Weighing the End of Life
Louise Aronson, New York Times (February 3, 2013)
How can we measure the quality of life, for our beloved pets or for older, infirm people?
The Old Gray Lady (also known as the New York Times) has been on quite a death-dying-end-of-life-dead body streak of late. In today’s Times, gerontologist Dr. Louise Aronson writes about determining when to put her elderly dog “to sleep” and how that decision-making process gave her pause when thinking about her own human patients.
I am frequently asked about the pet-human relation when it comes to choosing death. So, for example, if a family can choose to humanely end a pet’s life, then why can’t that same family go along with a loved one’s decision to die? The distinction(s) between non-human animals (particularly pets) and human beings are fairly well entrenched in the twenty-first century first world, so I do not see that changing soon.
That said, given the human impulse to make sure that pets do not suffer at the end of life and that a pet’s death is ‘a good death,’ the same philosophical, ethical, moral (dare I say), and practical principles will also be applied to human beings.
The application of these principles and questions will persist. How the law and the modern nation–state decides to view a citizen’s choice to die is a different story altogether.
The Bitter End
Radiolab short (January 15, 2013)
We turn to doctors to save our lives — to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.
This past week, the WNYC’s Radiolab ran a really good short on death, dying, and end-of-life choices. The show, The Bitter End, focused on the fascinating Johns Hopkins Precursors Study which asks Medical Doctors the following:
What are your preferences “…for treatment given a scenario of irreversible brain injury without terminal illness.”
The study has found time and time again that Medical Doctors do not want most (if any) medical treatments that would prolong their lives in this given situation. This finding stands in contrast to members of the general public who generally do want aggressive, life-prolonging treatments. The Radiolab reporters do a good job discussing these medical options with all kinds of people. You should also read the Radiolab blog post, which covers the Precursors Study.
The show flagged up, once again, an issue that the Death Reference Desk has been asking readers since it started: How much and what kind of end-of-life care you want?
This is a question, as most people can see, that only individuals can answer themselves and we here at Death Ref would encourage everyone to have this conversation with their next-of-kin. The Radiolab story captures precisely this kind of conversation between host Jad Abumrad and his Medical Doctor father.
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)
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.
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.
Facebook Users Can Add Organ Donor Status
Hayley Tsukayama, The Washington Post (May 01, 2012)
Facebook has added a unique feature to its social network: you can now tell the world — or just your family members — that you’re an organ donor.
Facebook in Organ Donation Push
James Gallagher, BBC News (May 01, 2012)
Three people die every day while waiting for a transplant, NHS says. NHS
Blood and Transplant said the partnership was an “exciting new way” to
encourage donation. Around 10000 people in the UK are on the waiting list
for an organ.
A quick post on a story from yesterday’s news that we at the Death Reference Desk expect many people caught. Facebook, and more specifically Mark Zuckerberg, announced that FB users can now use their Facebook accounts to register as Organ Donors. Here is how it works:
Go to your account and click on Life Event
Click on Health & Wellness
Click on Organ Donor and then enter whatever information you want about being a donor.
If you are in the United Kingdom and want to be an organ, tissue, and/or bone donor but are not yet on the NHS Donor Registry then the UK version of FB enables you to sign up.
I’m a registered organ donor in both America (on my Great State of Wisconsin drivers license) and the UK via the donor registry. I am also now an official Facebook organ donor(!) so you know it’s for real.
Two things to say about this move by Facebook. First off, it’s a good idea. The more that people discuss end of life decisions, such as organ donation, before a person is hooked up to a ventilator and unable to communicate is always helpful. Indeed, this new FB Life Event option is being trumpeted as a way for individuals to unequivocally demonstrate their commitment to postmortem organ donation. This is important so that next-of-kin do not block the use of said organs when the time comes for a decision.
Here is my second take. By making this move, Facebook is entering into a world of longer sustainability. For all of FB’s novelty (and sometimes silliness) this organ donation option means that users can now begin managing their end of life planning through Facebook. This is key. Countless other interweb companies have sprung up to manage these end of life issues, especially for deceased FB users, and Death Ref has covered those companies here. Yet Facebook itself hasn’t really ventured into the reality of death, or that its users die.
I fully expect that Facebook central will eventually add a funeral planning option for its account holders. Down the road.
And by attaching a person’s future/inevitable death to a Facebook account Mark Zuckerberg might just create that one internet app that everyone will want in order to plan a funeral.
Thus demonstrating Death Ref’s Rule #1 for any user based technology: Everybody eventually dies.
The Afterlife of Artificial Hips and Knees
Clark Boyd and Rob Hugh-Jones
PRI’s The World via BBC News (February 21, 2012)
The metal used in surgical implants can be melted down and recycled after people are cremated, and these days it often is.
Long time readers of the Death Reference Desk might remember this August 2009(!) post: Reduce – Reuse – Recycle – the Dead… I mention this particular post because the BBC News and PRI’s The World radio programme just did a piece on a Dutch company that recycles metal implants used in humans.
Here’s the rub: the metal implants are recycled after an individual is cremated.
In all honesty, there isn’t much new about this technology but since the process involves dead bodies it is always fascinating.
Indeed, if you would like a full rundown on everything Eco-Death then click away. We’ve been covering this topic since Death Ref took its first humble steps.
There isn’t a ton of money to be made in postmortem-human-implant-metal-recycling but that is probably ok.
And who knows where the implant metal recycling market will lead. I am keeping my eye on a Detroit, MI company, Implant Recycling, in the hopes that one day Motor City will rise again by cornering the market.
That particular Renaissance would be only too fitting.
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.
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.
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.
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.
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
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.
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.
A short post on a perennial topic for the Death Reference Desk: how the dead body is transformed into some kind of cash value. Rarely, if ever, does this postmortem value involve direct cash exchanges, mostly because the law frowns upon such things. No, these are situations where a dead body is handed over to an institution of some kind in exchange for compensation of some kind.
So, as this article discusses, families donate a body to the Indiana University Medical School and in exchange for their donation receive significantly reduced if not totally free funeral services. More often than not, this means that the cremation of the remains (post dismemberment, more or less, by medical students) is covered by the institution receiving the body.
Most American medical schools accept cadaver donations and gladly thank the next-of-kin with a non-cash gift of some kind. It’s true that even though money isn’t being exchanged there is still a quid pro quo involved…but not too many people that participate in any of this complain.
The bigger question to ask is this: What happens when medical schools, for example, start paying families with cold, hard cash for a dead body? The historians amongst you will already be thinking about Burke and Hare in Scotland, and that’s the historical example that usually scuttles these kinds of questions.
But I’m not so sure, given the economic conditions which many people currently face, that it won’t come to pass.
We’ve been adding story after story about these kinds of dead body transactions and you can see them all here: Death + the Economy.
Never say never…especially when dead bodies are involved.