I'm Having a Moment.

It's a great day! Not only am I on the radio tonight but a friend, Jeff Sharlet, has a new book out with an essay in it about yours truly and--this is big--I've been awarded a fellowship with USC's Annenberg School of Journalism, the Knight Grant for Reporting on Religion in American Public Life, to write about how American's die. Now if I could just get a date....

Details!

11 pm tonight on WBAI (99.5 FM) I'll be talking to the amazing Barbara Glickstein about how Americans die, denominational healthcare, and hospice. Here are the details--and a picture of me in WBAI's studio. Catch the second segment of this two-part series same time and place on August 25th.

A new book of essays by New York Times bestselling author Jeff Sharlet, a friend and my predecessor at The Revealer, is not only cover-to-cover full of brilliantly written essays about "faith and faithlessness," but one's even about me. Buy Sweet Heaven When I Die: Faith, Faithless, and the Country in Between here. Right now. Hurry up. Chop-chop.

And here's exciting news: I've been given a fellowship by USC's Annenberg School of Journalism, the Knight Grant for Reporting on Religion in American Public Life, to report about how American's die--prison, end of life and hospice care, denominational health care. Over the next nine months I'll be traveling to Montana, California, Arizona and Alabama to investigate how state and religious regulation effect health care choices by the dying. Here's more on the fellowship and the humbling field of other winners.

UK Decision Overrules Doctors' Request to Remove Life Support

A new decision in the UK courts has over-ridden doctors' recommendation that a "permanent vegetative state patient" be removed from life support. Hassan Rasouli, according to the wishes of his wife, Parichehr Salasel, is currently being kept alive by a ventilator and a feeding tube.

The doctors contend that they need permission to place a patient in palliative care but not to remove life support. The court ruled otherwise.

From the article at Globe & Mail:

“I think it will reopen the debate Canada-wide about how to effectively and efficiently adjudicate end-of-life disputes,” said Mark Handelman, a lawyer for the Euthanasia Prevention Coalition, an intervenor in the appeal. “...The public at large needs to learn a lesson from this. You have to have discussions about end-of-life care with your loved ones.”

The two doctors, Brian Cuthbertson and Gordon Rubenfeld, had argued that although they required consent to provide palliative care to Mr. Rasouli, they did not need it to withdraw life-sustaining measures that are no longer medically useful. The Ontario Court of Appeal on Wednesday upheld a lower court ruling that said that they do need consent, and that if they don’t get it, they must refer the case to a tribunal.

Ms. Salasel said she was pleased with the decision, adding: “I have my husband and he is still alive ... He’s getting better, absolutely. He is alive and with medication, with modern medicine, he will be better.”

The dilemma raised in the case is of society’s own making and increasingly an issue with Canada’s aging population: medical technology can now keep the sickest patients biologically alive, even though some doctors feel this does more harm than good. Distraught family members, meanwhile, often do not know their family member’s wishes, or refuse to give up hope, and choose every intervention available to sustain life.

I Told You So: Catholic Church Comes After Catholic Bioethicists

Cross-posted from The Revealer, a publication of The Center for Religion and Media, NYU.

I shouldn’t take any credit for predicting the actions of the most predictable institution on the globe, but I’ll take it anyway. I made the case at The Nation last week that the USCCB’s recent statement on aid in dying would lead to broader crack-downs on end of life rights, privacy, and awareness. I was right. According to a new report at Crisis Magazine and a press releasefrom the bishops today, they’ve targeted Catholic professors at four universities: Georgetown, Marquette, Santa Clara and Boston College. How did the bishops identify the academics they wanted to discredit? Writes Patrick J. Reilly at Crisis:

The professors’ efforts came to light during a Cardinal Newman Society investigation in 2005, following news reports of a legal brief filed by 55 bioethicists in opposition to “Terri’s Law,” a Florida measure that empowered Gov. Jeb Bush to ensure that the comatose Terri Schiavo received water and nutrition. As reported in “Teaching Euthanasia,” an exclusive report in the June 2005 issue of Crisis, multiple professors at Catholic universities had taken positions on end-of-life issues that seemed to conflict with Vatican teaching.

