Post Mortem

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)

Hospice Experiences.

I had an experience last week at the in-hospital hospice where I volunteer that has left me wondering deeply about the roles of volunteers, patients, family members and hospice nurses in end of life care-taking.

Because I visit only once a week and the stay of patients there tends to be quite short, there is little continuity to my visits. I don't often see the same patients and their families more than once or twice. While there are 18 beds, the number of weekly deaths is high enough to render most rooms with new patients and emotional situations each week; I approach the rooms seldom knowing who is in them -- beyond their name -- or what the emotional situation is -- beyond brief notes in the volunteer book.

I am a volunteer and I often find myself saying that I am just a volunteer. My role is to be whatever the family members need, to fetch water or coffee for them, to run to the pharmacy for the nurses, to sit by the beds of the dying so that they are not alone; whether they know they are alone or not is often outside our realm of understanding. It is not uncommon for patients and their families to see me as another channel of communication for needs. They will ask me to call the nurse, ask if they can see a doctor, tell me what they think a patient needs. But the culture on the floor is -- necessarily -- that I shouldn't intervene with the care the nurses provide and should not undermine their treatment. I respect this and try to defer requests unless they are pressing or necessary. I try to be a helpful presence, not a factor.

I usually enter a room, introduce myself, ask the patient or family if I can sit with them, see if they are willing to chat, or I simply act as quiet company to them.

When I arrived at the hospice last week, it was for a new evening shift; my schedule had been changed to accommodate my weekly engagements and those of the hospice. I immediately noted, with some dismay, that a nurse I found to be gruff and dismissive during prior encounters was on duty. I respect her -- she has apparently been working on the floor for some many years -- but I distinctly felt that her view of volunteers was that we were meddlesome and in the way. And in my new role, I often agree with her, wondering what I am supposed to be doing.

I began to make visits to the rooms; the equivalent of knocking on doors in a neighborhood, not knowing what one is to ask or find. I heard a respirator running it's mechanical in-and-out cycle before entering one room; I've learned that respirators in a hospice ward can mean very few things: a young patient who was resuscitated but will not survive; or a family that still hopes against odds for their loved one to survive, for instance. When I entered the room, a woman, clearly once attractive but now quite haggard, sat on the edge of her chair next to the bed, her eyes wide in something like shock, her body poised in agitation, her hands never still. I introduced myself and asked if I could stay with her for a little while. She said nothing but shook her head slightly.

Because there was no other chair, I got down on my haunches against the wall beside her chair. "He looks very calm," I told her. She directed her blank and pained stare to me.

"Is the respirator bad?" she asked me. Immediately I knew I was over my head. I didn't know the patient's diagnosis (though he was in a hospice ward) nor the history of how he got there. I asked her when they arrived. That afternoon.

"Are there many respirators here?" she asked again, her numb face fixed on me.

"Respirators are not uncommon," I told her. She looked at her husband, a large man who filled his bed from side to side, the bulk of his large body slightly shaking with each pump of the mechanical machine that blocked a hole in his throat. His face had fallen, his jaw hanged open, his eyes were still behind the lids.

"Did I do the right thing?" she asked turning to me again.

My body tingled with the memory of how it feels to not know what to do as a family member, a care taker, in such a situation. Nothing prepares us to be informed consumers at a time of death. We are left to hear the options, to ask for the doctor's recommendations, to wrestle those with our own powerful hopes of keeping the patient, a father, a spouse, in our lives as long as possible.

"Whatever decisions you've made, I'm sure you've done the best for him that you can," I told her. "Don't be hard on yourself," I said to her, "You're making decisions the best way you know how." I didn't sound very reassuring to myself.

I heard someone approaching from behind. Their daughter, about 20 years old, drove up to the doorway on a mechanized scooter, her legs withered and resting without purpose on the machine's footboard. She introduced herself and continued to chatter in one long string about where she had just come from: the drug store. She had purchased jelly beans and spent the next five minutes telling me in a sing-song tone about them: how she had selected them, how one can match the color of the jelly bean to a chart on the back that tells you it's flavor, how much they cost. The other snacks she might have bought but decided not to. She barely acknowledged her mother or her father. We might have been sitting in a park or riding the subway; two strangers talking about jelly beans in order to fill the time.

