Monday, January 16, 2017

Last Words - should we wait?


What will your "last words" be. Should we wait or act now? Here's sage advice from a hospice chaplain.

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? 

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.

Tuesday, August 2, 2016

Fear and Politics - a toxic mix

 

Famous "Daisy" Attack Ad from 1964 Presidential Election,

Lyndon Johnson vs. Barry Goldwater

Is exploiting the fear of dying acceptable rhetoric in political campaigns? 

The world premiere of "Daisy" now playing in Seattle exposes 

the complicated ethics of advertising and politics. 

Wednesday, July 6, 2016

KEXP radio interview on end of life decisions




Here's a half hour radio interview at KEXP FM 90.3 which is affiliated with the University of Washington. Mike McCormick interviews me about end of life decision making. You might prefer this to the longer talk below.


Wednesday, June 15, 2016

Town Hall talk - stories from the ICU and beyond to help us plan for the end of our lives


Talk at Seattle's Town Hall about planning for the end of our lives. How do we have the conversations; talk to our loved ones and medical providers: understand our choices; make our wishes known; and understand all the options?

Click here for the handout which references web sites, books, etc.

Wednesday, June 8, 2016

Why Zeke is wrong about aging


The Atlantic is wrong about aging: Why our anti-elderly bias needs to change

“Seventy-five. That’s how long I want to live: 75 years.”
– Dr. Ezekiel Emanuel
At Town Hall a few weeks ago, I was able to ask Michael Kinsley what he thought of Ezekiel Emanuel’s article in The Atlantic. He wryly replied, “Well, I’d like to see Zeke’s response when he’s 74.” Indeed, 
According to Holland and Greenstein, “Self-reported well-being starts relatively high for people in their early twenties, after which time it starts to steadily decrease, particularly for the “sandwich generation.” Well-being plummets to its lowest level for people in their early fifties. After this trough, well-being starts to increase again, and keeps increasing over the years, until, by age 85, it’s even higher than it is for those in their twenties.
“If Dr. Emanuel looked more closely at older age, instead of fearing it, he might find that along with the negatives are many positives. The functional limitations he cites — decreased ability to walk a quarter of a mile, or climb 10 stairs, or stand without special equipment — are only part of the picture. It can be hard for overachievers to see these positives, especially if they confuse professional esteem with quality of life. And so, he is proud of a father who is ‘the prototype of a hyperactive Emanuel,’ but also weary when his father slows down in his 80s, even if he says he’s happy. While Emanuel seems to acknowledge the huge importance of mentorship, a role that the elderly can and do play, he devalues it nonetheless as a ‘constriction of our ambitions and expectations.’”

Tuesday, April 5, 2016

Where's the DNR?

At a duplicate bridge game today, a delightful 91 year old lady I'll call Joan slumped over. A retired Cardiologist at the table, checked her pulse and said she had died. He left to break the news to her husband who lived about 4 miles away. No CPR was initiated because her friends said that she wouldn't want resuscitation and had completed her POLST form (which was in her home).

911 was called and arrived about 10 minutes into the event. I mentioned to them that I didn't believe that Joan wanted CPR. I was told, "Sorry sir, we have to do our job unless we have a spouse or document telling us to hold off."

Joan's friends unfortunately witnessed the technological imperative that 911 calls mandate. Her blouse was stripped back and chest bared, leads applied, an IV started, along with CPR and a few defibrillation shock attempts. Her body was then transported to the hospital where the ER doctor could pronounce that she indeed had died.

The 911 Medics were only doing their job. Joan had done her best by having had the discussions with her providers and her husband. She clearly didn't want resuscitation and had completed her documents, but she happened to be in a place where that wasn't clear. So in a real-time situation like this in a public place where a witnessed cardiac arrest occurs, what could prevent someone like Joan from basically having a medical procedure (CPR) without consent?

Some states have laws that address the issue by promoting the use of DNR Bracelets.  Amazon.com has a number of these listed. So if you are one of the "frail elderly" still active away from your home where your POLST/DNR instructions are kept, please consider wearing such a bracelet. It may not always be honored, but it greatly improves your chances that your wishes will be respected. In the future perhaps we will have a registry, smart card, or other means to immediately find medical information.

Also, please check out smart911.com to see if it's available in your zip code. You can verify your phones and input whatever health information you wish. That way, when 911 is called from your phone, the dispatcher will have your basic information on the initial screen. It's one more important safeguard to coordinate our care.

