Tag: death with dignity

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Death + the Law Death Ethics Grief + Mourning Suicide

Terry Pratchett and Assisted Dying in England

Terry Pratchett: Choosing to Die
BBC iPlayer (only available until 9:59PM Monday, June 20, 2011)

 

Terry Pratchett’s BBC Documentary Reopens Debate on Assisted Dying
Fantasy writer’s film shows final moments of a man with motor neurone disease at Dignitas clinic in Switzerland
Esther Addley, The Guardian (June 07, 2011)

 

Terry Pratchett Defends Choosing to Die Documentary from Critics
Critics round on writer and BBC for promoting assisted dying in film that included footage of man’s death at Dignitas clinic
Haroon Siddique, The Guardian (June 14, 2011)

 

TV Review: Terry Pratchett: Choosing to Die
When life is finally squeezed of all its juice, Terry Pratchett finds there’s tea on tap
Sam Wollaston, The Guardian (June 13, 2011)

I cried and cried towards the end of Terry Pratchett’s documentary on Assisted Dying. My tears arrived not at the end of the documentary, where Pratchett watches UK citizen Peter Smedley die in Switzerland at the Dignitas Clinic. Rather, I began to cry when the various individuals involved in this documentary started traveling to Switzerland. I can only explain my emotional response as tears of respect for Peter Smedley and his wife as he chose death over a physical life increasingly controlled by motor neurone disease.

The documentary, Terry Pratchett: Choosing to Die, was shown on BBC 2 Monday night and it created a week’s worth of commentary. Most of it predictably either for or against everything in the documentary.

Terry PratchettI do not know what to say any longer about the UK’s debate on Assisted Dying. Indeed, the Death Reference Desk has a number of pieces on Assisted Dying debates in both the UK and the United States. You can review all of those previous posts here. It’s worth noting, I think, that when Death Ref started in July 2009 some of the first posts were on the UK’s Assisted Dying debates.

 

Some pieces of that debate have changed but not significantly. The only anti-Assisted Dying argument that I will flag up as incorrect is the assertion that the deaths which people choose somehow diminish the value of hospice care. That is not true. Many many people choose hospice care at the End-of-Life and I wholeheartedly support that choice. But hospice care and End-of-Life care are different than choosing an Assisted Death. These things are related but they are not co-terminus. Advocates for both hospice care and assisted death often find themselves in televised debates but these same individuals are involved in entirely different kinds of conversations.

Most importantly, neither ‘side’ will ever agree. They just won’t. The best that anyone can work towards, I think, is a well regulated, extremely stringent law which both increases funding for hospice care and allows Assisted Dying. The model law is Oregon’s Death with Dignity Act.

Every year, the state of Oregon publishes an array of statistics which explain how the law was used the previous year. Here is the 2010 statistic that I think most people would benefit from knowing:

Most (96.9%) patients died at home; and most (92.6%) were enrolled in hospice care at time of death.

In fact, you can read all of the 2010 statistics here.

If you are in the UK, then you can still watch the documentary until Monday night for free on the BBC iPlayer.

If you are in the United States then I would suggest that you watch the Frontline documentary The Suicide Tourist. I discussed that documentary earlier this year and it is extremely good. It also follows a person to Dignitas who chooses to die.

Barring either of these options, I have embedded a short clip from Terry Pratchett’s documentary.

Rest assured, these conversations about Assisted Dying in the UK will continue.

Categories
Death + Technology Death + the Law Death Ethics Suicide

The Kevorkian Generation

Life After Kevorkian
He fought for the right to assisted suicide. Now what should we do with it?
William Saletan, Slate (June 3, 2011)

I am a member of the Kevorkian generation. Those of us in our mid-to-late thirties and onwards into our forties are usually called Generation X (for those who still remember the 1990s…) but I really think that we are Kevorkian’s kids.

Jack Kevorkian, who died last week, began assisting suicides in 1990. As soon as he started this work, debates began about the legality and ethics of assisted dying. I have distinct memories of these debates, which started during my high school years and carried on into college.

I and my peers came of age and entered adulthood surrounded by End-of-Life debates. Most people have mixed feelings about what Kevorkian did but at least he made people talk about death and dying. And those conversations have had an impact over the years.

Kevorkian-edit-021

So say what you will about Jack Kevorkian but he really contributed to a debate that informed an entire generation’s future. And as we all begin looking towards the End-of-Life for our own parents, I know that Jack Kevorkian’s influence will be felt.

The Slate article by William Saletan at the top is the best essay/article that I found after Kevorkian died.

