otherspoon

Regrets Too Few To Mention

2012-01-22T07:50:00.000-08:00

I went to my prom. I got a good education. I married a good man and divorced him at the right time, in a way that allows us to still be friends. I work at keeping the good friends and letting the bad ones fade away. I have a job I enjoy. I've gone out and seen a lot of the rest of the world. I take risks only after counting the effects they will have on me and those around me. All in all, I believe I pass the "if I were hit by a bus tomorrow, I'll die happy" test. What more could a person want from the years stacking up around them? And yet, at the prime age of 43, I think increasingly about regrets.

Because I'm a hospice volunteer, I spend a lot of time with old people. Dying people. Beyond the discomfort, beyond the anger at terminal illnesses, the greatest cause of emotional upset is often what you and I would call regrets. The estranged daughter, the books never read--or written, the years, now collapsed by hindsight, spent working when they could have been spent with friends or family. The chances not taken, the patterns not broken, the cities never seen, the old feuds left festering. Again and again I hear patients remark with wonder and shock that the years have passed them by too quickly. "In my head I'm still 35," one 80 year old friend told me. "How did I get to be this old?" a patient has asked. "Be careful," she said, "the years go by too quickly to count."

An article by Bronnie Ware, a palliative care worker, has received much attention over the past year. In it she lists the five primary regrets she has heard from her dying patients. They are:

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

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

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

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

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

It would be easy for me or anyone to shrug off these five wishes. They are vague--what is happiness?--and a little too close to the saccharine platitudes our society substitutes for good, hard thinking. Why worry about it--the regrets slated for the end of my life, or even dying itself--now, when I'm busy living? But I can't shrug them off because, like Ms. Ware, I too hear them said under my patients' breath, see them in the excitement of a dying person when the phone rings, read them in the subtext of comments like, "Of course my daughter can't come visit, she's far too busy with the children."

In an exchange this week with a friend who is caught in a malaise he can't quite diagnose, I noted the above list. He read it and quickly brushed it off as "follow yr heart" stuff. It's all well and good to regret the possible, he noted, but what about regretting the impossible? My reply was that many things we come to regret appear possible only in hindsight.

Years ago, when I lived in California and desperately wanted to write, a lover told me that the most important and difficult thing in life was to be happy. He was a beautiful man from Israel, married, a surfboard maker in the process of trying to earn his keep by making instruments. He was a craftsman, spiritual in what we call that California way, conscientious and thoughtful. I didn't believe him because I was too enamored by all the tales of disturbed and unhappy writers, sacrificing for their craft, dying unhappy and often unpublished. I thought unhappiness and bitter sacrifice were the hallmark of genius, of greatness. Now I know that, in his own way, he was onto something.

Lest those of you who know me suspect I'm going soft, have no fear. There's nothing more difficult, braver or more dangerous than living as you wish. It is in that struggle to live without regrets that justice is grounded. It is in making a good life that we define our rights--to be a woman doctor in the 50s or a tranny flight attendant or a black president or a friend good enough to admit when we're wrong. These happinesses, great or small, are not eccentricities, on the whole, but a daily assertion that we are going to do what we want, as much as is possible, for ourselves and the people around us--because if we don't we will regret it. It is because we don't respect ourselves, our desires, our years, our urges to do something else, our want to be happy, that results in regret.

Joan Didion writes in "On Self-Respect," an essay in Slouching Toward Bethlehem, "Most of our platitudes notwithstanding, self-deception remains the most difficult deception. The tricks that work on others count for nothing in that very well-lit back alley where one keeps assignations with oneself: no winning smiles will do her, no prettily drawn lists of good intentions." That list is the one that my dying patients are reading and rereading their last days. They are tallying up the bad decisions, the wrongs, the complacency, the fears obeyed. Didion continues:

To live without self-respect is to lie awake some night, beyond the reach of warm milk, phenobarbital, and the sleeping hand on the coverlet, counting up the sins of commission and omission, the trusts betrayed, the promises subtly broken, the gifts irrevocably wasted through sloth or cowardice or carelessness. However long we postpone it we eventually lie down alone in that notoriously uncomfortable bed, the one we make ourselves. Whether or not we sleep in it depends, of course, on whether we respect ourselves.

So, perhaps here then is the trick to dying without spending your last years and months consumed by regret in an uncomfortable bed, the trick to not waking up one day to find that your years have run by without notice, to not getting caught in routine and obligation. It is: to remember that the dying comes. For all of us. It's not a tragedy to be avoided, it is a certainty. Easier to face it with "toughness, a kind of moral nerve" which results from owning up to mistakes and braving the ramifications of our decisions.

I have to go now. I have a book to write.

Aid in Dying in Massachusetts

2011-12-13T08:54:00.000-08:00

It's no surprise that the Massachusetts Medical Society has affirmed it's stance on opposition to aid in dying. The Dignity 2012 campaign which has put aid in dying on the ballot next year is receiving a lot of attention and I expect the MMS was under pressure to reassert their position. The Boston Globe article is interesting for one point, however: the announcement was made without MMS polling it's members. In other words, the decision was made by leadership. I suspect that, like most medical societies in the US, leaders feel that coming out in support of aid in dying is still too nuanced a position and one that continues to undermine faith in doctors if publicly stated. Yet, the double effect, a practice that allows a doctor to give a patient a lethal dose of medicine so long as the intent is to keep the patient comfortable, even if it kills them, is still upheld across the country. Between aid in dying and the double effect, one has to ask, where is the bright line? At public perception, apparently.

The National Catholic Register also weighs in this week on Dignity 2012, outlining for readers what the Catholic Church is doing in that state to combat legalization (and neglecting to count Montana as one of the states where it is legal). Most of the article's quotes from Catholic leadership echo last June's announcement by the Catholic Church of a new campaign to fight aid in dying. A clip from the article:

In Masses geared to area legal and medical professionals, Cardinal Seán O’Malley has taken the opportunity to speak out forcefully against the initiative.
“We hope that the citizens of the commonwealth will not be seduced by the language, ‘dignity, mercy, compassion,’ which are used to disguise the sheer brutality of helping someone to kill themselves,” said the archbishop of Boston at the Red Mass on Sept. 18.
Stephen Crawford, communications director for Dignity 2012, the supporting group of the initiative, thinks the “people of Massachusetts are ready for the discussion on this issue.”
Janet Benestad, chairwoman of a Boston archdiocesan steering committee on physician-assisted suicide, said that a group of about 12 people, some with connections to Harvard Medical School and the New England Journal of Medicine, were able to get an initiative petition certified by the Massachusetts attorney general on Sept. 7.
Supporters of the petition then had to gather 68,911 signatures for it to be considered by the state Legislature. Brian McNiff, a spokesman for the Secretary of the Commonwealth of Massachusetts, said as the Register went to press Dec. 8 that the group had filed over 80,000 signatures but that his office still had to count and verify them.
Peter McNulty of the Massachusetts Catholic Conference said that “the bishops are very much concerned with this issue,” and a steering committee has been formed to recommend a course of action. The conference is the public-policy arm of the state’s bishops and represents the four dioceses in the commonwealth.

Canada Revisits Aid in Dying

2011-12-05T17:28:00.000-08:00

A wheelchair bound Canadian grandmother, Gloria Taylor, who has Lou Gherig's disease has asked the British Columbia Supreme Court to allow her doctors to give her a lethal dose of medication so that she can end her life. The decision is expected next year and lawyers predict that the case will be taken to the Canadian Supreme Court. This rather standard article from the AP has a paragraph that caught my attention:

In the latest case now unfolding, Taylor's lead lawyer, civil liberties defender Joe Arvay, argued to the court that assisted suicides were taking place despite the ban, a practice he likened to the illegal "back-alley abortions" of the past.

I've been urging women's rights advocates in the US to pay closer attention to the opposition to certain medical services and treatments. Often those who oppose abortion--"pro-life" and "family and marriage" groups and the Catholic Church, among others--also oppose the legalization of aid in dying. Shame often functions to keep proponents of such services quiet. And yet, abortion and aid in dying have taken place for as long as humans have existed. How they are provided and regulated is perhaps the paramount question for society; they are issues that test our humanity and require us to reckon with a new definition of life and death created by modern medicine.

Hospitals and Disability in Elders

2011-11-26T12:21:00.000-08:00

Hospitals are dangerous for elders. If you care for a hospitalized elder and can read one article that will "change for the better how you care for them," GeriPal recommends this one (From the JAMA, in which activities of daily living are given the acronym ADLs!):

In older patients, acute medical illness that requires hospitalization is a sentinel event that often precipitates disability. This results in the subsequent inability to live independently and complete basic activities of daily living (ADLs). This hospitalization-associated disability occurs in approximately one-third of patients older than 70 years of age and may be triggered even when the illness that necessitated the hospitalization is successfully treated.

Hospice on Film

2011-11-26T11:31:00.000-08:00

The Idaho Press-Tribune highlights two films about hospice programs, "Serving Life," and "Except for Six." The first is about the hospice program at Angola prison in Louisiana. The second follows a character and his family through the dying process. You can watch the trailer for "Serving Life" here, at the Oprah Winfrey Network, it's producer. More on "Except for Six" can be found here.

What Do You Know About End of Life, Doctor?

2011-11-26T10:27:00.000-08:00

Thaddeus Pope highlights questions 26 and 27 from a recent Regence Foundation poll, "Living Well at the End of Life." Pope keeps a blog about futile care (that you should all read) so the two questions he highlights, below, specifically address removal from curative treatment.

A few other interesting points come out in the poll as well: most patients are ill informed about end of life and palliative care options; patients and their families are more concerned with cost than doctors; and if I'm reading the poll correctly, doctors in Oregon and Washington, states where a state-wide discussion about end of life options has been had -- Death with Dignity laws are in place in both -- agree that quality of life is more important than length of life. Then there's the District of Columbia. 96% of doctors there agreed (compared to 71% nationally, and 85% and 83% in Oregon and Washington respectively).

Another series of questions worth looking at are 29, 30 and 31. Practitioners admit that their education and residencies gave them less exposure to end of life issues than did their practice. Read the entire poll findings here.

26. From your experience, how often do patients and their families reject your recommendation to discontinue curative treatment in favor of palliative care?

66% Regularly / Occasionally

34% Infrequently / Never

27. What reasons have patients and their families given for rejecting your recommendation to discontinue curative treatment in favor of palliative care?

75% Unwillingness to accept that curative treatment was ineffective

74% Disagreement from family members about discontinuing curative treatment

63% Preference for more aggressive curative treatment options

42% Religious hesitations or objections

37% Disagreement with the diagnosis or wanted a second opinion

1% Other

The Week in EOL News

2011-10-01T05:31:00.000-07:00

In a recent article at The Catholic Sentinel, Richard Doerflinger, Deputy Director for the Secretariat for Pro-Life Activities continues to develop the church's argument against aid in dying by conflating it with assisted suicide and by citing disregard for the ill or disabled as causes for aid in dying's increasing support and legalization. (I interviewed Doerflinger about the church's new initiative to fight legalization of aid in dying in June.) From the Sentinel article:

The Oregon law carves out a class of citizens — those diagnosed with six months or less to live — and suspends statutes that protect them from getting help to kill themselves. For Doerflinger, it's like coming across two people about to jump off a bridge, one who has a diagnosis of six months or less to live. For one, society tries persuasion, mental health treatment and emergency intervention. But to the one who has a serious physical illness, Doerflinger explained, "We say, 'Jump. Can I give you a push?'"

The issue, he said, is that our culture is uncomfortable with sickness and disability. "We don't see inherent dignity in people when thy have these conditions."

The San Francisco Examiner has been covering the story of Hong Ri Wu, who is accused of killing two of his shop-owner rivals. Wu was determined unsound for trial and then he refused to eat. Local police officials, at the direction of Sheriff Hennessey took him to the hospital but the hospital refuses to put him on a feeding tube. The Examiner writes:

Hennessey insists his department has a mandate to provide for the safety of each inmate. But hospital officials have balked at force-feeding Wu, although spokeswoman Rachael Kagan declined to discuss Wu’s case specifically, citing patient privacy laws.
“As a hospital, we respect individual self-determination and include our patients in their health care decisions,” Kagan said in a statement. “When a patient is also in custody, that patient loses some rights, but not all of them.”

***

Meanwhile, thousands of California inmates have resumed a hunger strike that is meant to draw attention to their inhumane conditions in that state's facilities. Prison officials are threatening "discipline."

***

"Baby Joseph" Maraachli die this week. The child, born in Canada with a terminal illness, became a "pro-life" cause when the hospital there refused the family's request for a tracheotomy. The hospital deemed the operation futile. So Father Frank Pavone of Priests for Life and other Catholic and "pro-life" groups including the Terri Schiavo Life & Hope Network, raised the funds to have the child airlifted to the US. The first US hospital they sought care from refused, but a Catholic hospital took the child in and completed the procedure. After a brief stay in the US, Priests for Life then shipped the child and his family back to Canada. Pavone said the child and his family had, "fulfilled a mission from God." The case has caused some interesting fault lines to emerge that involve denominational health care, issues of futile care, the treatment of pediatric terminal patients, and, not least, within the Catholic Church regarding the finances of Priest for Life. Father Pavone has since been called back to his home diocese; the causes remain murky.

