The Reverend & the Atheist

An atheist and a minister walk into a bar. The atheist orders Johnny Walker neat. The minister eyes it wistfully, asks for cranberry juice with a twist, smiles and says, “So, tell me about the God you don’t believe in, because I probably don’t believe in that God, either.”

Like most “guy walks into a bar” stories, this one never happened. I wish it had, and that I could have been a fly on the wall, or better yet tending bar and covering the tab just for the privilege. But I did the next best thing: I read the book each wrote while living with the knowledge he was dying.

The atheist is Christopher Hitchens; the minister, Forrest Church. Both wrote prolifically and brilliantly, and spoke thoughtfully and eloquently, in particular about religion. Each died of esophageal cancer, Church in 2009 at age 61, Hitchens two years later at 62. Church took his terminal diagnosis into the pulpit; that isn’t exactly where Hitchens went with it.

As much as I loved Hitchens’ towering intellect, as much as he made me think and smile and reassess aspects of faith best studied closely and warily and packed away where quaint ideas are kept with the curios, Church connected heart and mind like they were one and the same, inseparable, with wise counsel and powerful preaching. He pastored to my wife’s terminally ill step-father, officiated at a family wedding, and gave hope to a Jewish-Catholic couple who decades later hold deep gratitude for the foundation he helped them to build when their own traditional religions offered them nothing. They arrived as outcasts at his Manhattan sanctuary, the appropriately named All Souls, and found welcome.

Hitchens doesn’t seem to have needed that, certainly not from a minister. I never met Hitchens, and yet find his writing, like Church’s, to hold enormous power. Both possessed minds on fire. Both had intense gazes and wonderfully human smiles. Each possessed, in his own way, a prophetic voice.

“Love & Death: My Journey Through the Valley of the Shadow,” the book Church wrote toward the end of his life, is constructed in part from sermons written and delivered during that time. There is no scriptural  reference in the subtitle of the book Hitchens wrote about dying. In chronicling his own demise, he kept it simple. He titled the book “Mortality.”

Reading the two books consecutively, I was struck at how much the authors had in common, and that their shared humanity destroyed my own sense of their religious divide. They even shared an anger at harm done in the name, or under the cover, of religion. When I read these words —  ”Some half of all Americans apparently reject evolution, including three of ten Republican presidential candidates (a group that seems to offer some corroboration of this belief)”– I hear them in Hitchens’ voice, and yet they belong to Church, from a 2007 sermon.

I was left wondering, how would the author of “god Is Not Great: How Religion Poisons Everything,”  who denied the deity the capitalization he awarded without quibble to Amex, have replied to Church’s invitation to “tell me about the God you don’t believe in”?

Hitchens loved to drink, and so did Church, though he quit and seemed to like even more the depth of relationships sobriety allowed him. But I suspect Church might have gone out of his way to engage the philosophical brilliance of Hitchens, especially had it been shared mortality that brought them together. Perhaps Hitchens, too, would have welcomed it; though he found Church’s Unitarians “weak-minded,” he also said they didn’t give him much to disagree with, and was rather heartened by the Unitarian resurrection of the Jefferson Bible, which was Church’s project.

I bring them another round, and leave them to talk.

Hitchens: “Suppose I ditch the principles I have held for a lifetime in the hope of gaining favor at the last minute? I hope and trust that no serious person would be at all impressed with such a hucksterish choice. Meanwhile, the god who would reward cowardice and dishonesty and punish irreconcilable doubt is among the many gods in which (whom?) I do not believe.”

Church: “We sit on this tiny, munificently fixtured rock arguing over who has the best insider information on the Creator and the creation. Is it the Christian? The Buddhist? The atheist? The humanist? The theist? Please! We human beings trumpet our differences, even kill each other over them, while, in every way that matters, we are far more alike than we are different. Theologically speaking, we are certainly more alike in our ignorance than we differ in our knowledge. In fact, by the time we die, we will barely have gotten our minds wet. The wisest among us will have but the faintest notion of what life was all about. This counsels humility, but it also affirms oneness. Truly we are one.”

Hitchens: “I have  been in denial for some time, knowingly burning the candle at both ends and finding that it often gives a lovely light. But for precisely that reason, I can’t see myself smiting my brow with shock or hear myself whining about how it’s all so unfair. I have been taunting the Reaper into taking a free scythe in any direction and have now succumbed to something so predictable and banal that it bores even me.”

