The Sins of We Death-Denying Mortals

This post was originally published here January 31, 2014.

You could teach a class in medical ethics using only “Five Days at Memorial” and “Knocking on Heaven’s Door.”

And someone really should,  ideally to first-year medical students. Their future patients also would be well-served to consider the lessons of these books — seminarians, too — but let’s start with physicians-to-be and the world they are inheriting: One in which 31 percent of Americans believe doctors should “do everything possible in all circumstances” to save a life, according to Pew Research, and as many or more believe doctors should be legally allowed to help people die.

Imagine it will be your job to somehow square those two realities, and to communicate skillfully enough to know and understand which patient you are advising and treating.

And welcome to med school.

The authors of “Five Days at Memorial” and “Knocking on Heaven’s Door” are journalists. Sheri Fink also is a physician who has written a profound, epic story of medical care in the catastrophe of nature and neglect that was New Orleans in the immediate aftermath of Hurricane Katrina. Katy Butler repeatedly traveled from Northern California to Connecticut over six years to support her elderly mother in carrying for her father, a stroke victim whose time finally ran out in spite of his pacemaker’s persistent pulse. (“Five Days at Memorial” is a finalist for the National Book Critics Award in nonfiction.)

Both stories will break your heart, but their higher purpose is to open your eyes. One is a compelling look at what we ask of doctors and nurses in the most extreme of circumstances. The other is full of what we neglect to ask at our peril. Both effectively consider contemporary medical ethics, underscore the importance of engaging and understanding them, and walk clear-eyed into the minefield that is mortality in America.

What is so valuable about these books, and why I link them, is they are exceptionally well-told cautionary tales for a pluralist culture in which mortality can be seen more as a challenge to be overcome than a common fate.

The books do not moralize, they are not sermons on right or wrong, not even in the case of patients euthanized in New Orleans (a grand jury did not indict). You will make your own judgments, but you’ll make them with facts, real information, and even a sense you were there.

The truth is, patients were killed at Memorial, in extreme circumstances, but not of their own choice. Whether you justify, condemn or grudgingly accept the actions of the doctors involved will depend in part on how well you understand their circumstances, and providing that understanding is something Fink does astoundingly well. (I, for one, oppose giving physicians a legally sanctioned role in directly and intentionally hastening patient deaths, and yet I’m untroubled by the grand jury’s decision not to prosecute in the Memorial killings. If there’s good away around ambiguity in such a case, I haven’t found it.)

“One of the greatest tragedies of what happened at Memorial,” Fink writes, “may well be that the plan to inject patients went ahead at precisely the time when the helicopters at last arrived in force, expanding the available resources.”

“Five Days at Memorial” tells many stories. One is the experience of patients and medical staff absorbing the horror wrought by Katrina and resulting in the killing of patients who, it was believed, amid a sense of systemic neglect, could be neither evacuated nor abandoned. Another details the attempt to apply justice for the killings. The third gives a historic sense of medical ethics, from Hippocrates through Tuskegee, and considers the events at Memorial in this context.

Given widespread distrust, fueled by disparities and inequities of class and race, government officials and medical professionals alike can be wary of engaging the public with difficult ethical issues that might stoke “death panel” fears. It’s one thing to look at the events of Memorial in retrospect, quite another to imagine decision-making in a hypothetical scenario.

And so an important lesson of “Five Days at Memorial” is that medical professionals cannot afford to exclude the public from such questions just because the answers are messy and volatile.

That’s what I found so compelling in the grand jury’s recommendation against prosecuting the medical professionals involved in euthanizing patients. Amid all the post-Katrina finger-pointing, the grand jury provided insight into what an informed public believed. And that informed public was forgiving.

Other studies cited by Fink indicate a public understanding that ideas considered offensive and unacceptable in normal times — for example, rationing of ventilators — could become unavoidable in a catastrophe.

“Sometimes individual medical choices, like triage choices, are less a question of science than they are of values,” Fink writes. “In a disaster, triage is about deciding what the goals of dividing resources should be for the larger population — whether maximizing number of lives saved, years of lives saved, quality of life, fairness, social trust, or other factors. The larger community may emerge with ideas different from those held by small groups of medical professionals.”

Fink quotes Roger Bernier, a senior advisor at the US Centers for Disease Control and Prevention, as saying that non-experts “are in the best position and in the most nonpartisan position to weigh competing values.

Why, then, is the public not engaged more regularly?

“I’m not sure we believe in democracy in America,” Bernier tells Fink. “We don’t make good use of the people. We don’t make good efforts to access public wisdom on public policy choices.”

Where was the public wisdom in developing the pacemaker? It is easy to see that the public interest has been served by a device adding years to many lives, and yet while “more time” is accepted as the benefit, consideration of quality of life in that added time has been left to retrospect.

Emphasizing this insight is part of the gift of “Knocking on Heaven’s Door,” which  resonates with the lament: I wish I knew then what I know now. As such, it is a story to help others “know now,” before fateful decisions are made. It is a reminder to ask the right questions and testifies to the importance of patient advocacy.

And in a highly personal way, “Knocking on Heaven’s Door” argues that “more time” is not necessarily the moral and right answer. What I “know now,” aided by Butler’s insights, is that the answer is forever ambiguous when the question involves medicine and mortality.

Consider, as Butler does:  “Not having a pacemaker would not have guaranteed my father a quick or easy death. But having a pacemaker deprived him of his best chance for one.”

