Friday, September 1, 2017

Why are African-Americans not completing advance directives?

First a disclaimer. As a Caucasian, I have only personal anecdotal impressions from the African-American patients I have cared for. To me their approaches to end of life decisions were not uniform by any means, but there was clearly often more initial trust in their Pastor than in a white male doctor. Yet, once I gained trust I felt a real bond. I loved the caring and support that their community provided. I've been on a constant learning curve over time and still have much to learn about cross cultural medical care.

In the end-of-life planning sessions I've given over the years, most of the attendees are white with only a few minorities on occasion. The reasons are complex and historical.

African-American professionals are beginning to try to address the under-utilization of Hospice, Palliative Care and the POLST form. It should be no surprise that there is often distrust of the predominantly white medical establishment - the tragedy of the Tuskegee Syphilis experiment and segregated wards are in recent memory.

PBS has a useful video essay below discussing the problems and some attempts to improve trust and communication. We unfortunately still have echoes of racism and discrimination. Trust will only come over time with positive leadership echoing the values of Martin Luther King, Jr.

Monday, July 10, 2017

"Your Life Your Choices"

Here is a video of a program I’ve been involved with for the past 10 years giving presentations in a variety of venues. We all have the rights to make end of life choices and to have them honored. Dr. Robert Penfeld at Kaiser Permanente is carrying out research concerning the choices of people who are becoming cognitively impaired. Kaiser and Virginia Mason both offer classes, “Your Life Your Choices.” Check it out if your advance directives might need updating.

Wednesday, June 21, 2017

Surprising improvements in end-of-life care

Most folks wish to pass from this life in a home-like environment surrounded by loved ones. But in the past, most of us were whisked off to the hospital. Hospice care has had a huge impact by improving end of life care and honoring our wishes. This improvement is now showing up in population studies of terminally ill cancer patients.
In a recent study of end-of-life care around the world, "the U.S. had what would be considered positive rankings in several areas, refuting the widely held perception that end-of-life care in the U.S. is among the worst in the world. Only 22% of U.S. patients died in a hospital as compared to 51% of patients in Belgium and 52% of patients in Canada – ¾ the countries at the other end of the spectrum. Hospital stays for U.S. patients averaged 10 days in the last six months of life, as compared to 28 in Belgium and 25 in Norway – ¾ the countries with the highest average number of hospital days.

Thursday, April 20, 2017

Ralph Waldo Emmerson on aging and the boundary at the end

From the Poetry Foundation: "Ralph Waldo Emerson was a pioneering figure of what is now called “multiculturalism” who expanded the Eastern horizons of generations of American readers and writers, and he persuasively demonstrated how classical Indian, Chinese, and Persian works could be used as a means to bring the inquiring self into a fresh appreciation of its own profound powers."

Initially a Unitarian minister, Emerson eventually resigned saying he no longer believed in the divinity of Jesus. However, he did have a strong sense of a connection between the natural and spiritual world and was representative of the Transcendentalists. In his book, Representative Men, the Christian author Swedenborg was presented as his Mystic.

Emmerson's poem below appears to be his awareness of aging and the boundaries of life. he urges us to "Economize the failing river, Not the less revere the Giver." So I suspect he had a strong sense of a Divinity. He seems not depressed but upbeat by ending the poem with " The port, well worth the cruise, is near, And every wave is charmed.” 

by Ralph Waldo Emerson

It is time to be old, 
To take in sail:— 
The god of bounds, 
Who sets to seas a shore, 
Came to me in his fatal rounds, 
And said: “No more! 
No farther shoot 
Thy broad ambitious branches, and thy root. 
Fancy departs: no more invent; 
Contract thy firmament 
To compass of a tent. 
There’s not enough for this and that, 
Make thy option which of two; 
Economize the failing river, 
Not the less revere the Giver, 
Leave the many and hold the few. 
Timely wise accept the terms, 
Soften the fall with wary foot; 
A little while 
Still plan and smile, 
And,—fault of novel germs,— 
Mature the unfallen fruit. 
Curse, if thou wilt, thy sires, 
Bad husbands of their fires, 
Who, when they gave thee breath, 
Failed to bequeath 
The needful sinew stark as once, 
The Baresark marrow to thy bones, 
But left a legacy of ebbing veins, 
Inconstant heat and nerveless reins,— 
Amid the Muses, left thee deaf and dumb, 
Amid the gladiators, halt and numb.” 

As the bird trims her to the gale, 
I trim myself to the storm of time, 
I man the rudder, reef the sail, 
Obey the voice at eve obeyed at prime: 
“Lowly faithful, banish fear, 
Right onward drive unharmed; 
The port, well worth the cruise, is near, 
And every wave is charmed.” 