Church: “We cannot look God in the eye any more than we can stare at the sun without going blind. This should counsel humility and mutual respect for those whose reflections on ultimate meaning differ from our own.”

Hitchens: “Death is certain, replacing both the siren-song of Paradise and the dread of Hell. Life on this earth, with all its mystery and beauty and pain, is then to be lived far more intensely: we stumble and get up, we are sad, confident, insecure, feel loneliness and joy and love. There is nothing more;  but I want nothing more.”

Church: “It’s not that I disbelieve in an afterlife; I simply have no experience of an afterlife, and therefore have little to say concerning one. I do know this, however. First, nothing (including any imaginable afterlife) could possibly be any weirder or more amazing than life before death.”

Hitchens: “Ordinary expressions like expiration date. Will I outlive my Amex? My driver’s license? People say — I’m in town on Friday. Will you be around? WHAT A QUESTION!”

Church: “When I was young, I thought death took courage. I was wrong. Dying may take courage, but death requires little courage at all. It is love that requires courage, because the people we love most may die before we do. Dare to love and we instantly become vulnerable, a word that means susceptible to being wounded.”

Hitchens: “It’s even in the obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality.”

Church: “At such moments, the courage to love is nothing less than the courage to lose everything we hold most dear. Love another with all our heart and we place our hearts in jeopardy, one so great that the world as we know it can disappear between the time we pick up the telephone and when we put it down. Love is grief’s advance party.”

Hitchens: “I sympathize afresh with the mighty Voltaire, who, when badgered on his deathbed and urged to renounce the devil, murmured that this was no time to be making enemies.”

Church: “Theology is poetry, not science. … The text of meaning is vast, its nuances many and various.”

Hitchens: “As with the normal life, one finds that every passing day finds more and more relentlessly subtracted from less and less. In other words, the process both etiolates you and moves you nearer toward death. How could it be otherwise?”

Church: “Theology’s heartbeat is the miracle of our own existence. This miracle encompasses both birth and death.”

Hitchens: “So we are left with something quite unusual in the annals of unsentimental approaches to extinction: not the wish to die with dignity but the desire TO HAVE DIED.”

Church: “Elizabeth Kubler-Ross, before she got lost in the mystic haze, did important studies of how people respond to their own death announcements. Shock. Disbelief. Anger. Bargaining. And then — finally, yet only perhaps — acceptance. The lesson here is simple, yet profound. We cannot embrace our life fully until we find a way to accept our death.”

Hitchens: “I came across an article on the treatment of post-traumatic stress disorder.  We now know, from dearly bought experience, much more about this malady than we used to. Apparently, one of the symptoms by which it is made known is that a tough veteran will say, seeking to make light of his experience, that “what didn’t kill me made me stronger.” This is one of the manifestations that “denial” takes.”

Church: “To this miracle, we must do everything in our human power to awaken. Awakening is like returning after a long journey and seeing the world — our loved ones,  cherished possessions, and the tasks that are ours to perform — with new eyes. Think of little things. Reaching out for the touch of a loved one’s hand. Shared laughter. A letter to a lost friend. An undistracted hour of silence, alone, together with our thoughts until there are no thoughts, only the pulse of life itself.”

Hitchens: “I have decided to take whatever my disease can throw at me, and to stay combative even while taking the measure of my inevitable decline. I repeat, this is no more than what a healthy person has to do in slower motion. It is our common fate.”

Church: “The acknowledgement of essential unity is the central pillar of my faith. “

Hitchens: “Whatever view one takes of the outcome being affected by morale, it seems certain that the realm of illusion must be escaped before anything else.”

Church: “Religious fundamentalists, rightly perceiving the Light shining through their own window, conclude that theirs is the only window through which it shines. They may even incite their followers to throw stones through other people’s windows. Secular materialists make precisely the opposite mistake. Perceiving the bewildering variety of windows and worshippers, they conclude there is no light. But the windows are not the Light; the windows are where the Light shines through.”