Butler writes this story with a wrenching beauty, and packs so much into a sentence.

“My parents were contemplating more than a pacemaker,” she writes. “They were contemplating how much suffering they would bear in exchange for more time together on earth. And they did not know it.”

Butler creates a revealing chronology of technology that through the latter half of the 20th century and start of the 21st has prolonged lives and the dying process. As Butler writes, development of the pacemaker was but one advance that led to the creation of a whole new specialty in medicine, intensive care, beginning with the conversion of a hospital ward in Kansas City, Kansas, devoted to care of the elderly and impoverished. As critical, or intensive, care, it has become a place of remarkable care of lives most precarious, but it has become as well a place that speeds the burnout of nurses caring for the death-defying unconscious while families pray indefinitely for miracles.

Unlike Fink and “Five Days at Memorial,” Butler is very much a witness and a participant in her story of the consequences of medical decisions inadequately considered and understood. Installing a pacemaker gave Butler six years with her father that she wouldn’t have had without it; but other aspects of that gift were being witness to a merciless toll on her mother, her father’s painfully prolonged process of dying, and how much simpler it is to install a life-saving technology than to disconnect it.

There is no precise point at which it is clear that Butler’s father should have died, but the time passed long before his aged, confused, tired being stopped waiting for a lithium battery to expire.

I found it perplexing, and troubling, that a cardiologist would consider the act of turning off a pacemaker to be unacceptably “playing God” when installing it in the first place was not. It’s as if the physician himself hadn’t actually thought this through, which is perhaps more common than I’d like to think.

“Nothing much will change,” writes Butler, who spread charred electric coils with the bone and ash of her father, “until we pay doctors and hospitals when they appropriately do less as well as we do when they inappropriately do too much.”

Cross-posted at http://www.medicalethicsandme.org 

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Isn’t it ironic? Tales from the capture of a patient voice

NOTE: This post originally appeared on Harvard Law’s Bill of Health blog.

In a previous life I was a headline writer, so I have to give props for the title of this Friday’s Petrie-Flom panel: “Patients and Conflict of Interest: How Can We Keep the Patient’s Voice from Being ‘Captured’?

That is, how do you avoid “capturing” the patient voice when “capturing” the patient voice is the whole point of Patient Centered Outcomes Research, the event’s topic? And yet this is a central challenge to bringing expertise unique to the receiving end of medicine and research into all levels of the process.

I want to say, “Isn’t it ironic?” but that makes me a little nervous. “Jagged Little Pill,” the musical currently having its sold-out premiere at the American Repertory Theatre a short walk from Harvard Law, is inspired by singer-songwriter Alanis Morissette’s recording of the same name.  And for all that album’s success, Morissette took a lot of abuse for misunderstanding irony in a very public way.

The ART musical devotes a powerful scene to that. In it, a young black woman is mocked by her white high school classmates for misunderstanding irony as she shares a poem taken from the lyrics to the song “Ironic.”

I wonder if that experience is a view into what keeps some potential patient “voices” from speaking up, even as leaders in American health care are eager for the capture.

When you put yourself out there, and try to speak for your authentic self in a public way, it can make you vulnerable, especially among the high-powered and privileged.

I write an occasional column on medical ethics for the WBUR blog CommonHealth, and the comments are not always kind. You need a thick skin.

With Alanis, it was the critics doing the mocking. But maybe her experience can explain why so often it’s the educated and privileged who bring their voice to Institutional Review Boards, which are required to include citizens from outside the institution. Speaking up in that setting can be intimidating.

Here’s how I got captured. I was a sports writer and arts editor in LA and Boston, left newspapers to be a stay-at-home dad, nearly lost my only child to bone marrow failure, wrote a book about her cure in a phase 3 study of stem cell transplant, developed a passion for medical ethics, and interesting doors started opening.

One of those doors was to a PCORI-funded study of oversight of learning activities in Learning Healthcare Systems, an emerging model for improving patient care while reducing costs. I’m a patient-family co-investigator on the study. The principal investigator is Dr. Steven Joffe, a pediatric transplant physician and ethicist. We’re about two-thirds of the way through conducting roughly 100 interviews of institutional and patient leaders around the country.

It’s fascinating to me to see what “patient leader” means to different people in different settings. There are five distinctly different patient leaders on our study’s stakeholder advisory board. I learn from all of them. Maybe what we share is a common sense of advocacy for better patient care.

In the process I’m figuring out what it is that makes me a “patient leader” in the first place. I have a history, with my wife, of negotiating two health systems and a sort of bicoastal comparative effectiveness research when our child was ill, and learning how crazy-making variation in standard of care can be. I’ve also spent significant time as a caregiver.

Much of my ethics background relates to the clinical setting — the hospital. I volunteer as an ethics associate at Boston Children’s Hospital. And yet I’m drawn to the blurring of the distinction in ethics between standard medical practice and research. I find that blurring, as with the Right-to-Try movement, troubling.

As a newly minted “patient leader” on an interview-based, PCORI-funded study, I’m finding that personal narratives are what inform the “patient voice” and give it integrity and power. Those narratives, and understanding their significance, may ultimately be what can keep the patient voice from being captured.

In an interview with one of my colleagues on the study, a patient leader described how a hospital so valued their input that it created a salaried position.

“They had a job description, but they literally said: Figure out what it is you should be doing,” this patient leader said. “So, we have.”