The respirator machine beeped a high and disturbing tone, interrupting the daughter's buoyant banter and the father's in-and-out breathing. Then again. His breath halted, held, sputtered, then began again The mother jumped to her feet, her lost hands fluttering over the machines, the tubes, the face of her husband, like two panicked birds caught in a room and unable to find the window. She was so agitated by the routine beeps that I thought perhaps fetching the nurse would be helpful -- a knowledgeable voice to explain to her what was happening. They had only arrived a few hours before. Maybe no one had yet had a chance to speak with them about what was happening, where they were, that their husband and father was dying.

"What's wrong with the machine, maybe it should be adjusted. Why does it keep doing that," she said in her sustained panic, a pitch higher now. Please can you get our nurse." She said the nurse's name. The name of the stern nurse I work so hard to avoid.

I found the nurse in the break room, eating her dinner out of a plastic container and surrounded by a few other colleagues.

"Excuse me," I said. "I'm sorry for interrupting. The wife of patient X is very upset. She's asked for you."

"Listen," said the nurse, "How about you stay out of that room, OK?" I nodded my head in humiliated obedience, pushing the door behind me closed so that no one outside would hear our conversation. "That man's got multiple diseases and they're still act like he's going to get better and go home," she said. I stood still for a beat, perhaps with my own mouth hanging open. Then I compliantly shook my head yes and turned to leave. I heard her push her chair back to reluctantly stand and follow me out of the break room.

I slowly made my way to a few other rooms; one patient clearly in the end of life stage, very close to death, had a volunteer sitting with her, holding her hand and playing war era music on an iphone for her. It seemed peaceful but I wondered if the patient wanted a stranger holding her hand, if she liked the music. She was hispanic; maybe her taste in music had been different, maybe she didn't even know the volunteer was even there.

In another room I found myself sitting with an old Southern black woman, her face worn and wrinkled as an old pair of shoes, a colorful scarf tied around her head. She had somehow made her way from her bed to an armchair in the corner. She asked me to stay and talk with her and, because there was no other chair, she directed me to sit on the end of her bed (something that all volunteers are told not to do). I hesitantly sat down, then in time found myself swinging my feet and enjoying her colorful stories of family, the old South, her work and her love of New York. She was spry and so long as she was talking about events of decades ago, she was coherent. But when she approached recent events in her conversation, her memory was disjointed and her talk fantastical. She was getting ready to go home, she told me. We talked and laughed for nearly half an hour as she sat comfortably in the chair at the end of her bed, two long tubes running from under her clothes to the clear bags hanging on a metal stand by her bed.

Her nurse, a woman that I had grown fond of during my routine visits, entered the room with a pen and a few papers in her hand. I asked if it was ok that I sit on the end of the bed.

"You stay right there, honey," chirped the lively old patient. "You ain't hurtin' a thang," she said in her beautiful Southern accent. The nurse gave me a nod of approval, checked that the tubes were not too stretched, then held the paper out to the patient and asked her to sign on a dotted line. Immediately, the old woman changed, protested, proclaiming that she wouldn't sign anything unless she knew what it was. "What is it? Just tell me what it is," she exclaimed. The nurse didn't. She pushed the patient to sign, the patient, growing louder and louder, refused, pushing the papers and the pen away.

"I know what you're trying to do, you're trying to take my money away. That's what that paper is. You wanna get my money. They're always trying to get my money," she said to me. In a calm voice I said to the patient, thinking perhaps our rapport would calm her, reassure her, and using her name, "No X dear, that's not what the paper will do." I didn't know what the paper was. I suspected it was a DNR order.

"I'm not signing anything unless I know what it is," she yelled again. Just then the gruff nurse walked in the door behind me.

"You," she said to me. I need you to go to the pharmacy. Get x for me."

"Don't I need a prescription?" I asked.

"No," she said sighing. She wrote the name of an ear drop drug on a paper towel and off I went to the third floor pharmacy, feeling as though I had been told again, in another way, to leave and not at all certain that I shouldn't. When I returned to the hospice ward, I found the gruff nurse, handed her the ear drops with a "ma'am," and went to the break room to grab my coat.

In the break room, the nurse who had been unable to get the old black woman to sign the paper said as she looked up at the news program on the TV, "She's a difficult patient." I nodded my head.

"I'm leaving,"I said. She clapped her hands twice, whether at my announcement or something on the TV program I didn't know. I was a half hour before my shift was over when I left the ward. I was done.

How Do We Productively Talk About Death?