That’s right. Conscience aside, if you don’t exactly teach–or even in your personal life espouse– the Vatican line, you’re not Catholic. And it’s a seething mission among Catholic Church leadership to reign in not only Catholic bioethicists and professors but also Catholic hospitals. Only two years ago, the USCCB changed the Ethical and Religious Directives that are used to manage all 625 of their hospitals to limit a patient’s ability to be removed from artificial nutrition and hydration.

These actions are a direct response to the Terri Schiavo fiasco — which I’ve written about at Religion Dispatches and AltNet — and the Church’s desire to more directly guide health care policy in the US. The USCCB is still smarting over dissent of nuns and the Catholic Health Association during the recent health care debate. By rooting out dissenters, they hope to present a more unified voice on issues of the body.

Who’s their next target? It’s hard to say. While the church cleans out universities, hospitals, agencies and schools, “pro-Life” organizations prepare their on-the-ground election-time efforts and renewed pressure.

The Catholic Church well knows that even a statement addressing “assisted suicide” will serve as a political map for “pro-life” activists and their allies who have long seen “euthanasia” as one item on their platform. Think legislation governing advanced directives (already moot at Catholic hospitals if you’ve got a feeding tube, where a webwork of conscience clauses prevents them from complying with state and federal laws), hospice and palliative care regulations, inheritance laws for families of suicides, drug regulations….

I hope Church leadership is overreaching. While their fight against abortion is aided by the fact that women’s reproductive rights have been shamed and ghetto-ized since time began, seniors vote. And the US population resoundingly supported the Florida decision in 2005 to remove Terri Schiavo’s feeding tube.

Yet, the Church is particularly skilled at over-representing its influence and voting base. Again and again, health care rights for women have been bargained away with deference to the Church. Why not seniors’? Neither party seems willing to press for a meaningful Patients’ Bill of Rights or real health care reform. And the obstacles to nuanced conversation about death are myriad; they include an uninterested, misinformed, or easily-distracted press.

Whether you think aid in dying should be legal or not, whether you abide by Catholic doctrine or the light of the moon, you should still question the health of a democracy where a church’s laws dictate the actions of the pluralistic societal body.

Cross-posted from The Revealer, a publication of The Center for Religion and Media, NYU.

What the USCCB's New Focus on Aid in Dying Could Mean

I have a new piece at The Nation that you can read in its entirety here. Here's an excerpt, below. It was posted Wednesday night but I'm still waiting for Kevin Drum and Ezra Klein to call....

A focus on aid in dying should illuminate failures in end of life care, of which the US has many. In our current state of crisis—52 million people are uninsured; the United States spends twice as much on healthcare than other developed nations, with inferior results; the population is growing older; the dying are often subject to debilitating futile care in their last days—we can hardly afford ideological diversion. As with the issue of abortion, when the Catholic Church shines a spotlight, Americans get blinding orders, not illumination.

Even typically astute writers miss the point on end-of life care. While Ezra Klein, the Washington Post's healthcare expert, didn't endorse Catholic pundit Ross Douthat's contention that aid in dying should be illegal (though Klein failed to acknowledge that it is legal in three states), he bought the same "slippery slope" argument "pro-life" groups have used for years to oppose and restrict abortion. While Mother Jones's Kevin Drum refuted Douthat’s religious arguments and Klein’s sources and logic, he too failed to connect the conversation on assisted suicide to the larger crisis in end-of-life care. Neither took meaningful issue with the outsized role the Catholic Church—which operates one-fifth of all hospital beds in the United States according to their own guidelines—plays in this or the healthcare debate.

Moral Travesty, the Golden Rule, and How We Die

A clip from Alexander Hooke's recent article at the Baltimore Sun:

A kind and good-natured neighbor died last week. He always wanted to die in the peace and comforts of home, as his wife did 15 years ago. After a bad fall, an ambulance whisked him away. He wound up in a strange and sterile room, his body invaded by wires and tubes to the very end.

Will last year's health care overhaul — or any other proposal — be able to address this moral travesty?

***

In any event, thinkers and moralists since Socrates and Seneca have encouraged humans to learn the art of dying: to prepare to live their last days on their own terms. Encumbered by medical advances, financial drives and litigious fears, the lessons of the sages remain more elusive than ever, as family members of my very kind neighbor sadly realized.

Discussing the Atlas Study

Thaddeus Pope has posted the entire presentation from yesterday's panel at the New America Foundation at his site. Joanne Lynn, David Goodman and others discuss the Atlas Study which shows that those living in different regions around the country receive varying levels of end of life care. You can watch it here.