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This perhaps goes without saying, of Church as well, but Hitchens died with quite a lot of incomplete thoughts. The final chapter in “Mortality” consists of fragments and jottings, the last of which quotes “from Alan Lightman’s intricate 1993 novel “Einstein’s Dreams,” set in Berne in 1905: With infinite life comes an infinite list of relatives. Grandparents never die, nor do great-grandparents, great-aunts … and so on, back through the generations, all alive and offering advice. Sons never escape from the shadow of their fathers. Nor do daughters of their mothers.  No one ever comes into his own. … Such is the cost of mortality. No person is whole. No person is free.”

Amen to that, as they say. Even Church didn’t factor God, at least not by name, into his definition of religion, which he called our response to “the dual reality of being alive and having to die.”

So maybe one man’s benediction is another’s last call.

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All quoted materials are from the written works of Hitchens and Church, and primarily from “Mortality” (Twelve/Hachette Book Group) and “Love & Death” (Beacon Press). Their original context is to be found there. In the reading, you might find a way of acknowledging your own mortality. The authors most certainly helped me to do so, and that is something to be grateful for.

Knowing When

On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.

 

My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.

 

I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.

 

The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada. 

 

Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)

 

The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact. 

 

The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.

 

Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”

 

Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”

So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it. 

 

Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility — usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) — usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?

 

This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.

 

Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.

 

Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”

 

Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?

 

He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”

 

“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”

 

Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”

 

Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK’s reputation for the care of dying patients … unsurpassed.”

 

As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.

 

Note: This post appeared originally at http://www.medicalethicsandme.org.

Things They Do

A story written for the workshop Living Into Dying at First Parish in Brookline

Last summer, as I planned the workshop Living Into Dying with my minister and two friends from church, I told them about a story I had in mind. I’d been reading a study of oncologists and how they experience grief. In some ways it’s the same grief we’ve all experienced, or will, but oncologists have a unique way of compartmentalizing, and, forgive the stereotype, but they’re not great with confronting “defeat,” and so the grief they feel can go unprocessed. Sometimes the grieving starts with delivery of a prognosis that there’s nothing curative or therapeutic left to be done. Whenever it starts, this grief follows them to their next patient, goes home with them, clings to their clothing like smoke.

That was the story I had in mind, but more recently, as I was reading the arts section of  the Boston Globe, two stories made me put that one aside for now.

Pete Townshend has been out selling his memoir, and gave a sort of master class to students at Berklee College of Music. Townshend is one of the great rock and roll songwriters, the man behind the lyric, “Hope I die before I get old.” He didn’t get his wish, at least not in the way I used to hear those words.  Townshend is 67. He’s still alive. He still seems to have that in-your-face punk attitude.

I was struck by a phrase in the Globe describing him growing up “in the shadow of World War II thinking there was no future.”

Maybe that seems a bleak reality, but I thought just the opposite. What a lucky man, to learn that so early. I almost felt a little jealous. Wish I could have grown up not obsessing about the future. Thinking only of now.

For half a century Townshend’s songs have possessed a power of immediacy. I have no doubt he meant it when he wrote “Hope I die before I get old.” I’ve heard the song so many times. But as I thought about it again in preparing for the workshop, I remembered the lyric immediately preceding it:  ”Things they do look awful cold.”

With that phrase before it, the meaning is completely different. Townshend wasn’t making a statement about age, and wanting to die young. He was making a statement about a bleak view of adulthood — emotionally distant, mean, judgmental, intolerant. Things they do look awful cold. I wouldn’t want to become that either. I wouldn’t want to grow up in the shadow of that war.

And so what had always been for me an anthem of punk energy and rebellion became an insight into never outgrowing the connection with what makes us human. He’d rather die than lose his humanity. Perhaps this is what emerges from war’s shadows. Perhaps this is the new life that emerges from death.

So why am I still analyzing a half-century-old song lyric? It’s because of the reference to wanting to die. I hear things differently these days. I hear things with a heightened awareness of mortality. There’s no question this awareness is a product of my daughter’s emergence from a serious illness several years ago. But it also has to do with work in medical ethics. I work with a nonprofit, Community Voices in Medical Ethics, and invariably our subject matter concerns end of life. That is, death. Our most recent work were two reports and a conversation guide on Question 2, the recently, and narrowly, defeated Massachusetts ballot measure.

Question 2 appeared on the ballot as Prescribing Medication to End Life, but it concerned the practice known alternately as Death With Dignity or Physician-Assisted Suicide.