From Patrice Villars at GeriPal, a discussion of how palliative care practitioners - and the medical profession - talk about death. She starts with a reference to a talk she attended at the recent HPNA/AAHPM conference by Diane Meier, MD titled “Update on National Palliative Care News: How the Big Picture Affects You.”

My first reaction to the post is to disagree. Much like religion, death tends to be discussed in society in a bifurcated way where all nuance and practicality - and actuality - are lost. It's either a screaming, scary nasty thing to avoid at all costs or a saccharine-tinged "passing" into a "better place. (With religion, the portrayals are of nutso crazy bible-thumpers or benign do-gooders with the best of intentions.) But with both death and religion, neither portrayal or language-set is wholly accurate/true.

My other - new - hat is editor of TheRevealer.org (relaunching in the next few weeks). The site looks at how religion is portrayed in the media. And I think the same work toward nuance and understanding there regarding religion reporting is applicable to death "reporting." And so, if avoiding the exaggerations of death and getting at the practicality, complications, nuance and inevitability requires readdressing how we discuss death, then yes, examining the terms used is important and beneficial. But if we're devoted to creating a lexicon about death that further removes us from its actuality, then I say we're on the wrong path.

Here's a great clip, though I recommend you go to the site and read the rest of it, and the comments too:

The new (to me) hot word in the political arena is “optics”. It’s all about how you see things - perception. Perception is in the eye of the audience. (Kind of like pain or shortness of breath is what the patient says it is.) We want and NEED to have a relationship with our patients and families who are part of the general public. We need them to perceive us as helpful and valuable both to serve them and to promote our vision of a holistic health care environment that matches patients’ preferences with appropriate care. So why do our patients/families, through the media and through our work, often NOT see us as helpful and valuable, but, as my son once proclaimed me, as “The Mistress of Death”? What, we must ask if we want to sustain a future in this relationship, is our part?

Dr. Meier observed that we use language that associates palliative care with dying. Consistently. Language is important. Language creates perceptions and (may) define our relationships with the people we care about most. Consider that the tiny line in the proposed health care bill allowing physicians to be reimbursed for having a conversation every 5 years with their patients about advance directives DIED because of optics. It was perceived (used, twisted, misconstrued) by a few clever politicians that physicians were going to talk about dying and (logically, of course) talk people into dying. They quickly conveyed this idea to the general population, OUR audience – our audience who votes. Language. Optics.

Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.

Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?

On the other hand, if these words cause others to retreat from our services, how does it serve either of us? Does rubbing someone’s nose in something we feel is important make them want to be our friends? Probably not.

Mostly Dead.

Arri Eisen has this tid-bit over at Science and Religion Today:

We’ve gotten good at thwarting death, which can be good, but Western medicine, with close collaboration from science, has invented the following strange idea and carried it out beautifully: Death is failure. We are committed to keeping people alive as long as possible, no matter what. Have you heard the story of a man who was recently resuscitated by EMTs despite the fact that he had “DO NOT RESUSCITATE” tattooed on his chest?

Science and technology have forced us to think about what it means to be dead: When your brain stops? When your heart stops? When you can’t move or respond? And they have inspired us to create ways of measuring these vital signs and to invent ways of reviving them when they stop working.

Baby Isaiah: Is Futile Care for the Living or the Dying?

Medical advancements have pushed us into a climate where anything that can be done for a dying patient often is done, and just as often without the patient's consent. What specific care a patient may wish is often not documented properly - all care scenarios are difficult to anticipate - or family members or hospitals may disagree with that wish. Grief is a powerful force; our desire to hold onto the beloved sometimes supplants what is best for the beloved.

The result is what is called "futile care": medical treatments that do nothing to improve a patient's condition and often inflict undue stress and suffering on the patient but that offer hope to the family and those involved in the process.

Alex Schadenberg at Canada's Euthanasia Prevention Coalition summarizes a recent case in that country that addresses futile care and - I think - asks us to consider whom that futile care benefits:

Baby Isaiah was born with the umbilical cord around his neck after a 40 labour in Alberta. He was not breathing when he was born but was revived and sent to the Stollery Children's hospital in Edmonton Alberta.

After approximately 90 days of receiving care, the parents of Baby Isaiah - Rebecca and Isaac May, were told that the hospital would withdraw the ventilator from Baby Isaiah.

