A Case for Slower Medicine

A few days ago I met Katy Butler, author of Knocking on Heaven’s Door. Her revealing book about her elderly father’s slow death and her mother’s reaction to that – by learning to question doctors and, ultimately, choosing “less” – is a cautionary tale of too much medicine. The prose is elegant, and daughter’s point of view, graspable.Knocking on Heaven's Door

What emerges, through Butler’s voice about her parents’ ordeal, is anger. She tells of the pacemaker that was placed in her father’s heart. It kept him alive through multiple strokes and progressive debility. Her father’s protracted illness became a burden to her aging mother, who cared for her husband through thick and thin. Butler minds the costs of the procedure and doctors who, with seemingly little contemplation, inserted the device and billed for it. When her mother, in her eighties, became weak with heart valve problems, she opted not to have surgery. That was a triumph, Butler suggests – that her mother didn’t let the doctors take her heart, too.

And so she writes. There’s value in this intensely personal story. Because every day in hospitals patients receive treatments they don’t want, that they wouldn’t have selected if they had understood in advance what the consequences would or could be. Too many people, especially the elderly, die after they’ve had futile, intensive or just plainly aggressive care. Butler points to the pitfalls of a system that pays doctors to do procedures rather than to communicate.

Anger is an understandable reaction to a system that dehumanizes us (patients), that treats human bodies as containers of billable ailments and broken parts. I get that. But most of the many doctors I know go about their daily work with good intention – to heal. Plus, there’s a danger of underselling, or not choosing, care that could extend life, with good quality, for years or decades.

It’s not easy to reconcile the positions of over-treated patients and over-worked doctors. Some say the answer is in better medical education, in programs like narrative medicine, in patients’ gaining knowledge and asking more questions, or in revamping doctors’ payment incentives. I don’t see an easy solution from the doctors’ side, except for what’s obvious:  practicing physicians need time to think, to contemplate the purpose of what they’re advising in each patient’s case. They should be paid for intellectual and communicative (non-PR) efforts. And they should learn, or be given enough minutes in each visit assigned, to hear, listen and respond to patients’ concerns.

The author of Knocking on Heaven’s Door, Katy Butler, mentioned that she’s eager to give grand rounds, to speak before doctors including cardiologists. She’d love to tell and teach them, and us, a thing or two.

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Summer Reading: Island Practice, About A Rare Physician on Nantucket

Summer seems the right time for reading Island Practice, a book about a surgeon who lives and works on Nantucket. This engaging work profiles a craggy, eccentric and trusted doctor who, by circumstance and availability, takes care of many people on the island with all kinds of ailments – physical, psychological, minor and life-threatening. The story, now available in paperback, offers a window into the year-round experience of living in a small offshore community. Island Practice

The book probes the relationships formed when a doctor is immersed in his community. There are few secrets. As reported by the detail-oriented Pam Belluck, a NYT journalist, Dr. Tim Lepore arrived on Nantucket in early 1983 with his wife and children. Over time, the people who live there got to know his politics, habits, pet interests and political views. As described, the Harvard-educated, Tufts-trained Lepore is a gun-collecting libertarian. He practices medicine with old-fashioned attention to each patient, variable billing and a conscience that makes it hard for him to leave the island. Lepore takes pride in his work, knows the limits of his knowledge and surgical skills, and cares. He treats famous Democrats with summer homes, businessmen stopping by on yachts, or hermits hiding out in well-furnished holes in the island’s woods.

It’s refreshing to read a story of a physician who practices on his own terms, who manages to set his viewpoints apart from his work. That’s how I was trained to practice medicine, and to what I aspired in my practice, years back – to treat each person the same and carefully, no matter what their background and opinions. So unlike the Florida doctor who, during the health care debate was reported to have posted a sign on his door that Obama supporters should seek care elsewhere. And so much like the Palestinian surgeon portrayed in a film I saw recently, the Attack, who worked to heal wounded Israeli trauma patients. Good medical care is apolitical.

I suspect many of my readers – patients and physicians – would enjoy this worthwhile book and perspective on an unusual doctor’s life.