Update: I found paramedics got Joan's heart restarted so she was placed in ICU attached to multiple tubes and a ventilator and, as would be expected. She is completely unresponsive. I also found out that she's 95, not 91.  The course over the next days included the following: brain scans, neurology consultations, second opinions, testing of brain stem function to determine brain death. But the real need was for the ICU team to bring the family together in a caring way and use family conferencing to attempt to reach agreement to allow her to die. Shared decision making requires experience and training. About 70% of deaths in the ICU are from withdrawal of life support. Joan will likely follow that path. So sad, it's hard to die anymore. It took her 4 more days to die in the hospital.

One bridge player after this event sent a copy of her POLST to the California approved vendor in order to receive this medallion which can be worn as a necklace. 911 responders are trained to treat this as a valid DNR order in California. Other states such as Wisconsin have similar laws supporting the use of certified bracelets or medallions.

Wednesday, February 24, 2016

Diane Rehm - an advocate for us all

Diane Rehm
I was fortunate to hear Diane Rehm speak at Seattle's Town Hall last evening.  She had credibility with this packed audience, many who had followed her during her 37 years on NPR’s The Diane Rehm Show. As a 79 year old woman she spoke of the death of her beloved husband. In assisted care with advanced Parkinson’s Disease, he ended his life by voluntarily stopping eating and drinking (VSED). Her book, My Own Way, reveals the difficult path of finding support for his choice (laws prohibit physician assistance in dying in Maryland) and promotes her strong advocacy for death with dignity (DWD). This has sparked some controversy at NPR, however Diane is on a mission to reach out to us all. She might smile a bit finding that the Seattle Times labels her as a “rebel.
As this point, she states she’s “stepping away from the microphone”, but will continue to advocate for choice by speaking and writing.  She pleaded with the audience to have the “the conversation” with their loved ones as most important way to have choices their respected. “You can sign all those papers, but they won’t mean much unless your loved ones understand and agree about your choices.”
I wish she had emphasized the durable power of attorney for health care (DPOA-HC), which is the most important document.  It truly helped me, as doctor, to know who had the legitimate right to make decisions when the patient could no longer speak for themselves. But that wasn’t her focus in this presentation.
Although I strongly support the DWD movement, only about one in five hundred deaths in Washington and Oregon are from this mode.  Good hospice and palliative care are a much more common way of exiting this life – and are still underutilized.  So my plea with Diane is to show that there can also be control in the mode of dying in many situations without having to invoke physician assisted death (DWD).  But as she said, “Choice is the key.”
Often we don’t understand the choices.  After all, we get no practice in that we hopefully only die once.  The choices are often nuanced to the particular situation.  It’s hardly ever black and white.  Good communication, listening, caring, and focusing on my wishes – that’s what I pray for at my own life’s end.  May we all have an advocate like Diane Rehm.

Sunday, January 24, 2016

"The Fragile Species" - #2

Continuing excerpts from “The Fragile Species” by Lewis Thomas :  “Even so, aging will still be aging, and a strange process posing problems for every human being, and perhaps the approach of medical specialists should become less reductionist and more general.  They may wish to view the whole person rather than concentrating on the singularities of individual diseases. The word ‘holistic’ was invented in the 1920’s by General Jan Smuts to provide shorthand for the almost self-evident truth that any living organism, and perhaps any collection of organisms, is something more than the sum of its working parts.  I wish holism could remain a respectable term for scientific usage, but, alas, it has fallen in bad company.  Science itself is really a holistic enterprise, and no other word would serve quite as well to describe it.  Years ago, the mathematician Poincare wrote, ‘Science is built up with facts as a house is with stones, but a collection of facts is no more a science than a heap of stones is a house.’  The word is becoming trendy, a buzzword, almost lost to science.”

Friday, January 22, 2016

Lewis Thomas - thoughts on aging from "The Fragile Species"

One of my favorite essayists is Lewis Thomas.  He wrote a long series of essays about the human condition many of which were published in the New England Journal of Medicine.  Subsequently, they were collected in three wonderful volumes:  The Fragile Species, The Lives of a Cell, and The Medusa and the Snail.  Over the next several days, I’ll be sharing some of his thinking about aging.  Educated at Princeton and Harvard Medical School, Thomas held many prestigious professorships in pediatrics, medicine, pathology, and biology:
“It is abundantly clear that the problem of aging is a proper field for scientific study and one of the broadest of all fields in human biology.  The array of specific questions to be asked is long and impressive, and each question is a hard one requiring close and attentive scrutiny by the best practitioners of basic science and clinical medicine.  And, as the answers come in, there is no doubt that medicine will be able to devise new technologies for coping with the things that go wrong in the process of aging.  This is an optimistic appraisal but not overly so, provided we are careful with that phrase “things that go wrong.”  There is indeed an extensive pathology of aging, one thing after another goes wrong, failure after failure, and the cumulative impact of these failures is what most people have in mind and fear as the image of aging.  But behind these ailments, often obscured by individual pathologies, is a quite different phenomenon: normal aging, which is not a disease at all, but a stage of living that cannot be averted or bypassed except in one totally unsatisfactory way.  Nonetheless, we regard aging these days as a sort of slow death with everything going wrong.”  Ed. note – more to follow later