Here is how Saletan concluded his piece and I wholeheartedly agreed with him point by point:

Kevorkian didn’t have the answers. But he raised the right questions. We can’t criticize his flaws, temper his ideas, and praise the hospice movement without acknowledging what he did. He forced an open conversation about the right to take your own life. Under what conditions, and within what limits, should that right be exercised? Even if it’s legal, is it moral? What do you do when a loved one wants to die? Kevorkian didn’t take those questions with him. He has left them to us.

The obituaries in both the Washington Post and the New York Times were also good.

What struck me most about Kevorkian’s death was how he died in the middle of a debate that he, alone, significantly pushed along.

This is also a debate that will most assuredly continue without him.

In mid-May, for example, large majorities of voters in Switzerland re-affirmed the right of individuals to choose an assisted death. The Swiss voters also (and more significantly) voted against proposals to ban citizens from other nations from using the Dignitas clinic, for example, to die.

Just this past week, the Personal Health columnist for the New York Times, Jane Brody, wrote a compelling column about New York Doctors who are not comfortable discussing End-of-Life decisions with their patients. Doctors in the state of New York are now required by law to discuss End-of-Life planning and some MD’s do not want to do it. The copy title for Brody’s column sums up the situation: Law on End-of-Life Care Rankles Doctors

And then last weekend, WNYC’s radio program On the Media ran a story on how the ‘Death Panels’ allegation used by opponents to President Obama’s health care law received press coverage which seemed to validate the absurdity of that claim.

I could go on and on with the examples. Indeed, a version of each of these stories has been previously covered by Meg, Kim, and myself since the Death Reference Desk began in 2009.

Here, then, is my point: Jack Kevorkian got an entire generation of young people, now in their mid-to-late thirties and soon to be in their late forties, thinking about dying, and in such a way that I can only hope it helps End-of-Life conversations with aging parents and elderly grandparents.

Jack Kevorkian didn’t inspire my generation, per se, but he played a much bigger role in our development than most people realize.

I will wrap everything up with a video obituary by the NewsHour on Public Television.

PBS NewsHour: Jack Kevorkian, Doctor who Brought Assisted Suicide to National Spotlight, Dies

Watch the full episode. See more PBS NewsHour.

Categories
Death + the Law Death Ethics

Suicide Tourism

The Suicide Tourist
Frontline (March 22, 2011)

On March 22, 2011, Frontline will re-broadcast its brilliant documentary The Suicide Tourist. This is an exceptionally well done documentary (even for Frontline) and it captures the end of one man’s life, Craig Ewert, with an unflinching gaze. I watched it last year. Unfortunately, the website version of the documentary is only available in America, which is too bad because everyone should watch this Frontline piece.

h_vid

The entire story is presented without sentimentality or moral judgement. It forthrightly and honestly follows Craig Ewert and his wife Mary as they travel to Dignitas in Switzerland. Many Death Reference Desk readers will have come across Dignitas either on Death Ref or in other situations. Dignitas was founded in 1998 by Ludwig Minelli and it remains one of the few places in the world that individuals can travel to, in order to end their life without hiding. Ludwig Minelli appears in the documentary and you can read a longer interview with him here.

The documentary speaks for itself, so I won’t drone on and on.

But watch it.

For those who are interested, the state of Oregon has now published its official 2010 Death with Dignity Act statistics. This is the annual report that Oregon files, as required by the DWDA, documenting how many individuals used the law and for what reasons.

These statistics are worth reading too.

Categories
Death + the Law Death Ethics

Discussing End-of-Life with Jane Brody

Personal Health: Keep Your Voice, Even at the End of Life
Jane E. Brody, The New York Times (January 18, 2011)

Here is a quick follow-on article to the recent post on End-of-Life discussions in the American medical system.

Jane Brody has been writing for some time about the importance of End-of-Life planning with a person’s doctor. Her most recent column is a response to the Obama administration’s back and forth on Medicare funding for End-of-Life discussions between patients and physicians. I wrote about that recent debacle (for lack of a better term) two weeks ago. Brody’s writings have appeared before on the Death Reference Desk. In August 2009 I wrote about her push for End-of-Life planning in the (then) proposed American health care reform bill. You read that here.

Brody’s commitment to this issue is partly personal and she has been extremely open about the recent, unexpected death of her husband. She makes the following case for End-of-Life planning in her most recent column:

For many more of us these days, the end does not come swiftly via a heart attack or fatal accident, but rather after weeks, months or years battling a chronic illness like cancer, congestive heart failure, emphysema or Alzheimer’s disease. When doctors do not know how you’d want to be treated if your heart stopped, or you were unable to breathe or eat and could not speak for yourself, they are likely (some would say obliged) to do everything in their power to try to keep you alive.

