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.

Gawande uses the following historical examples in the New Yorker to draw open this very point:

For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to

strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses Grant’s oral cancer took a year to kill him; and James Madison was bedridden for two years before dying of “old age.” But, as the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn’t.

Death Ref has run several articles and related items on End of Life issues and 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.

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 have 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.

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

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.

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.

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) and a breakdown of all deaths by country can be found here.

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.

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

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’

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.

Montana Court to Rule on Assisted Suicide Case
Kirk Johnson, New York Times (September 01, 2009)

Since July I have been posting stories on Right-to-Die cases in England. Those posts involved Edward and Joan Downes (who traveled together to the Dignitas Clinic in Switzerland to die) and Debbie Purdy who successfully fought a campaign to have England’s Assisted Suicide law changed.

Now it is America’s turn and in the great state of Montana no less. State motto: Oro y Plata…which means Gold and Silver in Spanish. I know.

I will let the Billings Gazette take the lead:

Robert Baxter, a 76-year-old former truck driver from Billings, spent his last months fighting for the right to hasten his own death.

Baxter was the Montana face and only named terminally ill patient in a legal case that sought to legalize physician-assisted suicide; he wanted doctors to prescribe him medication that would bring about his death and end his struggle with chronic leukemia.

Baxter died Dec. 5, 2008, the same day that Helena District Judge Dorothy McCarter ruled that the Montana Constitution protected the right of terminal patients like him to obtain lethal prescriptions from physicians.

Here is the full August 29, 2009 article by Jennifer McKee at the Billings Gazette: State Appealing District Court Judge’s Ruling Favoring Assisted Suicide.

This is an interesting case to watch because it involves the Montana State Supreme Court ruling on whether or not Assisted Suicide is legal. The other two American states with Assisted Dying laws, Oregon and Washington State, both passed those laws by popular vote.

As always, I will keep my eyes on this case.

At the End, Offering Not a Cure but Comfort
Anemona Hartocollis, New York Times (August 19, 2009)

I started and re-started this post on American Health Care reform several times. To watch America’s current Health Care debate (such as it is…) makes me all the happier that I now live in the UK and am covered by the National Health Service. I have no problems with the NHS and I am glad that it exists.

One part of the NHS that impresses me most is its National End of Life Care Programme. The EOLC Programme’s mission statement provides a succinct mandate:

OUR AIM: To improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice.

What I think is fundamentally important about this NHS program is that it acknowledges the obvious: people die. Indeed, the program was explicitly created to embrace death so that the dying process is made as comfortable as possible for UK residents.

Herein lies one of the key reasons that I think the American Health Care reform debate is failing: Serious discussions about death, dying, and mortality have been jettisoned. What America needs more than ever, right now, is a National Conversation about dying because until that occurs, health care reform will continue to ignore that one part of human biology that we all share: Death.

And yet, paradoxically, it would seem that this kind of conversation is going on all the time.

The New York Times article at the top offers a lengthy and important discussion on End of Life Care in American hospitals. And NYTimes Health columnist Jane Brody offered this recent piece: End-of-Life Issues Need to Be Addressed.

President Obama made it clear in May that he was interested in a National Conversation about End of Life Care in a lengthy New York Times Magazine interview about the economy.

It is a long(ish) interview, so if you click here you can skip to the bit on Obama’s Grandmother and how her death informed his own thinking about End of Life decisions.

The problem, of course, is that people rarely talk to their family members about death. To bring home this point, the August 7, 2005 New York Times Magazine featured this article: Will We Ever Arrive at the Good Death?

Here is the key quote from that article:

As J. Donald Schumacher, president of the National Hospice and Palliative Care Organization, said last April to the Senate Committee on Health, Education, Labor and Pensions, ”Americans are more likely to talk to their children about safe sex and drugs than to their terminally ill parents about choices in care as they near life’s final stages.

Let me be clear that I think that President Obama is delving into an extremely urgent topic but, ironically, he is not the first modern American president to discuss end of life decision making. Oh no. Not by a long shot.

Some of the first presidential statements on death involved Ronald Reagan. In the early 1980′s, President Reagan received a series of reports on death and dying from some totally forgotten (but important) bioethics commissions:

• Defining Death: Medical, Legal and Ethical Issues in the Determination of Death (July 9, 1981)
• Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment Decisions (March 21, 1983)
• Indeed, these reports were part of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research

So, in a way, President Obama is attempting to carry out a project begun by President Reagan and is actually acting very Reaganesque. But I digress…

For me, the key reason President Obama has seen his health care debate derailed is that he dared to embrace death. Or, at least, to suggest that end of life care is something that needs to be discussed (on the local and national level) since individuals need to be clear in their own heads about how they want to die.

And since President Obama is involving himself in this debate, it means that the head of the nation is suddenly speaking out about death and dying. As a result, Obama is acknowledging a much more profound dilemma for modern America: the nation-state (as in America) usually ignores death at all costs.

At a certain point, the nation can do absolutely nothing about death and instead it focuses on mortality. Death is utterly ignored by the nation because it represents that one, final act that an individual can choose and that beyond a certain point-in-time no life will return. President Obama isn’t anywhere near making statements about who lives and who dies. But he is making it clear that death is inevitable. (I am unfairly paraphrasing Michel Foucault’s comments from his Society Must Be Defended lectures, p. 248).

That alone, I think, is causing some of the biggest problems.

All of this is to say, that American health care reform begins and ends with death. And until those discussions occur, America will continue with its current system.

If you’re interested in making sure that your own end of life requests are followed, then use this information offered by Jane Brody of the New York Times.

To help people make sound health care decisions and get the care they would want for themselves or their family members as life draws to a close, the National Institute on Aging has produced a comprehensive 68-page booklet, “End-of-Life: Helping With Comfort and Care.” Individual free copies can be obtained through the institute’s Web site, www.nia.nih.gov, or by calling 800-222-2225.