The parents went to court to request another 90 days of care to give Baby Isaiah a chance to further improve. When speaking with Rebecca May, she made it very clear that they hoped to be able to bring Isaiah home and care for him. She understood that Isaiah may not survive very long and if he survived, that he may be profoundly disabled, but she was willing to care for him and love him, no matter what happened.

The Euthanasia Prevention Coalition has supported the wish of the May family to give Baby Isaiah a chance to improve to the point where they could bring him home.

While Schadenberg has properly and adequately explained that removing Isaiah from artificial life support would not be "euthanasia," he and his organization have strongly backed the May family in their fight against the hospital, citing the "precedent" that the case sets.

Like many other organizations around the world, Schadenberg and others have highly publicized Baby Isaiah's "struggle" as a "pro-life" cause. Schadenberg explains why:

Modern bioethics has bought into futile care theory. Futile care theory originally focussed on withdrawing treatment when it became futile, burdensome and ineffective. Over the past decade, and more, futile care theory now focusses on withdrawing effective treatment from patients that are deemed to be futile.

The ventilator is effectively providing oxygen for Baby Isaiah, who is growing and physiologically thriving with the care. The hospital and the physician view Baby Isaiah as being futile and believe that they are wasting the resource of the ventilator on a futile patient.

If the May family loses this court case consider where the issue may go next. People with alzheimers or dementia, people with profound disabilities, and more.

Next consider how such a legal precedent could be used if euthanasia ever became legal in Canada.

Schadenberg and others have tacked the term "theory" onto the end of futile care, a rhetorical calculation that has effectively been used to conflat the definition of scientific theory (set of principles that explain natural phenomena) with a theory in everyday life (a guess) - made popular in regards to evolution.

As Susan Jacoby writes, "The popular 'just a theory' argument rests not only on religious faith but on our national indifference to the specific meanings of words in specific contexts."

With this distortion, "pro-life" groups can debunk medical (and any other) science when they like in lieu of hope for a miracle from God. And indeed, medical science is not foolproof any more than the human body is uncomplicated. (Schadenberg's explanation is fraught with other exaggerations and assumptions as well: futile care is really necessary care, viable patients are removed from necessary care, Baby Isaiah is "thriving," removing one patient from artificial life support threatens other patients....)

But the real point of this post is this: Whom does futile care serve?

A clue may reside in a recent quote by Bobby Schindler, brother of Terri Schiavo and founder, with his parents, of the Terri Schindler Schiavo Foundation, dedicated to a Catholic, "pro-life" agenda of "protecting" those who have suffered severe disabilities from removal of artificial life support. Schindler stated regarding caring for those like his sister:

"They allow us to show our compassion, our love. I believe that they are blessings.

“And if you talk to families that are caring for people like my sister, they look at their loved one as a blessing – to be in this position of having to care for them – because they are completely vulnerable to us."

There's something inherently subversive about loving someone because they are completely vulnerable to you, about prolonging the life of a body for one's own redemptive sacrifice and subsequent "blessing." Schindler slips in "having to care" as an indication that the choice is not ours but presumably God's.

The foundation of this desire to love the vulnerable is, of course, compassion. But also, as medical ethics works to guide us through questions of artificial life support, I believe, it is also one of theological purpose. The "pro-life" stance that all life is sacred is on the face very noble and just. Not until applied to real life examples does the protection of that "sanctity" at all costs exemplify discrimination: opposition to contraception, women's and patient's rights, and to the wishes of the dying. It is in that opposition that the suffering of the other is imposed for the sake of one's own redemption. When "having to care" for a vulnerable person, God teaches us the benefits of unrequited love, of suffering, of patience.

I'm not able to speak specifically to the May's decision. I don't know their purpose. But when the private struggle of an infant is prolonged and made an example of vulnerability, an example of God's plan, a cause for hope of miracles and a case against some hypothetical "slippery slope" preying on the terminal, the disabled, the elderly, the compassion for a brain-dead child and their family is lost and subverted. They've become a cause, an argument against science and a justification for futile care.

That our lives are redeemed by suffering, that we are made better, indeed won to the bossom of Christ, by our pain, grief, and abject self-sacrifice is strongly entrenched in fundamental religious ideas - those currently and strongly espoused by the Catholic and Fundamentalist organizations that comprise the current "pro-life" movement.

Caring for the "least of these" should not demand prolonging their lives at all cost so that we can love unconditionally, so that we can suffer in that caring process in order to be closer to God. Somewhere in the argument the ability to accept death and the innate course of human life must figure. Our redemption must not feed on the suffering of others.

