Thursday, December 31, 2015

Music and Dying

NY Times Journal of Medicine (December 30, 2015)
Songs of Transition by Jennifer Hollis


"I am a music thanatologist, trained to offer music in a prescriptive way, to create a calm space for dying patients and their families. I focus on the patient’s breath as I play the harp and sing. With this rhythm as my guide, music can echo and reflect the dying process. The patient leads the music vigil with his or her breath, right in the middle of the hum of machines, the trill of cellphones, and the voices and nose-blowing of family. It often feels to me as if the room becomes larger, warmed by music and filled with the courage of families preparing to say goodbye."

Also see: The Hospice Flute. and Death Music.

This is the ultimate low-tech, high-touch intervention.

Book:  Music at the End of Life: Easing the pain and preparing the passage. by Jennifer Hollis (2010)

Tuesday, December 29, 2015

On Dying Alone in Prison

The United States incarcerates the largest number of people in the world.  Many would not be imprisoned elsewhere.  They are largely disenfranchised people who cannot afford lawyers to plead their cases.  This moving essay addresses the plight of individuals dying in the prison system.

Saturday, December 26, 2015

Japanese Death Poems


Although the consciousness of death is, in most cultures, very much a part of life, this is perhaps nowhere more true than in Japan, where the approach of death has given rise to a centuries-old tradition of writing jisei, or the "death poem." Such a poem is often written in the very last moments of the poet's life.




on a journey, ill:
my dream goes wandering
over withered fields   (Basho)



illness lingers on and on
till over Basho’s withered fields,
the moon    (Gimei)




Approaching death Shisui students asked him to write a death poem. Shisui “grasped his brush, painted a circle, cast the brush aside and died”.  This symbol is known as the enso which is prominent in Zen Buddhism and indicates the emptiness of all things.

 



Long Term Care Insurance, Part II



Long-term care insurance isn’t for everybody, but it can be useful for people who are interested in preserving their estate for their heirs and for families determined to provide high-quality home care or a superior nursing home for aging loved ones."

This is a helpful article on a complicated subject.

Also see Long Term Care Insurance Part I.


Friday, December 25, 2015

How Milennials Die


Friend Request (2010)  by Daniela Lamas, M.D.

“In the middle of my intern year, I became Facebook friends with a young man who was dying in the intensive-care unit. An investment banker in his mid-20s, he thought he was healthy until a fluttering in his chest and swollen ankles took him to a doctor. Now he was in the I.C.U. with a rare cardiac condition.  And his laptop. That’s the first thing I noticed the morning a group of us stood outside his room on rounds. He was shocked by his internal defibrillator three times the night before — died, that is, three times before being brought back with jolts of electricity. And this young man with a steroid-swollen face was surfing the Internet.

“Are you on Facebook?” he asked me. “I’ll friend you, and you can see the pictures.”

Ghosts in the Machine



In an essay they contributed to the ‘‘Handbook of Death and Dying,’’ the sociologists Wood and Williamson observe that people in the developed world have managed to banish death from their everyday lives — no small feat. ‘‘In the United States and Western Europe, dying is now primarily a private and often technical affair, hidden behind the closed doors of the hospital, the mortuary and the funeral home,’’ they write.

Proof enough of the change in our culture is that Facebook and other social-­media platforms have introduced procedures for handling profiles after their owners die. Families may decide whether to preserve a loved one’s old accounts; if they do, the accounts become memorials, designated places to lay a digital bouquet.

Wednesday, December 23, 2015

End of Life Discussions

Though most patients wish to discuss end-of-life (EOL) issues, doctors are reluctant to conduct end-of-life conversations. Little is known about the barriers doctors face in conducting effective EOL conversations with diverse patients. This mixed methods study was undertaken to empirically identify barriers faced by doctors (if any) in conducting effective EOL conversations with diverse patients and to determine if the doctors’ age, gender, ethnicity and medical sub-specialty influenced the barriers reported.






Monday, December 21, 2015

Long Term Care Insurance: Baffling and Complex

This article in then December 18, 2015 NY Times is a good introduction to this thorny problem.

Long-Term Care Insurance Can Baffle, With Complex Policies and Costs


Insuring for long-term care is a lot like trying to cover the future financial impact of climate change. It’s a universal problem that looms large, is hard to predict and will be costly to mitigate.
Few have prepared for this gathering storm. Private long-term care insurance is available, of course, to help pay for expensive services if you are mentally or physically incapacitated late in life.

