A Conference on Bioethics and Humanities, and Future Planning

Last week I traveled to Atlanta, Georgia, where the American Society for Bioethics and Humanities (ASBH)* held its annual meeting. Most of a thousand people participated in the four-day conference. The sessions drew a mix of nerdy physicians like me, nurses, professional bioethicists, philosophy professors, a few lawyers, historians and artists.

It was really a lot of fun. Fun, that is, if you’re into subjects like philosophy in medicine, literature in medicine, medicine in literature, ethics in medicine, technology and privacy, justice and parsimony in health care, etc. I hadn’t heard the word “epistemic” so many times since I was in college. I felt young and idealistic, talking seriously about philosophy, as though it matters. (For the record: it does.)  This was, clearly, a medical society meeting unlike others. For instance, an academic named Woods Nash, of the University of Tennessee, gave a talk on David Foster Wallace’s story, “Luckily the Account Representative Knew CPR.”

original cover image (Wikipedia) - link to Random House (publisher)

original cover image (Wikipedia), publisher: Random House 

On the first day, I walked into a provocative plenary talk by Julian Savulescu, an ethicist and Oxford professor. He presented an argument that that using medical tools for the purpose of moral bioenhancement might be a good thing. (If this topic brings to mind A Clockwork Orange, you’re on track. Think also of Huxley’s soma, as a questioner raised.) All very serious. The next day, a packed ballroom of people heard from Amy Gutmann, President of the University of Pennsylvania and Chair of the Presidential Commission for the Study of Bioethical Issues. She spoke about the concept of deliberative democracy, and the value of teaching ethics. Toward the end, she entered into a humorous and seemingly candid discussion of men and women in the workplace, “having it all,” and common sense. “Time is finite,” she mentioned.

I could go on, and list all the lectures and smaller sessions, but this post would get dry. Besides, I couldn’t possibly attend each one, nor can I give all the speakers’ due credit. Some talks were better than others, as meetings necessarily go. But I can’t resist a plug for the presentation by Rosemarie Garland-Thomson, a professor of women’s studies and English at Emory, on perspective and disability. Another favorite had to do with technology and science. David Magnus, of Stanford University, considered whether research accomplished through gamification – a means of crowd-sourcing science – on platforms like FoldIt, EteRNA and EyeWire should be covered by the usual rules for biomedical research. “Are the players scientists?” he asked.

The tone, overall, was intense. Intellectual, brain-stimulating… By contrast to other medical meetings I’ve attended, there was little glitz, scant makeup and limited Wireless. Perhaps the most surprising aspect of the ASBH conference was the distribution of freebies at booths in a display area, where attendees gathered for an opening evening reception and, on other days, breakfasts. Of course it was all minor stuff handed out, like pens and candy, mainly from university departments seeking applicants for fellowships, and academic presses selling books. The most substantive, and useful, gift I received (or “accepted” – a term with greater moral accuracy, from my perspective) was a green umbrella from the Hastings Center – a bioethics stronghold where I’d love to spend some time learning and doing research, in the future.

On Sunday morning, I attended one of the last sessions, on decision aids in bioethics. We lingerers were treated to three terrific talks. I can’t cover them all. So to close this post, I’ll refer to the promising work of Michael Green, a physician and bioethicist at the Penn State College of Medicine. He and colleagues have been developing an on-line decision tool for advanced care planning with grant support from the NIH, the American Cancer Society and elsewhere. The website, MakingYourWishesKnown.com, enables individuals to detail their wishes through an interactive questionnaire. Green and his colleagues collect and publish data on users’ feelings upon using the decision aid. They can measure, for instance, if it gives people a sense of control, or reduces fear, and if patients’ families and doctors find the “outputs” useful. I, for one, intend to try out the MYWK website.

And I do hope to attend another ASBH meeting. Next year’s is planned for October, in San Diego.

All for a while,

ES

*disclosure: I joined the society.

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A Little Bit of Good? on Dying, Communication, and Breaking Bad

Within the realm of narrative medicine on TV, Breaking Bad took us to a dark and violent place. The devastatingly brutal finale took the protagonist, Walter White – a cancer patient and chemist like no other – where he was destined to go from the start: he died. Walt had, from the first episode, a diagnosis of inoperable lung cancer. And he was human. So there’s no surprise, really.

What made the ending so memorable, besides wrenching, was Walt’s final surrender, to his circumstances. He accepted his impending death and decided, with what hours remained, to do some good. It wasn’t much, but he tracked down former friends and directed them, however forcibly, to provide for his son; he spoke honestly with his wife; he took a bullet.

a scene from the last episode, 'Breaking Bad' on AMC

a scene from the last episode, ‘Breaking Bad’ on AMC

Walt, a school teacher, got turned on to cooking crystal blue methamphetamine. He, a man who in the beginning could barely hold a pistol, became a ruthless killer. He called himself Heisenberg, after the physicist who established a principle of uncertainty. His new line of work led, indirectly, to planes crashing and body parts raining over his neighborhood. As a consequence of Walt’s choices in the fictional TV-years between his 50th and 52nd birthdays, other men’s daughters died, drug dealers died, crime bosses and old people and kids died. His world and home became ruinous. Until the end, he kept saying he was doing it, cooking meth for his family – that he might leave money for his wife, disabled teenage son and infant daughter.

