On Writing An Obituary

Richard Smith is an emeritus editor-on-chief of the British Medical Journal.  Just about everything he writes is prescient.  A recent piece of his in the BMJ deals with obituaries.  What would you like your obituary to contain?

“Just as I think everybody should have a living will, a plan for their funeral, and clear instructions on whether you want to be buried or cremated, so I advise thinking about your obituary or even obituaries…You might write it yourself, but many publications are sniffy about self-written obituaries. So you might do better to get somebody to write one for you, and that’s why Sir Anthony Grabham rang.  We worked well together and liked each other, although we were very different: him being a polished master of the establishment, whereas I’m a 'loose cannon,' to put it mildly"

Richard Smith: Writing an Obituary of the Living

The Conversation

A Revolutionary Plan for End-Of-Life Care

From Amazon:
There is an unspoken dark side of American medicine - keeping patients alive at any price. Two thirds of Americans die in healthcare institutions tethered to machines and tubes at bankrupting costs, even though research shows that most prefer to die at home in comfort, surrounded by loved ones.
Dr. Angelo E. Volandes believes that a life well lived deserves a good ending. Through the stories of seven patients and seven very different end-of-life experiences, he demonstrates that what people with a serious illness, who are approaching the end of their lives, need most is not new technologies but one simple thing: The Conversation. In this book, he argues for a radical re-envisioning of the patient-doctor relationship and offers ways for patients and their families to talk about this difficult issue to ensure that patients will be at the center and in charge of their medical care. 

This is a low book that the covers many aspects of end–of-life care. It will be useful to anyone who takes the time to read it. It compliments Gawande's Being Mortal. The Conversation is mostly directed to patients. Physicians may find it too simplistic, but it is still helpful in pointing out the discussions we should have with patients.

Volandes and his group have produced "The Conversation" videos which can be shown to patients to help with making end-of-life decisions. These videos are available at many institutions around the country. They would be helpful to have in an office setting, in addition. They can be shown on an iPad for convenience and portability. DJE
 

Oliver Sacks' Letter to the World

On February 19, 2015, Oliver Sacks had an Op-Ed piece in the New York Times about his diagnosis of terminal cancer: My Own Life.

I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

In this letter to the world he continues to teach us in his living and his dying.

Complicated Grief

Jane Brody's Personal Health column in the February 17th, 2015 NY Times is an informative and comprehensive discussion of "complicated grief."

Image from Times article

“Complicated grief is like a wound that doesn’t heal and can follow the loss of any close relationship. The risk of complicated grief is greatest — 10 percent to 20 percent — among those who lose a romantic partner and even higher among those who lose a child. It is more common following a sudden or violent death and most common among women older than 60, she reported."

See:  Brody: "When Grief Won't Relent"

Also referenced:

1) Shear MK. Clinical practice. Complicated grief. N Engl J Med. 2015 Jan 8;372(2):153-60.

2) The Center for Complicated Grief (Columbia University, NY)

Advanced Directives - NEJM Discussion

End Of Life Advanced Directive Discussion

New England Journal of Medicine, February 12, 2015, vol:372:pages:667-670

PDF of NEJM article.

Who should have the difficult discussion of the goals of care for a terminal patient? With whom does this responsibility lie? What course of action should be taken?

1. As the primary care physician, discuss the goals of care with the patient yourself.

2. Recommend that the oncology team discuss the goals of care with the patient.

3. Refer the patient to a palliative care physician who will discuss the goals of care with the patient.

To aid in your decision-making each of these approaches is defended in a short essay by an expert in the field.

N.B.  This is a an instructive article that will help patients and their care-givers.

The most useful comments came from palliative care physician, Diane Meier:  In an ideal world, every clinician caring for terminal patients would have the training and the team support to care for their patients throughout the course of their illness, especially during its most difficult and challenging phases.  Most primary care clinicians and specialists don't have time to manage complex symptoms, as well as emotional, practical, spiritual, and family needs, amid the escalating productivity requirements characterizing medical practice in the United States.  Most terminal patients’ care will be improved through access to specialist-level palliative care.

YOLO*

*  For those who are not Gen-Y members (aka Millennials), YOLO means "you only live once." 

Death Has a Sound

Death is the deepest of silence.
It is a quiet unlike any other.
Do you hear that?
Be still and listen.
There it is.
A quiet unlike any other.