"Pro-life" groups have said that their objective was to allow the child to die at home, a statement that echoes both home hospice and aid in dying advocates, perhaps signaling broader acceptance that a home death is preferable to a hospital death.

***

The death of Troy Davis was not the act of a faceless state against a potentially innocent man. Amsterdam News writes about the company that was contracted to oversee the execution, the same company that is contracted to provide health care services to inmates in prisons. For-profit companies are increasingly called in to provide inmates with care in prison settings, in part because the incarceration industry is just that, an industry, with states spending big money to manage their prison populations and high-powered lobbyists pressuring local law makers to "protect" their state citizens by being strong on crime. As well, particularly in the South, prison populations are growing exponentially older and require more health care services. But the challenges for CorrectHealth and other such health care companies operating in prisons is that they are increasingly under fire for unethical and illegal activities, including the use of illegally-acquired execution drugs. Drugs like sodium thiopental, which is part of a three drug series used to execute inmates. It's no longer in easy supply because Abbot Laboratories, its sole US manufacturer, has stopped making the drug. For a while states were purchasing sodium thiopental from the UK but drug officials there have cracked down on it's international export. This scarcity has forced US prisons to beg and barter with each other or to find illegal sources. Writes the Amsterdam:

It was Dr. Carlo Musso, who owns CorrectHealth, a for-profit company that provides what they call "cost effective" health care to prisoners, who managed the process. He does this work under the umbrella of another company he owns, Rainbow Medical Associates, which, according to the American Civil Liberties Union, is contracted by the Georgia Department of Corrections to do its executions.
While some may defend Rainbow Medical Associates as capitalism in action, Musso might find himself in a heap of trouble-of the legal kind-that could do more damage than the backlash from the Davis execution.
Earlier this year, the Southern Center for Human Rights filed a complaint against CorrectHealth, accusing them of illegally importing and distributing sodium thiopental, the drug they use in carrying out the execution of convicted felons.

***

The Atlantic this week wrote about a new documentary that examines the "unique subculture of hospice volunteers as they contemplate their own philosophies of life and death." (h/t Scott Korb)

***

The Guardian reports on a case in the UK that was brought by the family of a minimally conscious patient to remove her feeding tube. The family of "M" held that she would not want to be kept alive with a feeding tube, but the court did not decide in their favor, stating that her level of consciousness allowed that she may feel discomfort if removed. From the article:

The case raises deep existential and moral questions – questions that law is not well equipped to answer. The Mental Capacity Act does at least, provide a framework for discussion but it offers no guidance on how each factor should be weighted. For the family, the key factor was that M's continued existence was not what she would have wanted. For Mr Justice Baker, the decisive factor was the preservation of life.

***

As with abortion, the language used to discuss end of life and patients' rights continues to be muddied up, with each side claiming to stand for the patient. Wesley J. Smith's recent scree against futile care is telling. He's taken up the rubric of patients' rights, claiming that a patient who wants just one more chance at beating cancer should be able to make that decision for themselves, regardless of limited health care resources, the doctor's recommendations, or that of the hospitals where the patients are treated. I've said very much the same thing myself, here, repeatedly. But what Smith and others fail to miss -- and this is a conservative blind spot that we see exploited often -- systems and culture affect how patient's view their health care choices. Those concerned with futile care recognize that a culture of "do everything" is responsible for the increase of treatments and services that won't save lives and often prolong death. Those of us who stand for patient's rights -- a person's right to choose what their best path of treatment may be -- must be careful to recognize that cultural influences and not just the individual's ideas about their fate can play a role in the patient's choice. If you want to stand for choice in all cases, abortion advocates have long known, you have to stand for even the choices you don't agree with.

Don't miss Smith's knock of the Veteran's Administration, the largest provider of health care in the US and conservative's primary example, after medicare, of how the government mismanages health care.

Patient's rights is a term I use often but independence and individual rights are only half the conversation. We're also members of a community and creators of a culture that establishes values even as we espouse them. Simple calls for patients' rights (or women's rights, etc.) are only part of the challenge those who wish to address the vagaries of our health care system (or it's absence) must consider.

Smith, who claims to be a bioethicist, often blames greed for what he says is a pervasive "culture of death." With many issues like pentagon spending, incarceration, and social services, I've said pretty much the same thing. But what Smith misses is the responsibility that society has to the patient to prepare them for death and to do no unjust harm. Futile care often stymies both. And it's preventing us from talking about death and health care in practical, dignified ways.

***

Read Catholics for Choice's recent open letter to Kathleen Sebelius, posted at Politico, here. The group is fighting The Catholic Church's heavy lobbying for less restrictive conscience laws in the new insurance coverage guidelines. The Church claims that allowing insurance programs to cover contraception is an offense to their religious conscience and that clauses in the new regulations are far too narrow for their health care providers to work according to their faith. In other words, Catholics for Choice wishes to remind the government that the influential priests who have mobilized against the regulations do not speak for the US's Catholic community but for the Vatican. Or rather, their male dictatorial selves.

***

Funny how long it took the Wall Street Journal to pick up this study about the public's views of those in persistent vegetative states.

I Hardly Recognize my Neighborhood

2011-09-25T06:00:00.000-07:00

My typically quiet and quirky neighborhood is transformed this morning by 30,000 do-gooders in running shorts, by helicopters, police and army cadets, and former Mayor Rudolph Guiliani. The bombast, jumbo screens and loud speakers are part of the annual Stephen Siller Tunnel To Towers run, taking place in more than 35 cities this year (I learn this from the announcer whose voice is carried right to my desk through my open windows). The starting line is marked with a piece of metal scavenged from the WTC site. It's an event founded to commemorate the life of Stephen Siller, a firefighter who ran through the Battery Park Tunnel (which leaves Brooklyn only a few blocks from where I live) to the World Trade Center on September 11 to help evacuate occupants of the towers and died. This run and the "In the Name of Love" and "In the Line of Duty" programs were set up by the foundation to raise money to support those in the fire department, police department or armed services who have lost their faculties or loved ones in service. In short, my cozy neighborhood, full of independent-thinking shop-owners, restauranteurs, carpenters, writers, architects and ne'er-do'wells is overrun with a class of Americans it has moved here to be separate from. It feels like an invasion. An inescapable version of Michael Jackson's "Man in the Mirror" echoes off the warehouses and brick buildings that abut the Red Hook fire hall. Now the national anthem. "Rockets red glare, bombs bursting in air." Deafening cheers to the long note held with "free." And bells rung for those who died.

Behind all the sentiment extended to "heroes and victims" is an undercurrent of American nationalism that is inseparable from any 9/11 event, a wave of self-love that masks and prevents the necessary self-examination the US should be undergoing right now. Barricades block the roads, buses come and go, firemen in full dress walk in hordes, American flags bob in the air. A beach ball bounces above the crowd. "We're a country that comes together to 'never forget' those who died in service. We take care of our heroes and their families. We're strong enough to weather any storm." It's a powerful idea, that we are a cohesive nation that knows how to love the most vulnerable, to protect our own, to remain an isolated bastion of peace and hope" in the midst of 21st century turmoil. But it's a myth. A powerful one that really only serves the purposes of the state and it's structures: the police department, homeland security, corporate entities, the existing gridlocked political system. It scares me.

And it scares my neighbors. As I sit on the corner of Van Brunt and Dikeman reading the Sunday paper and drinking a cup of deli coffee, unwilling to give up my Sunday morning routine, hundreds of Army cadets ran past in crisp rows. Their grey shirts and shorts emblazoned with "ARMY." A german friend joins me on the corner as they all trot past. "What is this, a fascist state?" he blurts. The announcer thanks CBS News for its coverage.

The "Tunnel to Towers" event starts in the Ikea parking lot here in Red Hook and travels past the Wall Street squatters, past the World Trade Center site, and ends at the UPS shipping facility near West and Greenwich streets. It costs $50 dollars to register for the run, $75 if you do so late. The announcer tells us, the participants and the residents alike, at a giant decibel, that the organization is building 38 homes for victims' families. "Couldn't they just rent?" I think.

What does this outpouring of charity and sentimentality mean amidst discussion of a bankrupt nation (we're not bankrupt, we've got plenty of money, we just spend it unwisely)? Amidst failing schools and disintegrating infrastructure? Against the backdrop of a political discussion about how to best care for the "most vulnerable." One block away from the hoopla stand the Red Hook Houses, an extensive project complex that along with the BQE divides Red Hook from the rest of Brooklyn. The juxtaposition of thousands who have paid $50 dollars to build homes for soldiers' families and scream at the world "free" to the systemic impoverishment (financial and more) of so many minority others is stark. Who defines "vulnerable," "hero," "victim?" Who is entitled to this outpouring of emotion, to both give and receive such attention and care?

If you call it charity it deserves canned Michael Jackson and cheering shoppers. Consumers of sentimentality. If you call it a social service, it's a beast that deserves to be starved. That's our current "home of the brave."

Contraception, VSED, POLST, PVS, Oh my!

2011-09-11T10:13:00.000-07:00

In "Fear of a Catholic Ghetto" at Religion Dispatches Sarah Morice-Brubaker points out the language being used by Catholic leadership to influence the new mandatory coverage of contraception. Rightly, she emphasizes the size of the Catholic Church's participation in our health care. And she links to a piece of mine at my other home where I'm editor, The Revealer. Here's a clip from the USCCB's statement against coverage of contraception:

As to the exemption, the comments detail how it “is narrower than any conscience clause ever enacted in federal law, and narrower than the vast majority of religious exemptions from state contraceptive mandates,” wrote Picarello and Moses. “By failing to protect insurers, individuals, most employers, or any other stakeholders with a religious objection to such items and procedures, the HHS exemption, like the mandate itself, violates” the U.S. Constitution and various federal statutes.

Here's a clip from the post at First Things where she gets her article's title:

This definition is so narrow that it excludes almost all Catholic institutions as they now operate. The conjunction, “and” before the fourth article ensures that almost no religious organization satisfies the criteria; “or” would have been limiting, but “and” is crippling. Catholic hospitals, schools, and charities do not serve primarily Catholics, they serve everyone; there is no baptismal requirement to receive services from Catholics. We do not serve people because they are Catholic; we serve people because we are Catholic. And the same goes for members of other religious groups.

Elsewhere I've written about Catholic hospitals and health providers as part of the church's mission to spread the Catholic faith. Which is fine by me unless it involves coercion, lack of informed consent, or lack of meaningful referrals. We are not all Catholic. We never will be. The law should protect the right of conscience of those who aren't from those who provide services, with federal dollars, and think they should be. That's not persecution of Catholics.

A new article at Solitary Watch traces the predecessors to The War on Terror, The War on Crime and The War on Drugs. Here's a clip:

Many historians trace the birth of the War in Crime to the mid-1960s–specifically, to Barry Goldwater’s 1964 presidential campaign, with and his rhetoric of “crime in the streets” and the need for “law and order.” Since that time, politicians have increasingly exploited the fear of violent crime and its perpetrators to institute ever more draconian laws and policies. The War on Crime was soon joined by its partner the War on Drugs, which was launched by Richard Nixon and gained traction during the Reagan Administration. One crime bill after another was passed with broad bipartisan support, and more and more federal and state monies were poured into expanding law enforcement and building and maintaining prisons. Between 1970 and 2005, the U.S. prison population grew by 700 percent.

The thread for me, from my work on denominational health care and end of life care to systematic penalization of segments of society, is how the US legislates who should die, who deserves dignity (and what that means), and how we can/should/get to die. If you are put outside society by governmental systems and laws (think conscience clauses that deem Catholic hospitals outside regulation or "three strikes" drug offenders in prison in California), you are exempt from what the rest of society typically deems as appropriate and fair. Clearly religious exemptions privilege Catholic conscience while penal laws take that privilege away. Still, the law works to provide "special" circumstances to these groups or segments of society.

Studies continue to break down the persistent vegetative state diagnosis. At The Guardian Mo Costandi interviews Adrien Owen who's conducted studies that test the consciousness of PVS patients since the mid 2000s. While I think it's an unrevealing article--most of this has been hashed elsewhere and with more, shall we say, purpose--it begs the question: what does determining "minimal consciousness" within these patients really mean to them (if that's an appropriate question) but also to their families, their doctors, and to society at large?

Last month Compassion & Choices launched a campaign to educate elders on how to end their lives by voluntarily stopping eating and drinking (VSED). The issue of elders refusing food and water was nationally highlighted recently when a couple was evicted from their nursing home for choosing VSED. The Catholic Church and its conservative supporters have, as I predicted they would, come out strongly against patients' rights at the end of life, even, as this article attests, going after living wills and do not resuscitate orders. The author, Christian Brugger, Fellow at The Culture of Life Foundation, writes here about a new law in several states that requires medical personnel to abide by a patient's wishes as noted on the new form, POLST. His concern is that a terminal condition is no longer necessary for patients to refuse treatment:

The POLST-type legislation removes the condition that a patient is terminally ill or diagnosed in a PVS before a refusal order is actionable. In other words, the new law permits any adult patient to refuse any treatment at any time for any reason in the event they lack decisional capacity; and health care professionals, directed by a doctor's medical order, ordinarily would be (and are) required to carry out the order. Although the law for strategic purposes is rhetorically formulated as bearing upon end-of-lifemedical decisions, it sets forth no requirement that a patient's refusal of life-support must be limited to end-of-life conditions.