Sunday, December 20, 2015

Jane Austen's Guide to Alzheimer's


Image from the Times article
Carol Adams writes in her essay in the Sunday, December 20, 2015 New York Times:
I came to Jane Austen’s “Emma” in my 50s.  During a caregiving crisis in my life, I lost count of how many times I read or listened to Austen’s novel. I turned her words over in my mind like a piece of slowly melting hard candy.

“Emma,” which was first published 200 years ago this month, is one huge paean to caregiving, depicting its hardships, demands and frustrations. Recognizing the challenges in Emma’s everyday life, I was no longer bothered by Emma; I felt my heart break for her.

It is amazing how much one can learn from a really great novel.  According to Ms. Adams, “Emma” is a textbook for care givers.  It is now on my list…

Saturday, December 19, 2015

Sermon on ""Grief and Woleness"

Our friend, Bill Zeckhausen, WC '56, recommended a sermon by Tony Fisher, a minister of the United Congregation church, of Greater Naples, Florida entitled "Grief and Woleness.  (November 15, 2015)

It's an eloquent and moving homily that most will value listening to (15 minutes).

Sunday, December 13, 2015

Five Wishes


Five Wishes is a United States advance directive created by the non-profit organization Aging with Dignity. It has been described as the "living will with a heart and soul."
The Five Wishes (Online Version)
        1: The Person I Want to Make Care Decisions for Me When I Can't
        2: The Kind of Medical Treatment I Want or Don't Want
        3: How Comfortable I Want to Be
        4: How I Want People to Treat Me
        5: What I Want My Loved Ones to Know

History (About Five Wishes)
Five Wishes was originally introduced in 1996 as a Florida-only document, combining a living will and health care power of attorney in addition to addressing matters of comfort care and spirituality. With help from the American Bar Association's Commission on Law and Aging and leading medical experts, a national version of Five Wishes was introduced in 1998. It was originally distributed with support from a grant by the Robert Wood Johnson Foundation. With assistance from the United Health Foundation, Five Wishes is now available in 27 languages and in Braille.  More than 18 million documents have been distributed by a network of over 35,000 partner organizations worldwide. An online version called Five Wishes Online was introduced in 2011 allowing users to complete the document using an online interface or print out a blank version to complete by hand.

Saturday, December 12, 2015

The Stanford Letter Project


"Our goal is to empower all adults to take the initiative to talk to their doctor about what matters most to them at life's end. Our research has shown that while almost all doctors agree that it is important for them to have end-of-life conversations with their patients, most doctors struggle with these conversations. Our research has also shown that patients from all ethnic backgrounds agree that it is important for them to have end of life conversations with their doctors. However, patients do not quite know how to initiate these conversations. 

The Letter Project will help you write a letter to your doctor using a simple template. The template is based on extensive research and is specifically designed to help you voice the key information your doctor needs in order to provide end-of-life care to you that is congruent with your values and wishes. 

Use our letter template, write your letter, print it and discuss it with your family and your doctor. The letter template is available in several languages. Many people have already written their letter. Write your letter now!"


Imagine Quality at End of Life


Katy Butler's memorable book Knocking on Heaven's Door is almost a textbook for care of the failing elderly patient.  From the dust jacket: "Like so many of us, the Buler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of most activities of daily living. Her mother was thrust into full-time caregiving, and Katy Butler became one of the 24 million Americans who help care for their aging and failing parents.”


Imagine a Medicare ‘Part Q’ for Quality at the End of Life is an article in the NY Times by Katie Butler that appeared by years after the publication of her book.  It begins:



"I spent the last Sunday of my father’s life sitting by his bed on the hospice unit in a small Connecticut hospital. He was dying of pneumonia, once called “the old man’s friend.” There was a nondenominational chapel down the hall, and a sheet cake in the kitchen. His hand was warm. Reassured by the quiet presence of the hospice nurses and feeling the mysterious quickening of life through his veins, I gave over to being his daughter and letting him be my father one last time."

Imagining Medicare Part Q

This is an extraordinary opinion piece:


By Katy Butler December 9, 2015 New York Times

(Katy Butler is the author of “Knocking on Heaven’s Door: The Path to a Better Way of Death” and the administrator of the Slow Medicine group on Facebook.)

The article is on the 2016 Class syllabus. 

Here are some references:

Katy Butler: Knocking on Heaven’s Door: The Path to a Better Way of Death. Scribner; Reprint edition (June 10, 2014) 
Notes on Knocking on Heaven's Door  .

