Another Interview Coming Soon With John Wadsworth

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?

“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”

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

A Better Way To Care For The Dying

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

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?