It’s hard to argue that a salaried position isn’t a “capture.” But perhaps what keeps this patient voice from being negatively captured is found in their narrative: the story of a family member’s care.

I hope so, anyway. It’s what I’m counting on to avoid my own capture.

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Good dog

NOTE: It’s March 4, 2017. I’m thinking about a friend who has entered hospice. His cancer has gotten to that point. He used to like hearing about my dog before my dog’s cancer got to that point. I wrote this in Fall 2015. A version of this story appeared originally on the WBUR blog Cognoscenti.

We met our dog in a secure, subterranean kennel. My wife, daughter and I sat on a cold linoleum floor, in a long, fluorescent-lit hallway, and waited for the veterinarian to bring her out. He told us the dog would be more at ease if we sat.

The Hepa-filtered atmosphere was thick with metaphorical particulate: the hallway a threshold, the veterinarian a gatekeeper in the long corridor between medical research and care. For a family newly rescued by stem cell transplantation, not even the dog treats were simply that: MarroBones.

The dog concealed any enthusiasm for the occasion. She was shy, seemingly penitent, her long, soft ears dusting the floor as she hugged the wall and crept forward. We tried to win her over with caresses and MarroBones. Her tail stayed tucked like a comma.

Most surreal for me was this: My family had spent about 20 months in isolation, with my daughter at extreme risk of infection because the immune system she was born with had ceased to function. Now she had a new one, the gift of a generous stranger and decades of bold, visionary, often disheartening science.

You might say I also had my tail tucked. Just as I was learning to trust this new immune system, and my daughter was being cleared to escape her “bubble,” we met a dog we hoped to adopt in the clean environment of a research kennel. We all had to put on clean suits, to protect the animals from what we might have brought with us.

That was the day my daughter stopped being the vulnerable one, and we began a jarring transition to yet another new normal.

The veterinarian cried. Not loud wails or sobs, but real tears. He wiped his eyes and apologized. He said he’d never seen one of the animals he cared for meet a child who would live because of the research. Such is the disconnect between medical research and care.

Two days later, the dog would come home with us. We named her Hutch, for the place in Seattle where the cure and so much of the science behind it took place.

Research means keep looking. So my dog was a research animal in more ways than I knew, because she was always looking for something to eat, determining after the fact the morsel’s actual digestibility. Often she was wrong with her initial thesis, I’d clean up after her, and she’d go off looking some more.

Hutch was mostly beagle with a little basset, but I thought of her as a lab-beagle mix because of the five weeks she spent as a subject in research on bone marrow transplantation. My family adopted her at age 3. She’d been in a kennel under the care of a

veterinary staff most of that time, but spent five weeks on the animal equivalent of the transplant ward where my daughter’s cure took place.

She was thin when we adopted her. We fattened her up.

On the August 2015 morning when my wife and I spread Hutch’s ashes on a beach in Martha’s Vineyard, where for several years the dog had expressed joy like nowhere else, the wind was swirling, and we were uncertain which way to offer her up to the elements. We looked to the flagpole and waited till stars and stripes flapped steadily toward the northeast and the water. Then we opened the pine box, relatively small but shaped unmistakably for the occasion, and brought out the clear plastic bag of ash.

The contents were not what I expected. I imagined something more like wood ash from the barbecue that I’d taken to the compost heap the day before. What was left of Hutch seemed more like grains of sand and pieces of shell, the blend she would soon become part of.

After we released the ash, and sat on a boulder and shared some memories, I played a Bob Dylan song for my wife. Once, on a walk, I noticed Hutch’s wagging tail kept perfect time with “Duquesne Whistle.” Even my wife liked the song, which is unusual, because Bob Dylan.

Until age 3, Hutch’s name was a four-digit number, tattooed in her ear. I wrote a book about my daughter’s cure, and yet I still don’t truly grasp how my daughter could be cured of a disease that would have killed me as a child. Between the 1950s, when I was born, and my daughter’s 2006 experimental treatment, research became cure.

At the time of my daughter’s transplant, in Spring 2006, the treatment was still “last ditch” and followed failed interventions and about 80 blood transfusions. Now, physicians recommend bone marrow transplant sooner for patients with severe aplastic anemia — not out of desperation so much, though that remains a factor, but because increasingly it works so well.

Cure is by no means a sure thing, but it is a surer thing. My dog played a role in that. Shortly after my daughter’s transplant, the dog received virtually the same course of chemotherapy and radiation, then was transplanted with her own stem cells. What specifically the scientists learned from this experiment on my lab-beagle mix, I cannot say. But I can say this: transplant is better now. The balance of risk to benefit weighs ever more heavily toward the latter. My daughter’s experimental transplant protocol has become standard of care.

When my wife and I spread Hutch’s ashes, our daughter was away at a summer camp for the physically and cognitively disabled. She was a counselor. Her camper was a Down’s adult about twice her age. My daughter knows the value of a human life better than anyone I know.

Having lived more of her own life since the transplant than before it, she is going on 18 with an immune system going on nine.

Hutch was nearly 11 when she died. The cancer wasn’t caught until it was in too many places to be treated. In the end, she couldn’t stop bleeding, which was the symptom my daughter’s disease chose to reveal itself.

I recently read about a mixed-race kid, the hardest to find a matched donor for, cured of aplastic anemia by cord-blood transplant. Meaning, in short, she could once again make blood and stop bleeding.