I’m not disappointed the measure was defeated, but I do hope the conversation it sparked continues. Discussions of mortality and personal wishes can be enormously difficult, but I’ve come to believe few things are more important. Especially as we age, death panic interferes with  living in the moment. You can’t be fully here now while obsessed about when you’re leaving.

To overcome the deep fear and panic about death that is not uncommon, psychologists used to think we needed to accept mortality. Accept was the operative word. But accepting is not what psychologists stress now. They stress acknowledgement. Simple acknowledgement. This can take many forms. But I’m thinking of one particularly bold one.

The same day in the Globe was a story about Tig Notaro. Maybe you’ve heard of her, from This American Life  or Terri Gross’s radio show. She’s a forty-something comedian who in a short period this year was hospitalized with a debilitating illness, lost her mother in a tragic accident, ended a romantic relationship, and learned she had breast cancer.

Amid all this, in the days immediately after her cancer diagnosis, and before her double mastectomy, in the days when she was thinking this might well be a death sentence and no longer had her mom or partner to confide in, she went on stage for her usual gig at an LA club and spontaneously reinvented her comedy act.

“With humor, the equation is tragedy plus time equal comedy,” she said. “I am just at tragedy right now.”

She was known for short, quippy stories, like about being passed on an LA freeway by a bee, but the events of her life demanded she live in the moment, and what happened was, in the words of her colleague Louis CK, a “comic masterpiece.” In short, she acknowledged death in a unique and profound way.

“Hello,” she said to club’s 300 patrons. “I have cancer. How are you?”

Tig Notaro leapt into the void with nothing to protect her but her courage and skills as a storyteller. The performance was recorded, and Louis CK convinced her to release it. It’s available for 5 bucks on Louis CK’s website, and it’s extraordinary. The recording is of a live performance, so somewhat predictably, it’s titled “Live.” Except she means for it to be pronounced not to rhyme with jive, but with give.  Live. Her story is about cancer, and courage, and the gifts of a story teller.

After her mother’s death, she was going through her papers. The hospital had sent a questionaire “to see how her stay went.” Tig Notaro pauses. ” …. not great.”

You know, she says, “you can always rest assured that God never gives you more than you can handle.” And again she pauses before describing her vision of God saying, “you know what, I think she can take a little more,” and the angels are suggesting that maybe God should reconsider, but God is hearing none of it. “Trust me on this,” God says. “She can handle this.”

Tig Notaro’s timing is masterful. And she apparently has more time than she feared not long ago. In the radio interview, she told Terri Gross that her prognosis is good. Her life is changing radically. There’s a book deal. TV deals. She moved from LA to New York.

During her performance, crowd reaction ranged from awkward, disbelieving laughter to great sadness. People came expecting comedy, and instead got a vulnerable woman staring wide-eyed into chaos.”You’re going to be ok,” Tig told one distraught audience member. “I’m not, but you’ll be ok.” She likened the experience to holding a joystick and jerking her audience back and forth, back and forth, tears to laughter, joy to sorry. Comics have a saying for when it works: “I killed.” Tig Notaro confronted death, and she killed.

Listening to it is amazing. I hate comedy. I really do. My wife Jody and I met when we worked at the same newspaper in Los Angeles. I was a copy editor. She was an arts writer, with comedy part of her beat. We saw some great performances, but mostly bad ones. And comedians, when it goes bad, resort to scatology and dirty words and cheap humor and being hurtful. I usually came out of comedy shows in a bad mood, so I stopped going.

Some comics transcend  this, though. They make you think. They challenge you. And on the rarest of occasions, in one searing moment, they change the way you see the world.

That’s what Tig Notaro did on this night. She comforted the afflicted and afflicted the comfortable. Like a minister, you might say. She didn’t defy death. But she held it up, called it out, made jokes about it. Acknowledged it. In a very public way, she outed herself as mortal.

Mortality handed Tig Notaro opportunity, and she made art. She took a moment and breathed life into it.

Grace & Anthony

Two recent New York Times stories provided very different looks into the complexity of decision-making at the end of life.