Marla Lukofsky

Dec. 2006

When ‘Doing Everything’ Is Way Too Much

By Jessica Nutik Zitter   

New York Times, February 8, 2015

“In trying to honor Vincent’s autonomy, we abandoned him in hell.” This is a harrowing essay by an I.C.U. physician.  It covers many topics dealing with autonomy, advance directives and end-of-life care.  What Ivan Illich called “The Rule of Rescue” is highlighted.

Read: When ‘Doing Everything’ Is Way Too Much

Canada's SupremeCourt Strikes Down Ban on Aiding Patient Suicide

Canada Court Strikes Down Ban on Aiding Patient Suicide
NY Times, February 7, 2015

Ottawa — The Supreme Court of Canada on Friday [February 6, 2015] struck down laws banning physician-assisted suicide for patients with “grievous and irremediable” medical conditions.
The unanimous decision, which reverses the position taken by the court 22 years ago, came more quickly than expected and might become an issue in federal elections to be held this year.

Also see:
The National Post [of Canada]: 
Andrew Coyne: Crossing the Rubicon, Supreme Court seems eerily complacent about ramifications of assisted suicide ruling
and
John Ivison: Conservatives will find themselves on wrong side of public opinion if they fight assisted-suicide decision

Menke's Syndrome: A Family View

Dane Wilson has shared a story about a family he knows from Upstate New York: “The DeFabios are a lovely family living in Ballston Spa, NY. Tina is an English teacher and Dan is a filmmaker. Their son, Lucas, was diagnosed with Menke’s Disease, a chronic and usually fatal illness that affects protein structures of many systems of the body, shortly after he was born. Since then, Dan and Tina have publicly shared their experiences raising their child, including their struggles with his mortality and their own. “You can’t change the diagnosis, but you can change the way you view it,” Dan said. “The only thing we need to do is love him,” Tina said.

Check out this article to learn more."

Photo from the Saratogan 2013

About Menke's Disease: 

Menkes disease (MD) is a rare, inherited, metabolic disorder, with an estimated incidence of 1 in 114000 - 250000 live births [8]. It is characterized by psychomotor deterioration, refractory epilepsy, thin and brittle hypopigmented hair, skin pallor, and hypothermia. There are a few variants of MD, such as a mild variant, neonatal variant, and occipital horn syndrome. Infants with classical MD are usually healthy until 2-3 months of age, when the disease starts to manifest with developmental delay, failure to thrive, intractable seizures and progressive hypotonia with a characteristic cherubic face.  Reference: Dermatology Online Journal

MD is a fascinating problem to medical scientists, but it strikes me that they tell us little about what the life of a child and that of his family is like.  The picture of the DeFabios gives a glimpse.  There is so much more to tell.

Death and Dignity — A Case of Individualized Decision Making

The following is a classic article about "assisted suicide" which appeared 24 years ago in the New England Journal of Medicine.  It is still a "keeper."

Death and Dignity — A Case of Individualized Decision Making

by Timothy E. Quill, M.D.

 N Engl J Med 1991; 324:691-694  Full Text PDF

"Diane was feeling tired and had a rash. A common scenario, though there was something subliminally worrisome that prompted me to check her blood count. Her hematocrit was 22, and the white-cell count was 4.3 with some metamyelocytes and unusual white cells. I wanted it to be viral, trying to deny what was staring me in the face. Perhaps in a repeated count it would disappear. I called Diane and told her it might be more serious than I had initially thought — that the test needed to be repeated and that if she felt worse, we might have to move quickly. When she pressed for the possibilities, I reluctantly opened the door to leukemia. Hearing the word seemed to make it exist. "Oh, shit!" she said. "Don't tell me that." Oh, shit! I thought, I wish I didn't have to."

See also:

Doctor Says He Gave Patient Drug to Help Her Commit Suicide

By Lawrence K. Altman, Special to The New York Times

Published: March 7, 1991

Rochester, March 6— In a rare disclosure, a Rochester doctor has told how he prescribed the barbiturates that a 45-year-old female patient needed to kill herself after she refused treatment for a severe form of leukemia.

Doctor-Assisted Suicide in New York

Lawsuit Seeks to Legalize Doctor-Assisted Suicide for Terminally Ill Patients in New York

by Anemona Hartocollis  Feb. 3, 2015, New Yuork Times

This is a good article that reviews the topic well.  The author makes the point that "aid in dying" is a better term than "doctor-assisted suicide."  It's worth keeping as a reference.   The work of Dr. Timothy Quill is discussed.