 

A year ago, my husband was given a diagnosis of Stage 4 cancer. As his designated health care proxy, I had agreed long before he became ill to abide by the instructions in his living will. If he was terminally ill and could not speak for himself, he wanted no extraordinary measures taken to try to keep him alive longer than nature intended.

 

Knowing this helped me and my family avoid agonizing decisions and discord. We were able to say meaningful goodbyes and spare him unnecessary physical and emotional distress in his final weeks of life.

Not much else to say, really.

Categories
Death + the Law Death Ethics

One Step Forward…Two Steps Back with End-Of-Life Discussions

Obama Returns to End-of-Life Plan That Caused Stir
Robert Pear, The New York Times (December 26, 2010)
Advance care planning, which touched off a political storm over “death panels,” will be covered under Medicare – a “quiet victory” that supporters have been urged not to crow about.

 

‘Death Panels’ Controversy: Is Obama Avoiding Congress?
The Obama administration is set to expand options for ‘end of life’ counseling for Medicare recipients. The White House says it’s practical. Sarah Palin says it’s akin to ‘death panels.’
Gail Russell Chaddock, The Christian Science Monitor (December 27, 2010)

 

‘Death Panels’ are Real — Brought on By Budget Pressures
Norman J. Ornstein, The Washington Post (December 31, 2010)
During the debate over health reform, Rep. Michele Bachmann (R-Minn.), Sarah Palin and others railed against the “death panels” that would result from the bill. Government bureaucrats, critics said, would decide who would die and when. The bill passed – and indeed there are death panels. But they do…

 

A Reversal for Medicare on Planning for Life’s End
Robert Pear, The New York Times (January 05, 2011)
The Obama administration will revise a Medicare regulation to delete references to end-of-life planning as part of the annual examinations covered under the new health care law, officials said.

 

End-of-Life Planning Dropped from Medicare Checkup Rules
Ricardo Alonso-Zaldivar, Associated Press (January 5, 2011)
Reversing a potentially controversial decision, the Obama administration will drop references to end-of-life counseling from the ground rules for Medicare’s new annual checkup, the White House said Wednesday.

While most people were enjoying the 2010 holiday season, a most peculiar series of American End-of-Life stories slid under the radar.

Right after Christmas, many news outlets reported that the American Medicare rules had been changed to allow Doctors and their patients to discuss End-of-Life planning as part of an annual medical exam. This was big news because the very idea of discussing End-of-Life issues almost derailed President Obama’s health care initiative. I wrote about that debacle in August 2009: America and End of Life Care: Death, Dying, and Mortality

Then, all of a sudden, there was a policy reversal and it looks like Medicare coverage won’t include End-of-Life discussions– as originally reported a few days earlier.

 

The whole situation is a little suspicious, and it suggests to me that if the post-Christmas stories had never run, then the End-of-Life rules might have remained.

Who knows.

I have compiled a group of the articles that I read through at the top of the page. They’re all good. Norm Ornstein’s piece is particularly smart.

More than anything, we’ll be back discussing Medicare funded End-of-Life issues in 2011. I guarantee it.

Categories
Death + the Economy Death + the Law Death Ethics Grief + Mourning

Frontline Documentary: Facing Death

Frontline: Facing Death
Miri Navasky and Karen O’Connor (November 23, 2010)

 

A Final Cocoon: Dying at Home
Joyce Wadler, New York Times (November 11, 2010)

Yet again, Frontline (the documentary film unit of America’s Public Broadcasting Service) delivers an unbelievably moving and intellectually engaged program. Frontline has won every major and minor documentary film award on the planet so it should come as no surprise that this new program Facing Death is so good.

Everyone needs to watch to this documentary. Everyone. Take the 55 minutes it requires and then watch it again.

Watch the full episode. See more FRONTLINE.

The documentary tackles one of the most pressing questions for any person with a terminal illness: when to stop heroic (potentially excessive) medical treatment and to then opt for palliative care in a hospice.

When Meg, Kim, and I started the Death Reference Desk we all agreed that End of Life issues would be fundamentally important to this entire project. I can honestly say that this Frontline documentary is one of the best programs that I have seen in a while on this very topic.

Critics of the American health care system (of which I am one) will lament the over medicalization of the patients in this film and I agree that the film really captures what aggressive, end of life medicalization becomes. The documentary also shows the medical staff and families involved in each case thinking through these bioethical quandaries.

What this film highlights, more than anything, is how impossibly difficult and heart wrenching all of these decisions become. None of this is ever simple or easy. My job is to think about death and dying all day, every day. I’m the son of a funeral director. I’ve watched my grandparents die.