In the end, he couldn’t repair his relationship with his teenage son, who’d idolized him. He couldn’t bring to life his former student and partner’s dead lover. Or resurrect others he’d killed along his strange, calculating and horrifying journey. Walt died in a bloody scene, right along with the professional bad guys, the hit-men he’d hired to get at others.

Someone close to me suggested the ending was “too good” – that Walt’s fit of honesty in an i-dotting finale offers a sense of catharsis, or redemption, that doesn’t follow from the antihero’s trail of heartless decisions. It was unlikely, he said. Unlike Heisenberg.

But I loved it.  A lot. Mostly because in my real life, I’ve seen people nearing death who lacked the courage to contact loved ones, to say a few words that – while insufficient to fix what’s irreparable – might have helped them gain peace of mind, or future solace. On the other side, I’ve seen family members and long-lost  friends afraid to call or visit patients on their death beds, for not knowing what to say, for not being able to set things perfectly right.

Sometimes there’s no way to mend a person or a bad situation. You can’t deny reality. But if you’re still conscious and able to communicate, you may be able to lessen the damage you’ve done, or the pain someone else is experiencing, just a bit.

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Seeing ZocDoc, And Listening To A Panel On Improving Health Care

A few evenings ago, I visited ZocDoc. The youthful company, seemingly approaching middle age among startups that began in 2007, looks to be thriving. ZocDoc keeps its headquarter downtown in a loft-like, mainly open, SoHo space replete with a ping-pong table, open kitchen and mock street signs pointing (abstractly) to concepts like “Make Work Fun” and “Patients First.” The vibe amongst the crowd – a hundred or so by my crude estimate: a mix of doctors and entrepreneurs, a few journalists, insurance executives and investors, along with some ZocDoc employees – was strictly positive.

According to its website*, ZocDoc is:

… a free service that allows patients to find a nearby doctor or dentist who accepts their insurance, see their real-time availability, and instantly book an appointment via ZocDoc.com or ZocDoc’s free apps for iPhone or Android.

Basically it’s a small-but-not-tiny, growing health IT company that provides an on-line way, like an app, for people to find doctors who accept their insurance and have available time slots. (Think of OpenTable, but for health care?) Since 2007, ZocDoc has expanded. The company, with some 450 employees, claims over 2.5 million users monthly in over 1,800 cities.* Its business model includes that doctors, dentists and possibly other provider-types, pay an annual fee to participate ($300 per month, an employee told me). Since it started, ZocDoc has received significant press and gained prominent investors like Goldman Sachs and Jeff Bezos. It’s won awards as a top-notch place to work. Kudos!

The main event was a panel discussion of a dry-sounding subject:  “Improving Healthcare: The Public and Private Sectors’ Shared Responsibility.” ZocDoc’s founder Chief Operating Officer, Dr. Oliver Kharraz, introduced a formidable panel of speakers, in this order: Senator Tom Daschle, Dr. Brad Weinberg, of Blueprint Health, Senator and Dr. Bill Frist, Rich Fernandez, of the Boston-based Steward Medical Group and Dr. Amanda Parsons, of the NYC Dept. of Health and Mental Hygiene.

Dr. Kharraz opened with a question on how technology and medical startups, like ZocDoc, will fare in the context of Obamacare and upcoming, uncertain changes in the health care landscape. Daschle was first to answer, and he did so by congratulating the company for its talent and the passion it brings to a turbulent, transformative health care environment. A fit-looking Frist, a former heart surgeon, spoke enthusiastically on opportunities in the private sector. Other panelists chimed in, with words like “value,” “exciting,” “risk,” “entrepreneurial,” “wellness” and “opportunity.”

No word cloud is needed; we were in one. And it’s hard not to be charmed by the brightness of enthusiastic and eager tech-folks who want to make it easier for people to get to doctors they might need. In theory. The ZocDoc space bore no semblance to any hospital or office where I’ve been a doctor or a patient.

At the end of the discussion, one of the panelists noted the group’s apparent agreement on the terrific-ness of the enterprise. Rather than opening the session up to questions from the audience, we were invited to mingle and ask questions of the speakers. If I’d had the chance, I’d have asked a few:

1. Does ZocDoc help people get well, or is it simply a web-based system for procuring appointments with doctors who sign on?

2. What does ZocDoc offer that another health IT program, or portal, can’t or couldn’t provide?

3. How does ZocDoc help patients who don’t have insurance? (OK, it doesn’t; but that’s not the company’s aim)

4. Sure, ZocDoc has value. It helps a small fraction of the population who might be traveling and for one reason or another need to make a doctor’s appointment without having time to ask around or call in, or prefer to just click for an appointment (as I do for groceries), but…Does ZocDoc improve the quality of health care received?

5. How do you reconcile the money being invested in start-ups like these, which make health care “easier” for a few, with the lack of resources faced by real, nearby NYC hospitals closing?

