
it’s the body that dissolves and returns to the earth.

Deepak Chopra: Power, Freedom, and Grace:
Living from the Source of Lasting Happiness

We’re Bad at Death. Can We Talk?

Posted onJuly 11, 2017July 11, 2017

“Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.”

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 3^rd 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.

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

We’re Not Too Young

Posted onJanuary 14, 2017January 14, 2017

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

End of Life Choices Conversation Starter

Posted onDecember 29, 2016December 15, 2016

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