Wednesday, January 20, 2016

A thank you letter to David Bowie from a palliative care doctor

Palliative care providers sometimes have a hard time being heard - yet alone listened to in the cacophony of hospital rhythms.  Yet they often provide the needed holistic approach in caring for us nearing life's end.  This British doctor was taken not only with David Bowie's music but also his approach at death's door:
"Your death at home. Many people I talk to as part of my job think that death predominantly happens in hospitals, in very clinical settings, but I presume you chose home and planned this in some detail. This is one of our aims in palliative care, and your ability to achieve this may mean that others will see it as an option they would like fulfilled. The photos that emerged of you some days after your death, were said to be from the last weeks of your life. I do not know whether this is correct, but I am certain that many of us would like to carry off a sharp suit in the same way that you did in those photos. You looked great, as always, and it seemed in direct defiance of all the scary monsters that the last weeks of life can be associated with." 

Sunday, October 18, 2015

Afterward

Afterword
a poem by Jeffrey Harrison

The maple limb severed
by a December storm
still blossoms in May
where it lies on the ground,

its red tassels a message
from the other side,
like a letter arriving
after its writer has died.


Tuesday, October 6, 2015

Ain't No Way to Die - Rapping in the ICU

There’s lots of talk about having “the conversation” with loved ones and warnings about being enmeshed in the medical-industrial complex as we are dying.  As Atul Gawande put it in Being Mortal, “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”

In a fast paced rapping video really meant for our kids and grandkids, here’s Ain’t The Way To Die, based on the Eminem and Rihanna masterpiece Love The Way You Lie.  Send it on to the younger generation if you want them to understand!  (And scroll down on the link for the lyrics if needed.)

Saturday, August 29, 2015

In Belgium has the Slippery Slope Begun in "Death with Dignity"?

There is controversy in Belgium about physician assisted suicide in patients with non-terminal illness.  Click here to read the New Yorker article.

“Last year, thirteen per cent of the Belgians who were euthanized did not have a terminal condition, and roughly three per cent suffered from psychiatric disorders. In Flanders, where the dominant language is Dutch, euthanasia accounts for nearly five per cent of all deaths.”  (In Washington and Oregon it is 0.2% of all deaths.) Some physicians who actively support euthanasia have concerns about “the cowboys” who push the limits on accepting patients who are not terminal, but find life unacceptable for whatever reason.  They see no difference between helping patients who are actively dying and helping a non-terminal patient die.  These controversial physicians feel that if a patient wants to die, then they support their autonomy.  Anything else is paternalism!  Has the slippery slope begun?

Monday, August 17, 2015

Patient or Person

The patient was wheeled into the amphitheater classroom in front of 125 medical students.  Francis Wood Sr, the graying Chief of Medicine was holding forth for us that day.  “Students today I’m going to show you a very interesting case.”

Then he paused as if collecting his thoughts. “Now I’ve just made two mistakes in introducing Mrs. Ellison.  What were they?

We sat there not having any idea what he was talking about.  We had been immersed in pathology, disease, physical exams, and seeing patients.  Dr. Wood said, “Well, first of all I introduced Mrs. Ellison as a case.  What’s wrong with that?  I don’t think she wants to be a ‘case’ but really thinks of herself as a person.  We need to respect the fact she’s a person with a disease – not just a disease we happen to be interested in.  Secondly, when I identified her as ‘interesting’, I wasn’t really talking about her, but about her disease.  In a sense I was allying myself with the disease against the patient!”

Dr. Wood was the person who led me to choose Internal Medicine for residency training.  I hoped to learn about people, the human condition and what can go right or wrong in the spans of our lives. My Dad was my other mentor.  An old-style GP he had a small office, delivered babies, gave ether anesthesia, did minor surgery, etc.  He knew families and they knew him.  He knew he was aging when he was delivering the next generation of babies.  “Jim, get to know the families, what they do, what they value, and try to gain their trust.”

But something’s happened in our rush to modernize care with new “efficiencies.”  For example: every Tuesday, in  “hospital X” your doctor changes – a new Hospitalist takes over.  They review the records as they inherit 12-15 new patients.  Their job is to speedily move you through the hospital and off to Skilled Nursing or home or some other venue such as an Adult Family Home.  There’s a name for this:  “Transfer Trauma”.  We have more technology, but less continuity.  We must ask, “does anyone really know me, know my family, understand my fears and hopes?”  Perhaps some can afford a “concierge doctor” as a bridge, but it’s no solution for most folks.  Hopefully, we will have loved ones to be strong advocates and fill in some of the gaps.  We need to be a person, not an “interesting case.”

