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 Theoretical Note to My Students, On a Breast Cancer Case and Future Learning

Last week my students – who are, necessarily, abstracted here – studied breast cancer. How the course goes is that we meet in a small group and, each week, work through a case by Problem Based Learning. The recent case concerned a woman who, at age 35, noted a small breast lump. Each day we acquired more information about the patient, such as the size and molecular features of her tumor and prognosis. We sorted through her treatment options.

a traditional lecture hall (Wikimedia)

a traditional lecture hall (Wikimedia)

It was a dense subject. Over 4.5 hours we discussed what kind of biopsy she needed – aspirate or core needle? We considered if excision in an operating room is required to establish a breast cancer diagnosis. (rarely) We reviewed breast imaging methods (mammograms, sonograms and MRI) and tumor staging. We covered some pathology techniques including OncotypeDx and Her 2 testing by IHC or FISH. We spoke about risk factors and BRCA testing – how that’s done, what it costs and when it might be indicated. We looked at the molecular biology of Her2 signaling, and how that might be pharmacologically blocked. We considered the nomenclature of LCIS and DCIS, and the concept of overdiagnosis. We talked about the woman’s decisions for surgery (lumpectomy or mastectomy) and sentinel node evaluation. We considered kinds of adjuvant therapy including hormone blockers, chemotherapy combinations, radiation, antibodies including Herceptin, and other treatments she might receive. We spoke about her prognosis and odds of recurrence.

We spent time on the statistical concept of lead-time bias. And more. Medical school isn’t easy.

What I hope for my students, real and in cyberspace, is that they’ll always try to do what’s best for their patients. Sometimes in PBL we use PowerPoint. So here’s a list of three things to keep in mind, on learning – not just about breast cancer, but about all aspects of medicine:

1. Keep studying. Patients want and rely on their doctors to stay up-to-date about medical and scientific knowledge in their field of practice.

2. Keep paying attention, so you’ll hear and recall your patients’ concerns and preferences, and offer care that’s mindful of their goals and values.

3. Keep thinking, constantly – how the data applies to the person, an individual, the real patient you’re trying to help.

Of course you should keep asking good questions, solicit advice from colleagues, be respectful of the people who entrust you with their lives…

The best presentations don’t cover too much ground, so I’ll stop here.

See you in the morning, or next week,

ES

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Birth of the Metastatic Breast Cancer Alliance

This week marks 11 years since my breast cancer diagnosis. My feelings are mixed. On the one hand, I’m keenly aware, and constantly appreciative, of the fortune of being alive and, as far as I know (knock on virtual wood), free of the disease. That’s great, of course, but I’m lucky – so far at least, still vying not to be cast off by some strange turn of statistical, informed roulette. I can’t help but think, especially today, of my countless BC “sisters” with metastatic disease.

October 13 is Metastatic Breast Cancer Awareness Day. In 2009, the U.S. Congress voted to designate this day for attention to the particular needs of people with metastatic breast cancer (MBC). Although it’s been unofficial since that year, the day has been adopted by several breast cancer agencies as a time to rally in support the cause – and needed research – for people affected by MBC.  For people who are living with MBC, the immediate goals are not so much to prevent breast cancer, or necessarily to cure it, but to find better treatments so they can live longer and fuller lives.National Metastatic Breast Cancer Awarness Day avatar 180 by 180 px

The number of women living with metastatic breast cancer is unknown. Almost all deaths from the disease occur in people who have advanced or metastatic (Stage 4) cases. This year, some 40,000 women and 400 men will die from breast cancer in the United States. According to the Centers for Disease Control, cancer is the number 1 cause of death in women between the ages of 35 and 64 years. Only lung cancer accounts for more cancer deaths among women. Almost all deaths from breast cancer occur in women with Stage 4 disease. The World Health Organization reports that approximately 458,000 will die from breast cancer this year, around the globe.

These are the kinds of numbers that can be hard for some people to face, or think about too much. Deaths from breast cancer amount to 110 people each day in the U.S., or 1,255 each day, around the globe. I’m thinking of a lecture room of women every day in the U.S., or a train’s worth.., every single day, on average. Hard to envision. But it’s almost impossible not to get the message if just one woman, perhaps at the table over a lunch meeting, tells you about her daily life with relapsed or otherwise metastatic disease, and no end of treatment in sight.

If you break the deaths down by age group, as does the American Cancer Society in its most recent report on Breast Cancer Facts & Figures, you’ll find these numbers in Table 1: over 1,000 women die of breast cancer each year under the age of 40 years; an additional 4,780 die under the age of 50; almost 12,000 die between the ages of 50 and 64; the remainder of BC deaths (nearly  23,000) occur in people age 65 and older. The overwhelming proportion of cases arises in women, although there’s a trend of more cases in men. The median age of a breast cancer diagnosis is 61 years; this is largely a disease of middle-aged women.

Some encouraging news on the research front, besides new drugs in the pipeline and ongoing trials, is the formation of a new, cooperative coalition of breast cancer charities that will work together to address the problem MBC. The new Metastatic Breast Cancer Alliance includes a spectrum of pink and gray agencies, young and old, working together. The main thing is to promote knowledge and research about breast cancer metastases – to reduce formation and growth of metastases, and to treat those affected with better, less toxic meds.

I’m delighted to see an example of BC agencies working together, constructively. Sure, each group has its particular priorities and “personality,” if you will. But we all want to end misunderstanding, and we all hope to improve the lives of people living with Stage 4 disease. Breast cancer is not “easy.” It’s serious and life-destroying. The more research and scientific attention that we devote to men and women with metastatic breast cancer, the more likely will be an extension of their survival, and improved quality of what lives they’ve living, now and hopefully in the future.

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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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