Note the italics (his, not mine). Shouldn't you be able to refuse treatments you don't want? Only if your body and your life are your own. The position of church leadership, however, is that your body is not your own but rather belongs to their interpretation of god. In a society that is comprised of endless varieties of faith, an organization that does not believe your body belongs to you--and is managing 1/5th of all hospital beds--is on a serious mission.

I'm Having a Moment.

2011-08-11T17:39:00.000-07:00

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.

Science is (Not) Science.

2011-07-25T11:24:00.000-07:00

A rather lengthy but worthwhile excerpt from Jackson Lear's new article at The Nation on Sam Harris' latest book:

Though they often softened their claims with Christian rhetoric, positivists assumed that science was also the only sure guide to morality, and the only firm basis for civilization. As their critics began to realize, positivists had abandoned the provisionality of science’s experimental outlook by transforming science from a method into a metaphysic, a source of absolute certainty. Positivist assumptions provided the epistemological foundations for Social Darwinism and pop-evolutionary notions of progress, as well as for scientific racism and imperialism. These tendencies coalesced in eugenics, the doctrine that human well-being could be improved and eventually perfected through the selective breeding of the “fit” and the sterilization or elimination of the “unfit.”

Every schoolkid knows about what happened next: the catastrophic twentieth century. Two world wars, the systematic slaughter of innocents on an unprecedented scale, the proliferation of unimaginably destructive weapons, brushfire wars on the periphery of empire—all these events involved, in various degrees, the application of scientific research to advanced technology. All showed that science could not be elevated above the agendas of the nation-state: the best scientists were as corruptible by money, power or ideology as anyone else, and their research could as easily be bent toward mass murder as toward the progress of humankind. Science was not merely science. The crowning irony was that eugenics, far from “perfecting the race,” as some American progressives had hoped early in the twentieth century, was used by the Nazis to eliminate those they deemed undesirable. Eugenics had become another tool in the hands of unrestrained state power. As Theodor Adorno and Max Horkheimer argued near the end of World War II in Dialectic of Enlightenment, the rise of scientific racism betrayed the demonic undercurrents of the positivist faith in progress. Zygmunt Bauman refined the argument forty-two years later in Modernity and the Holocaust: the detached positivist worldview could be pressed into the service of mass extermination. The dream of reason bred real monsters.

The midcentury demise of positivism was a consequence of intellectual advances as well as geopolitical disasters. The work of Franz Boas, Claude Lévi-Strauss and other anthropologists promoted a relativistic understanding of culture, which undercut scientific racism and challenged imperial arrogance toward peoples who lagged behind in the Western march of progress. Meanwhile, scientists in disciplines ranging from depth psychology to quantum physics were discovering a physical reality that defied precise definition as well as efforts to reduce it to predictable laws. Sociologists of knowledge, along with historians and philosophers of science (including Karl Mannheim, Peter Berger and Thomas Kuhn), all emphasized the provisionality of scientific truth, its dependence on a shifting expert consensus that could change or even dissolve outright in light of new evidence. Reality—or at least our apprehension of it—could be said to be socially constructed. This meant that our understanding of the physical world is contingent on the very things—the methods of measurement, the interests of the observer—required to apprehend it.

UK Decision Overrules Doctors' Request to Remove Life Support

2011-06-30T16:22:00.000-07:00

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.

Force-Feeding Prisoners Is Unlike Patient Removal from a Feeding Tube?

2011-06-29T17:39:00.000-07:00

As someone who watches the legal battles surrounding patient removal from artificial nutrition and hydration, the evolution of the directives used by Catholic health care (which state now that the decision to remove ANH is up to the hospital and not the patient), and who sits at the bedside of dying patients who wish to stop eating and drinking and often do, I find the occasions of state-ordered force-feeding of inmates extremely pertinent to end-of-life health care discussions.

Of course the thread is state sanction of what we ingest, what we do with our bodies (think drug laws, abortion, aid in dying, motorcycle helmet laws, the list goes on). Do we agree that force feeding a death row inmate is suicide prevention? Is prevention of the individual's suicide so that the state can kill him? Or rather, put another way, is the state prolonging the man's death; not allowing him the privilege of taking his own life? (Be sure to watch the dated, partisan but nonetheless riveting 1981 TV miniseries Masada, which recounts the tale of 900 Jews besieged in a mountaintop fortress by the Romans. The Jews commit suicide in order to "defeat" the soldiers and have since become legendary heroes. Or compare the heroism of soldiers who put themselves in harm's way in battle. Or kamikazee pilots in WWII. Or suicide bombers.)

Arguments for force feeding a death row inmate could be made--for his soul, for his quality of life behind bars, for his need to pay for his crimes. And surely he could be depressed, as one can imagine death row inmates are, just as terminal patients are. But it is in these cases that particular troublesome aspects of refusing patient removal of ANH are highlighted.

And so, from Birmingham, Alabama, the story of a death row inmate who has stopped eating and showering and has been ordered force-fed by a federal judge. The details of it make me ask how as a society we wish to define dignity and for whom we wish to (p)reserve it.

A federal judge has ordered a man who faces the death penalty on federal charges that he killed two tellers during a 2007 bank robbery in Bessemer be force-fed and bathed at the Shelby County jail.

U.S. Magistrate Judge John E. Ott, in an order filed Monday, stated that he had learned from the U.S. Marshal that William Merriweather has been refusing food and to take a shower for an extended period. "The court has been monitoring the situation for some time," according to Ott's order.

On Monday, Ott stated that he had informed Merriweather's defense attorneys of "the need for medical intervention under the circumstances."

Merriweather's attorneys, Emory Anthony and Richard Jaffe, argue in court documents that Merriweather is incompetent to stand trial.

The two attorneys stated in documents filed Monday in response to the judge's proposed order that Merriweather was "clearly not competent" and agreed to a temporary order of no more than 14 days permitting the Shelby County Jail to take reasonable steps "to ensure that Mr. Merriweather's health is not further compromised."

Ott ordered the Shelby County Jail to take steps to make sure Merriweather's health is not further compromised, including forcibly feeding and bathing him for a period not to exceed 14 days. Before the end of that time the U.S. Marshal is to be notified by jail personnel of Merriweather's medical status "and his compliance or non-compliance with medical and jail personnel directions."

Good, Good Links.

2011-06-26T11:58:00.000-07:00

*Ethan Remmel, a terminal cancer patient, kept a blog at Psychology today. On June 12 he died using Washington State's Death with Dignity law. You can read his posts here. You can read about him here. (h/t janek)

*I know Candy Chang because we spent time together at a Global Studio in Johannesburg, South Africa. My spouse at the time was presenting at the workshop; Candy was an architecture student with more spunk and creativity and productivity than you can imagine. Here's a link to her project in New Orleans that fits this site's MO perfectly. Before I Die. You can read more about Candy here.

*Thaddeus Pope points us to a new article at The Journal of Clinical Ethics on the use of the Best Interest Standard (BIS) (Pay to read article). Pope writes:

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to “guide” parents in making medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a “limiting” standard to determine when to override those decisions. Specifically, Diekema contends that the BIS “does not represent the best means for determining when one must turn to the state to limit parental action.” He argues that this limiting function should be served by the harm principle instead of by the BIS.

*Pope also notes a new article he's co-authored which appears in the current Widener Law Review. It addresses the legal practice of voluntarily stopping eating and drinking (VSED). From his blog (October):

Patients with decision-making capacity may choose (through contemporaneous instructions) to voluntarily stop oral eating and drinking to accelerate the dying process. Moreover, patients without capacity often have the same option. Voluntarily stopping eating and drinking (VSED) is a clinically validated “exit option” that enables a good quality death. Significant and growing evidence supports VSED as a means of accelerating the dying process. Nevertheless, VSED is widely resisted by healthcare practitioners either because they think that it is illegal or because they are uncertain of its legality.

I Told You So: Catholic Church Comes After Catholic Bioethicists

2011-06-21T13:45:00.000-07:00

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

2011-06-17T07:55:00.000-07:00

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.

BBC's Pro-Death Propaganda

2011-06-17T07:20:00.000-07:00

A BBC special by the renowned British author Terry Pratchett has caused a stir in the UK. Shown Monday night, "Terry Pratchett: Choosing to Die," included footage of a patient ingesting lethal medication and dying in a Dignitas clinic in Switzerland, where aid in dying is legal. Nearly 900 viewers contacted BBC to complain. The show caused a furor that reached the state level; several peers are accusing the station of taking a side in the aid in dying debate, one of the more contentious issues in Britain at the moment. Aid in dying is not legal in the UK. Terry Pratchett, diagnosed with Alzheimer's, is a vocal advocate for the right to die.

Last year Kier Starmer, the Director of Public Prosecutions, ruled that it was legal to assist a patient in their death, a decision that was the result of a court case brought by multiple sclerosis sufferer, Debbie Purdy, in 2009. Purdy asked the courts to allow her partner Omar Puente to assist her travel to Switzerland when she decided to end her life -- without risking court action when he returned.

(h/t Mrak)

So Long, Jack.

2011-06-04T15:14:00.000-07:00

Jack Kevorkian is dead at the age of 83. News came in yesterday and it's taken me a little while to sum up what, if anything, I have to say about it. The media's dream, the assisted suicide movement's nightmare, Kevorkian cornered the national conversation about death. And it's hard to knock anyone who gets us talking about death. As I often write, we're in a national (and international) health care crisis. The world's population is quickly growing older, subject to medical systems and structures that are woefully unprepared for the increasing needs of this population. Our national economy will shortly be brought to a halt if meaningful health care reform isn't enacted. (No, I don't mean Obamacare. I mean real reform.) And increasingly, elders are not dying the way they want to.

While Kevorkian brought this conversation to prime time -- and everybody has an opinion on Jack Kevorkian -- and while he did it without the horrifying saccharine sweet sentimentality that impedes the meaningfulness of such conversations, he erred by allowing himself to be portrayed as a cantankerous clown. He was too easy to paint as a quack, a cantankerous fanatic obsessed with death. If there's anything I've learned in my modest time writing about death (and religion), it's that tone and sound bites have more impact than facts. In a society that packs death off to nursing homes and hospitals, we desperately can't afford dismiss-able spokesmen who allow media to relegate the conversation to spectacle.

And there's no doubt that Kevorkian became a spectacle. Patients' rights don't mean much when reduced to snuff clips on 60 Minutes. So while I strongly believe in choice at the end of life -- and sympathize strongly with Kevorkian's mission -- and while we've seen three states adopt rational, helpful laws regarding patient's rights at the end of life since Kevorkian's rise to prominence, I don't think that the life and times of Dr. Death Kevorkian has really moved the nation or the assisted suicide movement ahead in the necessary grapple that is our impending health care crisis.

Still, may he rest in peace.

More on Kevorkian's death: From his Royal Oak neighbors. From Janice Van Dyck at HuffPo's Healthy Living. Icky monomaniacal Wesley Smith at National Review. Jeff Gerritt at Detroit Free Press. Tami Abdollah at AP gets it mostly wrong. Another AP story calls Kevorkian "audacious." UK's conservative BioEdge calls Kevorkian a "suicide hero." Christian Post focuses on Kevorkian's dismissal of religion. Religion Dispatches' Susan Henking gets stuck in the nomenclature, picks out how various religions discuss suicide (and cites Durkheim!) and divides the landscapes into two erroneously-named sides, "the right-to-life" and "right-to-death" movements.

Vonnegut Interviews the Dead

2011-06-01T07:35:00.000-07:00

Not to miss: A new collection of fictional interviews by Kurt Vonnegut, God Bless You, Dr. Kevorkian, makes use of the much-criticized doctor's skills to interview the dead.

Most Controversial?

2011-05-31T17:13:00.000-07:00

A new Gallup poll shows that the top most controversial issue in the U.S. is "doctor assisted suicide." Next up? Abortion. Having a baby outside marriage. Buying and wearing clothing made out of animal fur. Gay or lesbian relations. My unscientific opinion is that four out of five of these issues are opposed primarily on grounds of religion. Check the platform of any "pro-life," "pro-family values," or legal organization in the U.S. -- not to mention the Republican Party platform. And who says we're a secular society?!

Finding Someone to Blame

2011-05-31T09:03:00.000-07:00

And yet, guns are legal.

Rita Marker, of the dubiously-named Patients Rights Council, is of course quoted.

RIP Grete Waitz

2011-04-22T06:49:00.000-07:00

How could I have missed this? My total hero during the 80's was a willow-wisp of a woman with a blonde ponytail, Grete Waitz. A Norwegian, tough as hell, and nine time winner of the New York City Marathon when women were just discovered to be strong enough for the distance. (Yes, check my yearbook. My goals were to run the NYC marathon and write the great American novel. Geesh.) I had pictures of Grete cut out from Runner's World pasted into my school notebooks. She was a sensation, a discovery for me of how strong and successful a woman could be, of what the body could do. She broke the 2 1/2 hour barrier for the marathon and kept going -- to the olympics and endless titles. She placed second to my other hero, Joan Benoit, in the first ever women's marathon in Los Angels. Waitz died on the 19th in Oslo of cancer.