Monday, May 11, 2015

What are Our Rights in Nursing Homes?

Are you familiar with resident rights in nursing homes, adult family homes, and assisted living facilities?  There is extensive Washington state law addressing rights.
Here are a few for you (or via your power of attorney, or guardian).  Unfortunately the law in some states is not as robust in terms of protecting resident rights.
  • Safe, clean, comfortable and home like environment
  • Notice of rights, rules, and policies
  • Fees & notice disclosure
  • Approving your plan of care
  • Privacy and confidentiality
  • Rights pertaining to transfer/discharge
  • Grievances are addressed
  • Control over funds/financial affairs
  • Protection from chemical/physical restraints
  • Personal property protection
  • Privacy for mail (arrives unopened) and phone calls
  • Privacy for visits
  • You do not have to sign waivers that release the facility of liability for losses of personal property or injury
Although most people would like their final days at home, many die in hospitals or nursing homes.  Society needs to be responsible so that we may have protections for personal dignity and also have strong advocates for us.  We actually gain many rights when in long term care, but often aren't informed.

Friday, May 1, 2015

How Dead Do You Have to Be?

As technology advances, we are faced with multiple ethical challenges that were unthinkable in the past.  In 1962 a new era of lifesaving began.  The first outpatient kidney dialysis clinic was started by Dr. Belding Scribner in Seattle.  Suddenly there was a lot of demand for treatment but very limited facilities.  Ethics Committees were formed to struggle with allocation of scarce resources - labeled "God Squads" by residents.

Dialysis wasn't an ideal long-term solution.  Subsequently, organ transplantation became available - but again there is a shortage of kidney, hearts, lungs, livers, etc.  Many folks die while on the waiting list.  Living donors are sometimes available but the number of organs for transplant still falls far short.

A recent article about brain death and imminent death was published, where a patient with ALS wanted to donate organs when he was at the point of imminent death - not waiting until brain death when organs are less viable.  It's an interesting, difficult, and sad dilemma to know the right answer.  Is it "do no harm"?  Or respect a patient's autonomy when dying?  Or protecting a hospital's statistics?  Hopefully, there will be a way to address the needs - and to focus on saving lives.

Tuesday, December 16, 2014

Palliative Care is a Win Win for Everyone

It's hard to believe that I was never really taught about how to control pain when I was in medical training.  Well that's not quite true.  I was told to avoid getting patients "hooked" on narcotics and this was certainly drilled into nurse training also.  We learned about disease and disease processes, but not about a holistic view of the patient in their social milieu.

Partly because of this, and our funding mechanisms, medicare and insurance companies organized to pay for disease care - especially procedures.  Procedures are easy to count and easier to control than "soft" care such as a doctor spending 30 minutes trying to sort out a confusing medical condition.  The "procedure based" specialists like radiologists, orthopedists, ophthamologists, gastroenterologists, and cardiologists do disproportionately well historically playing by established reimbursement rules, even though the procedures may be over-utilized.  Costs soar.

Finally we're beginning to look at global costs related to uncoordinated care, poverty, cultural barriers, etc.  The Institute of Medicine (IOM) has a key report on "Dying in America".  This report from the Center to Advance Palliative Care highlights the current changes in health care delivery under Medicare and Obamacare.  It's a must read.  The needed changes appear to be gaining traction.

Wednesday, December 3, 2014

What's a Good Death?

When someone asked a philosopher how he would like to die he replied, "When I least expect it."  Woody Allen in a similar vein stated, "I'm not afraid of dying, I just don't want to be there when it happens."

Although we all may have similar wishes, we are vastly more likely to age slowly, acquire a few chronic conditions, have periodic illnesses with declining health, and then have some kind of "terminal event."  So most of us have time to think about a "good death", but what does that really mean?

There was a recent piece in the New York Times written by a knowledgeable woman, whose father didn't die the way he wanted to - no heroic interventions at the end.  He had a sudden cardiac arrest with subsequent cardiac resuscitation and invasive ICU care.  Once the CPR was initiated it was unclear at to whether her father would survive.  To me it demonstrates that all situations can't be anticipated and that often families need to sit down with the medical team participating in shared decision making.

So what is a good death?  I was asked this question by our local NPR radio station.  After talking to many patients over the years, the following seems most important to have our own wishes adhered to:
  • Pain and symptom management - palliative care consultation and hospice are often needed
  • Preparation for death – spiritual & natural - advance directives - POLST if indicated.
  • Completion of goals - each individual has his/her own wishes
  • Contributing to others – a legacy
  • At peace surrounded by loved ones - most people wish for a home or home-like death.  The ICU isn't a peaceful place necessarily, but at times I've felt a spiritual connection when tubes are removed, monitors turned off, and the family holding and talking quietly to their loved one at the end.