Ira Byock and Elliott Fisher Talk About Better EOL Care

From Thaddeus Pope, this link to a conversation on better end of life care.

Assisted Suicide Bill Defeated in South Australia

South Australia's Parliament defeated a bill that would have amended an existing law to allow assisted suicide. While it's estimated that 80% of voters favor the amendment, parliament rejected it. From The Sydney Morning Herald:

But Family First MLC Dennis Hood said the bill was "dangerous" and he was relieved it was defeated.

"Parliament has spoken loud and clear. Voluntary euthanasia for SA has been soundly defeated and should be moved off the agenda," he said.

"I am grateful that members listened to my concerns and made the decision on conscience to oppose the bill."

Mr Hood said the bill would have allowed euthanasia for patients that did not have a terminal illness, left psychological referral of patients as an option only and offered a "toothless" Voluntary Euthanasia Board to oversee the practice.

In September this year, Ms Key announced she would introduce the bill into parliament's lower house while Greens upper house MP Mark Parnell will put the identical bill to the Legislative Council.

Mr Parnell had similar legislation defeated in the upper house last year.

At the time, Ms Key said it was time for the SA parliament to catch up with public opinion.

"Over 80 per cent of Australians support the right of the terminally ill and others living in intolerable pain and suffering to seek the assistance of a doctor to end their own lives at a time and in the circumstances of their choosing," she said.

Mr Parnell said the bill required a patient to be examined by two doctors, including at least one specialist and oversight by a Voluntary euthanasia Board.

But influential Port Pirie Catholic bishop Gregory O'Kelly was among vocal opponents of the plan, blaming the recent rise of minor political parties for "pushing death.

"It is a sadness that the first moves around our nation under our new political arrangement seem to be a promotion of death and abuse of marriage," he said in September.

SUPPORT After All These Years

From GeriPal, an article on the legacy of the SUPPORT study:

November 2010 marks the 15th anniversary of the publication of the SUPPORT Project, the largest study of end of life care ever conducted. This study that shook the medical world. SUPPORT was an ambitious effort sponsored by the Robert Wood Johnson Foundation to improve the quality of care towards the end of life in patients with serious illness. The finding that this $29 million effort had absolutely no impact on improving the quality of end of life care was stunning.

The failure of the intervention to improve end of life care and the strikingly poor quality of end of life care documented by SUPPORT led to calls for action in the lay media and by advocates of better end of life care. SUPPORT remains the most influential study of end of life care ever published, and with over 1300 citations in the peer-reviewed literature, by far the most cited.

The SUPPORT intervention study randomized over 4000 patients hospital at 5 US hospitals to usual care or the SUPPORT intervention. Patients had one of 9 index conditions, such as sepsis with organ system failure, or metastatic lung cancer, and clinical characteristics suggesting a 50% or greater 6 month mortality. Physicians of patients in the intervention received received estimates of the probability of survival over six months, estimates of the outcomes of CPR, and estimates of the probability of severe functional disability at 2 months. The intervention also provided documentation of patient and family care preferences and provided access to a nurse interventionist to facilitate communication, including helping to carry out needed communication and facilitating meetings.

The effect of this intervention? NADA. Nothing. There was no impact on each of these key outcome measures:

• Earlier writing of DNR orders
• Physicians knowledge of their patients' preferences for CPR
• Number of days spent in an ICU before death
• Patient reports of moderate or severe pain
• Use of hospital resources

The SUPPORT project showed that the provision of prognostic information, and enhancing communication were insufficient in the 1995 care environment to improve outcomes at the end of life. The investigators suggested that "more forceful measures" may be needed. Several of the SUPPORT leaders noted that the efforts to improve end of life care were inhibited by a medical structure that made it very difficult to provide high quality end of life care and argued that improvements were unlikely without a major societal commitment to improve end of life care.

How We Die.

The new PBS Frontline series on end of life issues is now online. You can watch the full episode here.

How to Live, From the Dying.

I often feel that there's so much sentimentality surrounding the dying process that we tend to fall into the pastel-purple, air-brushed, saccharine-sweet sunset world of unreality, crowded with platitudes, get well cards, impending miracles, and hand pats that mean, "You're going to have to wrestle with those regrets yourself."