And on that note, I will close out this blog for summer.

Safe travels and health, to all, ES

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Reading Toms River

When I was a medical resident working at Memorial Sloan Kettering in the late 1980s, some of us joked about the apparently high cancer rate New Jersey. It seemed, though none of us could prove it, that too many of our patients came from the state across the Hudson. Statistics can be tricky, I knew. Sometimes we notice clusters of disease that are just random blips, constellations or flukes.

river landscape, by Frits Thaulow

river landscape, by Frits Thaulow

So when Dan Fagin’s book, Toms River, came out two months ago, I was drawn. The narrative opens with a gripping portrait of a young man whose frame was irrevocably altered by a childhood cancer. It moves on to the history of the small town in central NJ where Ciba, an international chemical company now subsumed by BASF, set up shop in the early 1950s.

The residents hadn’t a clue what was happening to their water. Fagin, an environmental journalist, wades through a half century of dumping, denial, Greenpeace efforts to expose the situation, local citizens’ mixed responses, real estate, some basic and theoretical chemistry, cancer registries and more.

I value this book highly. Toms River could be a lot of places – pretty much anywhere pollution goes unchecked. As the author points out near the end, the problem’s manifest in China now, and elsewhere. It’s a lesson in business ethics, among other things.

The tale intersperses epidemiology and statistics with local politics and individuals’ lives. It reveals just how hard it is to prove cause and effect when it comes to cancer – which, as I’ve said before, is no reason to let industry go unregulated. Because we’ll rarely if ever get definitive, 100%-style evidence that a particular compound causes cancer in humans. Rather, the story points to the need for lowering the threshold for chemicals on the list, and for regulating toxins in manufacturing.

A subtler point, deeper in some ways, is that there are people who don’t want to think about their neighborhood’s water supply or the food they like to eat…”Out of sight and out of mind,” Fagin says in the thick of it. He’s spot-on, there: when a toxic exposure is disconnected from its outcome by decades – and diluted, we tend not to notice or worry.



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Finding Kindness and Introspection in ‘Half Empty,’ a Book of Essays by David Rakoff

Regrettably, I found the essayist David Rakoff by his obit. It happened last August. The Canadian-born New Yorker died at age 47 of a malignancy. In a reversal of a life’s expectancy’s, the writer’s death was announced by his mother, according to the New York Times.

I was moved to read one of Rakoff’s books, Half Empty, and in that discovered a man who, I like to think, might have been a friend had I known him. It’s possible our lives did cross, perhaps in a hospital ward when I was a resident or oncology fellow, or in Central Park, or through a mutual friend.

The last essay, “Another Shoe,” is my favorite. Rakoff learns he has a sarcoma, another cancer, near his shoulder – a likely consequence of the radiation he received for Hodgkin’s in 1987. He runs through mental and physical calisthenics to prepare for a possible amputation of his arm. He half-blames himself for choosing the radiation years before: “I am angry that I ever got the radiation for my Hodgkin’s back in 1987, although if it’s anybody’s fault, it is mine,” he wrote. “It had been presented to me as an easier option than chemotherapy.” He reflects on his decision as cowardly and notes, also, that it didn’t work.

He wound up getting chemo anyway, a combination – as any oncologist might tell you, but not in the book –that’s a recipe for a later tumor.  So one take-away from this sort-of funny book, among many, is that how doctors explain treatments and options to patients – the words we use – matter enormously, not just in clinical outcomes, but in how people with cancer feel about the decisions they’ve made, years later.

The other part on words, which I love, is a section on the kinds of things ordinary people – friends, neighbors, relatives, teachers…tell people who have cancer. It appears on pages 216-217 of the paperback edition:

“But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, ‘You fucking asshole, I can’t wait until you die of this,’ people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

I look forward to reading more of Rakoff’s essays, and appreciate that he’s given me so much to think about, on living now.

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Reading and Hearing ‘Bang the Drum Slowly’

image from the 1973 film

Recently I read Bang the Drum Slowly, a 1956 novel by Mark Harris about players on a fictional baseball team. According to the University of Nebraska Press website, this book was once ranked among the top 100 sports books of all time by Sports Illustrated.