Friday, November 14, 2014

Ezekiel's Flawed Ethics - the Die at 75 Plan

Ezekiel Emanuel wrote an article for the Atlantic on "Why I Hope to Die at 75 - An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly."  As an Oncologist and Ethicist, he says he speaks for himself but implies not so subtlety that it may be best to avoid the consequences of aging and declining health (which probably really begins around age 25).  For himself he would not want any medical tests or therapeutics after age 75.  He argues that the productive years of life are over, that accomplishments should be complete, and that prolonging aging and its consequences is something he wishes to avoid.

Recently, I gave a talk called "Your Life Your Choices" to a couple of life-care communities where the average age was near 80 and most were still in independent living.  Many had lost their spouses and most, by definition, had some degree of declining health.  Sounds depressing doesn't it?  Yet these folks were active - in their faith groups, with their grandchildren, swimming, singing, playing and performing in bands or quartets, line dancing, playing tennis (a few), golf, and enjoying each others company.  There was keen recognition and understanding about end-of-life issues.  Many had POLST forms saying they would never want CPR, but they would accept removing an appendix, taking an antibiotic, and even a new knee or hip. 

I showed these groups a video of CPR, and talked for about 90 minutes about having "the conversation" with loved ones, designating a durable power of attorney for health care, etc. It seems that Emanuel wants to shock us into accepting that we need to face up to the declining years and make plans so I discussed Emanuel's proposal in these groups.  None of them felt they should have died 5 years ago!

Emanuel states that his family disagrees with his wishes.  I hope he can find someone to follow them and respect his autonomy.  But what if he comes in with an infected hangnail with an ascending infection threatening his life with septicemia.  At age 74 take an antibiotic, but decline at 75?

So I think I get his over-exaggerated point that we need to think carefully about prolonging the dying process when we are at an end.  But, with due respect, I think his ethics are flawed.  He is discounting the delight of being old and still functional.  Yes, we won't win a Nobel Prize.  But how about the joy of attending a grandchild's concert, going up to the lake cabin once more with the family, traveling together to Alaska, singing old favorites, volunteering at the food bank or library, or going to the opera.  Ezekiel, there is no age cutoff for enjoying family, friends, and the pleasures of life.  Even though you say you don't support "death with dignity", you are basically proposing that for yourself when you would even decline taking an antibiotic after age 75.

As we die, we leave a legacy for those we leave behind.  Ethical wills, sharing our values, showing love, and supporting our loved ones - yes, even as our spouses age.  There's nothing wrong with a cane, a walker, or a wheelchair - enjoyable life can still be there for many of us.  There can be growth in our spiritual life and new-found loves even as we experience loss.  The old saying "getting old isn't for sissies" rings true because aging does have its trials.  Personally I think rekindling an old forgotten friendship is more important, and perhaps as satisfying, compared to your climb of Mt. Kilimanjaro.

At age 76, as I write this, I think your ethical view of aging is at best cloudy and seems based on fear of loss rather than autonomy.  Yes, there are problems of cost, resources, and "getting out of the way" for the next generation.  But with my new corneas, I can drive safely again.  I love playing tennis doubles with my 80 year old friends twice a week.  Should I have resigned to go blind at 75?  At your healthy age of 58 Ezekiel, you seem to have a peculiar disconnect with those aging and declining in health.  So please re-write your article at age 74!

Friday, November 7, 2014

Voluntary Stopping Eating and Drinking (VSED)

Just today I attended the Washington State End of Life Coalition annual meeting where there is always a lot of sharing of stories.  Phyllis Shacter from Bellingham gave a very moving account of her husband's onset of Alzheimer's and how he ultimately decided the path of VSED while he was still mentally competent.  Here's a link to her TEDxBellington Talk: http://www.youtube.com/watch?v=tiYPaU3h3w8

I don't know if you've seen the French movie, "Amour", which is a beautiful but sad story about an aging French couple with deteriorating health.  Their path of dying was unsupported and tragic.  Please see this link (http://www.endoflifeblog.com/2013/02/amour-disturbingly-beautiful-film.html) for more discussion about the movie and VSED.

Monday, November 3, 2014

Brittany Maynard's Way of Dying

Brittany Maynard has passed from this life.  This brave but unfortunate 29 year old woman with incurable progressive brain cancer drew public attention by choosing to go public with her choice about end of life care.