A group of doctors and terminally ill patients are asking New York courts to declare that doctor-assisted suicide is legal and not covered by the state’s prohibition on helping people take their own lives.

Under longtime interpretations of state law, a doctor who helps a terminally ill patient die by providing a fatal dose of medication can be prosecuted under the manslaughter statute, which covers anyone who “intentionally causes or aids another person to commit suicide.”

The plaintiffs argue that because doctors are already allowed to help terminally ill patients die in some circumstances, such as when they remove life support, the fact that they cannot hasten death for other terminally ill patients violates the equal protection clause of the State Constitution.

Assisted suicide — advocates prefer the term “aid in dying” — is legal in only a few states, including Montana, Washington, New Mexico, Oregon and Vermont.

 

Sara Myers, one of the patients, has amyotrophic lateral sclerosis, known as Lou Gehrig’s disease. She uses a wheelchair. Her arms are paralyzed, her breathing and talking are compromised, and though she can still swallow, she has to be fed.

Ms. Myers, 60, did not know precisely when she might want help dying. “The line in the sand is constantly moving,” she said in an interview. But she added, “Knowing you have a choice means you don’t have to use it.”

Grieving in the Digital Age

“The social norms for loss and the Internet are clearly still evolving. But Gen Y-ers and millennials have begun projecting their own sensibilities onto rituals and discussions surrounding death. As befits the first generation of digital natives, they are starting blogs, YouTube series and Instagram feeds about grief, loss and even the macabre, bringing the conversation about bereavement and the deceased into a very public forum, sometimes with jarring results.”  NY Times, “An Online Generation Redefines Mourning” (March 14, 2014)

Modern Loss: : Modern Loss is a place to share the unspeakably taboo, unbelievably hilarious, and unexpectedly beautiful terrain of navigating your life after a death. Beginners welcome.

This project grew out of two friends’ separate experiences with sudden loss, and their struggle to find resources that weren’t too clinical, overtly religious, patronizing or, frankly, cheesy.

[This is just the beginning of a new phenomenon - we may add more information to this post periodically]

#Grief

#R.I.P.:Grieving My Dog Offline is a moving essay in the NY Times by a Yale student, Spencer Bokat-Lindell     

When I joined Facebook in 2007, my first profile picture was a photograph of Ginny and me lying next to each other on my living room floor.

To make an R.I.P. post about Ginny was to secure her a spot in the chronicle of my life, to recognize — in words and pictures — that she mattered.

For the rest of the world, it seemed, my grief wasn’t real until it could be screenshot.

Spencer's beautifully written pense gives insight into the mindset of some digital natives and opens up many, many avenues for thought. For me, at least, it was not to be skimmed.

Live, From the Nursing Home!

“Donald Hall, 86, a former poet laureate, probably captured the general mood when he wrote that nursing homes are “old-folks storage bins” and “for-profit-making expiration dormitories.” He wants to die in his farmhouse in New Hampshire.

But I think that sounds pretty lonely. I wouldn’t mind going into a nursing home and not coming out. In due time, thank you. I’m 64.”

Bert Stratton’s fine Op-Ed piece in the February 2, NY Times, “Live, From the Nursing Home” presents the flip-side of nursing homes.  Stratton is a member of a Klezmer group, the Yiddishe Cup, that entertains in nursing homes and other venues.

Stratton and his group at a nursing home

Caveat Mortalis

Let the die-er beware!

Professor Susan Dunn alerted us to an important article in the NY Times.

Ira Byock, one of the most influential hospice physicians in the country, has a thought-provoking Op-Ed piece in the January 31, 2015 issue of the NY Times. See:  “Dying Shouldn’t Be So Brutal.” Here are some excerpts:

… modern medicine has yet to make even one person immortal. Therefore, at some point, more treatment does not equal better care.

Our health care system is well honed to fight disease, but poorly designed to meet the basic safety needs of seriously ill patients and their families. We can do both. We must.

People who are approaching the end of life deserve the security of confident, skillful attention to their physical comfort, emotional well-being and sense of personal dignity. Their families deserve respect, communication and support. Exemplary health systems and healthy communities deliver all of this today. But they are few and far between.

Those of us who have been on a quest to transform care have been standing on a two-legged stool. We’ve demonstrated higher quality and lower costs. Missing is the visible, vocal citizen-consumer demand. Without it, large-scale change will not happen.

Hospice has become an industry with over 4,000 programs nationally, and the quality of care has become uneven. Still invaluable, hospice is no panacea.

It is time to write a Safe Dying Act.