As a culture, perhaps we've come to the belief --or the crutch -- that patronizing tones are best for the near-dead. Partly because we're ignorant of what they so baldly face and partly because we're afraid of it.

PK points me today to an article that matches up with my hospice volunteer experience: What does the bucket list really look like from the cemetery path? What are the common regrets that we, hopefully far from that end, can pay heed to? If there are keys to this thing we call our own life, maybe these are some of them:

REGRETS OF THE DYING

For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn't work so hard.

This came from every male patient that I nursed. They missed their children's youth and their partner's companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I'd had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called 'comfort' of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

Framing Pain as Necessary.

It's been quiet around here -- and I have some good excuses -- but there's nothing like a prompt from a friend and the romanticized notions of pain in David Mills recent column for First Things, "Death Dignified by Christ" to snap me out of my pressing distractions.

Mills is the deputy editor of First Things, a historically Catholic site that has been flirting with keeping the big C on the down-low and bringing in various other voices to freshen up their demographics. The print magazine (which still exists and this month features the likes of Stanley Hauerwas, Ross Douthat and Dinesh D'Souza) was founded by the Anglican-turned-Catholic priest, Richard Neuhaus, who wrote often movingly about American life in the "public square." (Nathan Schneider pointed us to Alan Jacob's review of American Babylon, Neuhaus' last book before he died in 2009. The review slights Neuhaus for failing to move into the digital public square.)

First Things is also the blog-home of the scoundrel Wesley J. Smith (I'm taking license, maybe, but he does appear in a leather jacket in a publicity photo and pick a lot of fights), a vocal and long-time confuser of the facts regarding end of life care, assisted suicide, and health care. Smith's taken his "anti-euthanasia" show on the road to countries where bills have been considered and his views have had influence over U.S. presidents as well. I've spent a lot of time debunking Smith, when in my blogging swing, because he exemplifies what American media get so wrong about health care and end of life care. In other words, Smith works within a common frame of understanding that is grossly divorced from how health care really works.

But back to Mills. A writer and editor, Mills has headed a number of prominent and award-winning Episcopal and Catholic journals. He's also a member of the National Organization of Episcopalians for Life (NOEL), now called Anglicans for Life. It's a group with what first appears to be a singular, stated focus: to end legal abortion. Yet, such a crusade -- and I mean to imply that AoL, like most "pro-life" groups are religious in nature -- rests on a moral opinion of human sexuality, not on actual human behavior. I point this out because Mills' recent article for First Things too has a singular stated focus, one which is more difficult to frame than the issue of abortion. (In the prevalent and successful narrative against abortion babies are cute, even if they're hypothetical; it's hard to get many segments of the American public upset about the slighted reproductive rights of women; suffering poor health or an unwanted pregnancy is "acceptable" punishment for immoral acts, like sex.) Mills is out to emasculate the Death with Dignity movement.

In "Death Dignified by Christ," Mills glorifies suffering as a redemptive, saving force. His essay is really just a reiteration of the old theological answer to the even older question, "Why does God make us suffer?" To punish us for our "immoral" acts is the answer for abortion (or to teach us the beauty of babies and discipline). But that doesn't fly so well with today's baby boomers who are facing modern and painful ways of dying. They've got less of a grip on their need for punishment. (Which is why Death with Dignity is currently legal in three states in the U.S. -- Oregon, Washington, and Montana.) So the religious/moral arguments that have been so successful in the erosion of women's reproductive rights don't fully work when used to address end of life suffering.

Beyond Mills' assertion that we should all be subject to his interpretation of God's laws, he resorts to Smith's common approach: degradation of those who want to end their suffering. In writing about his dying father, Mills says he "took it like a man," as if dated concepts of gender and masculinity are enough to convince us that suffering is a show of strength. Those who consider assisted suicide are, he writes, "declar[ing] yourself God," and choosing an end "without fuss or bother or pain." (Try that one on Robert Baxter.) Dying means to suffer, he tells us -- and suffer is loosely defined in the article as inclusive of being alone, losing our faculties and being "dressed by cheerful young women the age of your granddaughter."

By perpetuating the idea that suffering is strength, Mills would like to make heroes of those who approach death in pain. Forget Cicely Saunders' concept that pain is relative and varied. (Saunders, a devout Catholic, founded the modern hospice in the late sixties/early seventies, in part to combat the "euthanasia" movement.)