Keep in mind, my concerns are based in my enthusiasm for technology in health care, and for giving providers, aka doctors, a “shot in the arm” of modern-ness. Enter the 21st Century…But there’s no hands-on a patient, no real medicine here. It’s too clean. I’m not convinced the value’s true.

*all links accessed 9/19/13

addendum, 9/20: a ZocDoc representative has informed me by email that the fee for providers is based on an annual contract priced at about $300/month, and so I have adjusted the post accordingly. (I’d originally stated that the fee was approximately $300 per year, based on my recollection of what an employee told me during the event.) – ES

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Visiting an Exhibit on Early AIDS at the New York Historical Society

School’s back in session. With fall approaching, your author has resumed teaching and attending lectures. Today I had the chance to visit the New-York Historical Society where an exhibit, AIDS in New York: The First Five Years is winding down. The display closes in two days.

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (Mario Suriani/AP) - NYHS image

A group advocating AIDS research marches down Fifth Avenue in June, 1983. (M. Suriani/AP image) NYHS 

The opening scene, by the first room’s entrance, is breathtaking in a way. There’s a huge picture of men, countless, basking in the sun on a Hudson pier. The men looked relaxed, comfortable and healthy – blissfully unaware of what lies ahead. The exhibit takes you through the late 70’s club scene, with just a few pictures of that, and then moves to confusing and odd reports of unusual infections in homosexual men, intravenous drug addicts, hemophiliacs and Haitians. The show moves on into the early 80’s, when science steps in slowly, and most politicians keep away.

What’s clear is that most doctors didn’t know what was going on. The young men weren’t sure either. There were rumors but also credible denials about a disease affecting the community. Gradually, the city’s Department of Health and CDC started tracking the problem. There were protests, and activists, and friends helping friends to die. There was no therapy back then, except to temper some of the infections and treat the once-rare cancers we were seeing with strange frequency.

I had the fortune of walking through the exhibit today among a group of suburban high school students – kids who were born after the invention of anti-retroviral therapy. Their questions – some simple and others intense, and the relatively young guide’s recounting of her experiences during the early AIDS years, made me realize how crucial is this history. It was a terrifying health problem, then.

Yes, the historical society’s exhibit is neat and tidy. I remember, well, caring for young people who died, hopelessly. The gravity of the epidemic isn’t captured. But it’s a worthwhile review, nonetheless – especially for its bits on low-end media, like typed bulletins from the early Gay Men’s Health Crisis and early posters on safe sex. Those frank messages provided the only information some people at risk received about the emerging disease. The display includes a few passages and images having to do with patients helping patients. That was the best part.

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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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On Friends Affected by Cancer, and Environment Oncology

Dear Readers,

Yesterday I learned that a woman I know slightly, a journalist, has Stage 4 lung cancer. Debra Sherman is a reporter for Reuters and began a blog, Cancer in Context.  It’s a moving start of what I hope is a long journey.

What struck me is how Debra describes crossing a line, a bit the way I felt when I found out I had breast cancer. She writes:

I have been writing about medical technology and healthcare for more than a decade. I’ve covered the major medical meetings, including the big one on cancer. I’ve written stories about new cancer drugs and treatments…I wrote those stories objectively and never imagined any would ever apply to me.

She’s shifted from what you might call a “straight” reporter to an i-reporter journalist. And although it’s true that Debra may be less objective than some other writers on the subject, she’s already knowledgeable – through her prior work – on many of the relevant terms and issues. Much of what she knows already, vocabulary included, may allow her to make more informed decisions. It’s possible it may enable her to write in a way that helps readers more than ever.

Earth, from space (NASA image, Wiki-commons)

Earth, from space (NASA image, Wiki-commons

I wish her the best with her column, and with her health ahead.

The bigger issue, of which the story reminds me, is that we’re living among too many young and middle-aged people who have cancer. Every day I read or hear of another case among my neighbors, a friend, a blog. Each reminds me of the need for research, better drugs, and greater knowledge of why so many tumor types – including lung cancer in women who haven’t smoked much, and breast cancer in young women – are on the rise.

The ASCO meeting, where believe me I wish I could be but can’t now, offers a bright picture for targeted drugs, genomics, novel immunotherapy and better data access and analyses through a huge new platform called CancerLinQ, All good. Great, really.

In thinking about each new case in my “world” – if I could pick a field for future investigation that might lead to insight on cancer’s causes and, ultimately, reduce the cancer burden 30 and 50 years from now, I might choose the tiny, under-funded area of environmental oncology

That’s a tough field. Most oncologists want to work with patients. Researchers want to publish papers. Cause-and-effect is hard to demonstrate, especially when most of the data is untenable and you’re up against businesses, politics and people who, understandably, don’t recall precisely what they ingested years ago. But to stop cancer from happening so much, that’s where the money is. IMO, nothing more.

All for this week,

ES

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Should People With Health Problems Talk About their Conditions?

Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.

And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.

OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.

But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?

I am truly ambivalent about this.

My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.

Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.

Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?

Maybe.

Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –

“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who  detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.

Thoughts?

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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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What Do We Need Doctors For?