Terri Schindler Schiavo Foundation Partners with Care Facility

2011-04-16T05:12:00.000-07:00

A press release last week announced that New Beginnings Medical Center in Medford, New York, will be "dedicated to the memory of Terri Schindler Schiavo." The partnership -- and the Terri Schindler Schiavo Life & Hope Network -- signal in the release that this is the first of a new effort to bring medical facilities into greater partnership with opponents of removal from artificial nutrition and hydration.

The work of the Schindler family on behalf of the "congnitively disabled" has until now been in raising awareness and advocating for those families who object to medical institutions and other family members who seek removal of patients from feeding tubes. Their efforts were reinforced by the Catholic Church's change to the Ethical and Religious Directives that govern all 624 Catholic hospitals in the US in November, 2010. The new guidelines state that artificial nutrition and hydration is "comfort care" and not medical treatment, despite the surgical insertion required for feeding tubes, and therefor removal is up to the hospital (subject to direction from the local bishop) and not the patient's advance directive wishes nor the wishes of the family.

By positing that persistent vegetative state patients are vulnerable to a "culture of death" that seeks to kill them off and that the creation of "safe havens" for such patients is necessary, the Network and it's affiliated care facilities are challenging society's understanding of brain death, disability, autonomy, patients' rights, and the definition of life. From the release:

New Beginnings is a state of the art outpatient rehabilitative facility for Veteran's, Traumatic Brain Injury Survivors and other cognitively and physically disabled persons. It is designed to provide rehabilitation, management and recovery services in an exceptional, stimulating and safe environment.
"We are dedicating New Beginnings Community Center in Terri Schindler Schiavo's memory," said Allyson Scerri, New Beginnings Founder and President. "This is our way of honoring Terri's memory, her battle for proper treatment as a cognitively disabled person, and all others who did not have the chance for rehabilitation," she added.
"We are truly blessed by the vision of New Beginnings Community Center. We believe that this grand opening will set an example for health care facilities across the country to begin to fully understand that just because someone experiences a cognitive disability, and their physical appearance may change, their human dignity does not," stated Bobby Schindler, Executive Director of Terri's Life & Hope Network and brother of Terri Schiavo.
One of the goals at the Terri Schiavo Life & Hope Network is to partner with care centers that provide assistance for brain injured individuals and support for their families.
"This is a very special event for our family and our network. We are delighted to know that New Beginnings will be a great resource and safe haven for those that have experienced a brain injury. The underlying message is that there always remains hope for these patients and their families," stated Suzanne Vitadamo, Director of Development of Terri’s Life & Hope Network and sister of Terri Schiavo.
"We remain optimistic that this will be the first of many extended health care facilities to embrace a 'safe haven' concept of care which will not deny any treatment or therapy to the cognitively disabled and traumatic brain injury survivors," Vitadamo added.

Suicidal GOP

2011-04-04T11:22:00.000-07:00

Now really, what are they up to with recent ambushes of seniors? AARP, Medicare, Medicaid, Social Security. As Digby says, is the GOP demonstrating suicidal tendencies?

UK Catholic Medical Association Goes After Palliative Care

2011-03-28T17:26:00.000-07:00

The "double effect," supported by the American Medical Association, states that a doctor may prescribe pain medication to a dying patient in doses that are lethal because the intention of the doctor is to relieve pain, not end the patient's life. Palliative medicine, the specialty field that focuses on ways to alleviate pain, is often held to account by opponents of assisted suicide because of what fails to be a "bright line" during the process of dying. How much medicine is too much? Who decides? What if the patient has no advanced directive? Would they want to be in pain or to life a few hours or days longer?

A story in Saturday's The Underground, a UK publication on "Pop Culture from a Christian perspective" quotes the president of the UK Catholic Medical Association (and a lot of excerpts from the U.S. based LifeNews) on the unfounded accusation that "mercy killing" is rampant in that country. A clip from the article, below. Note the muddling of end of life issues by confusing palliative care, hospice, assisted suicide and prevalent Catholic teaching on suffering, along with a restatement of the U.S. case of Terri Schiavo:

One reason for the occurrence of euthanasia, Walker told Scottish Catholic Observer, is that “The standards of medical ethics and of interpretation of existing legislation appear to vary greatly around the country and from one organization to the next, even in the same local area.”
Misuse of LCP
Another reason is the misuse of the Liverpool Care Pathway, which was developed in the 1990s at the Marie Curie hospice and royal Liverpool Hospital, so that palliative care for end-of-life patients could improve, the Scottish Catholic Observer said.
The LCP provides criteria that must be followed before ending life-sustaining treatment and applying palliative care, LifeSiteNews said. However, reports have indicated that LCP has been used in the cases of people who were not dying, such as dehydrating someone to death on the grounds of LCP.
Walker said, “If it is used out of context, then it could be used to the detriment of patients e.g. a patient comes into a resuscitation bay, and it is not always clear if a condition is acute and can be treated,” LifeSiteNews reported.
A recent report on crematorium records showed that 23% of all deaths in one city in the U.K. were people put on LCP without any definite diagnosis of their stage of life, LifeSiteNews said.
LifeSiteNews mentions the case of in the U.S. of Terri Schiavo, who was not dying, but who was withheld hydration, as an example of euthanasia. However, if a person is “actively dying and/or is unable to assimilate H & N, [t]hat person is actually dying and the provision of H & N provides little to no benefit and may cause suffering.” In such case, it would not be euthanasia.

Ban in Idaho

2011-03-28T16:29:00.000-07:00

From The Republic, below, a quick piece on a new ban in Idaho on "helping somebody else commit suicide." I haven't read the bill but wonder what exactly this means. Is the ban against a doctor prescribing fatal doses of a medicine? Yes. LifeNews writes that the bill "would revoke licenses from physicians who prescribe a lethal cocktail of drugs for patients to use to kill themselves. The law also allows people to get injunctions to prevent others from killing themselves with a doctor’s help. If it becomes law, those found guilty face five years in prison." But what is lethal? And who is to say that the doctor is responsible for a suicide? Could doctors be under greater scrutiny for the actions of their patients? Is it an overly-enthusiasitic reaction to "pro-life" efforts to thwart the momentum of the assisted suicide movement? Absolutely. Again from LifeNews:

"David Ripley of Idaho Chooses Life told LifeNews.com, “No opposing testimony was presented at the hearing. During the Senate deliberations, the Idaho ACLU testified against the bill. Supporting testimony was provided by Cornerstone Institute, Right to Life, the Idaho Medical Association and attorney Bob Aldridge.”
“This is a tremendous victory for the pro-Life movement in Idaho. Such overwhelming votes should make it clear to the death lobby that they are not welcome in our beloved state,” he added.

Can the ban be used to prosecute those who remove PVS patients like Terri Schiavo from life support? Can the ban be used to punish spouses of those who commit suicide?

The House voted overwhelmingly to send a bill banning helping somebody else commit suicide to Gov. C.L. "Butch" Otter for signature.
Monday's 61-8 vote came after brief debate on the chamber's floor.
Republican Rep. Lynn Luker of Boise argued that outlawing assisted suicide was necessary to help prevent abuse of elderly residents by their caregivers who are seeking to profit from their patients' demise.
Luker says this bill, which foresees penalties of five years in prison for violations, protects "all concerned."
Democratic Rep. Grant Burgoyne complained this is inappropriate government intervention in a private decision.
Burgoyne says, "My life is mine. It's mine for me to decide when and how it should end. It's not the business of the government to tell me when and how I should end it."

Georgia's Execution Drug Confiscated

2011-03-16T08:03:00.000-07:00

It seems an odd discussion given prevailing attitudes about how we penalize killers or how we die (see comments about the condemned deserving of inhumane treatment in comments below), but there should be growing concerns about how we conduct capital punishment -- or rather, if we should continue to do so at all. It's through another lens that we can examine the efficacy of execution drugs: the test kits of Kevorkian, Nitchke and Final Exit.

Assumptions that dying is easy, that the dying deserve no means of escaping unnecessary pain, and that all death is the same are laid bare in the examination of how we kill the "guilty." What, again, is the test of a humane society?

From the AP:

ATLANTA — The Drug Enforcement Administration confirmed Tuesday that the agency seized the state of Georgia's supply of a key lethal injection drug because of questions about how the stockpile was imported to the U.S.

DEA spokesman Chuvalo Truesdell said he didn't know if other states' supplies of sodium thiopental were being collected. The seizure comes less than two months after a convicted killer in Georgia was executed, despite raising questions about where the state had obtained the drug and whether or not it had expired.

Truesdell wouldn't elaborate on exactly what worried the DEA.

Sodium thiopental, a sedative that is part of a three drug cocktail used in executions, has been in short supply since the sole U.S. manufacturer decided to stop producing it.

The shortage has delayed executions in several states, and an Associated Press review found that at least five states — Arizona, Arkansas, California, Georgia and Tennessee — had to turn to England for their supply of the drug. Nebraska, meanwhile, secured a stockpile from an Indian firm.

Preventing Elder Abuse

2011-03-12T10:16:00.000-08:00

From The Lancet:

Experts told the Committee that the prevalence of elder abuse in the community is around 14% in the USA but that this figure is likely to be an underestimation. For example, a new prevalence study showed that for every elder abuse victim in New York State who makes it into an official reporting system, another 23—24 go undetected. The Committee also heard that abuse and neglect of older adults may not only be at the hands of family members and staff in nursing homes, but that fellow residents can also be perpetrators.

Meanwhile, a new report from the US Government Accountability Office (GAO), released to coincide with the Senate Committee hearing, concluded that many state Adult Protection Service programmes responsible for addressing elder abuse have struggled to keep pace with increasing caseloads because of a decrease in funding and lack of federal leadership. The GAO called for better governmental guidance for these protection services.

Despite these shortcomings, the USA still leads in the development of protection services for adults, which are akin to the child protection services in many countries. It could go further. For example, the appointment of an elder abuse csar in government could help address the lack of federal leadership highlighted in the GAO report. Internationally, the USA should champion a newUN Declaration on the Rights of Older People, which has been suggested by non-governmental organisations and global networks for the prevention of elder abuse. There could be much to gain in the prevention of elder abuse by mirroring measures to protect children. Older people have the right to live in safe environments too.

Sharing Decisions with the Doctor

2011-03-05T06:13:00.000-08:00

When faced with a medical crisis, patients often look to doctors to make care decisions for them. When your body rebels or broad-sides you, it's a relief to have someone with the pertinent knowledge to tell you what to do. But while the days of a woman going into the hospital for a lumpectomy and coming out of anesthesia with a full mastectomy are over, thanks in part to the patient autonomy movement of the 70s and 80s, doctors still play the largest role in determining a patient's treatment path. As the doctor-patient relationship becomes more institutionalized doctors no longer have the intimate relations with their patients that they once did - if they ever did! - that allow them to account for a patient's lifestyle and care choices. From a new op-ed at The Lancet:

The Dartmouth Atlas Project found that whether patients underwent elective surgery largely depended on where they lived and the clinicians which they saw. For example, patients with heart disease in Elyria, Ohio, were ten times more likely to have a procedure such as angioplasty or stents than were those in Honolulu. And women older than 65 years living in Victoria, Texas, were seven times more likely to undergo mastectomy for early-stage breast cancer than were women in Muncie, Indiana. Such wide variations underscore the need for improving shared decision making, say the authors.
The importance of shared decision making is clear, especially when considering a disease such as early-stage breast cancer, in which mastectomy or lumpectomy and radiotherapy have similar survival outcomes but are very different treatments for a patient to undergo. It is crucial that doctors inform patients of the pros and cons of each and invite them to participate in the management choice.

The op-ed also notes that the "Dartmouth-Hitchcock Medical Center in New Hampshire already has the nation's first dedicated Center for Shared Decision Making." Considering the paternal history of medicine, "already" seems decidedly inaccurate.

Attempting to Make Another Terri Schiavo

2011-03-05T04:52:00.000-08:00

In his weekly email Michael Cook at BioEdge asks if a 58 year old grandmother, a legal immigrant from Rwanda ineligable for Medicaid, may be the next Terri Schiavo. Rachel Nyirahabiyambere is now "comatose" after a stroke; her court-appointed guardian has chosen to move her from the hospital where she was initially receiving treatment to a home nearby. Her feeding tube has been removed. The hospital was unable to come to an agreement with the woman's children about her path of care. Cook writes:

It’s always best to wait for both sides of a story to emerge. But a New York Times report makes Georgetown University Medical Center and the US health system look quite heartless. After the children of a brain-damaged Rwandan migrant without health insurance could not pay for hospitalisation or nursing care, her feeding tubes were removed and she is slowly starving to death in a Maryland nursing home.
There will certainly be further developments in this breaking news. Not only is it a case study in medical ethics, but it will also give ammunition to opponents of President Obama’s healthcare program. They will surely use it as an example of what “death panels” could do. Stay tuned.

I don't hold out Cook's hope, primarily for these reasons:

- Neither Cook nor the New York Times parse the meaning of PVS, a diagnosis that has been challenged by everyone from the Catholic Church to the Terri Schindler Schiavo Foundation to Belgian scientists to pro-life organizations hoping to shape end-of-life practices. PVS typically means brain dead. While the diagnosis allows room for those who still have an semi-active brain stem (which may result in some physical function), it means there is no chance for recovery and yet, thanks to artificial nutrition and hydration (ANH), a surgically inserted feeding tube, the patient can live for many years, or decades, even if weened from a respirator and defibrillator. Hoping for a recovery from PVS is like hoping for Jesus to perform a miracle. There are statistically no cases of a patient "waking" from PVS.