Tuesday, April 11, 2017

Wrongful life resulting from unwanted CPR and other heroics

Paula Span in the NYT has an interesting and challenging essay about unwanted CPR. Others have also commented on this issue. There are legal, medical, and moral issues involved. In the CCRC when I live, we are more aware of this issue than in many venues. Storing our advance directives and POLST forms (if completed) in a hanging file under the kitchen sink at least gives a helpful head-start for medical responders. Some residents have acquired DNR bracelets or medallions, a more direct signal to try to prevent bystanders from initiating CPR. Others, of course, would like all measures including CPR to keep them going.
Society's general default is "to do everything to save a life" then clarify and ask questions. But many argue that their right to die peacefully is violated by unwanted CPR heroics. There's even an attempt in Maine to legalize the use of DNR tattoos.  The moral of the story for all of us - think hospice not hospital at the end; have a strong personal advocate; and consider a DNR bracelet or medallion when you have a POLST form.

Monday, March 27, 2017

An Exit Guide on a mission

The other day, I had a conversation with a woman who was about to embark on a visit in rural Washington to be an Exit Guide. This term was unfamiliar to me, even having read Derek Humphrey's book, The Final Exit, a number of years ago. Humphrey was a founder of The Hemlock Society. The Society's name disappeared when it merged and became the more mainstream non-profit, Compassion and Choices.

Apparently some were unhappy with this and decided to continue the efforts of Humphrey. I must admit I felt a bit queasy when reading chapters in The Final Exit which explain how to tie a bag around your neck after ingesting medications, and how "to go together" with your loved one.

The Exit Guide I met is a retired physician though she said this wasn't necessary. She had joined and been trained by the Final Exit Network to be present with the person wishing to end their life. From her, I learned that pure nitrogen (N2) works well and the individual passes out without struggling in about 30 seconds and is soon dead from lack of oxygen. There are head-bag kits and videos on line for instruction and purchase. The individual she was visiting had some degree of dementia and lived in Washington State (where a death with dignity law exists) and this individual apparently did not qualify for physician assisted death.

I have so many questions. How much "assistance/instruction" can the Exit Guide give without being held legally liable? Do they remove the plastic bag and equipment before reporting the death, thus making it very hard to determine it was a suicide? How careful is the vetting? What degree of dementia is acceptable with their criteria? Washington State law says you have to be considered terminal within 6 months. What guidelines do the Exit Guides follow?

In addition to individual cases, some states are now looking to use nitrogen as the favored means for executions. There is a great deal of discussion about what's going on in Oklahoma.

For myself, I don't think I could become an Exit Guide. Could you? It's a question of a bright line between supporting an individual's autonomy and protecting their rights when mentally incompetent or not terminal. Making "how to" kits for head-bags and nitrogen, still makes me queasy.

Sunday, March 26, 2017

Please forgive me. I forgive you. Thank you. I love you.

Dr. Ira Byock recommends the use of these short sentences when stymied on how to talk to the dying. His wise comments come from his many years in Hospice and palliative care. You can listen to his comments here.

Friday, March 17, 2017

"Is Death in Trouble" - from the Hastings Center

Daniel Callahan wonders if death is in trouble. Have we pushed death back so far with the advances in medicine that we no longer die of old age? It's an interesting thought. Death may be intellectually inevitable but it's always touted as a "battle" and a "defeat." We expend billions looking to "wipe out" a condition only to have another take its place. I suppose what we're trying to do is flatten the aging curve so that there's an unexpected precipitous drop at the end rather than the dwindles. Heart attacks used to take us quickly, but now sudden death from a heart attack is in dramatic decline with cholesterol and blood pressure control. The unfortunate pervasive drug ads make us think that, yes, science will continue to solve that next problem for us, then the next. Really?

I wander into old age with a sense of unease. What's waiting for me? A fall with a broken hip? A lurking pancreatic cancer? A stroke? Or, God forbid, Alzheimer's. This is where a type of beneficent denial can help. Know the inevitable but get on with fun living - yes, a day at a time. Compartmentalize death. Expect loss, but move on. All easy to say, yet I'll keep trying as I close in to that point where the actuaries say I'm over the top. And I need to admit, it's not in my control.

Monday, January 16, 2017

Saturday, January 7, 2017

RIP Huston Smith, The Man Of Religions

The recent passing of a "religious rock star" leaves us still searching for what comes next. In this delightful video below learn what Huston Smith has to say about aging and the afterlife, or as he says "when my body drops." In the interview he sings his favorite hymn! If you want to learn more of his musings about the afterlife, read his Harvard Divinity School's Ingersoll lecture called Intimations of Immortality. In addition to read his obituary in the New York times click here.