This is a rare cancer narrative. I’d give it 4 stars, or maybe even 5 – depending on my mood and your scale. The story’s told from the perspective of the New York Mammoths’ reliable and usually-winning pitcher, Henry Wiggen. With reason, his teammates call him “Author.” Early on, Author learns his team’s less verbal catcher, Bruce Pearson, had traveled, covertly, to Rochester Minnesota for treatment of Hodgkin’s disease.

In the patient’s words, he’s “doomeded.” Author’s immediate response reveals a clear sense of obligation to his teammate: “I will come,” he says, despite that it’s far away and his wife is pregnant. When he gets to the medical center in Minnesota, he finds Bruce looking deceptively well:

“…and in he come, all dressed, all fit as a fiddle, looking as tip-top as I ever seen him, and I said, ‘This is sick? This is why I dropped everything back home and risked my life in a snowstorm and went to the expense of a new wardrobe in Minneapolis?’   (p. 11)

Harris’s insights and skepticism about physicians in white coats and research funding are familiar now. As his protagonist (Author) remarks:

“’…You are the boys that send me 50 letters a day looking for contributions for your rotten hospitals. What do you do with the contributions I send?’

‘We done many great things,’ said the first doctor. ‘We are only human and cannot do everything.’ (p. 13)

This slim work, oddly elegant in its tenderness and guyish language, resonates today. Some of the pertinent issues include Author’s difficulty in keeping the knowledge of his friend’s illness to himself, the others’ varied responses to the catcher’s disease and cope with his looming death, some acquaintances trying to take advantage of the situation while others reach out and help, fear of the disease…It’s loaded!

An unmissable medical message – apart from the work’s cultural aspects – is that the young player with Hodgkin’s lymphoma had what was accepted as an incurable illness back then. Today, approximately 90 percent of young people with that cancer type survive for decades after the illness and may have a full life after treatment. With so much talk about the costs of care, and research, it’s easy to forget that this was a usually-lethal disease, even at the best of medical centers six decades ago.

I plan to see the two cinematic versions of this story. The first appeared on TV in a 1956 episode of the United States Steel Hour, with Paul Newman as Author and Albert Salmi playing the infirm catcher, among others. More of you may be familiar with the 1973 movie, called Bang the Drum Slowly, starring Michael Moriarty and Robert DeNiro.

Toward the end of the book, a character nick-named Piney sings an old tune about a dying cowboy with this verse: “O bang the drum slowly and play the fife lowly, Play the dead march as they carry me on, Put bunches of roses all over my coffin, “Roses to deaden the clods as they fall.” Some of the players mind the music more than others. The author admits feeling sad.

Though I didn’t find much on the original music behind those verses, which probably exists and has a long history, I did find a clip of Emmylou Harris singing a newer song of the same name.

Emmylou Harris sings another version of "Bang the Drum Slowly" (YouTube)

Emmylou Harris sings another version of “Bang the Drum Slowly” (YouTube)

All these “lessons” – stories of patients, from patients, about patients, form a trail.


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Notes on the Social History of American Medicine, Self Reliance and Health Care, Today

Over my vacation I read a bit on the history of health care in the United States. The Social Transformation of American Medicine, by Paul Starr, was first published in 1982. The author, a professor of sociology and public affairs at Princeton, gives a fascinating, relevant account in two chunks. In the first section, he details the rise of professional authority among physicians in the U.S. In the second part, he focuses on the relationship of doctors to corporations and government.

I couldn’t put this book down. Seriously, it’s a page-turner, at least in the first half, for anyone who cares about medical education, doctors’ work, and how people find and receive health care. In an early chapter, on medicine in colonial and early 19th Century America, Starr recounts the proliferation of medical schools and doctors, or so-called doctors, in the years after 1812. One problem of that era, besides a general lack of scientific knowledge about disease, was that it didn’t take much to get a medical degree. State licensing laws didn’t exist for the most part, and where they did come in place, such as in New York City, they were later rescinded. Then as now, many practicing folks didn’t want regulations.