One of the first questions I asked on this blog was, Are Doctors Necessary? In  2010, I wondered if the Internet and other open resources could replace physicians’ advice. Say you’re feeling OK and not obviously sick, you might prefer to just read and draw upon the wisdom of the crowds, Google and books. If you have a pesky symptom, you might just look it up, or pretend it’s not there, and see if it goes away, without seeking a doctor’s input.

Marcus Welby, M.D. (1969–1976), IMDb image

Marcus Welby, M.D. (1969–1976), IMDb

But if you’re sick – if you’re a patient, and not a consumer, in this blog’s lingo – well, then, of course you need a doctor if you want to get well. Physicians are necessary, still, especially if you’ve got a serious illness, like colon cancer, malaria, catatonic depression, rheumatoid arthritis or Type I diabetes, to name a few doctor’s attention-worthy conditions. Even for someone like me, who’s gone through med school, residency, fellowship and spent years giving medical care to other people, having a thoughtful physician – someone whose experience and intelligence I trust – is indispensible.

My doctors help me sort through the literature, if I choose to read it (I don’t always) and figure out what makes sense for me to live without pain and as fully as possible. I value their work immeasurably. But, as much as I have been helped by nurses, physical therapists, pharmacists and peer patients, the doctor’s opinion matters most. Admittedly, I’m lucky in this. Over the years, I’ve accrued a team of excellent physicians whom I trust. That’s not a common scenario now, which is part of why this question matters so much.

The updated part of the question, now, is whether nurse practitioners (NPs), straight RNs, physician assistants (PAs), pharmacists, social workers and others including, yes, peer patients, should take up much – or even most, of doctors’ tasks. As outlined in a recent editorial, these non-physician health care workers can be paid less and may do a better job at certain chores that, historically, have been carried out by MDs. They can order scans and contact patients about the results, fill out forms for home physical therapy, measure your blood pressure and give injections, like flu shots.

At one level, assigning minor and not-so-minor tasks to other kinds of health care providers sounds great. It’s a partial, 2-for-1 solution, because it relieves the physician shortage and, simultaneously, lowers health care costs. It makes perfect sense, to a point, for efficiency.  There are, legitimately, some tasks that nurses are better-trained to do, such as giving medications. Pharmacists are more likely to pick up on dangerous drug combinations than busy pediatricians, because that’s the focus of their work and training. Peer patients are valuable too. Etc.

But if doctors are just thinking about your “case” or doing complex  procedures, and not being the ones to call you back, or putting in intravenous catheters, or even just sitting and taking a thorough history – they’ll know you less well. And if they spend less time with you, a patient with a serious illness, they – according to the laws of human nature, and my observations on rounds on hospital wards over many years – will not care so much about the outcome of your case. When and if a doctor spends time with a patient, that builds trust, concern, and – possibly, better outcomes.

Reality dictates that we have to protect doctors’ time so they can read, sleep, and spend at least a few minutes each day with the people they care about outside of the workplace, and take care of themselves. If we don’t unload some of the tasks to other health care workers, we’d have to assign fewer patients to each physician. That would exacerbate the shortage…

No simple answer –

ES

 

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A Comedian Tells the Story of His Child’s Cancer

Yesterday a video came my way on Facebook. It’s a stand-up piece by Anthony Griffith, who tells what it was like working as a comedian when his 2-year old daughter had recurrent cancer and died.

This 9 minute clip packs sadness and pain:

The Moth Presents Anthony Griffith

“If you don’t know about cancer, when it comes back it comes back hard.” It’s “meaner and stronger,” he explains. To compensate for its added aggressiveness, doctors raise doses of chemo and radiation. That’s not easy for anyone, a child no less.

He reflects on his daughter’s condition back then: “So she’s bald, which she doesn’t mind because every kid in the ward is bald, and she thinks it’s a part of life…”

He recalls his predicament, as a parent: “You’re not prepared for this. There’s no books, there’s no home-ed class to teach you,” he says.  Therapists were off-limits in his community. “So you try to figure it out.”

“What did I do?” he wondered, trying to make sense of his daughter’s illness. His musings cross all kinds of barriers.

Griffith was thrilled to appear several times on Johnny Carson’s Tonight Show. But NBC is “all about nice and everything is going to be OK.” He felt pressured to keep everything “light” when he wanted to speak honestly.

He recounts how he felt. “And I’m hurting, and I want everyone else to hurt because somebody is to blame for this,” he shouts, two decades later. He suppressed his anger, bucked up, and performed.

Rage persists, understandably, still.

The powerful clip is produced by the Moth, an NPO dedicated to storytelling. H/t to Jen Singer.

Thank you to Mr. Griffith, the comedian and actor, for telling it like it is.

 

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Breakfast Will Never Be the Same Again

#Ordinary, heart-wrenching: “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together” – http://bit.ly/OsFfHO

I couldn’t fit the hash-tagged words above, with the link, into 140 characters. So here’s a post for the weekend and school year ahead:

Some of the breast cancer bloggers have been posting lately on the ordinary things that contribute to our well-being. The idea is one I’ve considered previously and attribute in part to Mom-blogger and post-lymphoma person Jen Singer, who once wrote about the immeasurable value of doing laundry, or something like that.

The point is – it’s not all about the vacations in Thailand, birthdays and rock concerts. Or opera, if you’re into that. Rather, it’s the everyday stuff that fills our lives.