Disability on the Rise Among Elderly for First Time in 20 Years.

Healthfinder.gov, the site of US Health and Human Services reports that disability among seniors is on the rise for the first time in 20 years, increasing by 9 percent between 2000 and 2005:

The disability rate among U.S. senior citizens is on the rise, a surprise considering the rate had been falling since the 1980s, new research has found.

"People are living longer, but many are also living sicker," study co-author Amani Nuru-Jeter, an assistant professor of community health and human development at the University of California Berkeley School of Public Health, said in a university news release. "This study is providing an early warning sign that the decline in disability rates we've been hearing about might be ending."

After analyzing the period from 2000-2005, the researchers found a 9 percent increase in the number of non-institutionalized people aged 65 and older who said they have difficulty handling day-to-day activities, including dressing and bathing, because of a problem lasting six months or more.

"The combination of increasing disability rates, plus a growing population of older adults emphasizes the importance of prevention of the many chronic conditions giving rise to disability in the first place," the study's lead author, Esme Fuller-Thomson, a professor of social work at the University of Toronto, explained in the release. "There is evidence, for example, that the doubling of obesity rates over the last three decades may be linked to rising disability in older people, yet the obesity problem is largely preventable."

The findings are published in the December issue of the Journals of Gerontology.

More information

The U.S. Department of Health and Human Services has details on preventing disability in the elderly with chronic disease.

(SOURCE: University of California Berkeley, news release, Dec. 21, 2009)

Living Forever.

Last week, the New York Times continued their series on end of life decisions, Months to Live, with a dissection of the commonly used Dartmouth stats regarding end of life costs. The UCLA medical center has refuted the Dartmouth study and done their own, saying that they prefer to do everything necessary to prolong life, or death. Fran Johns at True/Slant takes issue with the article and the UCLA premise that can life forever:

Why is this not an encouraging word? In a front page article, part of a Months to Live series, New York Times writer Reed Abelsonleads with a glimpse into the Ronald Reagan U.C.L.A. Medical Center, a top-rated academic hospital noted for extensive, aggressive end-of-life care (and very high costs):

‘If you come into this hospital, we’re not going to let you die,’ said Dr. David T. Feinberg, the hospital system’s chief executive.

Feinberg’s commitment to “success” might be admirable, but the statement is patently false; people die at U.C.L.A. Medical Center. This is what people do: we die. Until this culture gets its act together on that subject our health care system — whatever the reform bill eventually looks like — will continue to flounder.

Difficult as it is to talk dollars when you’re talking lives, the issue of cost has to be factored in. There are only so many dollars, and there are countless lives needing care those dollars can buy: infants, children, young adults, boomers, elderly. In each of those care-needing groups, some die. Feinberg’s philosophy somewhere has to encounter reality.

…that ethos (keep testing, treating, keeping alive no matter what) has made the medical center a prime target for critics in the Obama administration and elsewhere who talk about how much money the nation wastes on needless tests and futile procedures. They like to note that U.C.L.A. is perennially near the top of widely cited data, compiled by researchers at Dartmouth, ranking medical centers that spend the most on end-of-life care but seem to have no better results than hospitals spending much less.

Listening to the critics, Dr. J. Thomas Rosenthal, the chief medical officer of the U.C.L.A. Health System, says his hospital has started re-examining its high-intensity approach to medicine. But the more U.C.L.A.’s doctors study the issue, the more they recognize a difficult truth: It can be hard, sometimes impossible, to know which critically ill patients will benefit and which will not.

That distinction tends to get lost in the Dartmouth end-of-life analysis, which considers only the costs of treating patients who have died. Remarkably, it pays no attention to the ones who survive.

No one, not the doctors, not the patients, not the best crystal ball reader around can guarantee that this patient will die or that patient will live. If there is a good chance a patient will survive — and it would be nice to add “with a reasonable quality of life” here — everything possible, and affordable, certainly should be done. Abelson’s carefully balanced article details the arguments for going to extraordinary lengths to save lives, as well as the arguments to draw the line on end-of-life expenses.

According to Dartmouth, Medicare pays about $50,000 during a patient’s last six months of care by U.C.L.A., where patients may be seen by dozens of different specialists and spend weeks in the hospital before they die.