I miss my dog.

 

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Her Name Was Kate Granger

Dr. Kate Granger died on Saturday, July 23, 2016. According to a tweet from Chris Pointon, her husband, she died “peacefully and surrounded by loved ones.” She was 34.

There is much to remember about Dr. Granger, who I never met in person but who participated in a series of occasional interviews with me, via email and social media, going back to 2012. We had a mutual interest in care of the dying and the doctor-patient relationship.

Kate, as she wished to be known, was not yet a full-fledged medical doctor when she received her terminal cancer diagnosis, but in her short medical career she was a fierce advocate for care of the dying and for teaching doctors to treat patients as people, not as symptoms. Notably, the latter was a lesson she learned, not in medical school, but as a cancer patient. She launched a national campaign in the United Kingdom known by the hashtag #hellomynameis, and counted queens and prime ministers among supporters.

In announcing her death on Twitter, fitting given her loyal following on social media, Pointon posted a lovely portrait of Kate.

Just prior, he had posted a photo of “another celeb supporting #helllomynameis.” The celeb was Mickey Mouse.

Hers was a royal following, indeed.

What follows is a version of my story from earlier this year on the WBUR  blog, Cognoscenti.

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“Forget funeral selfies. What are the ethics of tweeting a terminal illness?”

— Headline in The Guardian, Jan. 7, 2014

I did not expect to still be writing about Kate Granger in the present tense. I thought she would be dead by now. If that sounds unfeeling, well, she thought so, too. She said so in an email, and on Twitter. Many times.

Dr. Granger (“call me Kate”), diagnosed with an aggressive sarcoma nearly five years ago, began telling her story on Twitter in March 2012, to a smallish following. But a while before the writer Emma Gilbey Keller and her husband, former New York Times editor Bill Keller, came under fire for stories questioning another terminal cancer patient’s use of Twitter to tell her story, inspiring The Guardian headline, the audience for Kate’s mortal tale already was growing.

It is growing still: 42.4K as of April 7.

Kate didn’t post for nearly a week after writing, “feeling very down after this morning’s clinic visit. Just feel there is no hope for me anymore.” A chill ran down approximately 42.4K spines.

But not one of them really knows what to think. Following @GrangerKate has been a roller coaster ride and an emotional bait and switch. So often Kate’s tale of dying has become one of living, which may be her greatest gift. She is a marvel of revelation and self-motivation, and no small part of that has been her passion for being a medical doctor.

She wants to care for suffering humans. It is a profound calling. Her specialties are elder and palliative care, finding ways to somehow lessen the suffering.

And to share her own.

Around the time Kate started telling her story on Twitter, the American physician Ken Murray published an influential essay about the difference in ways of dying between physicians and patients. More than their patients, he wrote, doctors know when to say when.

This seemed true of Kate. “Never again,” she would write in a letter to chemo. But then she’d change her mind. This happened more than once.

A newlywed when diagnosed, she wanted more time with her husband. A newly minted doctor, she wanted more time with patients. Another round of chemo allowed her meet the queen, to write another book, to hold her niece for the first time. She launched a national movement in England, a product less of her training as a physician than her experience as a patient.

Being a patient gave her a view into an impersonal side of her profession she’d have preferred not to have, with rounding teams of doctors and medical students gathering around the bed of person reduced to a set of symptoms. This inspired the #hellomynameis name tag that has become something of a phenomenon throughout the National Health Service and elsewhere in the UK.

Scan the hashtag, or @PointonChris, and be amazed at the photos of who has adopted #Hellomynameis.

“I think you are right about productivity at the end of life,” Kate wrote in an email earlier this year. “I don’t have tomorrow so I have to do things today. When I’m having a bad day, then I tend to just push myself into action. I guess it all comes back to legacy for me. I want to make my mark on healthcare.

“Because of my illness, that is not going to be through a long, distinguished academic and clinical career; but it could be through improvement of culture and how we view patients now with the #hellomynameis campaign.”

The chemo ride consists of hopeful peaks and toxic depths, and more hopeful peaks if you’re lucky. Kate and her husband agreed that six months of good quality of life would be “worth it for suffering the distress of chemo.

“I know full well there will come a time when we won’t achieve the six months good time (chemo is becoming less and less effective with each course) and my baseline fitness will be declining,” Kate wrote.

“Making a choice not to have treatment in that setting will obviously be very difficult, but I think because we have been open, honest and logical about it, hopefully it will be easier to communicate our choices to family and friends.”

To all 42.4K of them, in 140 characters or less.

 

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The Ethics of a Cure

The Center for Bioethics at Harvard Medical School has posted video of my book talk in its Narrative Ethics Author Series. In attendance were a number of family and friends who were very much involved in the story told in “Blood Lines,” along with Christine Mitchell and director Bob Truog of the Center for Bioethics, masters students and fellows. The dialogue in the second half of the video gave me a whole new reason for why I wrote this book. Now I’ll let the video speak for itself. Click here. 

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OUR TOWN

A story prepared and told for the worship service “The Power of Storytelling as Ministry,” January 17, 2016, at First Parish in Brookline, MA.

I saw many of you at Brookline Town Hall recently in a show of support for two police officers and their experience of racism in our town. A woman broke down sobbing at learning this isn’t the town she thought it was. She had heard that Prentice Pilot, an officer who had come to her children’s school and taught them safety, doesn’t feel safe here himself.