Before I get too Hallmarky…

This morning Lisa Fields, aka @PracticalWisdom, sent a Tweet that caught my interest. Nominally, it was on the “geography of verbs” as considered in a commencement address. I clicked. The Guilford College speaker, author Patti Digh, recalled a young family that appeared a few years back on the Oprah show.

The mom was dying, with cancer. Digh recounts:

After she died, Oprah welcomed the family back to her show and asked the kids a question: “What is one of your favorite memories of your mom?” I’m sure Oprah imagined they would talk about swimming with dolphins or one of their big adventures with her, but the little girl said very quietly, “I remember one time when my mom asked me to get her a bowl of Cheerios, and we ate them together.”

Bingo. It’s the little stuff, as Digh explains. What the child – or an adult “survivor” in the sense of one who outlives the person and remembers selectively – values may or may not match what matters most to the patient.

This is the opposite, or at least a twist in perspective, relative to what the bloggers are talking about. And it’s the same. A logical puzzle, maybe, for life.

#EveryDayMatters.

Enjoy the weekend, all!

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Talking About Physician Burnout, and Changing the System

Dear Readers,
I have a new story at the Atlantic Health. It’s on burnout among physicians. The problem is clear: Too many have a hard time finding satisfaction in the workplace. Many struggle with work-life balance and symptoms of depression.

With many difficult situations, the first step in solving a problem is in acknowledging it exists. After that, you can understand it and, hopefully, fix it. Our health care system now, as it functions in most academic medical centers and dollar-strapped hospitals, doesn’t give doctors much of a break, or slack, or “joy,” as Dr. Vineet Arora suggested in an interview. You can read about it here. The implications for patients are very real.

Glad to see that research is ongoing about physicians’ stress, fatigue and depression. Thank you to Drs. Tait Shanafelt, Mary Brandt, Vineet Arora and others for addressing these under-studied and under-discussed issues in medicine. Through this kind of work, policy makers and hospital administrators might better know how to keep doctors in the workforce, happy and healthy.

ES

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Living Like It’s Shark Week, Take 3

It’s Shark Week, or at least that’s the situation over at Discovery Channel. The annual, virtual immersion into the world of cartilaginous fish has been adopted by your author as some sort of metaphor, but she’s not sure for what.

“Live every week like it’s shark week” is a puzzle. In fact, this statement in a 30 Rock episode lurks at the periphery of Medical Lessons year-round. By now I should confess I’ve never watched an entire Shark Week program. But that doesn’t stop me from wondering about the significance.

Remotely, it’s about mental health. Science, too. I could head into a discourse on cartilage and the alleged beneficial effects for illnesses like cancer, but I don’t believe there’s any evidence to support those claims. Surely, Shark Week has to do with whether you embrace more risk or take a safe route, swim where divers go or watch TV about nature. At another level, it’s about time – a reminder that there are only so many days and nights in each week, in each month, in each year, by which we mark our lives.

So it’s about mortality. Maybe.

An alternative theory is that Shark Week is entirely devoid of deep meaning. It could be nothing more than a tool by which the Discovery Channel turns a profit in August. This year, the event was delayed until August 12. Although I’ve never taken a course in cable network programming, I would hazard a guess that this scheduling change had to do with the end of the Olympics programming that same day.

For 2012, I’ve decided to celebrate Shark Week by not watching TV. Furthermore, I won’t write on anything that has to do with breast cancer or hard science. This morning, I walked to a beach and went for a swim before breakfast. It was fantastic.

Enjoy August! And please rest up, dear readers, because I’m likely to get serious again, soon,

ES

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How Much Do You Want Your Doctors To Say About Risks of Treatment?

When I was diagnosed with breast cancer, I was working as a board-certified oncologist. The initial decisions most patients face – which doctor to see, what kind of doctor to see, and at which medical center to see them – were basically non-decisions. I knew, within an instant of my diagnosis, who I’d ask to be my oncologist, surgeon and plastic surgeon. Those choices were straightforward, because I knew what those physicians were like in terms of how they cared for patients, their knowledge and other aspects of their practices and personalities.

The harder decisions were what treatment to take, or not, for my early-stage breast cancer. I was perhaps the most informed cancer patient who could walk into an oncologist’s office. I was familiar with the different regimens. I knew that adjuvant chemotherapy would, roughly and over the long haul, reduce my odds of recurrence by a third. I was aware that, if I opted for a lumpectomy, radiation treatment would reduce the local recurrence rate but was unlikely to affect my long-term survival. I understood that dose-intense regimens were more likely to make me sick and more likely to cause problems down the road.

And yes, in the back of my head I knew that chemotherapy can cause another cancer. Did I think about that possibility? The best answer is, probably, not so much. I was coping with the present.

But that knowledge did influence the decision I made to take a relatively “light” dose of chemotherapy. I was lucky, also, in that I understood my pathology. My tumor, at 1.5 cm, with a negative sentinel node and generous expression of hormone receptors, was a good-prognosis tumor. I was 42 years old, and wanted to live for a few more decades if I survived my spine surgery (another story). I chose the minimal amount of chemo that had been shown in clinical trials to reduce the odds of recurrence.