- The public has shown a more sophisticated understanding of what "starving to death" means. The case of Terri Schiavo proved that the public was willing to think more critically about the removal of ANH. There is no proof that unconscious or comatose patients experience any pain from ANH removal. In fact, stopping eating is a natural aspect of the dying process. I don't mean to insinuate that Ms. Nyirahabiyambere couldn't "live" for another many years were she to receive constant care and food and hydration via a tube. But that her dying process was interrupted by artificial means, rendering her in a state that requires constant medical intervention, is not lost on the public.

- Ms Nyirahabiyambere is a legal resident of the U.S. Hopes that her race, nationality or lack of insurance will do anything other than bolster calls for universal health care is misjudging the constituents who usually get behind "pro-life" crusades

- Terri Schiavo, and before her, Karen Ann Quinlan and Nancy Cruzan, became high-profile cases because they were all young women whose beauty, youth and potential - particularly when displayed in pre-incident photos, say, from high school year books - could engage a broad audience. The crass media beast is less servicing of grandmothers, black at that. Despite the fact that Ms. Nyirahabiyambere comes from Rwanda, a focus of media attention and U.S. aid since the genocide in 1994 (after which the patient and her family came to the U.S.), that, dare I say, paternalistic humanitarian focus has waned.

- There are thousands of PVS patients in the U.S. at any given time. Surely, those wishing to focus on PVS and removal from ANH can find a better case to pull heart strings. Again, I say this not to denigrate this patient but to recognize the makings of a media blitze like Schiavo's.

- It's not 2005. Discussion of end of life care, patients' rights and how we die are more broadly accessible. I don't underestimate the public's willingness to sentimentalize the dying process but I also think that the political climate is such that, as a culture, we are better versed in what medicine can and can't do. As Andrea Sloan, the court-appointed guardian for Ms. Nyirahabiyambere is quoted in the New York Times:

“Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens,” Ms. Sloan said in an e-mail. “Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”

It's unfortunate that Ms. Sloan frames the conversation around money, what the medical industry will or won't pay for. Rather, the issue of Ms. Nyirahabiyambere's right to die without invasive medical procedures is ethically more paramount; the hopes and desires of her family, as with all of us attending a dying loved one, are not enough to change a patient's outcome, to keep them with us any longer.

For more, read Thaddeus Pope a Medical Futility Blog.

Hearing Loss and Dementia

2011-02-15T08:28:00.000-08:00

AARP reports that a new study links onset of dementia with hearing loss:

Researchers found that those with hearing loss at the beginning of the study were much more likely to develop dementia by the end, even after taking into account age and other risk factors. The risk of dementia only began to rise once hearing loss began to interfere with the ability to communicate — for example, in a noisy restaurant. The study also found that hearing loss increased the risk of Alzheimer's disease, but the two were not as strongly linked as hearing loss and dementia. The study was published in the medical journal Archives of Neurology.

Lana Barnes Removed From Guardianship

2011-02-12T05:03:00.000-08:00

Last week, Lana Barnes was removed from guardianship of her 85 year old husband, Al Barnes, by a court in Minnesota. The case stemmed from a disagreement over treatment for Al Barnes between his wife and the hospital where he was being kept alive on life-support. Lana Barnes felt that her husband could recover, the hospital disagreed. During the trial, Lana Barnes admitted to having altered her husband's advanced directive.

The case was another example of the challenges faced by families, patients and hospitals when encountering disagreements over the best path of terminal patients. Once again, the courts had to step in to resolve the issue. But my questions are: what if Al Barnes hadn't drawn up an advanced directive? How do we know that Barnes wishes didn't change after he signed his advanced directive? How do patient's protect their end of life choices as they approach the inability to state their desires?

(h/t BioEdge)

The Pope Doesn't Donate Organs

2011-02-12T04:48:00.000-08:00

Many proponents of organ donation used the example of Joseph Ratzinger as an organ volunteer as a selling point. See, donating organs is a good thing! But recently, Polish Archbishop Zygmunt Zimowsky, of the Vatican's health office, clarified that no one will be receiving Pope Benedict XVI's organs. The body of the "belongs to the entire church."

Mitch Daniels Talks Futile Care

2011-02-12T04:22:00.000-08:00

Indiana Governor Mitch Daniels touched the Medicare third rail yesterday when talking about how to cut the government program that covers health care for older Americans. Writes Laura Meckler at The Wall Street Journal:

He added that he understands the urge by families to push for what may be futile care. “It’s the most human thing in the world,” he said. “Your loved one is in desperate shape.” He said “we can try this thing that has almost no chance of working” but questioned whether it is worth it, especially given that “it’s going to cost an incredible amount of money.”

It's interesting that a Republican and so many others have this conversation in the framework of cost-cutting and not under the rubric of a more humane consideration regarding futile care: the harm, both physical and emotional that is exerted on family and the patient by futile care.

Daniels stopped short of suggesting, as the Obama administration did briefly, that doctors should be reimbursed for conversations with patients about end of life choices.

Sundance Top Prize

2011-01-30T14:32:00.000-08:00

"How to Die in Oregon," a documentary about end of life care in Oregon, won the top prize at Sundance. Read more about the film here.

(h/t Genevieve Yue)

Post Mortem

2011-01-30T14:26:00.000-08:00

A new series of stories at NPR, ProPublica and All Things Considered, Frontline and Morning Edition will examine how we die:

On Feb. 1, 2011, ProPublica, FRONTLINE and NPR will begin airing and publishing the results of a year-long investigation into the dysfunctional system that determines how Americans die titled "Post Mortem." The newsrooms found a system in which there are few standards, little oversight, and the mistakes are literally buried. In state after state, reporters found autopsies conducted by doctors who lacked certification and training. Ultimately, the errors made by coroners and forensic pathologists have allowed potentially guilty perpetrators to go free and the innocent to be accused of crimes they did not commit.
ProPublica's A.C. Thompson was our lead reporter, and his work, produced in conjunction with that of many other reporters, will be available here the morning of Feb. 1. ProPublica will also be publishing stories on California's coroners with help from California Watch, a Berkeley-based journalism nonprofit, and the Investigative Reporting Program at UC Berkeley. Some of those stories will appear on both ProPublica's website and CaliforniaWatch.org.
In addition to our report, NPR will air stories on Morning Edition and All Things Considered, and on the night of Feb. 1 at 9 p.m., PBS FRONTLINE will air their one-hour documentary "Post Mortem." Watch a preview of the show at FRONTLINE and visit their website to find your local listings.

(h/t Kiera Feldman)

The Source of Morality

2011-01-30T05:36:00.000-08:00

A excerpt from Amol Rajan's review of a new book by the British author John Gray, "The Immortalization Commission: Science and the Strange Quest to Cheat Death."

But stick around for the last paragraph because it frames the point I've been thinking about the past three days. I'm watching Joan of Arcadia, a long-cancelled TV show that came up in the "Religion As Media" course I'm auditing at NYU. Joan gets visits from God. He tells her to do things that are often outside of her interests and capabilities and often illogical (even while telling her to be herself). She pursues them grudgingly -- and not without a hefty dose of sass. Sometimes bad things happen but most times great things happen: a friend stays in school after she smashes his artwork; she tries out for cheerleading and aids an investigation into a young girl who threw her newborn in the trash; she takes piano lessons and reunites her father with his estranged brother and her teacher with Bach. She never knows why she's doing what God has asked her but she does it anyway because faith means obeying. (For more on the show, read Angela Zito's "The Theology of Joan of Arcadia.")

How did I get here from a book review about scientific attempts to cheat death? Because Rajan asks us to consider that simply acting according to moral outlines (religious laws) may not be the best way to form a moral society. Something to be considered as we look for a moral ethics in medicine:

Gray's life was changed by his reading of Norman Cohn's The Pursuit of the Millennium. (It happens to all of us). In that seminal work, Cohn argues that the millenarian movements of medieval times and secular totalitarianisms of the 20th century shared a foundational characteristic with the Abrahamic religions. They saw history as teleological. More than that: they considered history rectilinear, and so possessing both a direction and a destination. The secular totalitarianisms were essentially religious, because in sponsoring this teleology they saw human history as a moral drama whose final act is salvation. But whereas traditional religion is animated by faith in God, these secular religions are animated by faith in progress, as delivered by science.
Yet science, Gray contends, cannot deliver what we want it to, which is salvation from ourselves. Scientific knowledge grows incrementally, but moral knowledge can be lost as easily as it is gained. The cult of progress suggests that our values and goals will converge as knowledge grows, but 20th-century history suggests that the opposite is true.
And what is the search for immortality, but the quest for salvation from ourselves? It fits neatly into Gray's scheme of animosity, and shows that we are yet to heed the central lesson of Darwin's work: humanity is no different from other species in being doomed to extinction on an unforgiving planet.
**
In documenting this history, he exposes the tawdry relationship between theology and ethics. Many immortalists, like the great ethicist Henry Sidgwick, think that without an afterlife there is no point in acting morally: the promise of heaven is the sole incentive to be good. Yet this view is a first step on the path to tyranny, because it empties moral actions of their true worth. Being good must be good in and of itself – rather than merely instrumental to some future experience – if people are to be convinced to act ethically. Gray's debunking of theology's grip on ethics is therefore timely and timeless.

Protesting the Hospice Next Door

2011-01-17T12:37:00.000-08:00

I wonder if they would have the same reaction to a new hospital next door? Residents of an upscale British Columbia building protest a new hospice that is being built next door. The article claims that the aversion is cultural. I wonder if non-Asian residents are having the same reaction.

Dozens of angry Asian residents of a posh, University of B.C., highrise building aim to stage a placard-waving protest rally to protest a 15-bed hospice being planned next door.
“We cannot have dying people in our backyard,” said rally organizer Janet Fan, Wednesday “It’s a cultural taboo to us and we cannot be close to so many dying people. It’s like you open your door and step into a graveyard.”
Fan lives on the 17th floor at Promontory, at 2688 West Mall, near Thunderbird Stadium.
She said residents weren’t consulted and only found out when an open house on the proposed hospice was scheduled for Monday.
UBC planners are planning to build St. John Hospice next door.
“Next week we’re going to organize a march, holding banners, to the office of the president of UBC,” said Fan, a stay-at-home mom. “We’re going to tell him we don’t want this hospice and how enraged, angry and shocked we are.”
Fan said 80 per cent of the residents of her 18-storey building are Asian and are strongly opposed.
“Units here are worth $1 million,” she added. “We put our life savings into this.”
She said residents are worried the hospice will have a negative impact on their property values.
Asian residents living in other buildings in the upscale Hawthorn Place neighborhood have signed a 200-name petition, including 65 from Fan’s building.
Qing Lin, who bought a Promontory apartment for $900,000 almost a year ago, said she and her seven year old daughter will have nightmares if the hospice goes ahead.
“We believe that people dying outside will bring us bad luck,” she added. “I’m very angry and upset. If I had known it was going to be a hospice, I wouldn’t buy it for half the price.”
Her neighbour Anglea Gao, 34, clutching her nine-month-old son Ryan, agreed.
“It’s very disturbing,” she said. “My kids and I are going to feel so frightened and angry just to think there are dying people so close to us.”
Residents wrote a letter Jan. 9 to Jan Fialkowski, executive director of the University Neighborhood Association, (UNA) saying they feel a hospice is the equivalent of a funeral home or crematorium.
“‘Death is the Yin and ‘Live’ is the Yang,” it read. “If the Yin and Yang are near to each other, ‘Death’ will bring bad luck, meaning sickness and even death . . . The ghosts of the dead will invade and harass the living.”
The letter said Asians believe that living next to “death” would “lead to failure of business, the loss of money, the break of marriage and family, and the healthy growing up of children will be affected.”
Sharon Wu, chairwoman of the UNA said 60 residents came to a UNA board meeting Tuesday.
“The UNA respects cultural beliefs,” she said. “UBC is planning to address the concerns of the residents. It’s a very emotional and sensitive issue.”
It’s not the first time the hospice has met with opposition.
It met with complaints when it was originally planned for Marine Drive, close to Place Vanier student residences.
Joe Stott, director of Campus and Community Planning, said objections came from students who didn’t want to have to keep quiet at night and from Pacific Spirit Park and the Wreck Beach Preservation Society.
Stott admitted planners have been caught by surprise by the latest round of complaints.
“Prior to the concerns raised on Friday with the UNA, it was to come up before the UBC board of governors in February but now it won’t do so,” he said.
Stott said the residents’ concerns will be examined.
“We are aware that graveyards are a bad thing and funeral homes are a bad thing,” he added. “We’re going to do some research into this but there’s no evidence that a hospice reduces property values.”