Death and pain are irrevocably tied in Mills' assertion. But they don't have to be so in our hospice facilities and hospitals. The medical world possesses methods of controlling pain. And if that fails, we all own this body that carries us around; who's to say we shouldn't escape death when we're ready -- regardless of the place we plan to visit afterwards? Glorifying suffering or asserting that pain is a necessary part of dying ignores the medical advances of the past 50 years (for patients' good and bad) and perpetuates inhumane and unnecessary ideas about rights at the end of life. We have the right to die peacefully, without pain, regardless of what we believe. Mills and others are successful in perpetuating the myth that pain makes us better, redeems our immoral behavior, and is inexplicably tied to the dying process. But why are they? Why do all but 20% of our seniors die in the hospital when 80% wish to die at home? Why are discussions of patients' desires at the end of life seldom had? Why is it shameful to accept declining functionality and frailty? To suffer pain without seeking medical treatment?

Take God out of the question and you get, "Why do we suffer?" I would say we suffer pain at the end of life because we wrongly think we have to. For the lucky of us, our diligent hospice nurse is working her heart out on our appropriate medication dosage.

(h/t Carla Axtman)

The Implosion Cometh, OR, It's Only Fear-Mongering if it Contradicts Your Ideology.

The fight for quality health care has been framed by conservatives (with time-honed fear of government programs and ideological adherence to "pro-life" but futile care policies) as an either/or financial and "sanctity of life" apocalypse. Either we as a society recognize "human exceptionalism," a term bandied by the likes of Wesley J. Smith and meant to codify a "pro- life" ideology that means, particularly regarding end of life care, irrational expenditure for treatments that do nothing to cure or extend life or -- and here's the implosion scenario used -- we start killing the vulnerable.

What a tragic debacle that will cause suffering beyond comprehension. And this is is the milieu in which legalizing assisted suicide is being seriously contemplated! Unbelievable.

It's a black-and-white view of a much more complicated challenge faced by westernized countries the world over, one that does little to problem-solve loss of patient autonomy, the impossible rising cost of health care, discrimination in health care delivery, lack of corporate regulation, nor the very necessary discussion of death and palliative care that desperately needs to take place. But, as you'll notice in the comments to WJS's fear-mongering post and as I mentioned at the beginning, there are political and ideological objectives that are met by fanning fear among the elderly, disabled, and poor. Smith and others are willing to call recognition of a crisis fear-mongering when it contradicts their objectives.

Regarding climate change, another challenge with political and ideological framing but one that pitted "alarmists" against climate change deniers, Ross Douthat writes today at the New York Times:

The Seventies were a great decade for apocalyptic enthusiasms, and none was more potent than the fear that human population growth had outstripped the earth's carrying capacity. According to a chorus of credentialed alarmists, the world was entering an age of sweeping famines, crippling energy shortages, and looming civilizational collapse.

It was not lost on conservatives that this analysis led inexorably to left-wing policy prescriptions -- a government-run energy sector at home, and population control for the teeming masses overseas.

Social conservatives and libertarians, the two wings of the American right, found common ground resisting these prescriptions.

I quote Douthat, though I dislike his politics greatly and find his own prescription for climate change -- do nothing and see what happens -- to be terribly irresponsible, because he makes an important point.

Social conservatives and libertarians are denying on-the-ground facts regarding delivery of health care (and climate change) not because they don't think we need to solve the problem but because the only viable solutions belong to the opposing political party.

An interesting bit about this post: I came to the Smith hand-wringing post via a fundraising email from the activist organization founded by Terri Schiavo's family, dedicated to legislating that patients like Schiavo not be removed from life support.

Removal from Dialysis or Murder?

An interview at Renal and Urology News with Dr. Lewis M. Cohen, author of the new book No Good Deed: A Story of Medicine, Murder, Accusations, and the Debate over How We Die. The book recounts the case of two nurses who were charged for murder for removing a patient from dialysis. Here's a clip:

During a series of interviews, they recounted a number of remarkable stories of inspiring deaths that followed stopping dialysis. Those were not surprising. What was surprising was this particular case, which had resulted in criminal accusations. To put it mildly, I was shocked and horrified. I became determined to understand what had happened, and in the process discovered that there were a number of similar—and sometimes much more catastrophic—cases around the country where nurses or physicians stopped life-support treatments, provided analgesics to relieve suffering, and then found themselves accused and sometimes even convicted of murder.

