Terminal Thoughts
Will Self, BBC Radio 4 (January 11, 2013)
UK Writer Will Self put together a very good BBC Radio essay on suicide and choosing to die. You can also find Self’s writings on end-of-life issues on his blog.
The radio essay is about 10 minutes long. It’s good. Give it a listen.
A Life Worth Ending
The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go.
Michael Wolff, New York Magazine (May 20, 2012)
The Suicide Plan
Frontline, WGBH Boston (November 2012)
If there is anything that the Death Reference Desk can safely predict for 2013, it is this: right to die and assisted dying cases will continue to both happen and capture public attention.
I was catching up on some 2012 reading during the holidays and finally read Michael Wolff’s article in New York Magazine about watching his mother die. It is an exceptionally well written piece and it truly captures the following biomedical paradox: preventing death at every turn often makes living unbearable– for both the individual and next-of-kin.
One of Wolff’s key points is that the current generation of aging adults watching their elderly parents decline will most certainly impact how these same aging adults want to die. He is absolutely correct, and I do not foresee that situation lessening to any degree.
It was after I read Wolff’s article that I finally got a chance to watch the Frontline documentary, The Suicide Plan. I never intended these back-to-back end-of-life activities but they absolutely complemented each other.
The Frontline documentary is worth watching, if for any reason, it is a sign of what is to come regarding individuals who want to end their lives because of terminal illness. Death Ref has covered these kinds of cases before and will continue to do so into the future. The key issue is less about the actual suicide and more about if another person assists in the death. What exactly constitutes “assisting” or “to assist” takes on all kinds of meanings. Frontline examines a number of assisted dying cases in just this way.
Both Wolff’s article and The Suicide Plan share an important argument: forcing terminally ill individuals to live when they want to die, requires both collective, national debates (i.e., as part of health care laws) and individual, personal conversations so that next-of-kin know (and can document) what kind of death a person wants.
Writing about these end-of-life items reminded me of Tony Nicklinson’s right to die case in the UK. Two good articles on Nicklinson here and here.
Death cannot ultimately be stopped. That’s the central dilemma confronted by both Frontline and Wolff (and the modern West writ large). Different kinds of researchers are certainly looking for a method to delay the aging process and dying by extension but those medical innovations (if actually desirable) are longer term possibilities.
Until that future arrives, many people will continue to choose death.
Watch The Suicide Plan on PBS. See more from FRONTLINE.
Care at the End of Life
The New York Times (November 24, 2012)
Really good editorial in today’s New York Times on end-of-life decision making. The editorial sums up the issues and makes a clear and cogent case as to why advanced planning directives make sense.
Here’s to hoping the changes to American health insurance coverage eventually cover end-of-life discussions between patients and doctors.
Go go Gray Lady!
Photo by Chalmers Butterfield
Over My Dead Body: Helping the Terminally Ill to Die, Once Taboo, is Gaining Acceptance
The Economist (October 20th, 2012)
Assisted Suicide Goes To Vote In Massachusetts
Sacha Pfeiffer, National Public Radio (October 25, 2012)
A quick pre-election 2012 Death Reference Desk style(!) post about a proposed Assisted Dying law in Massachusetts (state motto: By the sword we seek peace, but peace only under liberty.)
Should a terminally ill patient with less than six months to live have the right to a doctor’s assistance with committing suicide? Massachusetts voters will decide on Tuesday. If so, Massachusetts will become the third state to do so after Oregon and Washington.
The proposed Massachusetts law is very similar to Oregon’s Death with Dignity Act, which is widely regarded as a model assisted dying law.
The National Public Radio print article and radio piece are quite good on giving the backstory to the Massachusetts vote.
The New York Times ran an op-ed by writer Ben Mattlin last week that presents Mattlin’s concerns about the ballot vote: Suicide by Choice? Not So Fast.
Not much else to say, other than we at the Death Reference Desk will keep an eye on Tuesday’s vote and report any developments.
When Prolonging Death Seems Worse Than Death
Fresh Air with Terry Gross, NPR (October 09, 2012)
Many of us think of death as the worst possible outcome for a terminally ill patient, but Judith Schwarz disagrees.