Anti-Choice at the End of Life

2011-01-14T06:07:00.000-08:00

Here's a clip from my article at The Nation:

Particularly for patients over 65, aggressive treatment and their side effects can be more debilitating than what they’re intended to cure. From CPR (reliable statistics don’t exist, but most studies suggest the procedure saves lives less than a quarter of the times it is performed—and often breaks bones) to artificial nutrition and hydration (which employs a stomach tube for feeding even though loss of hunger and the inability to ingest are natural symptoms of the dying process), treatments that don’t actually improve patients’ lives but provide a significant revenue to doctors, hospitals, and medical manufacturer are common practice in our medical system. Yet patients often don’t know that they can refuse treatments or decide where to die. Providing insurance coverage for discussions about end of life care would help restore choice to those facing a path of unwanted treatment and would reduce the cost of healthcare. It’s a win-win prospect, but that’s the rub: Republicans and their “pro-life” allies have characterized any attempts to reform “aggressive care” as cost-cutting attacks on the most vulnerable.

Repealing the Health Care Bill

2011-01-09T18:30:00.001-08:00

From the anti-abortion site LifeNews, a clip on Republican plans to repeal the Obama administration's health care bill. I think it's worth noting the reasons stated for opposing this legislation by groups like this, by Republicans, by "Tea Party" spokespersons (according to Guardian reporter Gary Younge, the Tea Party is not as cohesive, organized, and monolithic in it's objectives as we are meant to believe, hence my quotes). They don't all jive, but they do all serve one purpose: the dismantling of reforms that fall far short of what is necessary to solve the health care crisis but at least moved the conversation and legislation somewhat forward.

Who then benefits from the end of this legislation? Republicans. The medical industry. Anti-abortion groups that wish to legislate what decisions women make about their health options. Supporting power, industry and the exercise of denominational medicine on a pluralistic society. Fine objectives.

House Republicans will vote next week to repeal the ObamaCare law that allows abortion-funding and promotes rationing — drawing opposition from pro-life quarters.
Majority Leader-elect Eric Cantor announced today that the bill will be posted on the Internet on Monday night, the Rules Committee will meet Thursday to prepare it, and the rules for debate will be considered and receive a vote on Friday. Then, the vote will take place Wednesday, January 12.
“Obamacare is a job killer for businesses small and large, and the top priority for House Republicans is going to be to cut spending and grow the economy and jobs,” Cantor spokesman Brad Dayspring said in a statement. “Further, ObamaCare failed to lower costs as the president promised that it would and does not allow people to keep the care they currently have if they like it. That is why the House will repeal it next week.”
Prior to today’s announcement, the new Republican chairman of the panel responsible for starting action on repealing the abortion-funding ObamaCare law says a vote will take place soon.
Rep. Fred Upton of Michigan, incoming chairman of the House Energy and Commerce Committee, said yesterday that a vote on the repeal legislation and a companion bill to ensure there is no abortion funding under ObamaCare, will take place before President Barack Obama delivers his State of the Union address later this month.

Moral Travesty, the Golden Rule, and How We Die

2011-01-03T14:40:00.001-08:00

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.

Will Selecting Surrogate Decision-Makers for Dying Patients Reduce Futile Care Disputes?

2011-01-01T07:38:00.000-08:00

Thaddeus Pope -- ya'll know I'm a fan -- has a new article in the St. Louis Journal of Health Law and Policy addressing the selection of health care proxies, or surrogates, as a means of preventing futile care disputes. When parties surrounding a dying patient disagree about what medical treatments to pursue, if any, law suits can ensue. Pope examines the use of surrogates to reduce the chance of these conflicts, citing both benefits and detriments, and gives us a summary of state laws.

William Colby, the lawyer for Nancy Cruzan's family, writes in Unplugged that the definition of death has changed so drastically in such a short span of time that laws, hospital best practices, and the public, forced to reckon with these changes, have not been able to keep up. Pope's work is always a reminder that the issues surrounding patients' rights and futile care are not straight-forward or simple and that they are constantly evolving.

You can read the full article here

You can read the abstract at Pope's site, Medical Futility Blog

Patients' Rights at Catholic Hospitals: Take Phoenix for Example

2011-01-01T07:03:00.000-08:00

I hope it's a good omen for 2011 that Becky Garrison's article for The Guardian about the excommunication of Sister Margaret McBride is getting such attention. Perhaps the crisis of patient's rights that results when health care is provided with a denominational bias will be addressed?

Here's the nitty-gritty of the story: Sister McBride and her colleagues approved an abortion to save the life of a pregnant mother of three. The local Bishop, Thomas Olmsted, objected to the procedure, saying that the hospital and sister were treating an unborn child as a disease. That was last November. Last week, Olmsted revoked the hospital's Catholic status.

This rift between practitioners of health care and the Catholic Church is not about to go away any time soon. There are about 624 Catholic hospitals in the U.S. The Catholic Healthcare Association, state laws, and individual doctors and practitioners are increasingly at odds with the more conservative bishops who enforce adherence to the Church's 72 Ethical and Religious Directives. These directives, written by the United States Conference of Catholic Bishops, are enforced by the bishop in the area where hospitals operate. If the bishop is opposed to certain medical practices and highly involved with the hospital's operations, the rights of patients can be grossly curtailed.

Here are just a few scenarios that take place across the country every day:

- a rape victim is not told that she can prevent pregnancy by taking emergency contraception, nor is she referred to a doctor or emergency room willing to provide EC

- women are denied tubal ligations at the time of birth (or any other time and are not referred to alternative services), when the procedure would be easiest and not require a second invasive operation

- patients are not informed of how to prevent STDs, AIDS, or unwanted pregnancies, nor are they referred to appropriate services

- the hospital retains the right to decide when a dying patient should be removed from artificial nutrition and hydration, not the patient, the patient's advance directive, nor their family

As Becky writes, CHA broke with the USCCB by supporting the Obama Administration's health care bill, despite the latter's claim that the new bill would skirt the Hyde Amendment (which prohibits use of federal funds for abortion; the amendment is an annually renewed clause applied specifically to Medicaid funding).

The rift between bishops and medical practitioners can only widen as the Church works to bring hospitals in line with their doctrine, doctrine that often runs afoul of federal and state laws protecting patients' rights.

Read comments at Episcopal Cafe

Faith Healing and Childrens' Death

2010-12-31T05:08:00.001-08:00

Another child has died in Tulsa. The First Born church there believes in faith-based healing but is publicly struggling with accusations of neglect in the wake of the death of 9 year old Aaron Grady from complications of diabetes. From Tulsa World:

The Church of the First Born is one of the most frequent offenders in religion-based child medical neglect, said Dr. Seth Asser, a Rhode Island pediatrician who has published a study about children who died after their parents offered them prayer without medical help.

Asser said the Church of the First Born, well-known in Oklahoma, and Followers of Christ, an offshoot of the church that is located in the Pacific Northwest, together are responsible for more child deaths than any other group.

He estimated that one to two dozen American children die each year because their parents neglect to get them medical help, choosing instead to pray for their healing. That is about 1 percent of all child-abuse deaths.

"It's not a big number, but unlike a lot of the others, these are entirely preventable," he said.

Montana and Assisted Suicide.

2010-12-13T15:51:00.000-08:00

The Missoulian gives a run-down of the bills before the legislature in 2011 including one sponsored by Rep. Dick Barrett, D-Missoula that will reinforce the Supreme Court decision last year that ruled the state constitution did not prevent assisted suicide.

"My sense is that terminally ill Montanans really do want to have this choice available to them, not that large numbers of people take advantage of it," Barrett said when requesting the bill draft earlier this year.
"We'll be advocating for Montanans to continue to have access in aid in dying and to make those decisions with their doctor without government interference," Zupanic said.
***
Jeff Laszloffy, president of the Montana Family Foundation, said his group stands against physician-assisted suicide.
"I think one of the big ones we're really going to be fighting is the legalization of assisted suicide in Montana," he said.
Meanwhile, Sen. Greg Hinkle, R-Thompson Falls, is requesting a bill to ban physician-assisted suicide in Montana. He has referred to it as "elder abuse."

The End of Medicaid?

2010-12-13T07:22:00.000-08:00

From Howard Gleckman's recent post at Home Care Association of Florida:

These proposals won’t become law any time soon. But they are evidence that Medicaid could be on the fiscal chopping block. In that environment, it makes sense to get the program out of the long-term care business. And a way to do that would be to replace it with a broad-based insurance system. The Community Living Assistance Services and Support Act, which was created by the health overhaul, will create a voluntary national long-term care insurance program. Program participants would begin contributing in 2012, but wouldn’t b eligible for benefits for at least five years. But there are real doubts about whether CLASS insurance will attract enough middle-class buyers to reduce the burden on Medicaid. If it can’t, Congress should begin to think about what insurance design can, and do so before the Medicaid safety net for long-term care is in tatters.

Praying for Healing.

2010-12-11T04:14:00.001-08:00

Another couple has been convicted of involuntary manslaughter for neglecting to have their child medically treated. Herbert and Catherine Schaible of Philadelphia chose to pray for their son, Kent, instead of seek medical care. He died. The story comes from the AP and states that about a dozen children die each year in faith healing cases.

Discussing the Atlas Study

2010-12-11T03:53:00.000-08:00

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

2010-12-01T19:39:00.000-08:00

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

Euthanasia in the Netherlands, Ten Years On

2010-12-01T19:27:00.001-08:00

Oy, what a crappy article. From the stock syringe image to the "two sides to every story" to the Nazi references, Marco Hochqemuth hits all the typical buttons on this brief piece about how the Netherlands led with same-sex marriage and other nations followed but only two have adopted assisted suicide since the Netherlands did 10 years ago. Sans the religion quotes, it's one of the more cliched articles I've seen in a while.

Assisted Suicide Bill Defeated in South Australia

2010-12-01T19:18:00.000-08:00

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

2010-12-01T18:34:00.001-08:00

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.

Canada's Debate

2010-11-29T16:56:00.000-08:00

The government of Quebec has designated six months for debate of a proposed assisted suicide law. A series of panels are being held to allow doctors, family members, and the dying to tell their stories. In an article for Canada's CBCNews, Lorna Dueck writes the following:

For centuries, Christianity has been prime source material for teaching how to love and care for family and strangers in pain.
Of course we need to be honest with those looking to our distinct truth and what we mean by hope.
For two millennia we Christians have said that this body on Earth is but a shadow of the future self that God has waiting for us after death and we need to regain our practice of how to explain and engage that truth with the reality of dying.
That belief helps us understand that there is no purpose to keeping Grandma, son, daughter or self clinging to life support when a greater beauty comes next.
In debates such as this, how great is our loss if we withdraw the contribution of faith from our collective education and view only individualism as the better way to face the perils of death.
As surely as we wrestle through the physical steps of death, particularly on an issue as fraught with emotion as euthanasia, so will we need to come to terms with the spiritual journey.

Read more: http://www.cbc.ca/canada/story/2010/11/24/f-vp-dueck-euthanasia.html#ixzz16j1OtJnw

Aiding Assisted Suicide in Britain, Reviewing the Laws

2010-11-29T16:46:00.000-08:00

Meanwhile (see prior post), Britain has created a committee that will review their laws regarding family members and friends who help loved ones travel outside the country for assisted suicide.

The move follows a number of cases in which British people have travelled with friends or family to the Dignitas clinic in Switzerland, where terminally ill people are able to end their lives. Although police investigated the cases, none were taken to court. Last year, Debbie Purdy, who suffers from multiple sclerosis, won an historic judgment in the House of Lords that said she had a human right to know if her husband would face prosecution in such circumstances.
Falconer told the Observer: "It is probably a criminal offence to travel with someone to Switzerland to help them to die and yet it is so obvious that nobody on any side of the argument has the stomach to prosecute people like, for example, Dan James's parents." He was referring to the case of the 23-year-old whose parents helped him commit suicide after he was paralysed in a rugby accident.

Christian groups have already accused the commission of being biased.

Assisted Suicide in Scotland

2010-11-29T16:36:00.000-08:00

The Scottish Parliament will vote on December 1 on a bill introduced by Margo MacDonald that would legalize assisted suicide.

Ms MacDonald, whose End of Life Assistance Bill faces a crucial vote in the Scottish Parliament next week, revealed details of a poll showing 77% of Scots agreed people with “intolerable terminal illnesses” should have the option of being helped to end their life.
Just 12% said they did not agree while 11% said they did not know.
A total of 1001 Scots were questioned for the survey, which was carried out for the Green Party in April by polling company Angus Reid Public Opinion.
The proposed legislation has split opinion with doctors’ leaders and religious groups opposed to it.

For more, read here.

Science, A Matter of Belief.

2010-11-28T15:55:00.000-08:00

Tom Junod, in the latest issue of Esquire writes:

We are not going to live forever. We are not going to have our life spans scientifically amplified to biblical lengths. We will not be able to take pills that will give us the musculature of superheroes or allow us to gorge ourselves while enjoying the health benefits of starvation. We will reach our limits, and, with some hard-won variation, those limits will be — they will feel like — the same limits we humans have always had. We will remain human where it counts, in our helpless and inspiring relation to our own mortality.

Does this sound obvious? It shouldn't. Indeed, what I should have said from the start is that I believe that we are all going to die, in that science increasingly believes otherwise — and science increasingly has become a matter of belief. Its logic, once pointed at the eradication of disease and infection, is now inexorably pointed at aging and death, which is to say the ultimate questions that were once left to religion. Over the past six years, I've written several science stories for Esquire's annual Best and Brightest issue, and most of them were about scientists who began contending with a particular disease but wound up contending with aging and death as disease — as something that can be cured.