Dying at Home in the UK

Britain's Health Secretary, Andrew Lansley, has announced that more people should be allowed to die at home, a phrasing that gets at the challenges of end of life care, from The Telegraph:

Speaking at the International Carers Conference in Leeds, he said: “Having a terminal illness is a very distressing time for individuals and their families. People should be able to choose where they are cared for – most would choose to be cared for at home, surrounded by their friends and family – and be certain that the care they receive will be of the highest quality.

“This review will look at how we better deploy the money we spend on palliative care – so those in need are better supported. We intend that whatever care patients choose will meet their needs and wishes.”

In the U.S., as I've written before, about 80% wish to die at home but only about 20% do. I've been interested to see how attention to end of life care changes when the issue of assisted suicide (in all it's nomenclature) is discussed. Britain has been in the midst of a public discussion of end of life care, assisted suicide and the legal challenges of such laws thanks to the Purdy case last summer. I wonder if this elevated level of awareness there has had any effect on Lansley and the proposed study?

Reporting that Distorts EOL Care

Ah, it's The Economist's turn; shoddy reporting that does the "he said, she said" deal but reveals little about how we die. Where are the statistics on how many nurses and doctors do issue fatal doses of morphine to end suffering at the end of life? Why make Howard Martin a pariah - without a discussion of why he and other doctors DO give overdoses?? Where's the discussion of futile care and over-treatment, the prolonging of death that takes place in every modern hospital the world over because of pursuit of ineffective treatments? The statistics on how many elders have medical proxies, end of life care plans, or living wills? Or advocacy for these? And the doctors and nurses who would rather overdose in silence than face the warped and hypocritical wrath of a sentimental public? We live in an age where society, the media, and the medical profession pretend that more and more treatment is the best way to approach death, despite the extraordinary pain that such treatments bring to elder and terminal patients.

From the negligent article that is so typical of our preference for sentimental and factless reporting about death:

THE argument over the ethics of assisting the terminally ill to die is sharpening, as two recent cases concentrate minds. On June 25th Keir Starmer, the director of public prosecutions, said that Michael Irwin and Alan Cutkelvin Rees would not be prosecuted for helping Raymond Cutkelvin, who had pancreatic cancer, die at a Swiss clinic in 2007. Prosecuting would not be in the public interest, he held: Mr Rees was motivated by compassion; Mr Irwin, a former doctor, was an elderly man; and neither had profited from the death.

In another, very different, case, the General Medical Council struck Howard Martin off the medical register on June 18th. Mr Martin admitted to hastening the death of a number of patients and said that he had not always sought consent from sufferers or their families before doing so. In 2005 he was acquitted of murdering three patients through overdoses of morphine. The police may reopen that investigation.

At issue is whether it should be legal to help a sufferer who wants to take his own life, or whether this might put pressure on the sick, the disabled and the elderly to call it quits early. In February the Crown Prosecution Service (CPS) issued new guidelines on when someone might expect to be prosecuted for assisting suicide. Debbie Purdy, who has multiple sclerosis, had asked the courts to clarify whether her husband would be prosecuted if the couple travelled to Dignitas, a clinic in Switzerland, to end her life. Mr Starmer stressed that the guidelines did not decriminalise assisting someone to die or “open the door to euthanasia”, and that no case was absolutely prosecution-proof. But all sides welcomed the new stress on a suspect’s motivation.

Rational Rationing.

Bioethicist Jacob Appel, writing at HuffPo, notes the recent Bentacourt case in New Jersey of futile care and distinguishes between rational rationing and irrational rationing. He writes:

The facts underlying the case are indisputably tragic. In 2008, Betancourt underwent cancer surgery at Trinitas Regional Medical Center, a Roman Catholic hospital in Elizabeth, and later suffered an irreversible anoxic brain injury when his breathing tube became displaced. By 2009, the seventy-two year old was unconscious, kept alive by a ventilator, artificial kidneys and tube feeds. Infected ulcers covered his body. Unfortunately, the patient left no advance directive stating what he wanted done under such circumstances. The team of physicians treating Betancourt determined that he was in a vegetative state and, reportedly in consultation with the hospital's ethics committee, sought to forgo extraordinary forms of therapy, such as dialysis and cardiopulmonary resuscitation. Betancourt's daughter, Jacqueline, who rejected the medical team's view that providing such treatment to her father was merely prolonging the dying process, then obtained a court order for additional care. While the hospital appealed on the grounds that continued interventions were both medically inappropriate and unethical, Betancourt died. However, as the questions raised by this tragedy are likely to arise again in other end-of-life cases, New Jersey's Superior Court is expected to issue an opinion in Betancourt v. Trinitas that will clarify whether physicians and hospitals may refrain from providing costly care that they believe to be unconscionable.