 From the Huffington Post: A year that brought the passing of too many important public figures capped it off with the death of the past century’s leading explainer of religion and the roles it plays in people’s lives. Huston Smith died peacefully in his Berkeley California home, at age 97, on December 30th, after a long, steady weakening that had those who knew him scratching their heads about how he lingered so long and remained so lucid. He was beloved for his wit, his decency and the joy he derived from good company and stimulating conversation, and he was revered for his unparalleled contributions to the study of the world’s religions.

Born in 1919 in China and raised there by missionary parents, Smith came home to America at 17 and pursued his studies in religion and philosophy. Always a self-identified Methodist, he was an indomitable explorer long before spiritual eclecticism became fashionable, and his investigation was never the kind of shallow pursuit he advised against, comparing religious dilettantes to people at a buffet who get too much of what they want and not enough of what they need. He plunged deeply into traditions other than his own, not just as a scholar but as a seeker of spiritual illumination. He practiced Zen meditation; he practiced disciplines from the Sufi branch of Islam; he practiced yoga, famously bending and stretching his tall, lean body to demonstrate asanas (postures) in a 1950s film that launched his public career and again, in 1996, on Bill Moyers’ five-part PBS series, “The Wisdom of Faith with Huston Smith.” By then, he was, as the Christian Science Monitor put it, “Religion’s Rock Star.”

Saturday, December 24, 2016

Dawn Walk

At times it's comforting to realize that, yes, we are still here. Death may loom but we can take moments to remember, to be in the present, and to enjoy the reality knowing loved ones are nearby. Dawn Walk creates that state in our souls as we crunch through the snow at first light.

by Edward Hirsch
Some nights when you’re asleep
Deep under the covers, far away,
Slowly curling yourself back
Into a childhood no one
Living will ever remember
Now that your parents touch hands
Under the ground
As they always did upstairs
In the master bedroom, only more
Distant now, deaf to the nightmares,
The small cries that no longer
Startle you awake but still
Terrify me so that
I do get up, some nights, restless
And anxious to walk through
The first trembling blue light
Of dawn in a calm snowfall.
It’s soothing to see the houses
Asleep in their own large bodies,
The dreamless fences, the courtyards
Unscarred by human footprints,
The huge clock folding its hands
In the forehead of the skyscraper
Looming downtown. In the park
The benches are layered in
White, the statue out of history
Is an outline of blue snow. Cars,
Too, are rimmed and motionless
Under a thin blanket smoothed down
By the smooth maternal palm
Of the wind. So thanks to the
Blue morning, to the blue spirit
Of winter, to the soothing blue gift
Of powdered snow! And soon
A few scattered lights come on
In the houses, a motor coughs
And starts up in the distance, smoke
Raises its arms over the chimneys.
Soon the trees suck in the darkness
And breathe out the light
While black drapes open in silence.
And as I turn home where
I know you are already awake,
Wandering slowly through the house
Searching for me, I can suddenly
Hear my own footsteps crunching
the simple astonishing news
That we are here,
Yes, we are still here.

Sunday, November 6, 2016

A Neurosurgeon’s Crisis

What would you do if you were a 36 year old Neurosurgeon finishing a grueling 6 year training program at Stanford, a rising superstar, married, but just diagnosed with a rare form of lung cancer? The cancer is treatable but not curable. The future is unknown.
Would you complete your training despite the pain and treatment side effects? Would you go into counselling with your wife? Would you write a best seller memoir? Would you father your first child? Would you talk about life, death, and God in your beautiful seemingly effortless prose honed by your Master of Arts in English Literature?
Well Dr. Paul Kananithi did it all in his beautiful book, “When Breath Becomes Air.” Be prepared to shed some tears as you are given remarkable insight into this young couple's journey as they face the inevitable. In short, this book becomes a reaffirmation of life as it faces death.

Wednesday, November 2, 2016

Mentally ill - a death with dignity in Holland

From Aeon: "Doctor-assisted suicide for the chronically mentally ill is currently legal in the Netherlands, Belgium and Switzerland, despite being one of the most contentious points in the ongoing right-to-die debate. Letting You Go follows one such Dutch patient, 27-year-old Sanne, who, after nearly a decade of pursuing treatments for her chronic depression, insomnia and borderline personality disorder, has chosen to end her suffering and pursue a planned death. While clearly shaken, Sanne’s father has made the difficult decision to stand by his daughter’s choice, reasoning ‘she couldn’t, and shouldn’t, do this alone’. Unflinching, honest and humane, the Dutch director Kim Faber’s film is both a moving portrait of father and daughter, and an intimate look at one of the most controversial medical ethics issues of our times. The film played at the International Documentary Film Festival Amsterdam (IDFA) in 2014 and AFI DOCS film festival in 2015."
This is the scenario I'm concerned about. Should we simply support the wishes of anyone who wants to die? Is this the "slippery slope" that critics of physician assisted death have noted? Do you have comments after watching this hard to watch video?