Doctors were scarce and not always trustworthy. People, especially in rural areas, chose or had to be self-reliant. Many referred to lay sources for information. Starr writes of the “domestic” tradition of medical care:

…Women were expected to deal with illness in the home and to keep a stock of remedies on hand; in the fall, they put away medicinal herbs as they stored preserves. Care of the sick was part of the domestic economy for which the wife assumed responsibility. She would call on networks of kin and community for advice and illness when illness struck…

As he describes it, one book – William Buchan’s Domestic Medicine, was reprinted at least 30 times. It included a section on causes of disease and preventive measures, and a section on symptoms and treatments. By the mid 19th Century a book by John C. Gunn, also called Domestic Medicine, or Poor Man’s Friend…offered health advice in plain language.

Starr considers these and other references in the context of Protestantism, democracy and early American culture:

…while the domestic medical guides were challenging professional authority and asserting that families could care for themselves, they were also helping to lay the cultural foundations of modern medical practice – a predominantly secular view of sickness…the authority of medicine now reached the far larger number who could consult a physician’s book.

Reading this now, I can’t help but think of the Internet and other popular and accessible resources that challenge or compete with doctors’ authority. Other elements of Starr’s history pertain to current debates on medical education, credentialing and distribution of providers.

Just days ago, for example, the New York Times ran an editorial on a trend of getting Health Care Where You Work. The paper reported on Bellin Health, an allegedly non-profit entity, that designs on-site clinics for medium-sized companies. “It has managed to rein in costs while improving the availability and quality of care — in large part by making it easier for patients to see nurses and primary care doctors,” according to the Times opinion. The clinics are “staffed part-time by nurses, nurse practitioners or physician assistants, who handle minor injuries and illnesses, promote healthy living and conduct preventive screenings.”

The editorial touts Dartmouth Atlas data and other high marks for the care Bellin provides at low costs to possibly happy workers and their satisfied employers. Still, it’s not clear to me that an on-site clinic would be a great or even a good place to seek care if you had a subtle blood disorder or something like the newly-reported Heartland virus.

On reading the editorial on delivering health care to the workplace, I was reminded of Starr’s tale of the development of clinics at railroad and mining companies in the first half of the 20th Century. This happened mainly is rural areas where few doctors lived, at industry sites where injuries were frequent. The workers, by Starr’s account, were generally suspicious of the hired physicians and considered them inferior to private doctors whom they might choose if they became ill. They resented paying mandatory fees to support those on-site doctors’ salaries. Doctors’ groups, like the AMA, generally opposed and even ostracized those “company doctors” for selling out, or themselves, at a lower price.

The second half of the Social Transformation, on failed attempts at reform before 1982, is somewhat but not entirely outdated in light of Obamacare and 40 years intervening. But many of the issues, such as consideration of the “market” for doctors and the number of physicians we need, relate to the papers of this week including an Economix column by another Princeton professor, Uwe Reinhardt, who puts forth a view that, well, I don’t share. As I understand his position, Reinhardt suggests that there may be no real shortage of doctors, because physicians can always scrunch their workloads to fit the time allotted. But that’s a separate matter…

In sum, on the Social Transformation, today: Worthwhile! Curious! Pertinent! Starr’s book is chock full of history “lessons” that might inform medical practice in 2012. And I haven’t even mentioned my favorite segments – on prohibiting doctors’ advertisements (think websites, now), the average workload of physicians before 1900 (think 5 or so patients per day), and the impact of urbanization on medical care and doctors’ lives and specialization.

Lots to think about, and read.

All for now,



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Reading Between the Lines, and Learning from an Epidemiologist

Early on in Between the Lines, a breezy new book on medical statistics by Dr. Marya Zilberberg, the author encourages her readers to “write, underline, highlight, dog-ear and leave sticky notes.” I did just that. Well, with one exception; I didn’t use a highlighter. That’s partially due to my fear of chemicals, but mainly because we had none in my home.