Last week, I wrote a piece for the Atlantic on how doctors and patients talk about the risks of chemotherapy, or not, and whether patients listen or necessarily want to listen. The reason I put it out there is because I’ve seen doctors shy away from this part of the conversation about cancer treatment. I’m a firm believer in informed consent, and in patients’ access to as much information as they choose to have. If you get chemotherapy, you have the right to know about these risks, and to ask your doctor about them.

I’ve been there with patients who’ve said: “please, don’t tell me this. I can’t deal with it.” Some might even consider it cruel to tell patients with a serious, urgent and treatment-needing condition details of all the possible side effects. Many ask, “what would you do, doctor, if it were someone in your family?” And if they like and respect you, they go with your recommendation.

This kind of paternalism, when a doctor assesses the risks and benefits, and spares the patient’s “knowing” seems anachronistic. But it may, still, be what many people are looking for when and if they get a serious illness. Not everyone wants a “tell me everything” kind of physician. What do you think?

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I Hope My Doctors Aren’t Blogging Too Much

Today’s ACP Internist reports that nearly 1 in 8 doctors has a blog. This news comes from a study published by the Journal of the American Medical Informatics Association.

First, the study’s flawed from a methodological standpoint: The investigators, based at the CDC, used data from a 2009 DocStyles survey of 1750 primary care physicians, pediatricians, obstetrician/gynecologists, and dermatologists in the U.S. According to the paper, this sample was drawn from the Epocrates Honors Panel. So they’re a technically-oriented bunch. Besides, the survey didn’t include oncologists, cardiologists, neurologists, radiologists or surgeons, among other physician-types.

Red flag: “Physicians who completed the survey were paid an honorarium of US $55–US$95.” This tells me that the doctors who participated have time on their hands and could use an extra $75 or so; it’s unlikely they’ve got thriving practices.

Blogging was defined as “posting commentary, descriptions of events, or other material such as graphics or video on a website which serves as an online journal.” The featured result was that 13% of the paid, internet-using physicians in the study said they blogged in the prior six months. The 226 bloggers tended to be young and male.

Seriously –

It’s unlikely that 1 in 8 doctors in the U.S. are blogging. I say this not just because the study’s flawed, but because almost all the physicians I know and trust with my health care don’t have time to write, unless they’re taking notes for a book, or do so as a hobby. They might, for example, blog about video games, or vegan recipes. But as far as their work is concerned, most non-shift doctors are lucky to see and examine all their patients, finish their notes and answer patients’ phone calls and get home by 11 PM.

In my view as a patient, if you’re a doctor and you blog for fun, there’s no issue. Blog away, and mind HIPPA. But if you’ve got anything else to do with your time, like –

  • reading medical and scientific literature
  • enjoying time with friends, family and others in your community
  • resting
  • exercising
  • spending one extra minute with each of your patients
  • re-checking primary data and calculations before publishing research
  • watching a movie
  • having lunch with colleagues
  • gardening
  • bowling, if that’s your thing…
  • <insert your passion>

– live your life! Spend time wisely.

I want my doctors to be happy, up-to-date, and rested.

Besides, what’s the point of so many busy, needed health professionals writing about their experiences or opinions, except if it’s for their own satisfaction?

 

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A Picture of Periwinkle

Periwinkle plant – the source of Vincristine, a chemotherapy 

Dear Readers,

Your author has been busy writing other things, and revamping this site. Medical Lessons is, if nothing else, a work in progress.

For this week, I thought I’d simply share this image of periwinkle, Catharanthus roseus. From this plant comes an old chemotherapy drug,  called Vincristine (Oncovin). When I practiced, I used this agent to treat people with lymphoma, some forms of leukemia, Kaposi’s sarcoma and, rarely, patients with life-threatening cases of low platelets from an immune condition called ITP.

All for now,

ES

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Remembering a Warm-Hearted Patient

When I was a resident I worked in a general medicine clinic. One afternoon each week, I’d get more dressed than usual and split off from my inpatient team around noon to go see patients in another building, outside of the hospital.

flickr image, HikingArtist

Today, I’m reminded of a man I saw there and treated for two years. His name was Mr. Sunshine.* The first time I met him, it was in the midst of a noisy, crowded and windowless waiting room.

“Mr. Sunshine?” I called out, as loudly as I could from the receptionists’ desk. I’d skimmed through his chart including partial notes of a recent hospitalization. It was 1988, long before we stopped calling patients by their names in public areas. He stood up and greeted me with a broad smile. He shook my hand before I guided him to a smaller, quieter windowless room for his examination. He carried a medium-sized suitcase.

Mr. Sunshine had heart disease, kidney disease, diabetes, and peripheral vascular disease. He’d had a heart attack or two, and possibly a stroke. He was a large man. As I recall, he came from North Carolina but had lived most of his life in Brooklyn. After some brief, standard but sincere chit-chat about who we each were, I asked him why he was there in the clinic. “I’m sick,” he said. “I think maybe I should be in the hospital.” That was, essentially, his chief complaint.