(h/t Andrew Sullivan at The Atlantic)

The Pope's Condom Conundrum

2010-11-26T06:25:00.000-08:00

An excerpt from Katha Pollitt's latest post on the Pope's comments that condoms can be used in some cases to prevent disease, but not to prevent pregnancy:

The doctrine of the secondary effect, whereby a Catholic may perform an immoral act if its primary effect is moral, permits a doctor to give a dying patient painkillers that may hasten death: the primary purpose is relief of suffering, not euthanasia. By the same logic, the church has always allowed for "just wars" and the deaths of innocents that inevitably take place in them. But, with the exception of those nuns in Congo, this reasoning is rejected when it comes to birth control.

If you ask me, the Pope's on a slippery slope. Katha points out that pregnancy is a deadly prospect in so much of the world. Will the Pope not recognize this as a hardship on women? What about STD prevention? The lives of young girls ruined by teen pregnancy? The doctrine of the double effect is a fine theoretical work. But it has little to do with a raped woman in Congo or a dying patient in Queens who just wants to pass without pain.

Engaging Loved Ones with Grace this Holiday

2010-11-25T10:38:00.000-08:00

For Thanksgiving, Engage With Grace is asking us all to raise an important topic of discussion while we're together celebrating: our end of life care preferences. Here's the slide with 5 questions we should all discuss: http://www.engagewithgrace.org/content/theoneslide.pdf

From the project:

For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” – it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.

We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.

Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team.

How We Die.

2010-11-23T15:53:00.000-08:00

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

The Path of Aggressive, Futile Care

2010-11-21T05:40:00.000-08:00

From Health Leader Media an article on what they call the elephant in the room, futile care, and what those of us watching the health care crisis unfold in the U.S. see as the number one issue, not only because of cost but because of violation of patient autonomy and well-being:

Once again, the folks at the Dartmouth Atlas Project have pointed to an elephant in the room. There the beast sits—the enormous amount of far too aggressive, painful, costly and often futile care, which too many doctors and hospitals provide during a Medicare patient's last 14 or 30 days of life.
The Dartmouth team's report, entitled Quality of End-of-Life Cancer Care for Medicare Beneficiaries: Regional and Hospital-Specific Analyses, shows the wide, and hard to explain, variation across the country in care provided in the last month or two weeks of a patients life. Its data tables look at cancer care practices within regional referral networks and specific hospitals for 235,821 end-stage cancer patients who died between 2003 and 2007.
The Atlas shows that this aggressive care was provided to patients whose type and stage of cancer predicted extremely poor prognosis, even for the short-term, and for whom such care is likely futile. Cancers like pancreatic, lung, and some types of leukemia and lymphoma were included in the analysis.
This is care that many patients would reject if they were told the truth: that there is very low probability their time spent in a hospital—often in an intensive care unit—will increase their number of days, the authors say.
In some cases, aggressive treatment with chemotherapy, endotracheal intubation, feeding tube placement and cardiopulmonary resuscitation, can hasten death, or at least severely weaken the patient and limit their ability to communicate with loved ones in the time when that's of greatest importance.
Is this what some might truly want? Some, perhaps. But for others, decidely not.

Read the entire post here.

The Doctor's Role in Patient Consent

2010-11-21T05:14:00.000-08:00

More and more I encounter the meme that doctors should begin receiving spiritual sensitivity training, training that allows them to be more sensitive to a patient's moral and religious values. While the details of what this exactly means are vague, I'd rather my doctor tell me what is medically proven, not what he thinks his knowledge of my religious values dictates. From a recent post at Science + Religion:

... religion informs health values for many patient populations and, as such, deserves consideration within the clinical encounter. If a patient adheres to a religious worldview, then the physician should learn the skills to elicit these values (noting the patient to be the foremost interpreter of these values for themselves) and help the patient to make decisions consonant with their own value system.

We already have an environment where doctor-patient communication is in need of improvement. Asking doctors to tailor information for patients based on their assumptions of the patient's moral and religious values is far too near the paternalistic communication pattern well entrenched. Belief is never monolithic. While the Catholic church may oppose removal of some patients from artificial nutrition and hydration, it would be ethically wrong for a doctor to assume that a patient, because they define themselves as Catholic, would be as well. It seems to me that calls for greater religious sensitivity are misdirected and based on assumptions about moral and religious values, assumptions that are far too simplistic to capture and react to the plurality of many individual faith understandings.

The role of the doctor is not to alter disclosure of medically viable procedures but to inform of all possibilities and options. The patient, in consultation with his or her family, must then consent. And that is the true meaning of informed consent: doctors inform and advise; patients choose the course.

How to Live, From the Dying.

2010-11-18T04:12:00.000-08:00

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.

Keeping Them Alive Because You Love Them.

2010-11-16T10:08:00.000-08:00

Michael Vitez writes for the Philadelphia Inquirer's online site, philly.com, about the legal and emotional challenges of end of life care that often looks like undue pain and stress for the dying. It's a shocking article about futile care and medical proxies. I suggest you read the entire thing at the link above but here's a clip, below.

I ask, in all sincerity, what the difference is between Prince and Terri Schiavo's family who wished to keep Schiavo alive because she was "completely vulnerable" to them? Not only does the conundrum of futile care and proxy decision-making cause us to think about the economics of health care but, more importantly, about how we love.

And how, as Vitez rightly asks, do we as a culture determine what is best for the patient?

Prince Pulido loved his mother. She named him Prince, after all.
And he couldn't let her go.
It didn't matter to him that nurses at Abington Memorial Hospital thought he was harming her by keeping her alive, or felt he was unrealistic - believing that stem cells could regenerate her brain.
This was his mother, she wanted to live, and she had always bounced back.
For more than a year, Maria Pulido was kept alive on a ventilator. She had respiratory failure, heart disease, dementia, and diabetes, and had both legs amputated, one after gangrene. By last winter, medical records show, she was in or near a coma - unresponsive, couldn't follow commands, would react only to pain.
Prince knew different. She smiled at him. He saw the gleam in her eye.
On May 14, the breathing tube in her throat got clogged and fell out during suctioning at a nursing home. She went without oxygen for 10 minutes and suffered brain damage. Even Prince could see her stare was blank. Still, he continued life support.
He believes in God and in miracles. He's a Philadelphia fireman who races into burning buildings. There's always hope.
Ten times between June 2009 and July 2010, Maria Pulido went by ambulance from a nursing home for ventilator-dependent patients to Abington's intensive care unit, where she spent 69 days and accumulated charges of $1.2 million.
What, if anything, should America do when families insist on continuing life support even though doctors and nurses believe it just prolongs dying?

(h/t Carla Axtman)

Joyous Days.

2010-11-13T11:16:00.000-08:00

From my spam folder today:

Despite the fact that each of us will certainly die, there are few books written about death and dying, because these are considered "taboo" subjects best left in the shadows for as long as possible. Yet, it is important to think about death not only when the inevitable is near, but also before it closes in.

I am a scientist seeking to understand the nature of reality and, in this context, have published a book entitled "EXPLORING DEATH: WHAT YOU SHOULD KNOW ABOUT DYING" which may be helpful to you. The first part of the book describes various aspects that are associated with the topics of death and dying, such as thinking about death, causes of death, death rituals, historical and unusual deaths, and the definition of death. In the middle section, evidence is presented strongly suggestive of the fact that you (your essence, your consciousness) survive the physical death of your body (pre-death experiences, near-death experiences, out-of-body experiences, ghostly phenomena, after-death communication). The last portion of the book discusses what may happen to you after your death.

"EXPLORING DEATH: WHAT YOU SHOULD KNOW ABOUT DYING" is now available in both paperback at kindle formats at the following amazon.comwebpages:

Paperback: http://www.amazon.com/Exploring-Death-Should-About-Dying/dp/1453721371/ref=sr_1_1?ie=UTF8&s=books&qid=1287148146&sr=1-1

Kindle: http://www.amazon.com/Exploring-Death-Should-About-ebook/dp/B004A157Q2/ref=sr_1_1?ie=UTF8&m=AG56TWVU5XWC2&s=digital-text&qid=1288707506&sr=1-1

Thinking and writing about this topic has helped me to overcome my own fear of death and, if you read my book, you may come to realize the following truth: "The day of your death is more joyous than the day of your birth".

Framing Pain as Necessary.

2010-11-09T16:36:00.000-08:00

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)

What Happens When You Opt Out of Dialysis?

2010-09-30T07:49:00.000-07:00

If quality of life is the most important objective for a terminal patient -- and for doctors, caregivers, and family members -- during the end stages of the dying process, how are the pros and cons of dialysis weighed? Will the patient be burdened by dialysis or experience greater discomfort without it?

GeriPal does a good job of examining a new study in the Journal of Pain and Symptom Management that looks at quality of life for those who deny dialysis. It's an intriguing and fairly thorough study that compares renal disease suffers with cancer suffers -- but nonetheless, doesn't give us a clear answer. And such studies may never conclusively do so. The more time I spend watching how we manage emotional and physical pain, the more I better understand how relative pain is. As individual as we are in life and taste, so too are we individual in our definitions of pain. But a study of this sort does go a long way to take dialysis off the path of immediate response for terminal patients and to help us think about what matters: the patient's comfort.

Writes Alex Smith:

What are the clinical implications and remaining questions?

I usually tell patients and family members that dying of renal failure is "peaceful." I say, "you generally become more and more drowsy, and drift off into a sleep from which you don't wake." This article challenges those words. While I think the final hours and days may resemble that trajectory, the last month as a whole is actually a time of relatively high symptom burden. Clinicians should attend to these symptoms as aggressively as they do for patients with advanced cancer.
The degree to which these symptoms were due to renal failure or co-morbid conditions is not clear. These patients were not young healthy folks who refused hemodialysis, they refused because they were elderly (mean age at death 81) and had a high burden of chronic conditions like heart failure. Comorbid conditions may be as great a source of suffering in the elderly as the terminal condition (a very Geriatric perspective).
We still have no randomized controlled trial of hemodialysis vs. no hemodialysis for elderly patients with multiple chronic conditions. We don't know if "conservative management" (no dialysis) is actually associated with a shorter time to death as is widely assumed. We don't know if hemodialysis is associated with a greater burden of suffering, or if (maybe) the trade-offs in terms of reduction in swelling and shortness of breath by using dialysis are worth the hassle, risks, and time spent hooked up to the machine.

Read the whole post at GeriPal.

"The End" Special Issue by Scientific American: Organ Donation

2010-09-05T12:26:00.000-07:00

Scientific American editor, Mariette DiChristina, writes in her introduction to September's special issue that the concept, "The End," had been picked up and put down in their offices for years because of "the difficulty and possible discomfort about some of the topics we wanted to cover."

I can't speak for SA's regular readers, but DiChristina needn't have worried. The issue is a treasure trove of intriguing questions and answers, ones too important and timely to be ignored: Does acetaminophen (Tylenol) reduce feelings of rejection and paranoia? (I say let's do a test study on the Tea Party.) What are the chances the world will end by asteroid impact? (1 mill in next 100 years) Runaway global warming? (2 in next 200 years) Killer pandemic? (2 in the next 30 years) What are the four stages of body decomposition? (Fresh, Bloat, Active Decay, and Dry); What cultures are disappearing?; What scientific discoveries should rightly come to an end? (Daylight savings time, the space shuttle, landfills, teflon, among others); And how much time is left for glaciers? Gold mining? (20 years) Time? (Yes, how much time does time have?)

But the articles that most speak to my own writing interests -- patients' rights, primarily -- are great too. Thomas Kirkwood addresses why we can't live forever (pp 42). SA's various advisory board members look at anticipated reproductive trends in the next decades ("What Comes Next" pp 92). And Robin Marantz Henig contributes a brief but spot-on look at organ donation ("When Does Life Belong to the Living?" pp 50) and the contested definition of death. She writes:

To address this issue [establishment, with the advent of organ transplantation, of "dead-donor rule" in 1960s to prevent organs from being taken from the living; in essence, the definition of death], a blue-ribbon Harvard Medical School panel met in 1968 and arrived at the concept of "irreversible coma," more commonly known as brain death. By this term, they meant that the cerbral cortex -- the seat of consciousness, language, empathy, fear and everything else that makes us human -- is irreversibly destroyed. Destroyed, too, is the brain stem, which orchestrates such basic physiological functions as breathing, heartbeat and homeostasis. Modern medical machinery may keep the body oxygenated, but the person inside is gone.

The definition of death has been reviewed periodically since then by groups of bioethicists, and although the terminology sometimes changes, the substance remains basically the same. The concept of breain death (often knows by the more modern and clinical term "the neurological standard of death") has since become encoded into law in nearly every state in the U.S. Ethicists and the law agree: a person whose cortex and breain stem are destroyed has ceased to be alive, even if the body is warm and pink. That body is no longer considered a person. Instead it is a heart-bearing cadaver.

All this means quite a bit to the hundreds of thousands who wait for years on organ recipient lists. And it means a lot too to "pro-life" activist groups who would like to remove decision-making from individuals and family members burdened with terrible choices in dire situations.