I enjoyed reading this book, perhaps more than I’d anticipated. Maybe that’s because I find the subject of analyzing quantitative data, in itself, dull. But this proves an easy read: it’s short and not boring. The author avoids minutia. Although I’m wary of simplified approaches – because as she points out, the devil is often in the details of any study – this tact serves the reader who might otherwise drop off this topic. Her style is informal. The examples she chooses to illustrate points on medical studies are relevant to what you might find in a current journal or newspaper this morning.

Over the past year or two, I have gotten to know Dr. Zilberberg, just a bit, as a blogging colleague and on-line associate. This book gave me the chance to understand her perspective. Now, I can better “see” where she’s coming from.

There’s a lot anyone with an early high school math background, or a much higher level of education, might take away from this work. For doctors who’ve attended four-year med schools and, of course, know their stats well (I’m joking, TBC*), this book provides an eminently readable review of basic concepts – sensitivity, specificity, types of evidence, types of trials, Type II errors, etc. For those, perhaps pharmacy student, journalists and others, looking for an accessible source of information on terms like “accuracy” or HTE (heterogeneous treatment effect), Between the Lines will fill you in.

The work reads as a skinny, statistical guidebook with commentary. It includes a few handy tables – on false positives and false negatives (Chapter 3), types of medical studies (Chapter 14), and relative risk (Chapter 19). There’s considered discussion of bias, sources of bias, hypothesis testing and observational studies. In the third chapter the author uses lung cancer screening scenarios to effectively explain terms like accuracy, sensitivity and specificity in diagnostic testing, and the concept of positive predictive value.

Though short, this is a thoughtful, non-trivial work with insights. In a segment on hierarchies of evidence, for example, the author admits “affection for observational data.” This runs counter to some epidemiologists’ views. But Zilberberg defends it, based on the value of observational data in describing some disease frequencies, exposures, and long-term studies of populations. In the same chapter, she emphasizes knowing – and stating – the limits of knowledge (p. 37): “…I do think we (and the press) do a disservice to patients, and to ourselves, and to the science if we are not upfront about just how uncertain much of what we think we know is…”

Mammography is, not surprisingly, one of few areas about which I’d take issue with some of the author’s statements. For purposes of this post and mini-review, I’ll leave it at that, because I think this is a helpful book overall and in many particulars.

Dr. Zilberberg cites a range of other sources on statistics, medical studies and epistemology. One of my favorite quotes appears early on, from the author directly. She considers the current, “layered” system of disseminating medical information through translators, who would be mainly physicians, to patients, and journalists, to the public. She writes: “I believe that every educated person must at the very least understand how these interpreters of medical knowledge examine, or should examine, it to arrive at the conclusions.”

This book sets the stage for richer, future discussions of clinical trials, cancer screening, evidence-based medicine, informed consent and more. It’s a contribution that can help move these dialogues forward. I look ahead to a continued, lasting and valuable conversation.


*TBC = to be clear

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The Emperor of All Maladies: A Narrative of Cancer History and Ideas

This week I finished reading the Emperor of All Maladies, the 2010 “biography” of cancer by Dr. Siddhartha Mukherjee. The author, a medical oncologist and researcher now at Columbia University, provides a detailed account of malignancies – and how physicians and scientists have understood and approached a myriad of tumors – through history.

The encyclopedic, Pulitzer Prize-winning book is rich with details. In the first half, Mukherjee focuses on clinical aspects of malignancy. He works both ancient and modern stories into the narrative; the reader learns of Atossa, the Persian queen of the 6th Century BCE who covered her breast disease, and Thomas Hodgkin, who in the 19th Century dissected cadavers and noted a “peculiar” pattern of glandular swelling in some young men, and Einar Gustafson, aka Jimmy, who was among the first children cured of leukemia in the 1950s.

The second half is a tour-de force on cancer biology; the author winds distinct threads of cancer science. He moves from century-old observations of cells with abnormal chromatin, through viral theories and hard-to-prove carcinogens, to the brave new world of oncogenes, targeted therapies, and current cancer genomics. He narrates the rift between clinical oncologists who, primarily, treat patients empirically and think less about science, and cancer researchers, who generally attend separate conferences and concern themselves with mechanisms of tumor growth and theoretical ways of blocking them. He relates a gradual, albeit slow, coming together of those two fields – of clinical and molecular oncology.