These experiences are all valuable but they never fully prepare a person for that most difficult end of life decision: to die.

So watch this documentary and make your friends watch it. Then make sure that your end of life wishes are known to your next-of-kin and in writing.

The New York Times article at the top of the page is another side of the Frontline documentary, which is when people decide to stop the medical treatments and die at home. It’s a wonderful article about people choosing to die on their own terms in their own living spaces.

Categories
Death + the Law Death Ethics

When Medical Treatment is Worse than Death

Letting Go
What should medicine do when it can’t save your life?
Atul Gawande, The New Yorker (August 2, 2010)

 

Dr. Atul Gawande: Make End Of Life More Humane
Terry Gross, Fresh Air on WHHY (July 29, 2010)

A few weeks ago, Dr. Atul Gawande wrote a good piece on End of Life decision making for both patients and doctors. Gawande is a staff writer for the New Yorker and a surgeon at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute. He was also interviewed by Terry Gross on Fresh Air about the same topic. Both the essay and interview are quite good and I would suggest that everyone (regardless of age) take some time to mull over when you no longer want medical treatment for a terminal condition.

This is an important question to think about since death is assured at the end of life.

But how you die and what quality of life you have during that process is a much broader question.

I would encourage everyone to spend at least one hour discussing these issues with next of kin. That’s more time spent discussing death than most people do in a lifetime.

Categories
Death + the Law Death Ethics Suicide

Doctors Should Talk with Patients about Death

Doctors Should Talk To Patients About How They Want To Die, Says Regulator
James Meikle, The Guardian (May 20 2010)

The last month’s worth of news coverage in the UK has focused on nothing but the May elections so it was good to see an old fashioned death and dying story in the Guardian. My first take on these new guidelines, that doctors should speak with dying patients about, um, dying, was a smirk.

I do know, however, that frank and candid conversations about dying are not everyone’s forte, so I appreciate what the UK’s General Medical Council has done. As the Guardian reports,

While the guidance does not address assisted suicide, the GMC says it is still illegal and doctors have to remain within the law. However, it says there is “no absolute obligation to prolong life irrespective of the consequences for the patient, and irrespective of the patient’s views.”

This has been causing some real gnashing of teeth today. And it should. While it is absolutely true that the prolongation of life is never absolute, it’s still something which most doctors will do. Enter, then, patients and their end-of-life wishes. At a certain point during medical treatment, a patient may very well say “I’ve had enough and I want to stop all this.” Patients also expect (as well they should) that doctors will continue to treat them without giving up. The whole situation, then, can be a real bind for doctors and patients alike.

What these new guidelines want to do, it seems, is say to UK doctors that it’s ok when patients die, assuming the patient has a terminal condition and that the patient has accepted death. Negotiating the end of life is a complex task, especially when it comes to medical care, so I think that what the GMC has done is a good thing.

Here is a stripped down list of what the new guidelines entail:

• Doctors must give patients approaching the end of life the same quality of care as all other patients.

• Decisions must start from a presumption in favour of prolonging life.

• Doctors may recommend particular treatment options they believe best for patients, but must not pressurise them to accept advice.

• Patients who feel under pressure from families or carers to accept or refuse treatments must be helped to reach their own decisions.

• Doctors must not base treatment decisions involving significant risk to patients solely on constraints of money, staff or equipment.

• Doctors must respect “as far as possible” wishes of patients who do not want to know in detail about their condition or treatment.

• Doctors can withdraw from providing care if religious, moral or other personal beliefs amount to a conscientious objection to a patient’s decision to refuse treatment.

Paula-Westoby-DNR-TattooThe new guidelines also reminded me, for some odd reason, of a funny and poignant story from late 2008. A 79 year old New Zealand woman, Paula Westoby, had Do Not Resuscitate tattooed on her chest. She did this so that in the event she unexpectedly died, her wishes would be known.

This is what I call a real commitment to the End of Life.

Categories
Death + the Law Death Ethics

Rationing End-of-Life Care Debate

Debating the Ethics of Rationing End-of-Life Care
The NewsHour (April 26, 2010)

The NewsHour on PBS ran a short piece on a recent end-of-life care debate at the University of Virginia’s Miller Center of Public Affairs. A video from the debate, which was much longer and must be available somewhere on the interweb, is embedded below.

Susan Dentzer, editor-in-chief of Health Affairs and NewsHour commentator moderated.