For much more on the case and the potential ramifications of the court's decision, read details at Thaddeus Pope's site Medical Futility Blog. Pope was a witness in the trial. He also discusses Appel's article at HuffPo.

Appel takes a lot of grief from the likes of Wesley J. Smith for his "practical" approach to allocation of medical resources. In the post Appel writes (and I quote a lot because I think it is important, particularly his clarification of how the definition of death has changed, something I write about often):

There is a fundamental difference, however, between asking to be permitted to keep a vegetative relative on costly machinery, and asking the taxpayers or society as a whole to pay for such machinery. Money spent on vegetative patients is money not spent on preventive care, such as flu shots and mammograms. Each night in an ICU bed for such patients is a night that another patient with a genuine prognosis for recovery is denied such high-end care. Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support. I suspect that the vast majority of people, not knowing in advance whether they will either end up in a permanently vegetative state or be diagnosed with cancer, would prefer that any resources that would be spent on PVS care be reallocated to cancer research--or some similar enterprise that has the potential to help human beings who might actually recover.

The stark reality is that modern end-of-life ethics are on a collision course with themselves. As technology enables people to remain "alive" on ever more complex equipment, such as bilateral ventricular assist devices and extra-corporeal membrane oxygenation machines, the line between life and death blurs. Soon enough, a patient may be able to remain on such apparatuses for many months, long after meaningful brain function has ceased, until his skin and tissue begins to putrefy. When does such an existence transcend the barrier between living and dead?

Those who favor funding unlimited care for PVS patients tend to view the difference between these cases and other severe illnesses as a matter of degree. As a result, they worry about a slippery slope that might ultimately result in our pulling the plug on the cognitively intact but disabled. Yet PVS patients should instead be viewed as different in kind from other medical cases. In essence, the Betancourt court can decide that physicians and taxpayers only have a duty to provide unlimited care to patients who have a meaningful chance of returning to consciousness. Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others. Rather than shying away from this outcome, progressive bioethicists should have the courage to acknowledge and to embrace this proposition.

Finally, A Patients' Bill of Rights?

Today Obama announced what he's calling a patients' bill of rights. I've yet to see the "bill" but suspect that it regulates insurers' practices. From everything I'm reading, the details are still shaking out, but I doubt that it will become the bill of rights I've been advocating for: one that guarantees non-discriminatory health care delivery to all citizens regardless of age, race, sex, gender, faith or ability. I doubt it will include strong informed consent laws and mandatory referral laws that prevent providers from refusing services to patients. Perhaps the administration is waiting to tackle the "conscience clauses," most notably Bush's law instituted in December before he left office, and currently on pause since the election.

More news:

http://www.chron.com/disp/story.mpl/ap/top/all/7073988.html

http://content.usatoday.com/communities/theoval/post/2010/06/obama-turns-back-to-health-care/1

http://www.iowapolitics.com/index.iml?Article=200706

Reigning In The Cost of Futile Care.

Stella Fitzgibbons writes at the LA Times that the costs of futile care are going to be difficult to reign in. And I post the entire article below because the LA Times site is so full of medical insurance, AARP, and drug ads that it's hard to see the story for the promo. (Of course, this comes from fantastic Thaddeus Pope over at Medical Futility Blog.)

As a hospital-based doctor, I am one of the people responsible for the country's ever-escalating cost of healthcare. And I can tell you that the new healthcare plan will do nothing to restrain me.

There is enormous pressure on healthcare providers to continue practicing the most expensive medicine in the world. To resist that pressure, we need some help from policymakers.

Consider the case of a man I'll call Mr. A. At the age of 80, he is admitted to intensive care after a huge stroke. He also has pneumonia and kidney failure. He is too sick to tell us his views on aggressive care at the end of life, but his family is happy to fill the void. They insist we use every tool at our disposal to prolong his life, despite brain scans making it clear that he will never again be able to walk, talk or feed himself. The total bill for the last month of life? Many tens of thousands of dollars.