"Brittany suffered increasingly frequent and longer seizures, severe head and neck pain, and stroke-like symptoms," according to a statement Sunday night from Sean Crowley, spokesman for Compassion & Choices, a national nonprofit working to expand end-of-life options.  "As symptoms grew more severe, she chose to abbreviate the dying process by taking the aid-in-dying medication she had received months ago. This choice is authorized under the Oregon Death With Dignity Act. She died as she intended — peacefully in her bedroom, in the arms of her loved ones," the statement said.

Her decision to post a video and promote dialogue is stimulating an important conversation.  Brittany did not want to die and felt that the term suicide did not ring true in her case.  She did not want to suffer. As the end approached she wanted to be able to die on her own terms.  In the comments to this article, many supported Brittany but a few felt that dying should not be by "assisted suicide".  Indeed, with good palliative and hospice care, "death with dignity" is relatively rare even in the states where it is legal - Oregon, Washington, Vermont, and Montana.  About 1 in 500 deaths are by self ingestion of prescribed lethal drugs.

The fears of the "slippery slope" leading to wider use or abuse have not materialized, but these fears are not unfounded.  I'm a little surprised that Oregon does not keep track of the "tourists" who come to their state for "death with dignity".  It's important to be transparent here.  Some critics fear the "culture of death" to such an extent that they oppose the POLST form and continue to promote the irrational fear of government sponsored "Death Panels".

To me the positive aspects of a case like Brittany's are not only the battle over "death with dignity".  Rather, it's a flash point to get us talking about the inevitable fact that we are all going to die.  In this conversation, we need to talk about our values, hopes, and fears.  Most importantly we need to appoint a person as our Durable Power of Attorney for Health Care, because there's a 50% chance we will be too sick to participate in the discussion about our wishes when we are near life's end.

Thank you and God bless, Brittany.  You are in a better place now.  And you have left behind a legacy that we all need to have choices and have the important conversation about end of life wishes.



Thursday, October 2, 2014

Access to Morphine - a Human Right

In a recent op-ed piece in the New York Times, it's noted that access to morphine is quite limited in the poorer countries:  "As with all successful human rights movements, we need to put a face on the injustice of untreated cancer pain. Witnessing a clinic full of poor children with advanced cancer, crying in agony, should convince anyone that access to morphine is a human right."

Palliative Care as a specialty is a relatively recent innovation in the USA.  More attention is now being paid to end-of-life situations, the access to palliative care even in the USA varies widely.  Morphine costs just pennies, but the concerns over narcotic abuse has limited its use worldwide.  I remember doctors and nurses not wanting to give too much over fear of addiction.  I'd say, "Look, the patient is dying and suffering.  Do you really think addiction to morphine is a concern?"

Careful titration of morphine at the end of life is a blessing.  It reduces pain and shortness of breath plus it produces calm and even euphoria thereby improving the quality of life in life's final days.  It's time to heed the call.  Let's continue to promote the appropriate use of morphine world wide.  It's inexpensive and doable.  It's not only the right thing to do, it's a human right.

Saturday, September 27, 2014

Institute of Medicine's Report on Dying in America

 Recently the Institute of Medicine has issued a comprehensive report on end of life care in America.  This two year review by a diverse and highly qualified committee was supported in part by an anonymous donor.  The complete report and summaries are available to download in a PDF format.

See this for a video report by the pannel.

A recent editorial in the New York Times discusses just how broken and difficult to navigate our "system" of health care can become.  Do we have the ability to improve?  Yes, but not without a lot of changes which are recommended in the Institute of Medicine's report.

Tuesday, September 2, 2014

End of Life Conversations - Progress?

Much is being made of the AMA's recommendation to reimburse doctors for the time they take in having end-of-life discussions with their patients.  The recommendations appear to have a good chance of being covered by Medicare and certainly are a step in the right direction.  But will one conversation and the completed documents really work?  Well, like so many other situations - it depends!

How skilled is the medical provider in having the conversation?  What kind materials are shared?  Videos?  Pamphlets?  Web sites?  What's the follow up?  Are the loved ones involved?  And, most importantly, does completion of the documents really affect end of life care.  We only die once so we get no practice at this or being a critically ill patient.  So how will we really understand the choices and make sure they are known?

There is some data that advance directives don't work, at times aren't honored, well prepared, or even available when needed.

Respecting Choices has attacked the problem successfully and systematically and should be a guiding force showing us how to do advance care planning in an effective programmatic fashion.  On the home front, I've been involved in presenting programs in the community called "Your Life Your Choices".  This program lasts 90 minutes and is well received but only scratches the surface of the complex choices.

A single reimbursable visit for an end-of-life discussion is a good place to start - but much more is needed in order to have an organized way to provide the care that the patient understands and truly wants.  There are technology drivers in medicine that can put a lot of us the ICU on life support.  The conversation and the directives can help, but often aren't definitive.