So what town is this where policemen who teach safety to children don’t feel safe themselves?

I’m both a writer and someone always seeking meaning. I guess they’re not unrelated. The word tolerance has been on my mind for several years. Tolerance has many meanings.

One is medical. A First Parish child recently lit a candle to celebrate a friend’s return home from the hospital following a bone marrow transplant. I don’t know the child who had the transplant, but I have experience of this as a parent, and I know that this child came home in part because of tolerance. This kind of tolerance is created inside a person and has only existed 30 or so years. A drug was developed by scientists from “Big Pharma” and made it possible to co-exist with an organ or stem cells that originally belonged to someone else.

Cyclosporin is expensive and smells skunky; what tolerance requires can be unpleasant. Sometimes transplant patients have to take it forever, and if they stop, tolerance fails. But prior to Cyclosporin, rejection was common and agonizing, and people didn’t live long. Now they do.

Reverend Maria Cristina pointed out to me that in the LGBT movement, tolerance is understood as a portal, a beginning, but hardly a goal.

I think that’s true as well in transplant, where the higher aspiration is to give the person another chance at life, which is not possible without tolerance. But tolerance only goes so far.

I want to tell you about some friends of mine, three generations of a family who are neighbors of First Parish. They’re endlessly inspiring, which is a nice quality in friends.

Terry Strom is a doctor, educator and scientist who has spent much of his professional life teaching and learning about tolerance in human cells. He is co-director of the Transplant Center at Beth Israel. And he’s from that generation of medical scientists who witnessed  human suffering, saw transplant’s potential, and worked persistently until they created tolerance, saving lives in the process.

As I said, transplant works now, but that wasn’t always true. It took imagination and effort, and a faith that tolerance would come.

Terry’s wife Margot is the founder of Facing History & Ourselves, which still has an office behind St. Mary’s in Brookline Village. The organization started out as a single class in a Brookline school and now has global reach.

Facing History says a teacher’s most important responsibility and gift to society “is to shape a humane, well-educated citizenry that practices civility and preserves human rights.’’

Facing History also says: “Through rigorous investigation of the events that led to the Holocaust and other recent examples of genocide and mass violence, students in a Facing History class learn to choose knowledge over misinformation, compassion over prejudice or bullying, and participation over indifference or resignation.”

Which is not unlike what Officer Pilot has been teaching our kids.

So those are our neighbors. That is our town. I bumped into Terry and Margot’s son, daughter-in-law, and grandson at the meeting on racism in Brookline. The grandson was holding a Black Lives Matter poster. No coincidence. Tolerance is the family business, and the work goes on.

As I think we’re coming to see at First Parish, beloved community is not an address in a town selective with its privilege. It’s a place we struggle to create even as we know we may not get there.

To prepare for this morning, I visited the website of the Museum of Tolerance in Los Angeles. I’m glad tolerance isn’t a relic in a museum. And I’m glad the Museum of Tolerance helps keep it alive. Its current exhibit is devoted to Anne Frank. I found what I was looking for in her words.

“How wonderful is it that no one has to wait but can start right now to gradually change the world.”

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A Divergence Along the Path

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.” (Henry David Thoreau)

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My friend the reverend hears music far away. Once he heard it in remote Turkey, and whirled with Sufis. Now he strides toward something different, on a path that takes him from my church after a decade as minister. This is a very good thing for him. It’s time. Not so much for me. I wish him well, but I wish this wasn’t ending quite yet.

The reverend is up ahead on the path of transcendentalists, and I’m catching up. In the process of saying farewell, we went for a walk in the woods, literally following Emerson and Thoreau’s footsteps. The reverend, a Concord resident, says when he walks here, “I often feel like I have Henry David on my shoulders.” He means this as close to literally as you can mean such a thing.

He points out a pond-side spot that served as Fairyland for the Alcotts. He does not question the presence of spirits and sprites among the trees, then or now.

Trekking toward Walden, there are a dozen of us along with the reverend, who is usually in the lead.

This is a little embarrassing, but it’s honest: I’m not sure if I knew Walden was a pond of particular historical and literary significance before I knew it was a foundation created by Don Henley, yet another drummer.

Henley was not an early transcendentalist. He was an Eagle. Where once there was a dump and a trailer park near Walden, now there are solar panels.

I’m not sure Henry David Thoreau would have liked the Eagles. He probably would have preferred the Tom Waits version of Ol’ 55. My time went so quickly, I went lickety-splitly.

According to the New Yorker magazine, I may not be that unusual in my lack of knowledge or appreciation for Thoreau. He seems to be one of those writers cited by more than have actually read him.

The reverend has read Thoreau — you can’t claim the piggyback thing without serious cred, which the reverend has.

The reverend identifies himself as a postmodern Christian, a mystic, a transcendentalist; a Unitarian Universalist. There is space in his theology for many prophets.

He taught me a fondness for the Sufi Hafiz: “At some point your relationship with God will become like this: Next time you meet Him in the forest or on a crowded city street there won’t be anymore Leaving. That is, God will climb into your pocket. You will simply just take yourself along!”

Thoreau is on the reverend’s shoulders and God’s in my pocket as we walk the path of the prophets. We pass through parking lot of the Concord police station. The reverend tells the story of Thoreau’s arrest for civil disobedience; something about war and taxes. Emerson sees his friend in jail. What are you doing in there? Emerson asks. What are you doing outside? Thoreau replies.

