Phyllis Shacter and End of Life Issues

Kathryn Fentress and her husband moved to Bellingham 20 years ago for the water, trees, fresh air and mountains. She is a psychologist in private practice and believes that spirit is everything. Living in harmony with nature reflects a reverence for life. She delights in finding and meeting those people whose stories so inspire all of us.

Phyllis Shacter and her husband , Alan, moved to Whatcom County from California ten and a half years ago. She is 68 years old and has worked as a teacher, business consultant, life coach and public speaker. She still does public speaking and life coaching. She has a TEDx Talk, “Not Here by Choice,” that addresses the topic of this interview. Her mission is to raise awareness and broaden the perspective of the choices people have leading up to and through the dying process. We are all going to die, and she believes that how we die is important. There can be a peace and grace and love around us if we do some planning in conjunction with medical people we trust.

Kathryn Fentress: How do you see this as an environmental issue?

Phyllis Shacter: A human being is a living, sustainable system and part of a larger system. The people you are interviewing for the Whatcom Watch are people who are heroes in how they are able to give life to and sustain the larger whole. How we take care of ourselves through life and through death ripples out and affects the larger world we all inhabit.

I understand your husband Alan had an unusual death following some serious health issues. What happened?

In 2007 we noticed changes in Alan, but the Alzheimer’s wasn’t diagnosed until 2011. Close to the same time, he was also diagnosed with laryngeal cancer. His throat surgeon said he would likely die a painful death within six to twelve months unless he had three invasive throat surgeries.

What did you and Alan decide to do?

We went into Alzheimer’s denial and dealt with the cancer. After a lot of discussion, Alan said “no” to surgery. As his medical advocate, I helped him navigate three alternative approaches:

1. To see an excellent naturopathic doctor who treats the underlying causes of disease;

2. Alan wrote a beautiful prayer, and I asked 50-75 people to say it every night at 7:30 p.m. for four months; and

3. Alan used neuro-linguistic programming to visualize his own healing. I also contacted Compassion and Choices of Washington and learned that Alan qualified for the Death With Dignity prescription in case these modalities did not work. He received the prescription, but we never had it filled.

Why did you take an alternative route and what was the outcome?

We knew he could suffer greatly from the recommended surgeries. We were also concerned that the anesthesia would make the Alzheimer’s progress faster. Doctors and patients need to have more forthright and realistic discussions to weigh the quality of the last years. The popular book “Being Mortal,” by Dr. Atul Gawande, addresses all this is an excellent manner. After four months, we returned to the throat surgeon. He said the exact words that Alan had visualized, “I can see no cancer.”

Did you use the healing modalities for the Alzheimer’s?

Not really. In November 2011, the neuropsychologist told us he would have only three months before a great decline in cognitive function. He actually ended up having about eight more months. Perhaps the naturopathic modality used for the cancer contributed to a longer grace period. Our joy in the cancer healing did not last — the Alzheimer’s became more apparent. We knew what lay ahead because both Alan’s mother and my father died of Alzheimer’s. According to the Alzheimer’s Association, the number of people with Alzheimer’s will triple by 2050. It is the most feared disease of our times.

Alan decided to voluntarily stop eating and drinking (VSED) so he did not have to live into the late stages of Alzheimer’s. The Death With Dignity prescription does not apply to Alzheimer’s and most other neurological diseases.

How did you even think of VSED?

One of the volunteer chaplains at Compassion and Choices told me about it. My research indicated it was legal and it can be done without suffering. The U.S. Supreme Court has asserted that anyone has the legal right to refuse hydration and nutrition.

How much longer did Alan live after he decided to use VSED?

That was tricky. He wanted to live as long as he could, and yet he knew he would have to use VSED while he was still mentally competent. Once he lost his mental competency, he would no longer have the capacity to remember why he wasn’t eating or drinking. I felt very anxious during this period and received much needed support from friends and professionals.

Alan also made two other choices. He wanted to visit a good dementia facility to see how he might feel about living there. The option is very expensive and we had good long term care coverage. The people who lived at the facility were lifeless; they had frozen faces and were heavily medicated. Upon leaving the facility, Alan said, “I will never live there.” He also decided that he wanted to be at his own funeral so he could be present for all the love and attention, and he held a beautiful Celebration of Life.

Is VSED the same as suicide?

No. Suicide is about saying “No” to life. Alan was saying “Yes” to life up until his last breath. Suicide is violent and often the result of depression. It hurts one’s self and others and has to be done secretively. For Alan, his choice was about self-love, peace and compassion. He was grateful for the good life he had and for having the choice to VSED. Conscious dying, which is the way Alan died, is about honoring life up until the last breath.

What was his death like?

Alan took nine and a half days to die on his terms. He basically just went to bed and stopped eating and drinking. He had cut his calories the week before to make it easier. And he had great comfort care. We sprayed mists of water in his mouth, kept the room hydrated with a humidifier, kept his lips, eyes, and skin hydrated with drops and lotion. I spent a lot of time with Alan in his bed. He went into a coma for the last day and half of his life. I was at his bedside, still communicating with him, when he took his last breath. He was at peace.

Many people hold the idea that dying from dehydration is very painful. Can you comment on this, please?

Dehydration can be difficult. At the beginning of the process, Alan stated he wanted to be as conscious as possible. As his body began to break down, his doctor prescribed medication to keep him comfortable.

What is your TEDx talk about and why did you do it?

My talk describes the choices my husband made in the last 18 months of his life. I tell the story to help open the understanding that we have a right, and a duty, to ask questions about our death and dying. I also share this because my husband asked me to. Once he made his decision, he entered a period of profound peace and wished everyone could know this is possible. Many articles are being written today about end-of-life issues, but I am not seeing information about the alternatives for people who have early- to mid-stage Alzheimer’s or other neurological diseases. You can google ‘Phyllis Shacter Not Here by Choice’ to view my Tedx talk.

Thank you to Phyllis and Alan for blazing a trail for the rest of us and sharing such a personal story.