The POLST form is the most definitive document, but isn't available in many states.  It basically puts your wishes into medical orders which are legal and binding.

So it is beneficial to pay doctors to have this 15 minute discussion and have documentation of the patient's wishes carried out.  But we need to avoid a hasty and mechanistic way of doing this.  The conversation is never easy, straightforward, or simple.  Lots of clarification and questions need to be addressed.  The systems like Respecting Choices (above) address this well.

Thursday, August 28, 2014

Forever Young - Pete Seeger at 91

As I grow older, I find it so refreshing to be around my grandchildren.  It's their idealism mixed with innocence and craziness that attracts me and carries me back many years.  Also, I find it exciting and pleasing when my contemporaries "act young" - being willing to overlook their health complaints, to try new adventures, to volunteer, to connect with others, to sing and to dance.

All this reminds me of  Bob Dylan's song, "Forever Young".  Also when Steve Jobs died, Norah Jones played this song in tribute.


But my all time favorite version of "Forever Young" is the 91 year old Pete Seeger voicing this song with the Rivertown Children's Choir from Beacon, NY - Pete's home town along the Hudson River.  Pete couldn't really sing at that age, so a voice-over with the children's choir was professionally produced with amazing video and sound mixing.

He died peacefully on January 27, 2014, at the age of 94.  He was chopping wood until 10 days before his death.  According to Wikipedia, "When asked about his religious or spiritual views, Seeger replied: 'I feel most spiritual when I’m out in the woods. I feel part of nature.  Or looking up at the stars. [I used to say] I was an atheist. Now I say, it’s all according to your definition of God. According to my definition of God, I’m not an atheist. Because I think God is everything. Whenever I open my eyes I’m looking at God. Whenever I’m listening to something I’m listening to God.'"

May Pete's charm, enthusiasm, and music keep us all forever young.


Sunday, August 3, 2014

Medical Ethics - Paternalism vs Autonomy

I was taught in medical school (some 50 years ago) that doctors had a special duty to protect the patient.  That seemed self evident and logical.  "Do no harm" was a first principle dating back to Hippocrates. However the teaching I received extended the concept to also protect the patient from bad news, and to make "the right" decision for them - not necessarily including them in the conversation or decision making because "it would be too hard on them.".

"Students, you should never tell a patient of the diagnosis of cancer," pontificated our chief of surgery.  "You should protect them and not give them a fatal diagnosis.  Do not tell them that the cancer has progressed, but do let a trusted family member know."

Thursday, June 12, 2014

When to Consider Boerhaave's Syndrome

Mary, at age 77, fell and was admitted to the hospital with a hip fracture and had surgery the following day.  Post-operatively she received narcotics for moderate pain.  Unfortunately she had vomiting and retching, then developed severe abdominal pain.  She had a history of a prior appendectomy, prior gall bladder removal, moderate COPD, and mild heart failure.

Accompanying the pain, her blood pressure fell, she became short of breath, and her oxygen levels fell.  This rapidly progressed.  Cultures were taken for infection, a chest X-Ray done, and antibiotics initiated.  Her kidneys began to malfunction and early signs of shock were present.

Her doctors thought of aspiration pneumonia, esophagitis, a dissecting aneurysm, heart attack, pneumonia, and pulmonary embolism - but were on the wrong track.  The X-Ray should have helped but was interpreted as not showing free air around the lungs or in the soft tissues.  A subsequent CT scan however, did show an abnormal collection of air in these areas.

Finally after 18 hours of going down the wrong path, a diagnosis of a ruptured esophagus was considered.  This was confirmed by putting some contrast dye down the esophagus showing it to leak into the surrounding tissues.  Also, an enzyme only present in saliva was present in the fluid from around the lung.

She was taken to surgery for repair 24 hours after presenting with pain, at a time when the mortality begins to approach 50 - 75%.  Unfortunately she continued to deteriorate and ultimately was placed on comfort care prior to dying.

Comment:  Herman Boerhaave was a brilliant Dutch physician, botanist, and humanist who, in 1724, described a corpulent patient's proclivity toward self-inducted vomiting in allow him to indulge in further overeating.  At autopsy his patient, Baron Jan Van Wassenaer, had olive oil and roast duck flesh outside an esophageal tear.  The condition known as Boerhaave's Syndrome is relatively rare but one of those bits of knowledge that needs to be in the thinking of surgeons and critical care physicians.  Unfortunately a delay in diagnosis of 24 hours leads to a very high mortality.  Samuel Johnson has written an interesting biography of Boerhaave.

