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.

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, of the New York Times, 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.

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.

Frontline: Facing Death
Miri Navasky and Karen O’Connor (November 23, 2010)
How far would you go to sustain the life of someone you love, or your own?

A Final Cocoon: Dying at Home
Joyce Wadler, The New York Times (November 11, 2010)
For some of the terminally ill, creating a space that embodies their deepest longings is part of saying goodbye

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.

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.

Here, too, are Death Reference Desk links which feature all of the material we have compiled on the various end of life issues:

Death with Dignity
Bioethics
Assisted Dying
Home Burial

How far would you go to sustain the life of someone you love, or your own? When the moment comes, and you’re confronted with the prospect of “pulling the plug,” do you know how you’ll respond?

In Facing Death, FRONTLINE gains extraordinary access to The Mount Sinai Medical Center, one of New York’s biggest hospitals, to take a closer measure of today’s complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice.

Watch the full episode. See more FRONTLINE.

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.

Independent Minds: Dr. Jack Kevorkian (Listen to the audio)

Heard an interesting public radio broadcast this evening. It’s a series titled “Independent Minds” and tonight’s profile featured Dr. Jack Kevorkian. The show illuminates, through interviews, audio clips and sound bites, the life of the controversial “Dr. Death” and attempts to separate and dissect the man and the myth. According to the show’s blurb:

For his clients, he is an angel of mercy; for his opponents, a doctor of death. But behind the fierce debates and spectacular trials is an accomplished inventor and artist; a man who never married but devoted his life to the care of others; and a passionate crusader who brought us to the forefront of a moral crossroad.

Join David D’Arcy to discover how a curious pathologist turned into an expert on death and challenged our ideas of life and personal self-determination.

Jack Kevorkian looks back on a controversial life, with observations from defense lawyer Geoffry Fieger and biographer Neal Nicol. Journalist Jack Lessenberry and NPR’s Don Gonyea takes us through the sensation trials of the Michigan court system. Actor Al Pacino, who portrays Kevorkian in the upcoming HBO film, takes us into the psyche of this complicated man.
Medical ethicist Dr. John Hardwig, end-of-life specialist Dr. Timothy Quill and disability advocate Marilyn Golden illuminate the complex facets of physician assisted suicide.

Check out trailers for the upcoming HBO film “You Don’t Know Jack”, starring Al Pacino as Kevorkian. Directed by Barry Levinson, it also stars Susan Sarandon, John Goodman and Brenda Vaccaro. I don’t have cable and it could be a while before it shows up on Netflix. So if anyone catches it, by all means let us know and share your thoughts!

No Assisted Suicide Charge for Son of Sir Edward Downes
BBC News (March 19, 2010)

My very first post for the Death Reference Desk occurred on July 15, 2009 and it discussed the deaths of Edward and Joan Downes. The Downes’ went to the Dignitas Clinic in Switzerland to die together, their’s is a common story in the UK. Indeed, the stories about UK residents going to the Dignitas clinic remain an almost weekly occurrence.

What is new about the Downes’ case is that the Director of Public Prosecutions in the UK (Keir Starmer) has decided to not charge either of the Downes’ children with assisting their parents to die. I have discussed at length how suicide in the UK is legal but assisting a person to die is not. The Death Ref section on the Death + The Law presents these cases. Today’s legal decision is also important because it is the first time that the new guidelines drawn up by Keir Starmer have found no public interest in prosecuting a family member who clearly acted on compassionate grounds.

I am including a news clip from last July about Joan and Edward Downes. It’s interesting to note what has and hasn’t changed since then.