Through falling outs and falling back ins, Emerson seems to have been fond of the younger Thoreau. And I wonder what Emerson would have thought of Thoreau’s thorough thrashing in the New Yorker.

This is not something the New Yorker writer wonders about — what Emerson saw in Thoreau, who came across in a story titled “Pond Scum” as “a misanthrope, a freeloader and a grumpy old man,” in the words of one in our Walden hiking party. Thoreau was virtually a member of Emerson’s family, teacher to his children, companion to his wife while Emerson was away, even constructing his cabin on Emerson’s land.

That Emerson did see something in Thoreau says something. Perhaps what Emerson saw is what the reverend feels with Henry David aboard his shoulders.

What I’m shouldering is this: I see something in the reverend that others do not, and now he’s moving on.

But first he’s standing on the shore of Walden, reading aloud Thoreau passages marked in a brown leather-bound volume by yellow stickies. His twelve followers find a stump or a smooth bit of sand to sit and eat our lunches while the reverend stands before us and reads. The scene is a little New Testament, but I keep that perception to myself. Don’t want to spoil the Unitarian moment.

The reverend gives voice to Thoreau on“the luxury of ice.” A bride and groom walk by with their photographer. The solitary life is not what they have in mind.

“I went to the woods because I wished to live deliberately,” Thoreau writes, “to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms.”

Thoreau talked the talk better than he walked the walk, according to the New Yorker. He comes off as ADD, waxing poetic about nature one moment, and then — SQUIRREL! I wonder if such a critique of Thoreau is what inspired Emerson’s thoughts about “foolish consistency.”

I wonder if the reverend read this from Thoreau: “I learned this, at least, by my experiment: that if one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.”

Of course he read that. There isn’t a word of Thoreau, or Emerson, that the reverend hasn’t read.

A century and a half before the reverend came to Brookline, the church’s minister was Frederick Henry Hedge, whose translations became the “living, leaping logos” of Emerson’s transcendentalism. The congregation built a home for Hedge, then sold it a century and a half later to to dig out from a financial burden and to more consciously walk the walk. Hedge has spent some time on the reverend’s shoulders, too, I imagine.

Before he became a minister, the reverend was a financial whiz kid, a biotech CFO, a venture capitalist.

On other days, he has walked the Walden shore with a child amid uncertain health, with a parent nearing life’s end, alone with his thoughts and his mystical piggybacker.

“I have a lot of memories here on the pond,” he says.

En route back to the center of town, the thirteen of us, the reverend and his disciples, crowd into Thoreau’s cabin. Hard to imagine him getting 30 in there, like Thoreau says he did. Having read the New Yorker piece, I’m wondering if Thoreau made it up.

Back outside, a woman passes by the Thoreau cabin and wonders aloud if it was actually Thoreau’s cabin.

“It’s a replica,” says the reverend.

And so, in a manner of speaking, is he.

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Guardian Over Competing Urgencies

Robert Klitzman insisted on a question mark.

When “The Ethics Police” was in consideration as the attention-grabbing title for Klitzman’s probing and perceptive book about institutional review boards, his initial reaction may also have involved an exclamation point. But key to agreement was a question mark.

Klitzman, a psychiatrist and director of Columbia University’s masters program in bioethics, had no such concern with the subtitle, “The Struggle to Make Human Research Safe,” because that is precisely what his book is about. Making human research safe is indeed a struggle — a profoundly difficult balancing of the public’s eagerness for cures and treatments with the scientific community’s eagerness to respond.

With $100 billion spent annually on biomedical research in the US, the money at stake is staggering and aggressively fought over, ethical shortcuts are tempting, patients themselves increasingly insist on leap-frogging the science, and the terrain is rife with conflicts of interests.

Klitzman’s interest in research and oversight is not purely professional. His father died at age 78 of a blood cancer after an experimental round of chemotherapy that Klitzman talked him into.

“The treatment had arguably made him suffer more, not less,” he writes. “I wondered whether my mother’s wish to let him die in peace had been right — whether I had been biased, too ‘pro-science?’”

He wondered, too, whether his father’s doctor had been overly optimistic about the treatment. He took solace in the hope that his father’s experimental treatment contributed to the care of future patients.

Klitzman’s personal story is no less important to “The Ethics Police?” than his bioethics and medical credentials, his experience as a researcher or his interviews with IRB members. Indeed, the personal gives this book its power.

Klitzman’s role in his father’s consenting to treatment — treatment that Klitzman’s mother opposed — provides a view into the complexities of informed consent, and the importance of a physician knowing how much to explain so that consent is indeed “informed.” Easier said than done, to be sure.

How much of the decision reflected the father’s wishes, and how much was deference to the son? How ought the physician to have weighed this?

In such a story, informed consent can seem a fool’s errand, as the most important “facts” of risk versus benefit often are known only in retrospect, and yet the consent process has long been widely accepted as crucial to safety in research. For reasons of research integrity and transparency, it’s easy to see the value in requiring that the researcher explain risks and benefits to the patient/subject, and that both actually understand the difference between “patient” and “subject (or, participant).”

“Many of the achievements that have advanced biomedicine have also, by necessity, involved human subjects, posing myriad cultural, ethical, and legal questions,” according to Klitzman. “These trade-offs are so intricate that every year scandals erupt, unforeseen by those involved.”