Here are the panel members:

Ira Byock, a doctor and director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, NH
Arthur Caplan, director of the Center for Bioethics and a professor at the University of Pennsylvania
Ken Connor, chair of the Center for a Just Society and a lawyer in private practice
Marie Hilliard, director of bioethics and public policy at the National Catholic Bioethics Center and a registered nurse

Categories
cremation Death + the Economy Monuments + Memorials

Man Dying of Cancer Sells Ad Space on Urn

Springfield Man Selling Ad Space on His Urn
Laura Rillos, KVAL News

I have read many, many ridiculous death and dying stories over the years but this one is really amazing. The backstory itself isn’t ridiculous– it’s actually really sad and tragic.

On the one hand we’ve got an inspirational story about a guy with terminal cancer trying to make sure that his wife isn’t stuck with an expensive funeral bill. On the other hand, and this is the part of the story that you have to dig a little bit to find, Aaron Jamison is also using the money to cover his medical bills. The medical bills that he can’t afford to pay because his health insurance doesn’t cover the costs.

Think about this for a minute. A person with cancer needs to sell ad space on his urn to pay off his medical bills. This is what I meant by ridiculous. The whole situation is also slightly infuriating.

What Jamison is doing reminds me of a conceptual art piece by The Art Guys, entitled SUITS: The Clothes Make the Man, in which they wore identical suits covered in corporate logos for a year (1998-1999). The Art Guys’ point was how commodified everything, including fashion, had become and it was funny.

Selling ad space on your future urn is clever but it isn’t particularly funny. And now that it’s clear a portion of the money will cover medical costs, I think that the whole situation is terrible.

Aaron Jamison has a website which he uses to update his ad space plan. I suggest checking it out.

Finally, here is a short video piece by KVAL News about Jamison and his urn:

Categories
Death + the Law Death Ethics

Live Free and Die in Montana

Ruling by Montana Supreme Court Bolsters Physician-Assisted Suicide
by Kirk Johnson, New York Times (January 10, 2010)

Last September I posted an article on a Montana man who took his right-to-die case to the Montana State Supreme Court. The case involved 76-year old Robert Baxter who, sadly, died of leukemia before the case made it to the court. I say sadly because it’s clear that Mr. Baxter felt strongly about an individual’s inalienable right to both die on his or her own terms AND to seek out medical assistance with that death.

The Montana State Supreme Court mostly agreed with Mr. Baxter, saying that the current state law does enable doctors to assist with dying BUT the court declined to state that physician-assisted suicide is a Constitutional right.

Here are more articles on the case:
Washington Post: Montana 3rd state to allow doctor-assisted suicide

Christian Science Monitor: Montana becomes third state to legalize physician-assisted suicide

We will see more of these assisted dying cases in the years to come. This much I know.

Categories
Death + the Law Death Ethics Suicide

New Assisted Dying Guidelines in England

Director of Public Prosecutions Publishes Interim Policy on Prosecuting Assisted Suicide
The Crown Prosecution Service (September 23, 2009)

Last week in England, the Director of Public Prosecutions, Keir Starmer QC, released new guidelines on assisted dying. The goal of these new guidelines is to give family members a clearer understanding of what is acceptable before the law when assisting a loved one to die. As the law currently stands in England and Wales, assisting another person’s suicide is against the law. I discussed what caused these new guidelines here.

Here, then, are the guidelines (which are not laws) which will be used to evaluate whether or not compassion was the guiding principal behind the assistance:

The public interest factors against a prosecution include that:

  • The victim had a clear, settled and informed wish to commit suicide;
  • The victim indicated unequivocally to the suspect that he or she wished to commit suicide;
  • The victim asked personally on his or her own initiative for the assistance of the suspect;
  • The victim had a terminal illness or a severe and incurable physical disability or a severe degenerative physical condition from which there was no possibility of recovery;
  • The suspect was wholly motivated by compassion;
  • The suspect was the spouse, partner or a close relative or a close personal friend of the victim, within the context of a long-term and supportive relationship;
  • The actions of the suspect, although sufficient to come within the definition of the offence, were of only minor assistance or influence, or the assistance which the suspect provided was as a consequence of their usual lawful employment.

It was interesting to read the different press reactions to the guidelines.

Washington Post: Britain To Clarify Policy on Euthanasia
Associated Press: Charges Unlikely for Helping Suicide in England
The Guardian: New assisted suicide guidelines to give ‘clear advice’ to relatives
Lesley Close (in The Guardian): Thank you, Keir Starmer
New York Times: Guidelines in England for Assisted Suicide
BBC News: Assisted suicide law ‘clarified’
Death with Dignity in Oregon
All of these articles point to one central point: these new guidelines are only a step towards changing the entire assisted dying/suicide law in England and Wales. This was only the first step.

The most interesting response to the decision from Timothy Egan at the New York Times. I highly recommend reading his piece The Way We Die Now.