By contrast, the figure is about $25,000 at the Mayo Clinic in Rochester, Minn., where doctors closely coordinate care, are slow to bring in specialists and aim to avoid expensive treatments that offer little or no benefit to a patient.

“One of them costs twice as much as the other, and I can tell you that we have no idea what we’re getting in exchange for the extra $25,000 a year at U.C.L.A. Medical,” Peter R. Orszag, the White House budget director and a disciple of the Dartmouth data, has noted. “We can no longer afford an overall health care system in which the thought is more is always better, because it’s not.”

By some estimates, the country could save $700 billion a year if hospitals like U.C.L.A. behaved more like Mayo. High medical bills for Medicare patients’ final year of life account for about a quarter of the program’s total spending.

So…. to spend that $25,000/$50,000 or not to spend? Unless we the people somehow face the reality that living forever is not a human option, the dilemma will continue.

The benefits of coming to terms with non-optional dying could be huge. We could focus on quality living. On palliative care and hospice care and end-of-life peace and comfort. Advances in palliative care now make it possible for most of us to spend final months at home (or in special hospital rooms), in comfort, surrounded by loved ones; given the choice, would you prefer a few weeks or months in a bright-lit sterile room with a lot of tubes and wires keeping you alive? U.C.L.A. now offers the choice of palliative care. Not everyone in charge, however, is convinced.

Dr. Bruce Ferrell, who helps lead the palliative care program, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. “He had never, ever been told that he would have to live with a ventilator and dialysis,” Dr. Ferrell said. “He was never told that this is as good as it’s going to get.”

Dr. Ferrell talked with the patient about whether he might want to leave the intensive-care unit to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

“We do not use the h-word” — hospice — “on my patients,” the surgeon told Dr. Ferrell. “Don’t ever come back.”

The patient chose to leave.

But lately, Dr. Ferrell says, more of the transplant surgeons appreciate the value of what he is trying to do.

“We’re not the bad guys,” he said. “We offer options.”

We the people would do well to quit being the bad guys. To quit behaving as if death were always preventable. We could learn about the options to spending all those thousands of dollars on exhaustive, often futile treatment. We couldtalk about what we would or would not want for ourselves, write things down, make choices.

If more of us would do that for ourselves, the House and Senate wouldn’t have such a time trying to do it for us.

And to continue the "life forever" thread, you can catch my favorite impractical blogger, Wesley J. Smith, on the same issue here. Of course Smith doesn't believe in global warming either.

Pope Reminds Hospice Patients That Suffering is Good.

From Catholic News Agency, of course:

Pope Benedict XVI paid a visit to the sick and health care workers of the Rome Hospice Foundation Sunday morning at their facility located just minutes from the Vatican. He lauded the hospice for providing free care and invited the sick to use the "light of faith" to bring them closer to God.

The Sacre Cuore (Sacred Heart) Hospice was very pleased to host the Pontiff on-site, where 30 patients suffering from terminal cancer are treated without cost. The hospice also provides home health care for 90 others.

Pope Benedict XVI addressed the gathering, saying that in a world that tends to marginalize those that suffer from incurable illness and think of them as a weight on society, "Whoever has a sense of human dignity knows ... that they should be respected and sustained while they face the difficulties and the suffering tied to their health conditions."

In providing their health care, said the Pope, "Along with the indispensable clinical cures, it's necessary to offer the sick concrete gestures of love, of nearness and of Christian solidarity to fulfill their need of comprehension, of comfort and of constant encouragement."

"I've come to offer to each of you a concrete testimony of nearness and affection," the Holy Father told them. "I assure you of my prayer and I invite you to find sustenance and comfort in Jesus, to never lose trust and hope."

"Your illness is a very painful and singular test, but before the mystery of God ... this acquires meaning and becomes a gift and occasion of sanctification."

"When the suffering and discomfort become stronger," counseled the Pontiff, "think that Christ is associating you to the cross because he wants to say through you a word of love to all who have lost their way in life and, closed in their own empty egoism, live in sin and distance from God."

"In fact, your health conditions witness that true life is not here, but close to God, where each of us will find joy and will have humbly placed our steps after those of the most true man: Jesus of Nazareth, Teacher and Lord."

Pope Benedict concluded that in this time of Advent, when we speak of "preparing the way for the Lord," through "the light of faith" sickness and suffering can become a particular Advent experience, "a visit from God that in a mysterious way happens to liberate from solitude and lack of meaning and transform pain into time spent with Him, of hope and salvation.

