Author: Phyllis Shacter

Death and dying continues to be seen as a big taboo

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Acute care remains outrageously and disproportionately the receiver of funding and attention.

Mary O’Hara writes about palliative care specialist BJ Miller and his efforts to promote palliative care in America and Britain.

Miller wants to shift the focus in medicine from strictly managing pain but to also improving quality of life for the patients struggling with an illness, disease or disability. He argues that as humans are living longer with chronic or degenerative diseases “people at the end of their lives often do not have access to the services they need, and with an aging population demand continues to grow.”

Hospitals have been places to keep older or dying individuals and that is simply wrong. “…acute care remains outrageously and disproportionately the receiver of funding and attention.” Our healthcare system is not designed for palliative care. Miller argues that we should “concentrate spending on residential hospices, more home care services, video conferences and teleconferencing to reach people in rural areas. These things exist. They just need to be developed and amplified.” Miller further argues that palliative care can actually be cost-effective. While the article does not site the studies used to determine that statement I have linked several studies that have looked into that question.

To make impactful change more people need to know what palliative care is. People need to understand all the benefits and support that come with it.

Support cost effectiveness of palliative care

Evidence on the cost and cost-effectiveness of palliative care: A literature review

Cost Effectiveness of a Palliative Care Program in a Rural Community Hospital

Cost-Effectiveness of Palliative Care: A Review of the Literature

Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries

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.

 

 

Death and dying continues to be seen as a big taboo

Posted on

“…acute care remains outrageously and disproportionately the receiver of funding and attention.”

Mary O’Hara writes about palliative care specialist BJ Miller and his efforts to promote palliative care in America and Britain.

Miller wants to shift the focus in medicine from strictly managing pain but to also improving quality of life for the patients struggling with an illness, disease or disability. He argues that as humans are living longer with chronic or degenerative diseases “people at the end of their lives often do not have access to the services they need, and with an aging population demand continues to grow.”

Hospitals have been places to keep older or dying individuals and that is simply wrong. “…acute care remains outrageously and disproportionately the receiver of funding and attention.” Our healthcare system is not designed for palliative care. Miller argues that we should “concentrate spending on residential hospices, more home care services, video conferences and teleconferencing to reach people in rural areas. These things exist. They just need to be developed and amplified.” Miller further argues that palliative care can actually be cost-effective. While the article does not site the studies used to determine that statement I have linked several studies that have looked into that question.

To make impactful change more people need to know what palliative care is. People need to understand all the benefits and support that come with it.

Support cost effectiveness of palliative care

Evidence on the cost and cost-effectiveness of palliative care: A literature review

Cost Effectiveness of a Palliative Care Program in a Rural Community Hospital

Cost-Effectiveness of Palliative Care: A Review of the Literature

Palliative Care Consultation Teams Cut Hospital Costs For Medicaid Beneficiaries

Another Interview Coming Soon With John Wadsworth

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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 

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As a reminder I’ll be interviewed tomorrow at 2:00 P.M. PST (5:00 P.M. EST) by Cheryl Jones on “Good Grief”. Here is a description of the episode. A link you can use tomorrow is below. I hope everyone is able to listen to it live. Thank you!

https://www.voiceamerica.com/show/2264

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. He planned and participated in his own funeral and followed what he believed was best for him, choosing to stop eating and drinking before he was unable to consciously decide how his life would end. Throughout all of these experiences and decisions, he had a supporter and advocate in his wife Phyllis. Understanding the choices he was making, she stood as a pillar to his right to end life in the way that was right for him. He left her with a mission; by sharing his story, she would contribute to the conversation on end of life options. Powered by her love of him and the peace and beauty he felt at the end of his life, she speaks powerfully for taking our lives in our own hands and fully exploring what is best for each of us.

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

When I Die, Recompose Me

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“The death care revolution has begun. It’s an exciting time to be alive.”

Katrina Spade grew up in a medical family. Her family did not shy away from conversations about death. While she ended up going into architecture, she did not stop having those important conversations. While in architecture school she became curious about what would happen to her body when she died.

In Katrina Spades Tedx talk in OrcasIsland she discusses the process of “recomposition” and her project that is centered around expanding a system where the deceased can be peacefully turned into rich soil that can be used to create new life.

The video of her talk can be found here. She begins by explaining that about 50% of American chose to be buried. This requires an immense amount of resources. Furthermore, in some areas cemeteries are running out of space. “It turns out it’s doesn’t really make good business sense to sell someone a piece of land for eternity.”

This has led to a sharp increase in the number of people choosing to be cremated. Today about 50% of Americans choose this option. People tend to think of cremation as a sustainable form of disposition. However, cremation burns away all the potential that a body can have in giving back to the world. “600,000,000 pounds of carbon dioxide go into the atmosphere every year from cremation.”

So, what are other options?

“In nature, death creates life”, says Spade. She wants to redesign death care. Based on a practice called “livestock mortality composting” that has been done in the farm industry for decades, she has helped create a system that replicates that process for humans.

“All we need to do is create the right environment for nature to do its job.”

Her goal is to create a facility that is “part public park, part funeral home, and part memorial for the people we love”.

In the human composting facility, there will be a tall vertical core. At the top of the core, friends and family of the deceased will lay down the body in a laying-in ceremony. They will cover the body in woodchips to create a carbon rich area around the deceased. This helps facilitate the natural breaking down of the body that will occur over the next few weeks. Microbes break down carbons and proteins and turns the body into rich earthy soil. “Eventually you could become a lemon tree”.

The facility will also provide space to support the grieving process, provide space for memorial services, and for end of life planning. Spade says she wants to create a space “where we create soil and honor life…we believe access to ecological death care is a human right.”

“The death care revolution has begun. It’s an exciting time to be alive.”

An Introduction Video To This Website

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This website was produced in 2015 as a way to educate others about expanding end of life choices, including VSED (Voluntarily Stopping Eating and Drinking). Please watch this two minute introductory video. Then begin to look at the website and find out what interests you the most. You will learn more about my book, Choosing to Die, including a review in the Harvard Law Blog. You’ll view and hear podcasts and interviews, and more. Contact me via the website if you have questions.

We’re Bad at Death. Can We Talk?

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“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 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”

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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