Fresh Air’s Terry Gross ran a really fantastic interview this week with Judith Schwarz from Compassion & Choices. I can go on and on about why people should organize their End-of-Life directives and wishes, but Judith Schwarz spells it out from A-Z during the interview.
I strongly suggest listening to the full interview.
Tattoos Replacing Medical-Alert Bracelets for Those with Diabetes, Other Ailments
Aisling Swift, Scripps Howard News Service
Ladies and Gentlemen. Dearest Death Reference Desk Readers. Lovers of all things Death, Dying, and Dead Body.
We are witnessing an entirely new tattoo genre not only take flight but unquestionably cement itself into daily life. The Medical Alert Tattoo will not, cannot, oh my goodness no no no, go away!
In mid-June I wrote about recent developments in Medical Alert Tattooing: Do Not Resuscitate this Tattoo. Or the Person Attached to It.
This most recent article by Scripps Howard seems to have suspiciously borrowed some ideas from ye olde Death Reference Desk but it’s cool.
In a nutshell, people from all different kinds of backgrounds and age groups are having various medical condition alerts tattooed onto their bodies. So, for example, Type I or II Diabetes on the wrist. But many people are also having DO NOT RESUSCITATE tattooed onto their chest. We’ve been covering these DNR tattoos since Death Ref’s humble beginnings in 2009.
And now, it seems, the Do Not Resuscitate tattoos are a real phenomena.
As with any discussion on DNR (or other Medical Alert) tattoos, it’s important to state that medical staff are not necessarily going to follow the tattooed request. At least not the Do Not Resuscitate part.
But if you go for the ink, then no one can doubt your commitment. And that’s a political statement unto itself.
Special Note: Send the Death Reference Desk photos of your DNR or Medical Alert Tattoos. We want to start a photo collection.
Medical Alert Tattoo Replaces Bracelet on Type 1 Diabetic
Susan Kreimer, AARP Bulletin (June 6, 2012)
Medical Alert Tattoos. This is my new favorite tattooing term. It is the perfect blend of utility, pragmatism and bad ass ink.
We’ve been covering Memorial Tattoos for a while on Death Ref and you can see those posts here.
All credit goes to the AARP (formerly the American Association of Retired Persons) for publishing this short article on its members who choose different kinds of Medical Alert Tattoos. I already knew about the Do Not Resuscitate tattoos. In December 2008, an older Death with Dignity activist in New Zealand gained international attention when she got her own DNR tattoo. And in late 2011, an 81-year old British woman did the same thing.
The AARP discusses other MAT’s (a new tattooing acronym!), such as putting ‘Type-1 Diabetic’ on a person’s wrist.
I fully support the use of Medical Alert Tattoos. 100%. Indeed, these tattoos represent a form of older person activism that I really respect.
MAT’s also give the grandkids something to tell their friends about.
But any Medical Alert Tattoo, especially a Do Not Resuscitate tattoo, comes with a cautionary note: the status quo is still a piece of jewelry or a written order. The tattoos won’t necessarily register as a person’s officially and legally recognized choice. Paradoxically as that sounds.
The AARP also flags up this issue:
A word of caution: First responders aren’t trained to look for tattoos, and skin damage in accidents can obscure them, says Rebecca Dinan Schneider, spokeswoman for the National Association of Emergency Medical Technicians. “Medical alert jewelry is still the standard.”
One day this will change. And perhaps sooner than we might imagine.
R.I. governor vetoes ‘domestic partners’ burial bill
Katherine Gregg, The Providence Journal, (November 10, 2009)
This post first ran in November 2009. We encourage you to check out this post again, after President Obama’s recently announced support for same-sex marriage. Most people do no realize the legal obstacles same-sex partners often face when attempting to claim their partner’s corpse given the lack of either a marriage license or any statutory recognition of the relationship. This 2009 story from Rhode Island demonstrates all the issues. See our section on same-sex partners for more information. Two final notes. Donald Carcieri is no longer Rhode Island’s Governor and in January 2010 the RI Legislature overrode the Governor’s veto.