"The Lord comes, he's here, alongside us!” Benedict XVI exclaimed.

Looking ahead to Christmas, the Pope said it “offers us the possibility to contemplate the Holy Child, the real light that comes to this world to manifest ´the grace of God, that brings salvation to all men.'"

More Religion in Funerals, Please.

A curious column from Brit Martin Beckford at the Telegraph today. Eventually he gets around to funerals for soldiers who died in Afghanistan. Here's a clip:

If a society's attitude towards death reflects its view on religion, as I believe, then the Church of England could have big problems.

Just consider how much has changed in the past 12 months alone.

A year ago Debbie Purdy, the MS sufferer who wanted the Crown Prosecution Service to declare in advance whether her husband would face arrest if he helped her end her life at Dignitas, the Swiss suicide clinic, lost her case at the High Court.

But over the summer the Law Lords ruled that she was entitled to know the circumstances in which such prosecutions would be launched, and the Director of Public Prosecutions has gone as far as he can to decriminalise assisted dying in this country as well as for Britons travelling abroad.

Peers led by a former Lord Chancellor almost succeeded in achieving a similar result. Although the Church and other denominations have made their voices heard in this debate, they are up against a very slick PR operation run by supporters of assisted suicide.

This is being aided by articulate and successful families - the sort newspapers like to feature - who are prepared to publicise their relatives' deaths. One couple effectively sent their suicide note, expressing their anger at current laws on assisted dying, to the BBC.

They are undoubtedly winning both the propaganda war as well as the legal one, suggesting that most people would now rather have the option to end their lives of those of their loved ones at the time of their choosing, rather than accept suffering and the traditional Christian view that life is given by God and is not ours to take away.

Religious leaders also appear to be the main voices speaking out against the Liverpool Care Pathway, the method of removing treatment from patients thought to be nearing death, which has also come to prominence in 2009 and is now in place in more than 1,000 hospitals, nursing homes and hospices.

The most high-profile death of the year was that of Michael Jackson, and the reaction to it suggests society at large now treats dying as just another stage in a public figure's career rather than the end of it, or a cause for prayer and reflection. I saw jokes about his passing flash up on Twitter before it had even been confirmed by the emergency services.

The popularity of "green" burials - in biodegradable coffins with saplings planted instead of tombstones - reinforces the truth of another of this year's important legal rulings, that environmentalism is now a type of religion.

And when people have funerals they want their favourite pop songs played either to give those they have left behind a wry smile, or because they think them more meaningful than hymns.

Father Ed Tomlinson complained recently that he was left feeling "like a lemon" when he conducted services to the decidedly non-Christian strains of My Way or Over the Rainbow.

But many commentators disagreed with his sentiment, again taking the view that individual choice must trump sacred tradition.

Super Tab Dump: The It's-My-Birthday-and-I-Should-Be-Eating-Cake Edition.

Some good stuff from the past week:

Fr. Tad Pacholczyk gets most of it wrong in his article for The Philadelphia Bulletin. "Slippery Slope," conflation of aid in dying with suicide, and, most egregiously, the lie that families of those terminal patients who request their death be hastened suffer more. Studies have clearly shown that there is no difference in grief among the families of those who die from aid or on a doctor's schedule. As well, Pacholczyk clearly highlights the "double effect" use of sedation at the end of life and in trying to emphasize the great difference between intending death and intending relief of suffering, he does the opposite.

Peter Singer's post for Pew has made it to Japan. I dissect it here.

From ScientificCommons comes a study from Cyprus (where I spent two weeks on the Aphrodite trail two years ago) of how nurses view the issue of "euthanasia."

From InsideCatholic, five strategies for how to talk about physician-assisted suicide with Democrats. Like, PAS is like child pornography. It's hilarious and offensive all at the same time. But with enough truth and strategy thrown in to make it a worthwhile read. All the anti- arguments you've ever heard in one place, rationalized. Here's a clip:

One of the chief arguments for PAS appeals to the American ideal of autonomy. The desire for self-determination resonates strongly with many Democrats, and they believe that the denial of these rights is un-American.

Of course, a love of personal freedom is not unique to Democrats, and it's easy for anyone to agree that we should have the freedom to live our lives as we see fit. But that freedom must come with restrictions. For example, child pornography is illegal in America -- even in the privacy of one's home -- and no judicious person would consider it a permissible use of our freedom. Clearly, Americans acknowledge the need to limit certain behaviors. The question is, what actions should be permitted or restricted?