Being the diligent resident that I was, I attempted to get through a review of systems (ROS) – the drill by which doctors run through a lot of questions as fast as possible, starting like this: “Do you get headaches, earaches, have trouble hearing, double vision, blurred vision, sinus congestion, a runny nose, frequent sore throats, swollen glands, cough, pain on swallowing…” Keep in mind, this was before most doctors had sheets for patients to answer these questions in advance, on a checklist, or NPs to ask the questions for them. If you were lucky, and smooth, and the patient wasn’t “difficult” – or really sick, you could get through a complete ROS in under 1.5 minutes.

Mr. Sunshine said he was tired and short of breath most of the time. He pulled from his suitcase a crumpled, large brown bag with more than 20 medication vials and vitamins. There was a set of pajamas inside, and other stuff including a toothbrush.

I didn’t admit Mr. Sunshine to the hospital that day, but we bonded. He stayed as my patient in the clinic for two years, always treating me with respect while I adjusted and tried to reduce his meds.

Once he asked me if he might ask me a question.

“Sure,” I told him.

“Are you Jewish?” he asked.

“Yes, I am.”

He nodded.  I lacked the nerve to ask him why he wanted to know. He told me he sang at his church.

When I moved on to become a fellow in hematology and oncology, Mr. Sunshine asked if he could still be my patient. I told him that in my new position I’d be working in another clinic, and only with patients who had either cancer or serious blood disease. He didn’t have cancer, or sickle cell anemia, or anything like that.

“If I get leukemia, will you be my doctor?” he asked me.

“Yes,” I told him. “But it’s a good thing you don’t have that now,” I said, adding: “I wish you the best, Mr. Sunshine.”


(*The patient’s name was not Mr. Sunshine, but it was equally evocative of his disposition.)

I’ve been thinking lately, what makes you recall some patients. I hope he’s doing OK, wherever he is now. Same for all my patients, really. I wish I could tell them.

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Illness is Not Discrete. On Feeling Sick, and Not Knowing What’s Next

This post is probably a bad idea. But I’ve been pondering it for two days now, since the room around me starting spinning. And I wish I were Jack Kerouac now, so that it wouldn’t matter so much if my thoughts are clear but that I tapped them out. Rat tat tat. Or Frank Sinatra with a cold. You’d want to know either of those guys, in detail. Up-close, loud, even breathing on you. You’d hire ‘em. Because even when they’re down, they’re good. Handsome. Cool, slick, unforgettable. Illness doesn’t capture them, or define them.

Two days ago I was feeling great. I went to the National Press Club for the first time, and was excited about some presentations I heard there, about which I took careful notes and intend, eventually, to share with some commentary. It was a sunny day, and I bought some groceries, planning a bunch of posts and to finish a freelance piece. In the evening I had dinner with my husband, and it seemed like my life was on track.

The rash was the first thing. Just some red, itchy bumps on the back of my neck. And then fatigue. Not just a little tired, but like I couldn’t write a sentence. And since then I’ve been in the center of a kaleidoscope, everything moving clockwise around my head. It’s not bright purple or hot pink and blue and stained glass-green kinds of colors circling, but the drab objects in the bedroom: the lamp, the shadow cast by the top of the door, the rows of light through the blinds, the brown and beige sheets, the back cover of last month’s Atlantic and my reading glasses on the nightstand, the gray bowl I’ve placed at hand, just in case I barf again. Walking is tricky. I’m dehydrated and weak, and my vision’s blurred.

This is not a pretty scene, if you could see it. And that’s the thing. The point.

Because in my experience, which is not trivial, people on both sides of illness – professionals and people you just know – are drawn to healthy people. A broken arm, a low-stage breast cancer that’s treated and done with, a bout of pneumonia – these are things that a career can afford, an editor can handle, friends can be supportive. But when you have one thing, and then another, and then another, it gets scary, it weighs you down. Just when you start feeling OK, and confident, something happens and you’re back, as a patient.

Today, in the apartment on this spring day, with fever and fatigue, I’ve got no choice. I am not a consumer now. Not even close. That is my role, maybe, when I go to the dentist and decline having x-rays or my teeth whitened. No choice, except if I go to a hospital, to have a bunch of blood drawn and my husband would fill in the forms before the doctors who don’t know me in this city inform me I’ve got a viral infection, and labrynthitis as I’ve had a dozen times before, all of a sudden, disabling. Nothing to do but rest and hydrate. And wish I’d gotten some other work done, but I couldn’t.

I’ve got to go with it, my health or illness, be that as it is. No careful critiques of comparative effectiveness research today. No reading about the Choosing Wisely guidelines. No post on Dengue, as I’d planned for yesterday.  Like many people with illnesses – and many with far more serious conditions – I’m disappointed. Maybe because I was sick as a child and missed half of tenth grade, I have trouble accepting these kinds of disruptions. Illness represents a loss of control, besides all the physical aspects.

I might try to watch TV, but more likely I’ll just fall sleep again. That happened yesterday. And for those of you health IT or gadget guys reading, who talk about smart phones and how useful they are for patients seeking info, or maybe even checking vitals, I’ll say this: I’m just glad I’ve got such a device, simply that I can call for help, that I can be in touch,  call my doctor and family. That makes being sick less scary.