Sunday, May 25, 2014

CPR Without Consent

Agnes was out shopping at her local corner store.  At age 82 her body was beginning to show typical signs of aging.  She had survived breast cancer surgery, a hip replacement, and cataract surgery.  Her doctors told her she had osteoporosis and low Vitamin D.  She took medications for her hypertension, cholesterol, and osteoporosis.  Her spine had begun to curve and her gait was a few steps slower.  Yet, with her shopping cart she still enjoyed her trips to the store.  Her best friend had suffered a cardiac arrest recently and didn't survive the hospital stay.  She discussed this with her retirement home personnel and decided she never would want CPR.  A "Do-Not-Resuscitate" order was initiated by completing a POLST form (Physician's Order for Life Sustaining Treatment).  She made copies of the POLST form giving them to her physician and retirement home staff.

While at the corner store, Agnes felt light headed and sat for a moment but then slumped to the floor.  Shoppers at the store immediately started CPR and 911 summoned the Medics.  With the standard 1.5 to 2" compressions of the sternum, multiple ribs were broken and the lungs were later found to be punctured.  Her heart rhythm was "shockable" and after 5 shocks, she stabilized and was taken to a nearby ICU.  The next few days were stormy both medically and ethically.  The hospital staff felt they had preserved a life, yet the family said she was ready to "pass on" and didn't want the heroic life support.  Finally the family and POLST form wishes prevailed and she was "allowed" to die in the ICU after the tubes were removed.

Comment:  Society generally prohibits us from medically or surgically treating a patient without their informed consent.  However society places, quite naturally, a high value on preserving life.  Since the 1960's CPR has been evolving and improving.  It has been popularized on multiple TV shows such as ER, where the survival rates approach 66%, much higher that the real word data (which continues to improve).

The "frail elderly" are a particular problem because the trauma of CPR may cause more harm than good in some individuals.  The statistics of young people don't apply to the elderly.  And many elderly just don't want CPR saying, "I've had a full life and having my heart stop wouldn't be a bad way to go."

Yet all of us are "signed up" for CPR, unless there's a really clear way to avoid it.  Some families simply don't call 911, some have POLST forms, or some spouses and caregivers are able intercept the process by demonstrating they have power of attorney for health care.

The American Bar Association has come up with a smart phone app to store advance directives and other medical data which might be helpful to the techie generation.  Some states have free registries and there is a fee based national registry for advance care documents, but finding these can be difficult in the acute situation.

The frustrating bottom line for the "frail elderly" is that very few of us have had an informed consent discussion about the pros and cons of CPR.  And even if we decide, "Heck, I'd never want anything like that", a lot can still go wrong in terms of knowing and respecting our wishes.  Even a "No Code" tattoo on your chest isn't legally binding!  So in addition to having "the conversation" with your doctor and loved ones, try to come up with a plan if you really want to avoid CPR.  One thought is to electronically store any POLST/DNR orders with 911 responders.  That way, when they are summoned, the orders will be immediately available.   This may a concept worth field testing.

Friday, April 25, 2014

A Moral Community in the ICU

When I entered the room, my patient was surrounded by worried family.  They had lots of questions.  My concern was that I didn't know either the patient or family.  Dan had been brought to the ICU after a cardiac arrest outside the hospital.  The medics had gotten the heart restarted with CPR and shocks, but Dan was unconscious and on a ventilator.  So how to begin?

I introduced myself and explained that I needed to examine Dan and get more information from the family, then we would see what else we needed to do.  The anxiety was palpable.  He was soon to also be seen by the neurologist.  The cardiologist felt that his heart was "stable" and that he had had an arrhythmia, not a heart attack.

A son from Minneapolis was calling in.  The two other children at the bedside and Sam's wife, Marilynne, were in tears.

So how do I proceed from here?  The medical evaluations were pretty straight forward.  But communicating with the family is something I only learned over time.

Family conferences and  decision making with the medical providers occurs daily in the ICU, but the effectiveness varies widely.  A medical social worker and I developed a shared decision making pathway for medical providers to use.  One of the steps in the process is the concept of forming a moral community.

We would invite the family to meet in a quiet place, have a telephone/speaker for those unable to be there, and go around the room introducing ourselves.  The moral community concept is much like what goes on in an ethics committee discussion. The discussion centers around the patient's wishes and values respecting the patient's autonomy.  The community of caregivers (medical and family) begins to form around those values and wishes.  Caring, empathy and sharing are all key to begin to have the group act functionally as a moral community.  Modeling of these behaviors at times helps deal with the anger and frustration often present.

For more information please see our publication about a guide to shared decision making in serious illness.

Dan's family was devastated that he suffered irreversible brain death following his cardiac arrest.  Using shared decision making they agreed with removal of life support.  Allowing transparency, showing caring, focusing on Dan's wishes and values - all of these gave the family a sense that they were doing the right thing.