One is the ongoing story of a deeply religious family’s anguish over a dying adult daughter’s fate. Grace Lee has asked to be removed from life support and allowed to die, but her parents believe that tantamount to suicide, and a sin. The woman remains competent to make her own decisions, and after asking that life support be discontinued, she changed her mind.

 “Clearly she was badgered into this position by her parents,” says the attorney for Grace Lee. “But in that context, what an incredible gift to give them at the end of her life.”

By contrast, former Times editor Bill Keller recounts the death in England of his father-in-law, Anthony Gilbey, a fate that was accepted with humor and grace by the family, including the dying man himself, who replies to his physician’s terminal prognosis, “So, no more whoop-de-doo.”

Clearly, in the latter case, there was agreement that aggressive measures to prolong the dying process were not in the patient’s best interest. For Grace Lee, best interest is more complicated. When she asked that treatment be discontinued, the interest would seem to have been hers alone. But amid her family’s anguish, and stated hope for a miracle, her own best interests changed.

For more on now the Grace Lee story is being reported, see here and here.

In his final days, Anthony Gilbey was able to state his wishes. And Grace Lee remains able to answer questions with nods or shakes of her head. Too often, the patient is beyond reach, and the decisions are between physician and family members, with no real sense of what the patient would want.

The Gilbey and Lee stories also share this: In the telling, the role of the nurse is trivial or non-existent.

 “Anthony Gilbey’s doctors concluded that it was pointless to prolong a life that was very near the end, and that had been increasingly consumed by pain, immobility, incontinence, depression and creeping dementia,” Keller writes. “The patient and his family concurred. And so the hospital unplugged his insulin and antibiotics, disconnected his intravenous nourishment and hydration, leaving only a drip to keep pain and nausea at bay. The earlier bustle of oxygen masks and thermometers and blood-pressure sleeves and pulse-taking ceased. Nurses wheeled him away from the wheezing, beeping machinery of intensive care to a quiet room to await his move to the other side.’”

But was it “the hospital” doing all that unplugging, disconnecting and bustling, or was it a nurse?

In stories about Grace Lee’s legal proceedings in various media, a search for the word “nurse” comes up empty.

Maybe this is understandable — these are stories about medical decisions, which are the domain of the physicians, patients and families — and, when they can’t work it out, the courts.

But the nurse’s role in such care is not to be overlooked. What must that feel like, to watch a patient wince or worse while you repeatedly perform procedures you know hold little or no therapeutic value? Nurses aren’t making the decisions, but it is their job to deal with the consequences — in particular, to be meticulous about bed sores and dressing and tube changes, because over the weeks or months of life support, only such meticulous care will keep the pneumonia and infections at bay, and for only so long. Grace Lee called her care “unbearable”; the humans providing that care are the nurses.

In an ongoing study of medical care deemed futile by Community Voices in Medical Ethics, which hosts this blog through its Community Ethics Committee, we have heard two stories told in retrospect by parents about aggressive, prolonged care for children when “giving up” felt inhuman. Years after the deaths of these children, the two parents still carry regrets of the “if I knew then what I know now” sort.

One has come to believe the child wanted aggressive treatment to end long before it did.

The other has this memory: When the child died, after months of aggressive life-saving attempts, the nurse quit. This dedicated nurse had stuck with the family throughout their ordeal, even while others refused to participate. But when the child died, the nurse, burned out, got out. There was no next patient for her.

And that’s why I’m thinking about Anthony Gilbey’s and Grace Lee’s nurses.

NOTE: Keller’s story provided an excellent insight into England’s Liverpool Care Pathway.

Long Live the Dialogue

A story written and told for worship at First Parish in Brookline on Sunday, September 23, 2012.

My cousin studied astrophysics at Harvard. She said if I’m ever sitting next to an inquisitive person, like on a plane, and I’m not in the mood, just say I’m an astrophysicist. This apparently ends most conversations.

I have my own way. I say I’m on an ethics committee and we study things like assisted suicide and palliative sedation for the dying. This works, too.

My committee is part of a nonprofit called Community Voices in Medical Ethics. I blog and social network  for Community Voices, and through Twitter (@medethicsandme), I’ve met a doctor who is part of a medical movement to boost the influence and stature of palliative care. This is the branch of medicine that specializes not in cures or aggressive therapies for disease, but in knowing the patient and making them comfortable. Palliative specialists have reputations for being very good at both, and so perhaps the most important work they do is with the dying.