This is a drag of a post, but it’s real. No point in blogging if I don’t say it like it is, what I am. If nothing else, this proves I’m alive. So there!

Better tomorrow –

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50-50, A Serious Film About a Young Man With a Rare Cancer

scene from "50/50"

The other evening I watched 50/50, a film about a 27 year old man with a rare kind of cancer, a malignant schwannoma. The tumor is growing and pushing into the protagonist’s lower spine. The movie, based in part on the true story of scriptwriter Will Reiser, surprised me by its candor.

Actor Joseph Gordon-Levitt smoothly portrays Adam Lerner, who soon finds out he has cancer. The opening scene captures him jogging in an early morning. He seems a nice, cautious and perceptive young man in a relationship. His rowdier buddy, played hardily by Reiser’s real-life friend Seth Rogan, proves loyal during Adam’s chemotherapy and, later, big spine surgery.

By its cast, I expected this might be a guys’ flick. Yes, there are jokes about sex and cancer. But the film reveals the young man wincing during sex because he’s in pain and can’t hide it. The young women are pretty much all attractive, but they’re not interchangeable props; the relationships are complicated and plausible.

An unexpected perk in the movie is the realistic family dynamic. Lerner’s mother, a worrying sort, wants to be there for her son and doesn’t trust that his girlfriend will sufficiently help him. Anjelica Huston effectively fills the mother’s role. Lerner rarely answers her calls, while she’s biding her time with a husband who, due to Alzheimer’s, doesn’t comprehend what’s going on. She respects her son’s privacy, but feels, understandably, isolated and scared.

The doctors are flawed, of course. The oncologist at the start doesn’t directly tell Lerner of his diagnosis but, instead, speaks into a dictaphone about the malignancy. He refers Lerner to an analyst of some sort, a young woman with little experience, for talk therapy.

When Lerner goes for surgery, the pre-op scene is frighteningly realistic to anyone who’s ever had a young family member go through this kind of surgery. The family and friends are worried. The patient, calmest of all among the group, can’t determine what will be his fate.

The term schwannoma derives from Schwann cells. These elongate cells normally envelop long nerves and rarely become malignant. Most schwannomas, or neurofibromas, are benign; these can cause pain and other symptoms by pressing on nerves, but don’t usually don’t spread or grow quickly. The names can be confusing, as there are several similar-sounding terms for these growths. Some people inherit a disposition to these non-malignant tumors. Rarely, as seems to have been the case in this story, a schwannoma takes an aggressive, invasive and sometimes lethal course. Another name for the cancerous form is malignant peripheral neural sheath tumor, or MPNST.

50/50 refers to the odds of Lerner’s survival, about which he read somewhere on the Internet shortly after his diagnosis. I’d give the movie a high score, 90+, mainly for its lucid, accessible approach to a cancer patient’s experience and concerns.

—-

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Counterfeit Drugs, A New Concern for Patients

This week the FDA issued an alert about fake Avastin. The real drug is a Genentech-manufactured monoclonal antibody prescribed to some cancer patients. Counterfeit vials were sold and distributed to more than a dozen offices and medical treatment facilities in the U.S. This event, which seems to have affected a small number of patients and practices, should sound a big alarm.

Even the most empowered patient – one who’s read up on his drug regimen, and engaged with his physician about what and how much he wants to receive, and visited several doctors for second opinions and went on-line to discuss treatment options with other patients and possibly some experts – can’t know, for sure, exactly what’s in the bag attached to his IV pole.

Counterfeit Avastin (images from FDA)

Scary because patients are so vulnerable –

The problem is this. If you’re sick and really need care, at some point you have to trust that what you’re getting, whether it’s a dose of an antibiotic, or a hit of radiation to a bone met, or a drug thinner, is what it’s supposed to be. If vials are mislabeled, or machines wrongly calibrated, the error might be impossible to detect until side effects appear. If you’re getting a hoax of a cancer drug in combination with other chemo, and it might or might not work in your case, and its side effects – typically affecting just a small percent of recipients – are in a black box, it could be really hard to know you’re not getting the right stuff.

What this means for providers is that your patients are counting on you to dot the i’s. Be careful. Know your sources. Triple-check everything.

The bigger picture – and this falls into a pattern of a profit motive interfering with good care – is that pharmacists and doctors and nurses need time to do their work carefully. They need to get rest, so that they’re not working robotically, and so that they don’t assume that someone else has already checked what they haven’t. And whoever is buying medications or supplies for a medical center, let’s hope they’re not cutting shady deals.

This issue may be broader than is known, now. The ongoing chemo shortage might make a practice “hungry” for drugs. And with so many uninsured, some patients may seek treatments from less-than-reputable infusion givers. The black market, presumably, includes drugs besides Avastin.

If I were receiving an infusion today, like chemo or anesthesia or an infusion of an antibody for Crohn’s disease, I’d worry a little bit extra. I mean, who will check every single vial and label and box? Think of the average hospital patient, and how much stuff they receive in an ordinary day – including IV fluids that might be contaminated with bacteria.

It’s scary because of the loss of control. This circumstance might be inherent to being a patient – in being a true patient and not a “consumer.”

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