For more than four decades, institutional review boards, or IRBs, have been responsible for overseeing human research and avoiding those scandals. They in a sense act as arbiters of the social contract: tasked with halting unethical research, approving valid research, and readily recognizing the difference. They also have a reputation among some researchers for slowing the advance of science. Thus, the nickname: ethics police.

Klitzman insists “The Ethics Police?” is not “an anti-IRB book” and credits IRBs with doing “extremely valuable work” as “mandated committees generally struggling to do their best to protect subjects.”

The great irony within the pages of “The Ethics Police?” is that many of these committees, established by Congress in 1974 to ensure research ethics and safety, are themselves subject to little or no scrutiny or oversight. There are now 4,000 IRBs in the US, many essentially playing by their own sets of rules, though all are subject to the federal research regulations known as “the Common Rule.” (A long-awaited revision to the Common Rule may be forthcoming later this summer.)

Klitzman doesn’t see IRBs as police, except in perhaps the exceptional cases — those controversial occasions that shed more heat than light on the process.

And yet he has had the experience of having his own research mired in IRB quicksand, losing valuable time and opportunity to bureaucratic inefficiency. (In this, it is not hard to see aspects of the debate over 21st Century Cures Act and its intended reforms of the Food and Drug Administration’s processes of drug approval.)

Perhaps “Ethics Traffic Cops” would be the more apt title: keeping safe and ethical research flowing while directing more troubling traffic to an alternate route and avoiding gridlock.

But in no small way, public trust in health care, especially among the marginalized and most vulnerable, is dependent on IRBs to act as guardian at a time when the distinction between research and care is blurring. And yet few know who IRBs are or what they do, and many IRBs apparently like it that way.

Klitzman writes convincingly that this lack of transparency must change. He wants researchers to appreciate that “IRBs are not the enemy,” and more public education about the research and oversight process.

He also calls for greater transparency from IRBs, which can be varied in approach and secretive in practice. According to Klitzman, “Whatever criticisms IRBs provoke, reforms cannot be designed or implemented effectively without fuller comprehension of the perspective of the individuals serving on the boards.”

Also needed, he writes, are studies into “how frequently committees construe and apply regulations differently due to particular psychological and institutional factors, and whether and how educational or other interventions can reduce problematic IRB variations.”

The success Klitzman had interviewing IRB members only underscores the need for more such access.

“I think we need to explore far more the interpretations of ethics,” Klitzman writes. “Many philosophers and others have tended to see ethical principles as simply involving universals that are either present or absent in particular arguments.

“(The interviewees) illustrate how these principles get interpreted and applied in variable ways, molded by broader social, institutional, and psychological influences. This is not by any means to say that all interpretations are equally strong, valid, or well-reasoned: some interpretations are better than others.”

Clinical medicine increasingly turns to multidisciplinary teams for guidance in difficult areas of decision making and care. There is an important place in research for such teams, as well.

According to Klitzman, “We need models that are based not solely on science, law, or ethics, but are instead multidisciplinary, integrating the humanities with natural and social science. Much of research ethics is, and will always need to be, done by consensus, and negotiated over time by a complex array of researchers, ethicists, and others. We should strive to reach the best consensus we can. Much depends on this balance.”

The Ethics Police? The Struggle to Make Human Research Safe. Oxford University Press. Robert L. Klitzman, M.D., author.

 Cross-posted at http://www.medicalethicsandme.org

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No Cure for Ambiguity

Ethical decision-making is a balancing act. Sounds simple enough. But finding that balance is about as simple as getting the toxic cocktail right for a round of chemotherapy: Strong enough to do what’s needed, but not too toxic. Benefit and harm in every drop.

There was much to absorb in the first night of “Cancer: The Emperor of All Maladies,” even having read and reread Siddhartha Mukherjee’s remarkable “biography of cancer” that inspired the three-part PBS documentary.

The opening episode did many things right, but nothing captured for me the unyielding ambiguity of cancer care more than one parent’s description of the quest to cure childhood leukemia: “Unspeakably depressing and indescribably hopeful.”

Among the more than 15,000 sending tweets during the opening episode (#CancerFilm, @theNCI), one said she lasted 10 minutes before tuning out. She hopes to make it to 15 tonight, but no promises. Such is the ambiguity simply in choosing to watch while a family becomes a husband, a wife and their despair.

Even as I anticipate the second of three episodes, I’m still struggling with the tension between Sidney Farber’s firm and angrily defended stance against harming vulnerable children and research practices that clearly harmed sick children but in the process transformed childhood leukemia from merciless and fatal to merciless but survivable.

“I will not injure two children to save one,” the chemotherapy pioneer once said in a heated encounter with another pediatric oncologist.

Farber said this in the mid-1960s, when at the National Cancer Institute, Emil Freireich and Emil Frei were increasing survival of pediatric leukemia by experimenting with four toxic chemicals in combination. That was too many for Farber, who was as dedicated as anyone to treating and curing leukemia but saw harm as tipping the balance.

And yet, into the 1960s, no child survived leukemia. Today, nine out of 10 survive it, largely due to the evolving chemo cocktail.

The half-century that produced that astounding fact also led to the elevated place of informed consent in medicine and science. On Monday night, we watched parents absorb some promising news and then have to decide whether to follow the medical team’s advice and give their child over to a randomized trial. “The thought of your child’s treatment being up to a computer is hard to take.” Indeed.