Or contemplate Mrs. B's case. She arrives at the ER with shortness of breath. Tests find iron deficiency anemia. The most likely cause, based on her history, is an ulcer — probably a benign one. We can perform an upper GI X-ray, do a blood test for a bacterial infection that commonly causes ulcers and send her home with pills. Or we can opt for more precise, and far more expensive, tests in which a specialist examines her innards with a fiber-optic scope and takes tissue samples. In rare cases, this procedure catches something an X-ray can't. When presented with the options, the patient chooses the scope. The result? She spends an unnecessary night in the hospital, has $1,000 or more of tests and goes home with the same diagnosis and the same medicines she would have if we'd done the far less expensive X-ray.

And that's not all. Once patients like Mrs. B are diagnosed, they often insist on being prescribed the ulcer medicine they saw last week on a TV ad, which is likely to be a new (and expensive) medication rather than one of the reliable drugs that are older and cheaper.

Both of these patients are composites of people we see at the hospital every day, and they demonstrate why it will be so hard to rein in healthcare spending. Americans have spent the last several decades hearing that all you have to do is be a little assertive to get top-of-the-line treatment. They have had prescription coverage through their health insurance for so long that they have trouble understanding why I won't prescribe a convenient Z-Pack of antibiotics (at a cost of $60 or so) instead of amoxicillin, which they have to remember to take three times a day (at a cost of about $4). Websites and magazines tell them that if the doctors say a condition is untreatable, they should shop around for a specialist, or bully the doctor into trying an experimental treatment and the insurance company into paying for it.

Healthcare rationing is already in place, of course, for uninsured people. If they qualify for care in public systems like the one in Houston's Harris County, where I live, it takes weeks to get through the administrative process and longer still to get an appointment at a clinic. And if a patient needs a specialist, that will mean another wait, which can lead to life-threatening delays in diagnosis and treatment. Medicaid (and soon Medicare) patients also face rationing of a sort, in that they often can't find doctors willing to treat them.

Paradoxically, even as costs are rising, hospitals and doctors are finding their work to be less and less profitable. Even the best insurance plan won't cover the entire cost of Mr. A's hospital stay these days, and Mrs. B's HMO may deny coverage for even a one-night hospital stay. Doctors who accept patients admitted from the ER are often working for free or paid a small subsidy by the hospital, and those who see uninsured or Medicaid patients in their offices are unlikely to recoup enough to cover their overhead for the visits.

Some efforts are being made to control costs. Hospitals keep an eye on "unnecessary days," and medical personnel are becoming experts on "cost-effective care." But the savings of such efforts are insignificant compared with what we spend on futile care at the end of life, or expensive tests and treatments that lead to better outcomes in only a tiny fraction of cases.

Even though President Obama's healthcare plan will expand the number of people with insurance, it won't change the reality that we cannot afford to give every patient and family all they want, or to provide four-star medicine when the three-star version is almost as likely to succeed. Decreasing payments for services will only force hospitals to close and doctors to stop accepting new patients.

Unless someone comes up with a rational program for deciding healthcare priorities, American healthcare is going to become too expensive for any but the rich — and for members of Congress. Don't we deserve better than that?

Idaho and Patients' Rights

The two great opening sentences of Maureen Dolan's CDAPress article on a new Idaho Law:

A new law goes into effect July 1 giving Idaho health care workers the right to refuse to provide end-of-life care they find morally objectionable.

Some fear the legislation places the conscience of a caregiver ahead of a dying person's rights.

I'm constantly amazed at how the media report down what they call the center line on end of life rights. Now, it's actually questionable whether a doctor making your health care decisions for you - despite your advanced directive, living will or other statements regarding informed consent for care - is a violation of your rights or not.

I think two factors feed into this odd kind of reporting; lack of knowledge of the dying process and reporters working to make end of life care stories contentious.

Of course, a doctor or nurse denying a patient legal, medically proven services is a violation of rights. But because religion's last bastion is the death bed, few are willing to call it what it is: a patronizingly old fashioned provider refusal law that pushes paternalistic ideas of faith and medicine on elder patients as a way to deny them autonomy. Just ask women. They've been up against such discriminatory laws for 4 decades. Let's see what baby boomers do with them.