Muriel Gillick (Interview): Caring for the frail, demented and dying. (Prolonging life at the expense of its quality can rob elderly people of peaceful, meaningful years.)  http://kohd-wc.blogspot.com/search/label/Gillick

Amy Berman.  The Niagara Falls Trajectory . https://nihrecord.nih.gov/newsletters/2012/09_14_2012/story3.htm

Veterans Association Home Based Primary Care Program.
http://www.va.gov/geriatrics/guide/longtermcare/home_based_primary_care.asp

Katy Butler’s Slow Medicine Public Face Book Group
https://www.facebook.com/groups/108731512508516/?fref=nf

An Interview with Marion Gillick

Caring for the frail, demented and dying.

Prolonging life at the expense of its quality can rob elderly people of peaceful, meaningful years, Muriel Gillick tells Les Olson.

Monday, December 7, 2015

23 weeks 6 days


This is a moving NPR piece.
"When Kelley Benham and her husband Tom French finally got pregnant, after many attempts and a good deal of technological help, everything was perfect. Until it wasn't. Their story raises questions that, until recently, no parent had to face… and that are still nearly impossible to answer.

This hour, we spend the entire episode on the story of Kelley and Tom, whose daughter was born at 23 weeks and 6 days, roughly halfway to full term. Their story contains an entire universe of questions about the lines between life and death, reflex and will, and the confusing tug of war between two basic moral touchstones: doing no harm...and doing everything in our power to help. Kelley has written about her experience in a brilliant series of articles in the Tampa Bay Times. And when you're done listening to the episode, be sure to check out the video below--but be warned, it does contain spoilers."


Saturday, November 21, 2015

Green Nursing Homes

"For greater warmth and nurturing, seniors are turning to small residences like Green House, which is part of a complex of senior housing and care options, and privately owned care homes that are often unmarked in residential neighborhoods. They are usually newer, sometimes cheaper, and generally offer more customized care than most nursing homes."

Bill Thomas and others pioneered "green nursing homes."  There is a chapter on this in Gawande's "Being Mortal."  A recent article in the NY Times addresses this movement.  It would seem that these more user-friendly homes can be cheaper and more humane than the more mercantile facility that prevails in most of our country.

See: "Putting the 'Home' Back in Nursing Home".

Resident and Staff at "Green House"
Also see:  Jane Brody on The Green House Effect.

Thursday, November 19, 2015

Toward Evidence-Based End-of-Life Care

The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug.

See:
Toward Evidence-Based End-of-Life Care
Scott D. Halpern, M.D., Ph.D. N Engl J Med 2015; 373:2001-2003

Free Full Text Online.

Tuesday, November 17, 2015

End of Life Care,, Berkshires: A Cautionary Tale


To the editor:
Letter: Be aware of state's end-of-life laws
The Berkshire Eagle  November 17. 2015

I would like to share some important information regarding end of life rights or our loved ones, family and friends.

In Massachusetts we have a provision regarding our end of life health care, it is called MOLST or Massachusetts Orders for Life Sustaining Treatment. Please talk to your physicians about this for more information, but let me tell you what happened to my family.

My father lived with me for six months out of the year. He was a Canadian citizen and all of his health care was in Canada. This year his health was failing, and he wished to be with his family in Massachusetts if possible when he was to pass. He slowed down and finally was confined to his bed. He died peacefully with his family at his side holding his hand. It was the passing we had all hoped, that he would be with us, and not alone in Canada.

After he died we called the funeral home, They asked us to call the local police which we did. The police arrived and asked to see the MOLST. Needless to say, I did not have one in place, and honestly did not think I needed one. The police explained that it was the law that they had to call paramedics. The fire department came, then EMTs. They pulled my father out of his bed onto the floor, put a tube into his airway and started CPR. They also hooked him up to a defibrillator. The responders were very apologetic about having to try to revive him, but since there was not a MOLST in place they had a legal responsibility to act. My father did not revive.
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Needless to say this experience was shocking, and made a difficult situation even more awful. I felt that my father's body was being violated and I feel it is now my obligation to make the community aware of the importance of having a MOLST in place, especially for our older ones or those who may be ill.

Your medical team can give you more information about the MOLST and how to obtain the form. As hard as end of life decisions are to talk about, please be prepared and educate yourself as to the law in Massachusetts.