Reality TV gets no more real than “Emperor of All Maladies.” I’ll be watching again tonight. Hopefully for the full two hours. But, as an oncologist might say, no promises.

Cross-posted at medicalethicsandme.org.
Also see Matthew Herper’s excellent piece for Forbes

 
 

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The Timeless Desire to Cure and to Care

For the next three nights, PBS will show a new documentary film based on a “biography of cancer” that tells the astonishing story of war, science, and how burning and poisoning came to be curative. I hope to miss not a minute of “Cancer: The Emperor of All Maladies,” and may very well watch it more than once, as I’ve reread the book upon which it is based, by the cancer doctor Siddhartha Mukherjee.

Anticipation has stirred memory of the first four months of 1999, and the funerals of my wife’s step-father and my father. The former was a physician and scientist who left no stone unturned in what was truly an engaged battle with the cancer that would kill him. The latter, wary of the extremes of modern medicine, left most stones unturned, and opted instead to quietly coexist with the cancer that slowly overtook him. The approaches could not have been more different, and yet each seemed right for two very different people.

My daughter’s cure also fuels my interest in the subject. Though her life-threatening disease was not a cancer, it was in many ways because of the ‘war on cancer” that she was cured. Call it collateral benefit.

I’ve become fascinated by medicine and especially with medical ethics. “The Emperor of All Maladies” is on a short list of books I’ve found invaluable in understanding scientists, clinicians and the people who rely on them. The list includes Sheri Fink’s “Five Days at Memorial,” Katy Butler’s “Knocking on Heaven’s Door” and several from Atul Gawande and Jerome Groopman.

I’ve just finished rereading “God’s Hotel,” by the physician Victoria Sweet, subtitled “A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine.” Sweet writes about “slow medicine,” something of a relic in contemporary medicine and certainly far removed from the “war on cancer.”

And yet there are similarities in the books by Sweet and Mukherjee, perhaps most importantly in their deeply empathetic portrayals of their patients. There also is historic sweep to both stories. And both are peopled with visionaries and even saints, in Sweet’s case. In addition to her medical practice, Sweet is a scholar of St. Hildegard of Bingen, whose myriad callings included care of the sick and dying.

Hildegard is no med school icon, and maybe that’s as it should be. And yet Sweet places the 12th Century mystic within the historic sweep of medicine’s evolution, and shines a particularly bright light on the role of time in healing. Along the way, she comes to question accepted contemporary thinking about the doctor-patient relationship.

“I’d accepted the teaching that a good doctor does not get too close to his patient,” Sweet writes. “He or she does not jump into the mix, but keeps some distance, watches for the ‘counter-transference,’ but does not get drawn in. There is much truth in that wisdom passed down by generations of doctors. The Hippocratic physician does not fall in love with his patients, or in hate either. He keeps their secrets no matter how heinous; he does not have dinner with his patients, or buy them presents. He remains ‘other’ to their lives, their families, their neuroses. It is a good ground rule. For a patient to turn to someone kind but distant, caring but calm, wise but not attached, is important, is necessary. But it requires that the doctor maintain a certain distance, and this means not quite being yourself. … and it was not something I wanted to give up any longer. I didn’t want to reestablish distance; I didn’t want to be a Hippocratic physician; with my patients, I wanted to be myself. Whether that was possible for a doctor, I didn’t yet know.”

Especially powerful, and perplexing, is Sweet’s passage about the man with a do-not-resuscitate order and no pulse whose “circulation had failed, and he was getting colder by the second.” He was “pretty much dead,” Sweet writes, when he opened his eyes.

“We looked at each other, and Hildegard’s lines about dying came into my mind: It is as if the soul, the anima, stands with one foot in this world and one in the next, uncertain to stay or go. That was just it. Meng Tam was undecided. He was halfway between life and death. And as I looked into his eyes, which were soft, shining, almost a greenish color, I saw them become clear and still, like a shallow mountain pool after a rain, and I knew that he had decided to stay.”

A year later, Meng Tam remained at Laguna Honda Hospital in San Francisco, the nation’s last “almshouse” and where Sweet practiced for many years. “On the anniversary of his non-death, I went around to see him. He looked well. He was calm, alert, and attentive, and when I greeted him, he looked at me and smiled.”

As Meng Tam began his return, a nurse told Sweet, “I’ve never seen anything like this.” Sweet had seen many patients die, but only Meng Tam returned in this way.

It is the hope inspired by such a rare but undeniably real story that makes “letting go” so difficult for many. Which is what earned cancer physicians their reputation both for relentlessly pursuing cure but then, when the cancer has become clearly irreversible and death imminent, for abruptly turning to palliative care, the medical speciality founded by the British nurse-turned-physician Cecily Saunders.

As Mukherjee writes, “These ‘hopeless’ cases, Saunders found, had become the pariahs of oncology, unable to find any place in its rhetoric of battle and victory, and thus pushed, like useless, wounded soldiers, out of sight and mind.”

Cancer was thought to be singular, but as its “biography” reveals, it has many faces. And the war against it, Mukherjee finds, “may best be ‘won’ by redefining victory.”

The social network of the National Cancer Institute will host a Twitter chat nightly during “Cancer: The Emperor of All Maladies” (#CancerFilm). Paul McLean, a fellow in Medical Ethics at Harvard Medical School and member of Harvard’s Community Ethics Committee, will participate: @medethicsandme

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