Mukherjee leaves the reader with a sense of cancer as a vast, infinitely diverse group of diseases that can mutate and adapt while a person receives treatment. The oncologist’s new goal, he suggests, is not so much to eradicate the disease as to learn more about its nature and course, to monitor each patient’s tumor and adjust medications as the cancer – or burden, as the term implies – shifts and mutates within the person who carries it along, within, for years and even decades.

It takes a long time to understand the workings of cancer cells; this book offers insights for oncologists and patients alike.


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‘Cutting For Stone,’ and Considering the Experience of Practicing Medicine

A short note on Cutting for Stone, a novel I’ve just read by Dr. Abraham Verghese. He’s an expert clinician and professor at Stanford. The author uses rich language to detail aspects of Ethiopian history, medicine and quirks of human nature. The book’s a bit long but a page-turner, like some lives, taking a strange and sometimes unexpected course.

For today I thought I’d mention one passage that haunts me. It appears early on, when the protagonist, a man in middle age reflects on his life and why he became a physician:

My intent wasn’t to save the world as much as to heal myself. Few doctors will admit this, certainly not young ones, but subconsciously, in entering the profession, we must believe that ministering to others will heal our woundedness. And it can. But it can also deepen the wound.

The point is, a physician may be immersed in his work in a manner that he is, in effect, “addicted” to practicing medicine – a term Verghese uses later on in the book. There’s an emotional boost, or relief, some doctors glean by their daily tasks. An example he gives is a surgeon who feels better upon seeing his patient, who’d been sick, recovering nicely after an operation. This applies in other fields, including oncology.

I get this. It’s an under-discussed aspect of being a doctor, articulated well in some characters’ pathology and passion.

More on this, later, elsewhere –

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On Reducing Cancer Care Costs by Resetting Expectations, and Hope

Today we should move forward on the list published in the NEJM on Bending the Cost Curve in Cancer Care. We’re up to point 7 in our discussion, what’s 2nd in the authors’ proposed changes in attitudes and practice: “Both doctors and patients need to have more realistic expectations.”

This point follows closely from the previous, that doctors need to talk with patients earlier on end-of-life issues. But the central issue here is that most patients with cancer are unrealistic about their prognosis, and that oncologists do a terrible job in correcting their misperceptions:

…According to one recent study, most of the patients with lung cancer expected to live for more than 2 years even though the average length of survival is about 8 months.3

Resetting expectations will be difficult. Tools are available to help the oncologist provide truly informed consent by sharing anticipated response rates, chances of cure (always near zero for patients with metastatic solid tumors), and side effects…Many oncologists do not have these skills,43 so use of a decision aid may help…

What they’re describing amounts to Lake Wobegon effect, from the patient’s perspective, and that may be fair enough.

But I think these authors are letting oncologists off easy. Why it is that they lack “these skills,” i.e. what it takes to help patients face reality? It happens yesterday I was reading Dave deBronkart’s book, How to Laugh, Sing and Eat Like a Pig, on his experiences as a patient with metastatic kidney cancer, and he cites a terrific, pertinent excerpt in Dr. Jerome Groopman’s The Anatomy of Hope:

Hope, unlike optimism, is rooted in unalloyed reality. …Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.

Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. For all my patients, hope, true hope, has proved as important as any medication.

Groopman’s point is that real hope rests in reality.

Going back to the NEJM piece –

I don’t think oncologists need (or better, should need) decision aids to help them reset patients’ unrealistic expectations. What they need is time, and thoughtfulness, and the capacity to be genuinely empathic.

If our health care system promoted trusting, and ideally longer, relationships of cancer patients with their physicians, patients would be less fearful of hearing the truth, and their doctors would be less afraid to speak honestly with them. This would reduce cancer care costs by lessening futile treatments, and would improve the quality of the patient-doctor relationships in oncology, besides the quality of care, in itself, and patients’ experiences as they near the end of life.


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