Julie Rose Morgan
Dalton, Massachusetts

Saturday, November 14, 2015

High School Death and Dying Course


"Few subjects run more powerfully counter to an American teenager’s innate sense of immortality than a confrontation with the reality of life’s end. The study of death became more common at the college level with the publication of Elisabeth Kubler-Ross’s influential book, “On Death and Dying,” in 1969. But it is rare that the subject is discussed at the high school level, particularly with an approach that includes fairly explicit instruction in caring for a cadaver."
This essay describes a death and dying course at a Jewish high school in Florida: For Jewish Students, Field Trip Is Window on Death and Dying.

Sunday, November 8, 2015

Overtreatment of the Elderly


Evidence is accumulating that older adults with diabetes, hypertension and other conditions should be treated less aggressively than they commonly are.

This approach has been named “Deintensification.”

So writes NY Times reporter Paula Span is an important article in the New York Times: Some Older Patients Are Treated Not Wisely, but Too Much

It is worth the time to read this article slowly and carefully.

Tuesday, November 3, 2015

Freeheld (2007)

Detective Lieutenant Laurel Hester spent 25 years investigating tough cases in Ocean County, New Jersey, protecting the rights of victims and putting her life on the line. She had no reason to expect that in the last year of her life, after she was diagnosed with terminal cancer, that her final battle for justice would be for the woman she loved.

The documentary film "Freeheld" chronicles Laurel's struggle to transfer her earned pension to her domestic partner, Stacie Andree. With less than six months to live, Laurel refuses to back down when her elected officials - the Ocean County Freeholders -deny her request to leave her pension to Stacie, an automatic option for heterosexual married couples. The film is structured chronologically, following both the escalation of Laurel's battle with the Freeholders and the decline of her health as cancer spreads to her brain.

As Laurel's plight intensifies, it spurs a media frenzy and a passionate advocacy campaign. At the same time, "Freeheld" captures a quieter, personal story: that of the deep love between Laurel and Stacie as they face the reality of losing each other. Alternating from packed public demonstrations at the county courthouse to quiet, tender moments of Laurel and Stacie at home, "Freeheld" combines tension-filled political drama with personal detail, creating a nuanced study of a grassroots fight for justice.

About Freeheld.

Trailer.

I saw this documentary recently.  It is less than 1/2 the length of the Hollywood version and much better.  It deals with domestic partnerships and death and dying; and is somewhat relevant to gay marriage, too.  Bottom line.  A moving documentary that is worth the time.

Thursday, October 29, 2015

Deciding About Dying

This is a meaningful essay in the NY Times by Susan Gubar, a woman living with metastatic ovarian cancer.  She speaks from her heart, from "being there."

It begins with this memorable sentence: "We know little about death, after all: There are no survivors to tell the tale. But we do know something about dying."

Monday, October 26, 2015

Why Are Doctors Afraid of The Word “Death”?

If death is seen as the last enemy of medicine, then doctors will lose every time. The human mortality rate continues to hold steady at 100 percent and shows no signs of changing. Our next medical innovation — the acceptance of our mortality — will not come as a technical solution to a scientific problem. It will have to be a more human approach to a deep mystery of every life — the mystery of being mortal.

This is an excerpt from a fine article in The Washington Post: Why Are Doctors Afraid of The Word "Death" that was sent to us by Karen Gunderscheimer of Williamstown, Massachusetts.



Monday, October 19, 2015

The Lonely Death of George Bell

Apartment of George Bell after his unattended death in 2014
This is a poignant article that appeared in the Sunday, October 18, 2015 New York Times.  It covers many aspects of death and dying and, although it is overlong, it is rewarding to read.

They found him in the living room, crumpled up on the mottled carpet. The police did. Sniffing a fetid odor, a neighbor had called 911. The apartment was in north-central Queens, in an unassertive building on 79th Street in Jackson Heights.

George Bell, a life-long bachelor, died unattended at age 72 in Queens, New York.  If you make it through this article you will learn much and have much to ponder.

Deborah Alecson writes: This is a remarkable piece of investigative reporting that starts with the smell of death from within an apartmant to the life of a man, George Bell, who died ultimately alone amongst accumulated clutter and filth.  We also learn about the "players" involved in this kind of death from the people who rummage through his belongings for important documents and for clues of people in his circle, to the handling of his body and its final cremation.  This is a deeply human story placed in the heart of what a "death system" is in our urban culture.

The Letters on this article are also worth reading.

Saturday, September 26, 2015

When it comes to end-of-life care, perhaps we do need a bigger hammer


 by Richard Sontheimer.