Under Recent Policy, Cook County Begins Donating Unclaimed Bodies after 2 Weeks
Cadavers that are left in morgue are given to medical research
Becky Schlikerman, William Lee and Ronnie Reese, Chicago Tribune (October 04, 2011)
Medical Examiner: Families Who Object to Body Donation Can Opt for Burial
Becky Schlikerman, Chicago Tribune (October 05, 2011)
There was a bit of a dead body tug-of-war this week in Chicago. According to an October 4 article in the Chicago Tribune, any dead body left unclaimed for two weeks in the Medical Examiner’s office will be handed over to the Illinois Anatomical Gift Association.
But wait, that’s not totally true.
According to an October 5 article in the Chicago Tribune, the Medical Examiner’s office will not donate any unclaimed body to the Anatomical Gift Association when the ME’s office knows that the next-of-kin cannot afford to have the dead body claimed and the next-of-kin want a burial.
Here is the bigger issue in this story: the overall costs for retrieving a body from a Medical Examiner’s office have become too expensive for many families.
We started covering this situation in 2009, when the Death Reference Desk launched. You can look over all those previous posts in the Death + the Economy section.
More and more county morgues across America are dealing with not only unclaimed dead bodies, but unclaimed dead bodies and families who know exactly where said dead body is located but can’t afford to do anything about it.
As a result, the Cook County story is hardly surprising.
Given the economic difficulties more and more American families face, this story represents not an anomaly but the future.
For more on Medical Examiners and their work, watch the fantastic Frontline documentary Post Mortem: Death Investigation in America
Death and Budgets
David Brooks, New York Times (July 15, 2011)
Much of the budget mess may stem from a deep cultural antipathy toward recognizing our own mortality.
The Quagmire: How American Medicine is Destroying Itself
Daniel Callahan and Sherwin B. Nuland, The New Republic (July 15, 2011)
Since the American political system (read: mostly the Republican party) seems hell bent on watching the federal government go into default I thought that I would revisit a recent column by David Brooks in the New York Times. Earlier in July, Brooks wrote about spending on End-of-Life care and Medicare. For those who don’t understand the idiosyncrasies of the American health care system, Medicare is the medical insurance all US citizens receive at age 65. It’s a good program. Both my parents use it.
One of the financial issues that Medicare faces is that more and more people are living to be older than before. Well into their 80s. The extension of age, by itself, isn’t an issue. Where the problems begin are with medical costs soaring in the last few months of life.
The second article at the top, by Daniel Callahan and Sherwin B. Nuland (which Brooks references), explains the costs this way:
In a 2006 article, Harvard economist David Cutler and colleagues wrote, “Analyses focused on spending and on the increase in life expectancy beginning at 65 years of age showed that the incremental cost of an additional year of life rose from $46,800 in the 1970s to $145,000 in the 1990s. … If this trend continues in the elderly, the cost-effectiveness of medical care will continue to decrease at older ages.” Emory professor Kenneth Thorpe and colleagues, summing up some Medicare data, note that “more than half of beneficiaries are treated for five or more chronic conditions each year.” Among the elderly, the struggle against disease has begun to look like the trench warfare of World War I: little real progress in taking enemy territory but enormous economic and human cost in trying to do so.
One of the most important ways to address these cost issues is by talking about death and dying. The crux of David Brooks article is that:
…we think the budget mess is a squabble between partisans in Washington. But in large measure it’s about our inability to face death and our willingness as a nation to spend whatever it takes to push it just slightly over the horizon.
I agree. Callahan and Nuland also make a similar argument. Indeed, the Death Reference Desk ran a piece in August 2009 on exactly this issue: America and End-of-Life Care: Death, Dying, and Mortality.
In fact, most of the death with dignity posts on Death Ref deal with the question of death acceptance in one way or another.
So, what’s to be done. Until the US budget issues are sorted, not much. The first step, which isn’t easy by any means, is telling people that death is ok. Especially at the end of life, when compassionate care will go a long ways towards extending quality of life instead of fixating on the quantity of days.
Callahan and Nulland make a quick reference to the “…war against death” in their essay.
They are absolutely correct. A war is being fought against death, particularly in America.
And we modern humans will lose that war. Every single time.
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.
I 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.
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.
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.