Tag: bioethics

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 + Technology Death + the Economy

Brain$…Brain$…Brain$

Donate Your Brain, Save a Buck
Gary Stix, Scientific American (January 4, 2011)
Hard times are making tissue donation more appealing

 

The Great Recession changed the way many people live—and its repercussions appear to be altering how some people choose to die. At least two prominent tissue banks have seen an increase in the number of individuals who are interested in donating their bodies to research in exchange for a break in funeral costs.

This is isn’t an entirely new story: people donating their postmortem brains for medical science research in order to save on funeral costs. Death Ref has featured regular stories on this very topic in the Death + the Economy section. In fact, at one point in Autumn 2009 the Body Farm at the University of Tennessee stopped accepting dead bodies because it had received too many unclaimed bodies from local morgues. The Body Farm studies dead body decomposition, as well as other postmortem issues, to assist forensic investigators. Unclaimed dead bodies are not that extraordinary but the 2009 situation was different. In many cases, next-of-kin knew that the body was at the county morgue but couldn’t afford to retrieve said corpse.

 

So the uptick in cadaveric brain donation for research, and by extension a cut in funeral expenses is hardly surprising.

Indeed, the brain donation example is one of the current ways that the human corpse is being redefined as a source of biovalue.

Not purely a commodity but something rather close to it.

More on this in the future.

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 + Biology Death + Technology Death Ethics

The (Death) Singularity is Near

Merely Human? That’s So Yesterday
Ashlee Vance, The New York Times (June 13, 2010)
The Singularity movement sees a time when human beings and machines will merge and overcome illness and perhaps death.

The tagline for this New York Times article is only partially correct. The Singularity movement and another group called the Transhumanists see death as a curable disease. Not perhaps. Not maybe. Absolutely fixable.

It’s interesting to see this (long) article pop-up since the proponents of the Singularity have been making their case for at least a decade now. If not longer. In a nutshell, the ‘Singularity’ will be a moment when humans and computer technology seamlessly coalesce, creating a whole new species of human. The entire end result is part of evolution according to Ray Kurzweil, the featured Singularian in the article.

I hieee-spectrum-technological-singularity-thumbave been intrigued for some time by the arguments Kurzweil and others make, especially when it comes to lifespan. A number of Singularity believers talk about 700 year lifespans and/or the outright elimination of death. I don’t ever discount these ideas out of hand. It is truly impossible to predict where human biology will end up fifty or one hundred years from now. So, I actually think that eliminating death or greatly expanding lifespan might be possible.

The question to really ask is: why would anyone want to live 700 years?

Then you have the problem of age. If a person lives to be 700 years old, is their body also that old? The only way extended lifespan works is by either greatly reducing aging OR transplanting a person’s entire consciousness (including memories) into a younger body.

These futuristic scenarios are sometimes referred to as the Death of Death.

Humans are a long ways from accomplishing any of these biological makeovers but one thing is certain: a lot of people will die trying.

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
Death + the Law Death Ethics

Terri Schiavo Five Years On

5 Years After Schiavo, Few Make End-Of-Life Plans
Matt Sedensky, Associated Press (March 30, 2010)

Five years ago today, Terri Schiavo died in Florida. March 31, 2005. I can’t believe that five years have already elapsed, in part because I was in the middle of finishing my Ph.D. dissertation on the dead body and also because the chapter I was working on dealt with Schiavo’s case. I had already decided to write on the right-to-die issues surrounding Terri Schiavo (in 2003, actually) but then events took a turn and the entirety of America watched her death unfold.

There is a lot more to say about Terri Schiavo and the court case(s) which surrounded her eventual death. No other human death has ever been so litigated in the American court system. In place of an indulgently long essay, here is an extremely useful Schiavo case timeline put together by the University of Miami Ethics Program.

And now, five years later, it’s hard to know how anything has really changed as it regards End-of-Life issues. What I do know is that the political battle which the Schiavo case caused has gotten less media attention but it remains a constant battle all the same.

More than anything what I think the Schiavo case demonstrated was the overwhelming sense amongst many Americans that they should be able to die as they wanted without governmental intervention. These sentiments made a mess of supposedly clear cut political ideologies, so much so that many conservatives and liberals found an issue upon which they agreed. Pro-life conservatives remained the most vocally opposed to letting Terri Schiavo die and that point has not changed.

This is death in the 21st century. And it isn’t going to get any politically simpler.

Categories
Death + the Law Death Ethics Suicide

2009 Oregon Death with Dignity Numbers

2009 Summary of Oregon’s Death with Dignity Act
The Oregon Public Health Division (March 2010)

Report Finds 36 Died Under Assisted Suicide Law
William Yardley, The New York Times (March 04, 2010)

Earlier this month, the state of Oregon published its annual report on who used the 1997 Death with Dignity Act. I have discussed the ins and outs of the Oregon law before but I want to highlight the following sections of the 2009 report:

• As in prior years, most participants were between 55 and 84 years of age (78.0%), white (98.3%), well-educated (48.3% had at least a baccalaureate degree), and had cancer (79.7%). Patients who died in 2009 were slightly older (median age 76 years) than in previous years (median age 70 years).