This months the Quebec College of Physicians announced that "euthanasia" is acceptable in some instances. The decision is hailed by doctors as a breakthrough - yet the country continues to be mired in a bitter battle over the legalization of aid in dying.

South Australia defeated a bill that would have legalized aid in dying.

The Catholic SaltandLight is running a three part series on "euthanasia" which actually calls some of Derek Humphrey's (founder of the Hemlock Society and author of final exit) writings compelling. Really. As expected, the support ends there.

An article in the NRC Handelsblad gets priorities all mixed up by lamenting the fate of doctors, traditional lords over the death bed, now at the mercy of patient choice. Um, I thought doctors were committed to serving? A snip:

Doctors often feel cornered, says anthropologist and lawyer Anne-Marie The in a study about euthanasia in the Netherlands published last week. The 2001 euthanasia law puts the patient's right to self-determination first, but doctors also have their professional responsibility and their own values and convictions. Do the wishes of the patient always trump those of the doctor? Is he or she a mere instrument?

No Longer Relevant? Medical Ethics and Philosophy

The Yale Daily News has a little post on a visit paid by University of Chicago Professor William Meadow. The article is brief and I'll post it in whole at the bottom, but note these zinger quotes from Meadow:

“Everything you might have ever learned in a philosophy class about medical ethics,” William Meadow whispered to a crowd of about 20 students, “[is] useless.”

“The problem with bringing philosophical implications into these discussions [is that] they get the easy questions right, and they don’t help with the hard ones,” Meadow said. “I’ve been accused of not having a moral compass before, and I’m OK with that.”

“Medical ethics changed drastically the minute you could keep people alive mechanically,” Meadow said. “Aquinas and Aristotle just didn’t know jack about medical ethics.”

** Entire Article

“Everything you might have ever learned in a philosophy class about medical ethics,” William Meadow whispered to a crowd of about 20 students, “[is] useless.”

At a Master’s Tea Tuesday in Saybrook College, Meadow, a professor of neonatology at the University of Chicago, led a discussion about the ethics surrounding euthanasia. Because philosophy often presents abstract, universal solutions, Meadow said, it often fails to resolve such difficult decisions.

“The problem with bringing philosophical implications into these discussions [is that] they get the easy questions right, and they don’t help with the hard ones,” Meadow said. “I’ve been accused of not having a moral compass before, and I’m OK with that.”

Meadow presented six case studies that deal with the questions of when it is morally acceptable to take a patient off life support, who is responsible for making the decision and what the decision says about society as a whole.

For the first half of the interactive talk, Meadow presented a case in which an elderly man had been diagnosed with a cancer that had spread throughout his body, causing multiple-organ failure and leaving the man unable to breathe by himself. Meadow argued that as the details of the case changed, the decision to place the man on a ventilator became more complicated, to the point where audience members were unable to say what they would do.

When the conversation turned to a situation where the elderly man had no one to speak on his behalf, Stephen Paquin ’11 asked whether the writings of 13th-century philosopher Thomas Aquinas could provide an answer to whether to keep the man alive. But Meadow said the writings of many philosophers cannot apply to modern medicine.

“Medical ethics changed drastically the minute you could keep people alive mechanically,” Meadow said. “Aquinas and Aristotle just didn’t know jack about medical ethics.”

New Haven resident and attendee Joshua Safran asked whether utilitarianism, which calls for the greatest amount of happiness for the greatest number of people, could answer whether the $2,000 per day it costs to keep a patient on a ventilator would be better spent if used elsewhere.

Meadow said this would be impossible in the United States because the money could not be reallocated under Medicaid, which helps to cover some health care costs for low-income individuals.

Discussion then turned to an infant born 13 weeks prematurely, who needed a ventilator to breathe. In this case, Meadow said, the parents did not want to keep the baby on a ventilator because they were not sure what health complications the infant would face later.

Meadow said that the question of whether the baby would face physical or mental disabilities was important to consider. For example, if the baby only needed braces in order to walk, Meadow said that most people would disagree with the parents’ decision to not put the baby on a ventilator. But if the baby were mentally challenged to the point where the parents would need to care for it indefinitely, Meadow said many would probably agree with the parents’ choice.

Meadow also serves as a professor of community health sciences within the Institute for Molecular Pediatric Sciences at the University of Chicago and assistant director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.