Think Terri Schiavo (and the Terri Schindler Schiavo Foundation) or Wesley J. Smith (a staunch, vocal advocate for the Schiavo family and removing such decisions from doctors or patients who wish to determine their own end of life care) or the United States Conference of Catholic Bishops (which as recently as November changed the guidelines in all 624 of the U.S. hospitals they oversee to leave the question of removal from artificial nutrition and hydration up to hospital management and not the patient or family, living will or advance directive be damned).

Citing the three cases in Denver between 2004 and 2007 in which the Pittsburgh Protocol (waiting a full two minutes after removal from life support before removing organs from a "brain dead" patient, despite risk of organ deterioration) was violated for the sake of needy infants, Martanz Henig makes a fascinating point in her article that notes the root of the medical profession's tip-toeing around the definition of death. Robert D. Truog of Harvard supported the doctors' (and the hospital ethical board's) decision, saying that the "dead donor" rule was unimportant when considering whether an injured person's recovery was impossible and what the family consented to. But:

...Arthur L. Caplan of the University of Pennsylvania, recoiled at Truog's suggestion, mostly because of how it would be interpreted by an already skittish lay public. "We ought not underestimate public unease," he said. "Making people wonder if you're going to cut corners on their care in order to salvage organs from them is a very dangerous area to be in."

In other words, altering the "dead donor" law to allow, say, waiting less than two minutes, would deter the (already wary) population from signing up as organ donors. The number of people each year who die from lack of viable, transplant-ready organs (currently about 7000) could increase because of a fear of doctor's ethics regarding the definition of death. (See my post here some months ago regarding a New York Times article on organ donation which points out how rather arbitrary that two minute designation is.)

While I think that Caplan's fears are legitimate, I'm more interested in asking why. The medical profession has a long history of discomfort and distrust with minorities and females, particularly African Americans. Often this distrust, as with abortion and end of life care, is fueled by political motivation ("black genocide") or exceptions that don't prove a rule (Terri Schiavo again; there are 30,000 patients like Schiavo in our hospitals any given year). In other ways, history has proven that the medical profession preys on patients: futile care, aggressive elder treatment, lack of research into disease causes (see Barbara Ehrenreich's Cancerland) or lack of discipline in telling patient's the truth (because, you know, they can't handle it).

But this distrust should not be used as an excuse to let thousands of people die, to cruelly prolong the lives of the "heart-beating cadaver." I'm not saying that fear isn't real, I'm saying that it results from a lack of bodily autonomy. As recently as the 70s, women would go in for a simple biopsy of a breast lump and come out with full mastectomies. This kind of patriarchal, "doctor knows best" is a wound that the industry has brought on itself. It exists. It is real. But it should be combatted -- not by playing into it with arbitrary definitions that become arbitrary rules but by addressing it candidly. For the sake of patients, a frank discussion about the way death has changed over the past 40 years must be had.

Hospice Stories

2010-08-30T10:53:00.000-07:00

North Country Public Radio is doing a series on hospice, showcasing individual stories to explain what hospice is and how it works. The first episode, linked above, features the Gallagher family from Serenac Lake. Fighting isolation is one of the issues discussed as a priority of hospice.

The simple truth is that Bill is dying. It’s a fact that can’t be changed or denied.
But Hospice can give the Gallaghers resources and ideas and friendship and support that allows them to maintain more control right through the process.
“To know that you can call them any time, so you're not walking this alone,” Tomi says. "I think this is the biggest thing that they have going. You’re not alone.”

The Virology Journal Retraction: Desecrating Faith, Incapacitating Science

2010-08-13T09:56:00.000-07:00

My other hat is subsidized by NYU, so when the recent controversy about an article at Virology Journal -- a diagnosis of apostle Simon Peter's mother-in-law using the passages from the books Matthew, Mark, and Luke of the bible, by Chinese University of Hong Kong researchers -- came across my screen, I couldn't help but think about a not-so-long-ago case of journal retraction. Hark back with me to 1996 when a seemingly-devilish physics professor from NYU, Alan Sokal, decided to test a little grumble of his. As Sokal eventually explained, with a quote and a statement, at Lingua Franca:

The displacement of the idea that facts and evidence matter by the idea that everything boils down to subjective interests and perspectives is -- second only to American political campaigns -- the most prominent and pernicious manifestation of anti-intellectualism in our time.
-- Larry Laudan, Science and Relativism (1990)
For some years I've been troubled by an apparent decline in the standards of intellectual rigor in certain precincts of the American academic humanities. But I'm a mere physicist: if I find myself unable to make head or tail of jouissance and différance, perhaps that just reflects my own inadequacy.

To test his inadequacy, Sokal wrote a parody article for a special "Science Wars" issue of Social Text, a reputable publication, titled, "Transgressing the Boundaries: Toward a Transformative Hermeneutics of Quantum Gravity." It was published. You can read his account of the so-called "Social Text Affair" here. There was some ugly fall-out, accounts and recounts (some of the noise, I imagine, owing to the fact that Sokal chose a pub edited by peers of the same university, NYU). It wasn't quite a mass scandal but it was pretty damn ugly.

As the modest (new and green) editor of a modest (non-scientific) publication on religion and media, I'm apt to see the editor's side in a small way. I edit and approve some stuff that I would never designate as representative of my own views. It's good to have diversity of opinion; what shakes out in the curation and discussion is sometimes insightful and instructive. But social science -- nor faith, nor "tolerance" -- isn't science.

Some months ago now I had a post here about a Christian Science Monitor story that made the case for increased training of doctors in "spirituality sensitivity." As I stated in the piece, I found it absurd that -- necessary interpersonal skills aside -- doctors should, when making diagnoses, account for the 75% of Americans who think God can heal them. Be sensitive to a patient's beliefs but don't short a patient of the facts simply because they (and you) want to hold out hope for a miracle. A diagnosis (however variable) is a diagnosis, regardless of whether the patient (or doctor) believe in God or Allah or the green monster.

I grant that the body is inexplicable; I've seen patients who have outlived their diagnoses, whose pain defies drug research, whose will to live makes them indomitable. But these are the rare cases that don't make the rule, and if science can't explain a 96 year old woman with inoperable cancer, on a respirator for 3 years and still, if not kicking, alive, I accept it as proof that there are too many variables for us to make sense of it all. We don't know everything (nor do we have to) but we do know what has been scientifically proven.

So when a story like the "research" of an illness experienced 2000 years ago makes the pages of Virology Journal and then is noisily retracted, I think Sokal was onto something. He writes, again from his Lingua Franca piece:

While my method was satirical, my motivation is utterly serious. What concerns me is the proliferation, not just of nonsense and sloppy thinking per se, but of a particular kind of nonsense and sloppy thinking: one that denies the existence of objective realities, or (when challenged) admits their existence but downplays their practical relevance. At its best, a journal like Social Text raises important questions that no scientist should ignore -- questions, for example, about how corporate and government funding influence scientific work. Unfortunately, epistemic relativism does little to further the discussion of these matters.
In short, my concern over the spread of subjectivist thinking is both intellectual and political. Intellectually, the problem with such doctrines is that they are false (when not simply meaningless). There is a real world; its properties are not merely social constructions; facts and evidence do matter. What sane person would contend otherwise? And yet, much contemporary academic theorizing consists precisely of attempts to blur these obvious truths -- the utter absurdity of it all being concealed through obscure and pretentious language.

It's the premise of the Virology article (more on the retraction here) that I have issue with. With little evidence (well, actually, none) beyond bible verses, the researchers go through a litany of potential afflictions, ruling out the most obvious, then decide that they've identified the earliest recorded case of influenza. Writes, Tara C. Smith at Aetiology:

They go on to dismiss a significant number of other viral pathogens, as well as demonic influence (phew! Those are so hard to get rid of):
One final consideration that one might have is whether the illness was inflicted by a demon or devil. The Bible always tells if an illness is caused by a demon or devil (Matthew 9:18-25, 12:22, 9:32-33; Mark 1:23-26, 5:1-15, 9:17-29; Luke 4:33-35, 8:27-35, 9:38-43, 11:14) [1]. The victims often had what sounded like a convulsion when the demon was cast out. In our index case, demonic influence is not stated, and the woman had no apparent convulsion or residual symptomatology.

It's hard to see how a scientific investigation can be conducted using un-proven conclusions or assumptions -- particularly one's that involve the casting out of demons by Christ.

Yet, the point of this post isn't to brow-beat Virology Journal or to praise Sokal for his "gotcha," but to point to a prevalent use of faith (or political ideology or social objective) to address (and distort and refute) scientific issues. From Intelligent Design (read Lauri Lebo's recent article at Religion Dispatches about the Discovery Institute's continued efforts to distinguish intelligent design from creationism for the sake of having it taught in science classrooms), to abortion (faith that a fetus is a person entitles a fetus to constitutional rights?), from global warming (unbelief in things seen is faith in capitalism) to end-of-life rights (accepting that elders will die is somehow a denial of the "sanctity of life," and a last shot at redemption through suffering) political ideology, faith, and ignorance of scientific fact, continue to make scientific inroads.

Why make faith into a science? (I get making politics into a science and even making ignorance into a science, power is a splendored thing) Isn't one of the beauties of faith that it is free? That it's inexplicable and magic, outside explanation? That it's changing and personal and untethered to things like gravity and research, location and law? And isn't that the beauty of faith? I can't help but feel that the merging of faith and science -- not as a study of intersections and influences but a reliance on one to somehow prove or disprove the other -- somehow desecrates the former and incapacitates the latter.

Prisoners Are Expensive, Elders Aren't.

2010-08-09T16:19:00.001-07:00

So why is it acceptable to discuss the cost of end of life care in prisons when discussing end of life care "outside" sends media and conservatives into a tizzy? Mention the savings involved in getting the dying into hospice even one week sooner and the media (and Wesley J. Smith-heads) freak about the "sanctity of life."

Yet, this article about elderly, dying prisoners raises the money question, and invites more:

Won't the state be responsible for these patients even if they're released, via Medicare and Medicaid? Why don't these government programs apply to prisoners? What would the quality of life be like for most of these (vast majority) men when they're released. How many have somewhere to go? And is terminal illness enough to make society forgive these (convicted) rapists, murders, burglars? Is bed confinement? A respirator? Chemotherapy?

HFA Online

2010-08-09T13:08:00.000-07:00

The Hospice Foundation of America, thanks to funding from the Centers for Medicare and Medicaid Services, has a new information center online. You can access it here: http://www.hospicefoundation.org/infocenter

Caregivers and Sleep

2010-08-04T06:46:00.000-07:00

From the current issue of Stanford's Pathways, a publication on poverty, inequality and social policy:

AYawning Gap

As the 24/7 economy continues to spread and take hold, a rising number of workers are being asked to work evenings, nights,

weekends, and rotating shifts. These “nonstan- dard work schedules,” which are especially promi- nent among low-income workers, can be difficult to reconcile with family responsibilities. If the children and spouses of such nonstandard work- ers are operating on a standard daytime schedule, the result may be a “burn the candle at both ends” lifestyle in which sleep is compromised. Although the candle-burning lifestyle is clearly increasing in frequency, we don’t know too much about that lifestyle and, in particular, who is participating in it. Are, for example, men or women losing more sleep because of nonstandard work schedules?

According to new research by David J. Maume, Rachel A. Sebastian, and Anthony R. Bardo, the preliminary answer is that women are the main sufferers here. Drawing on a survey of 583 retail food workers who were working nonstandard schedules, the authors found that women expe- rienced significantly more sleep disruptions than did men. Although underlying health differences between men and women accounted for some of this difference, the more important reason why women suffer from disrupted sleep is that they tend to be responsible for caregiving. The simple implication: If you have to combine a nonstan- dard work schedule with caregiving, the only way to get by is to steal from sleep. And hence a new “yawning gap” is emerging right beside the more famous gap in pay.

David J. Maume, Rachel A. Sebastian, and Anthony R. Bardo. 2009. “Gender Differences in Sleep Disruption among Retail Food Workers.” American Sociological Re- view, 74(6), 989-1007.

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

2010-07-26T09:55:00.001-07:00

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.

Far far away.

2010-07-14T17:38:00.000-07:00

otherspoon will be quiet for the next week as I head off to Lake Desolation to escape the internets and to finish my book. I'll miss you. A

Removal from Dialysis or Murder?

2010-07-12T16:09:00.001-07:00

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.

Knowing the Facts

2010-07-12T09:58:00.001-07:00

Two True/Slant journalists are having a back-and-forth about the "right to die." The first, Ethan Epstein, has just learned about the Hemlock Society and basically says that if people want to end their lives, let them go at it. What legalizing AS would do is allow doctors to kill patients.

It's a juvenile argument that anyone following the conversation could debunk any number of ways: suicide is not assisted suicide, many suffering patients don't want to end their lives violently (guns, etc.), our medical system has developed in such a way that patients are subjected to futile, life-prolonging care that they would never have agreed to had they been informed and prepared, artificial life-sustaining methods of keeping patients alive are hard to end once they are begun, and doctors provide their patients with the means (like a gun seller does, like a Henkle knife sales man does, like a hardware salesman when he sells a rope does). The patient must self-administer any lethal medication. Humans don't have a right to die, he says. Geesh. Want me to go on?

He's got no history on the issue, no life experience of it (apparently), and no knowledge of the current bioethical or political debate.

His colleague, Sahil Kapur, weighs in and debunks Epstein's "logic." It will be fun to watch this dialogue if it continues.