• Most patients died at home (98.3%); and most were enrolled in hospice care (91.5%) at time of death.

• In 2009, 98.7% of patients had some form of health care insurance. Compared to previous years, the number of patients who had private insurance (84.7%) was much greater than in previous years (66.8%), and the number of patients who had only Medicare or Medicaid insurance was much less (13.6% compared to 32.0%).

What is really important to note about the individuals using the Oregon law is their age, ethnicity, access to hospice care, and health insurance status. In a nutshell, the vast majority of the individuals were in the middle to upper middle social classes and hardly the lowest rung of Oregonians. This is important to point out because it demonstrates that this particular Assisted Dying law is not killing off the weak, the poor, and the uneducated.

In short, the law is not being abused.

Categories
Death + the Law Death Ethics Suicide

Living in America and Dying with Dignity in Europe

Frontline: The Suicide Tourist
PBS (March 02, 2010)

Assisted Suicide Guidelines: Family Can Still Face Prosecution
Sandra Laville, The Guardian (February 25, 2010)

Frontline, the documentary film unit for the Public Broadcasting Service in America, just premiered a really important new program. The film follows an American, Craig Ewert, as he decides to end his life at the Dignitas Clinic in Switzerland. What is unique about this storyline is that it focuses on an American going to Dignitas, which isn’t that common. To date, thirteen US citizens have ended their lives at Dignitas (as opposed to 135 Brits and 563 Germans).

The cultural, political and social issues surrounding Dignitas have been an ongoing topic in the United Kingdom, which makes the timing of Frontline’s documentary all the more uncanny. Last week, the Director of Public Prosecutions for the UK (Keir Starmer) published new guidelines for assisted suicide. Over the years, many people have wondered if “assisting” someone commit suicide included, say, going to Dignitas with the person. So much confusion has surrounded this UK law that short of actually changing it (which will eventually happen) the guidelines were published to help define whom the law can and cannot prosecute.

I have written extensively about the assisted dying debates in the UK on Death Ref (indeed, my first post was on an assisted dying case) and you can find a plethora of information in the Assisted Suicide section and the Death + the Law section.

As a final point of interest, the state of Oregon has published its 2008 Summary of Oregon’s Death with Dignity Act and you can see how people have used the law there to die.

In the end, the law will be changed in the UK and it will resemble Oregon’s law.

Categories
Death + the Law Death Ethics Suicide

Give Terry Pratchett the Freedom to Die…

Sir Terry Pratchett Calls for Euthanasia Tribunals
Maev Kennedy, The Guardian (February 02, 2010)

Terry Pratchett: My Case for a Euthanasia Tribunal
Terry Pratchett, The Guardian (February 02, 2010)

Last week, the British writer Sir Terry Pratchett (he of Discworld fame) catapulted the ongoing UK discussion on Assisted Dying back into the news. This is a persistent topic in the UK and I have written about it quite a bit on Death Ref here.

Terry Pratchett (who has been diagnosed with Alzheimer’s) is asking that a tribunal system be set up in England which then evaluates an individual’s request to die. The goal of setting up the tribunals is to make sure that any person making this request is of sound mind and not being coerced into the situation. Suicide has been legal in England since 1961 but helping another person commit suicide is against the law. So, a number of legal and political battles have dealt with the limits of what “assisting” another person means.

I have discussed these issues quite bit in the Death + The Law section.

In so many ways, this issue just keeps going and going and going. So much so, I’ve been collecting various articles for months because they appear daily and posting each one would be a full-time job.

Terry Pratchett’s request for a new UK system (or, at least, something for England… Wales and Scotland might be on their own) is another article for the group.

The problem, of course, is that all these issues and arguments are really interesting and important to discuss/think about/mull over.

But even I get Assisted Dying debate fatigue, and thinking about death is my job. The biggest dilemma, it seems to me, is that death is a human “problem” without terminus. At least in the twenty-first century West. England is certainly taking its time with any permanent changes to the law. It’s a slow process, to be sure, but it is a process. Terry Pratchett’s request will go a long ways in helping change UK law.

In the event you are a person doing research on Assisted Dying and the plethora of issues related to this topic, here are the articles that I have been recently collecting.

To wit:

The Guardian on the Dignitas clinic in Switzerland: ‘Death tourism’ leads Swiss to consider ban on assisted suicide

The Guardian on an elderly couple who committed suicide together: Couple wrote to BBC to tell of suicide decision

The Guardian on tour in the Dignitas clinic: Inside the Dignitas house

New York Times Magazine article on Brain Death and Organ Donation (which are related….): When Does Death Start?

New York Times on End of Life Care in California: Months to Live: Weighing Medical Costs of End-of-Life Care

New York Times on End of Life sedation: Months to Live: Hard Choice for a Comfortable Death: Sedation

BBC News on push in Scotland for a Terry Pratchett-like law: Most MSPs oppose end-of-life bill

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.