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 though 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.

The Suicide Tourist
Frontline (March 22, 2011)

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

Here is the official explainer for The Suicide Tourist:

“I am dying. … There is no sense in trying to deny that fact,” 59-year-old Craig Ewert says of his rapid deterioration just months after being diagnosed with ALS, a motor neuron disorder often referred to as Lou Gehrig’s disease.

“I’m not tired of living,” explains Ewert, a retired computer science professor. “I’m tired of the disease, but I’m not tired of living. And I still enjoy it enough that I’d like to continue. But the thing is that I really can’t.”

Directed by Academy Award-winning filmmaker John Zaritsky, The Suicide Tourist is a portrait of Ewert’s final days as the Chicago native pursues a physician-assisted suicide in the one place where it’s legal for foreigners to come to end their lives: Switzerland. With unique access to Dignitas, the Swiss nonprofit that has helped more than 1,000 people die since 1998, The Suicide Tourist follows Ewert as he debates the morality — and confronts the reality — of choosing to die before his disease further ravages his body, and he loses the option to die without unbearable suffering.

“At this point, I’ve got two choices,” Ewert reasons. “If I go through with it, I die, as I must at some point. If I don’t go through with it, my choice is essentially to suffer and to inflict suffering on my family and then die — possibly in a way that is considerably more stressful and painful than this way. So I’ve got death, and I’ve got suffering and death. You know, this makes a whole lot of sense to me.”

Assisted suicide is legal in Switzerland and several other countries, as well as in two U.S. states. But only Switzerland allows outsiders to come in to end their lives, leading to criticism about “suicide tourism.” The Swiss government has recently countered by imposing greater restrictions on the sorts of cases Swiss doctors can approve for suicide, largely limiting it to those in the late stages of terminal illness who feel their lives have become unbearable — the same standard that’s in place in Oregon and Washington state.

“There are people who will look at this and say: ‘No. Suicide is wrong. God has forbidden it. You cannot play God and take your own life.’” Craig Ewert anticipates some of the objections to the act he’s preparing to carry out. “But you know what? This ventilator is playing God. If I had lived without access to technology, chances are I would be dead now.”

As Ewert journeys through Switzerland and is wheeled into the Zurich apartment rented by Dignitas where he will drink the lethal sedative that will end his life, his wife, Mary, stands by his side. She is there to kiss him goodbye and wish him a “safe journey” as the medication takes hold and his eyes close for the final time. “In a sense, I lost Craig six months ago as he was,” Mary Ewert explains. “[These last months] we probably had more of one another than maybe in the past. … You know, there may have been some people who still think, well, I wouldn’t have done that, or he shouldn’t have done that, or something. But if they felt that way, they didn’t say anything to me about it. … I [still] feel his presence. …”

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

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

But watch it.

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

These statistics are worth reading too.

Debbie Purdy wins ‘significant legal victory’ on assisted suicide
Afua Hirsch, The Guardian (July 30, 2009)

An important turn today for UK Assisted Dying supporters (which is about 62% of the public…).

I will let The Guardian newspaper explain:

Debbie Purdy has won a significant legal victory in the House of Lords which lawyers are describing as a turning point for the law on assisted suicide.

Purdy, 46, from Bradford, West Yorkshire, who has primary progressive multiple sclerosis, succeeded in arguing that it is a breach of her human rights not to know whether her husband, Cuban jazz violinist Omar Puente, will be prosecuted if he accompanies her to Swiss clinic Dignitas where she wishes to die if her condition worsens.

The decision – the last ever by the law lords before they recommence work as justices of the new supreme court in October – went further than expected in Purdy’s favour, lawyers say.

Ordering the director of public prosecutions to issue a policy setting out when those in Puente’s position can expect to face prosecution, the court ruled that the current lack of clarity is a violation of the right to a private and family life.

The Purdy case is important and it will presumably force a change in UK law. As it currently stands, the UK’s 1961 Suicide Act decriminalizes suicide if you kill yourself. But any person whom:

aids, abets, counsels or procures the suicide of another, or an attempt by another to commit suicide, shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years.

What that aiding, abetting, counseling, and procuring entails is really ambiguous. It is all so unclear that UK Prosecutors have been declining to press charges against families that accompany, say, a loved one to die in the Dignitas Clinic.

For an extremely thorough history on the Assisted Dying debate in the UK, see the Guardian’s Assisted Suicide page.

I discussed much of this information a few weeks ago in a Death Reference Desk post about the recent deaths of Edward and Joan Downes.

Since the Downes’ deaths and that discussion, I came across the following article: ‘Romantic’ death may idealize suicide: critics. Maybe. But I’m not so convinced. If anything, what Edward and Joan Downes chose to do was die and to die together. It was an act of love, to be sure, but I’m not ready to call it romance.

They chose death over a biological life neither one of them wanted to live.

It is absolutely acceptable to choose death. And family members and/or friends who want to assist in that choice should be able to do so without fear of the law.

But LOOK OUT: Scotland might beat England to the punch. Scottish MPs are discussing a change to Scotland’s own assisted suicide laws.

And Scottish MP Margo MacDonald is leading a fierce charge.

With Help, Conductor and Wife Ended Lives
John F. Burns, New York Times (July 14, 2009)

For several years now, the UK press has reported on individuals and couples who travel to the Dignitas Clinic in Switzerland to end their lives. The most recent articles focus on Sir Edward Downes and his wife Joan. Joan Downes had terminal cancer and based upon statements by family members, Edward Downes (who did not suffer from any terminal disease) accompanied his wife in order to die with her. The Downes’ case, while tragic, is but one of many over the last year. Indeed, a similar situation occurred for another couple, Peter and Penelope Duff, in March 2009. The Duff’s were a well-to-do couple who lived in Bath, England (where I am faculty member in the Centre for Death and Society at the University of Bath). They were both suffering from terminal diseases and chose to end their lives at Dignitas.

What emerges from all of these cases is an often overlooked point and an issue that I think deserves more attention. The services offered at Dignitas are not free and each assisted death costs roughly $6,750 US dollars (approx. 4,100 British Pounds or 4,800 Euros). I mention the cost, which will most certainly strike many readers as crass, precisely because choosing to die in a less-than-violent manner is increasingly becoming an option only for the affluent. The debate in the UK over assisted suicide absolutely taps into the ongoing debates about social class and it is apparent that individuals with access to the necessary funds will make their way to Dignitas.

The Guardian newspaper maintains an extremely valuable news archive on Assisted Suicide and I would suggest that all Death Reference Desk readers spend some time looking through the articles.

Interestingly enough, as debates about changing the UK’s laws on assisted suicide go on and on, two American states are often used as models. Both Oregon and Washington State have Death with Dignity Act laws and the Oregon law is often cited (and used) as a leading example of a rigorously reviewed, fair law. The Oregon Death with Dignity Act has even withstood judicial review by the United States Supreme Court (Gonzales v. Oregon 2006)

The UK’s assisted dying debate will most certainly continue as will the numbers of people choosing to die at Dignitas. This is a topic that I will also bring to the Death Reference Desk on a regular basis.