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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