While sitting one evening with my terminally ill elderly mother, she again asked me to help her end her suffering.  This time it was, “Could you just go get the hammer and hit me in the head?” Her previous requests had included “Son, you are a doctor, can’t you do something to help me with this?”  And then, “They treat animals better than this.”

On previous occasions, I had to remind my mom that we lived in one of the 48 states in the USA that does not have a death-with-dignity euthanasia law.  Her response was, “Then can you move me to Oregon or Washington?”

Rick Sontheimer is an old friend of mine.  His article is well-written, deep and important.  You can access it at Kevinmd.com.

Thursday, September 24, 2015

Escape From the Land of the Pink Bibs


This is the story of Narcy Houle’s father, a highly respected orthopedic surgeon, developed Alzheimer’s.  During the course of the disease, he broke his hip. One day when we visited him at the nursing center, about six months after his accident, we found him sitting in a row of patients all wearing pink bibs, left on after they had finished eating. Like the others, his head was bent toward his lap; though his eyes were open, they were not focused on anything. His shoulders slouched, like a rag doll’s, and his mouth hung slightly ajar.

What he needed was a geriatrician.  Most health care professionals have had little to no training in the care of older adults. Currently, 97 percent of all medical students in the United States do not take a single course in geriatrics.

Recent studies show that good geriatric care can make an enormous difference.  Older adults whose health is monitored by a geriatrician enjoy more years of independent living, greater social and physical functioning and lower presence of disease. In addition, these patients show increased satisfaction, spend less time in the hospital, exhibit markedly decreased rates of depression and spend less time in nursing homes.

See:  An Aging Population, Without the Doctors to Match by Marcy Cottrell Houle (NY Times, September 23, 2015)

Saturday, August 29, 2015

A Racial Gap in Attitudes Toward Hospice Care

Dateline Buffalo: Twice already, Narseary and Vernal Harris have watched a son die. The first time — Paul, at 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his sickle cell anemia  progressed. When the same illness ravaged Solomon, at 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.

This is a fine article about hospice use in the black community. about why it is less frequently sought, and why blacks distrust the health care system.

Sunday, July 26, 2015

Helping Patients and Doctors Talk About Death


"Medicare announced plans in July 2015 to reimburse doctors for talking with patients about what treatments they want — and don’t want — toward the end of life. This sensible, long-overdue proposal is likely to have a very wide impact. About 80 percent of people who die in the United States each year are covered by Medicare, and Medicare policies are often followed by private insurers, some of which already pay for these advance-planning conversations.



"Virtually all experts agree that medical professionals will need additional training. Many doctors are uncomfortable talking to patients about planning for death."



Sunday, July 5, 2015

How to Talk About Dying

by Ellen Goodman, NY Times, July 1, 2015


This is an extraordinary essay.  Well worth studying.  It’s common sense that we need to be reminded of.
Excerpts:
The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end.

So, a small group of us — each with his or her own story — started the Conversation Project, a nonprofit, out of the belief that surely we could make this easier. (also see the Conversation "starter kit." Our partners at the Institute for Healthcare Improvement gathered experts frustrated at the pace of change who believed that the health care system wouldn’t change until the culture changed. So we are trying to change the culture.

There is now, finally, a real momentum for improving end-of-life care. The signs range from the Institute of Medicine’s report, “Dying in America,” to the success of Atul Gawande’s book “Being Mortal.”

There is also a growing public awareness of the need to break through the reluctance that has kept us tongue-tied for so long. A survey we did last year showed that 90 percent of Americans now think it’s important to have the conversation. But the same survey showed something else: Only 30 percent of us have actually had these conversations. So the gap remains huge.

From all the stories shared with us, we know that what people need most is help getting started. They need a travel guide to take the first steps down an unfamiliar and difficult road. So we created a ConversationStarter Kit.

Dying is not just a medical experience, it is also a deeply human experience.


How Therapicts Grieve

A therapist may spend hundreds of hours, perhaps more than a thousand, hearing about a patient’s most exalted aspirations and most murderous, hateful fantasies. During this time, the patient may endure excruciating losses, unbearable shame, bitter sadness and great triumphs. You may accompany patients through torturous adolescence into adulthood. Or you may meet them in middle age and be with them as they age and eventually die. You collaborate in a deep process of discovery.

Few encounters are this deeply honest, and therefore intimate. The attachment engenders profound feelings, a particular kind of love.

Dr. Robin Weiss' sensitive essay in the NY Times (July 5, 2015) is a good source of insights.