This particular physician makes a lot of speeches, and always begins by asking for a show of hands of people who are going to die. That’s a pretty good attention getter. I won’t ask for a show of hands, but if I did, would yours shoot right up? Would you have to think about it? And if you did, why?

Medicine and science have gotten very good at making people live longer,  but we’ve not gotten any better at dealing with the fact that we don’t live forever. 

I used to be fairly naive to these concerns, but that changed when I began to work with Community Voices. We’re a group of almost 20 who study and report on questions of medical ethics from within the teaching hospitals of Harvard Medical School. 

We recently produced a White Paper meant to help voters sort out whether Massachusetts should make it legal for a physician to prescribe a lethal dose to a patient who is terminally ill, competent to choose and physically able to self-administer. In November, when you’re in the booth deciding between Mitt Romney and Barack Obama, you’ll also vote on what’s called Death With Dignity,  or Physician Assisted Suicide.

To produce this White Paper, Community Voices interrupted a study of medical futility, or those rare but not rare enough cases when families and physicians can’t agree on appropriate care. Typically, the physicians see no benefit to aggressive care and want to stop, but the desperate family disagrees and isn’t ready to let go. Typically, the patient is long past forming or expressing an opinion, and is caught helpless in the middle.

As I educated myself about medical futility, I discovered through media coverage the story in Canada of Samuel Golubchuk, an elderly man whose adult children went to court to force the hospital to continue treatment that the doctors and nurses considered to be torture. And for months, the disputed care continued, three ICU physicians resigned their positions rather than continue, and finally Samuel Golubchuk died about three months before the scheduled court date.

One of my colleagues in Community Voices is a rabbi, and a palliative care chaplain, and as I told the Golubchuk story, and how the adult children insisted they were abiding the religious beliefs of their Orthodox Jewish father that his death not be hastened, the rabbi interrupted me. He became quite animated as he said the children were only half-right about the teaching. It is true, he said, that Judaism teaches not to hasten death. But it also teaches that dying not be unduly prolonged. Do not hasten death, do not prolong dying. That is the teaching.

Conversations about end of life are never easy, but these Community Voices dialogues have been a privilege to participate in. And the rabbi’s words have stayed with me.

 

Tattoos, Hospice Nurses & Competing Wolves

I’m just discovering the blog at hospicediary.org, written by Amy Getter, a hospice nurse in Seattle. I was drawn to it by her Twitter exchange with physician Alex Smith following his blog post at GeriPal.org.

Smith writes about people getting DNR chest tattoos — to make as unmistakable as possible their wishes against resuscitation measures.

The advance directive could not be clearer, it would seem, or more certain to accompany the person, than when indelibly imprinted upon one’s chest.

In response, Getter tweeted: “I know a woman who attempted suicide and wrote no code on her chest, she was resuscitated anyway when found. Who decides?” 

“Who decides?” is a timely question, in light of recent consideration in JAMA and elsewhere of whether CPR, so rarely successful and so often brutal, should cease to be automatic, and become a more discretionary therapy for physicians.

Hospice nurses have a unique perspective into contemporary quandaries in end of life care, and so I was glad to discover Getter’s blog. She writes insightfully and compassionately about the realities of caring for the dying at hospicediary.org.

I was rewarded with this gem:

An old Cherokee, teaching his grandson about life, said: “A fight is going on inside me, It is a terrible fight and it is between two wolves. One is evil — he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other is good — he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. The same fight is going on inside you and inside every other person too.”

The grandson asked in reply: “Which of the two wolves will win?”

The grandfather answered: “The one you feed.”

(This post appeared originally at medicalethicsandme.org)

The Medal Count

I began the day with Nicholas Kristof’s wrenching portrait of the heroic and once-brilliant Major Ben Richards, who is is seeing his mind slip away after repeated head injuries in Iraq.

Now that he’s home and needs us, we’re not there for him.

Then I watched the US win the gold medal basketball game against Spain, the players jubilantly dancing around the court afterward to Springsteen’s “Born in the USA.”

The song is about American neglect for its wounded heroes from a war decades ago.

So, we won the gold, Major Richards’ is losing his mind, and NBC is promoting the hell out of “Stars Earn Stripes.”