Sunday, October 23, 2016

Spirituality at the end of life

"Two of the great 20th-century theorists of care for the dying urged people to be on the lookout for such moments. The psychiatrist Elisabeth Kübler-Ross, author of On Death and Dying (1969), encouraged family and medical staff to listen for the ‘implicit communications of dying patients’. The hospice care pioneer Cicely Saunders spoke about the need to attend to a person’s ‘total pain’: not just physical, but social, emotional and, yes, spiritual pain, too.
"Such broad, nuanced forms of care as these are anticipated in the Scottish government’s report ‘Strategic Framework for Action on Palliative and End-of-Life Care’ (2015). The Framework aims to create a ‘culture of openness about death, dying and bereavement’, and to find ways of incorporating people’s spiritual and psychological needs into end-of-life care. But it also prompts the question: why, a generation after Kübler-Ross and Saunders, are such things being ‘called for’ as though they were new, unusual and brave? Why is spirituality not already a routine part of end-of-life care?"
I was able to spend four nights on a cot in my father's room as he lay dying in a coma at age 94. Waking at night listening to his deep Kussmaul breathing, I stood and prayed at his bedside. I've heard that prayer is simply talking to God. I did feel a presence in the room as my father's soul began to separate from the worn out earthly body. It was so quiet and peaceful after his last breath. Was this "presence" wishful thinking? Perhaps, but just "being and not doing" helped me in the moment. Or was it the "mysterious mutuality of being and doing?"

Friday, October 21, 2016

Thoughts and Experiences with VSED (Voluntary Stopping Eating and Drinking)

There is increasing public discourse and debate about the ethics of ending one's life "in a dignified manner" when entering its terminal phase. But what if one is not terminal, yet finds themselves in an intolerable condition and wants to die?

Recently at the Seattle University Law School a remarkable two day symposium was held bringing together the leading national thinkers in this area - along with personal stories from real time experiences. These have be summarized in the "Narrative Inquiry in Bioethics" - the summer 2016 issue.

Paula Span from the NYT was a speaker and reports her take on the conference. "In end-of-life circles, this option is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy.

"Unlike aid with dying, now legal in five states, it doesn’t require governmental action or physicians’ authorization. Patients don’t need a terminal diagnosis, and they don’t have to prove mental capacity. They do need resolve. “It’s for strong-willed, independent people with very supportive families,” said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center."

My view: VSED, no doubt, has been with us since the beginning of time and may be much more common than we realize. A particular problem is dementia. With the aging population dementia is a distinct feared reality which will affect 30% of us above age 90. VSED appears to be a viable moral option for some people but, that said, there is a need more study and research. An additional problem is the length of time VSED takes and the varying control of suffering.

Systems will need to develop for education and support. Hospice and Palliative Care will need to have their positions enhanced to include VSED. Medical and nursing groups will need to develop a caring stance. So there's lots to be done. The conference at Seattle University Law School provides a landmark introduction to help us begin to understand the future of VSED.

Saturday, October 1, 2016

The Art of Condolence

"Offering a written expression of condolence (from the Latin word condolere, to grieve or to suffer with someone) used to be a staple of polite society. 'A letter of condolence may be abrupt, badly constructed, ungrammatical — never mind,' advised the 1960 edition of Emily Post. 'Grace of expression counts for nothing; sincerity alone is of value.'
"But these days, as Facebooking, Snapchatting or simply ignoring friends has become fashionable, the rules of expressing sympathy have become muddied at best, and concealed in an onslaught of emoji at worst. 'Sorry about Mom. Sad face, sad face, crying face, heart, heart, unicorn.'"
This touching article in the NYT reminds me how difficult it is to express heartfelt words to the grieving. I just lost a wonderful UW Critical Care MD friend who taught and cared for patients in the ICU at Harborview. Brain cancer, surgery, radiation, chemo - then a few great years. But now he's gone leaving wife, children and other loved ones behind. What can we say?
I used to call families about a month after a death of their loved one in the ICU. Things had become quiet for them and the loneliness had begun to set in. They seemed so happy to talk and often had lingering questions about the care. The human connection in the main thing we need. Words help but don't suffice. The hand squeeze, the look, the note - it's all about caring. Click here to read The Art of Condolence.

The funeral as we know it is becoming a relic — just in time for a death boom

By   Karen Heller April 15 Ed note: Funerals are changing in ways that will bring culture shock and a shake of the head of s...