Why Not Tweet When You Are In the Hospital and Not Feeling Well?

A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side 

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering.  Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Split decision?  #nojudgement

Ideas welcome!

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A Message for Doctors, on Christmas in the Hospital

When I was 14 years old, I spent Christmas as a patient in the hospital. While that circumstance might seem sad, it wasn’t my holiday to celebrate. Rather, it was scary, because my usual surgeon was away on vacation, and my care was in the hands of strangers.

Years later, after medical school, I spent more than a dozen Christmases working. Maybe more. Because I am Jewish, it seemed appropriate for me to work on that date. The main drawback, as I matured in my physician-ship, was that my sons were home from school; it was a day I might spend with them. But as holidays go, it was one when I didn’t mind working. I was glad to do it.

So here’s the thing for doctors on call on holidays like today or Thanksgiving, or Easter or Eid, or the Jewish New Year – here’s what I’d say to the young doctors, residents and fellows, if I were still making rounds, covering more patients than usual, and eager to get home:

Please don’t race through rounds. Be a little more generous than usual with your time, thoughts and words. Yes, your family wants you to get home today. But the people for whom you’ve accepted responsibility, to take care of them today, need you too.

Patients who are in the hospital over the holidays aren’t there by choice. They may need extra examination and a bit of hand-holding, besides greater diligence at a time of year when the on-call schedule “turns” more frequently. It’s when some doctors may be loathe to call a cardiology consult for an abnormal cardiogram, or an infectious disease specialist to evaluate fevers…Patients need the doctor who’s there, who may be less supported than usual, with fewer nurses or physician assistants than usual, to notice if they need a change in their meds, or if they’re short of breath, or in pain.

My thoughts are with people who are sick in the hospital today, the patients and their families, and the nurses, doctors and support staff. And everyone else –

Cheers, salud! Merry Christmas to those who celebrate it! And thank you to the doctors and nurses for being there when patients need you.

I wish all my readers a good holiday and healthy 2014,

ES

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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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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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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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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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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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Why Should Physicians Blog or Use Twitter?

Is a question I ask myself almost every day. When I started this blog, it was partly a response to what I perceived an unbalanced attack on the value of breast cancer screening by the mainstream news outlets. Why it’s continued is, mainly, that I find it liberating and, in a strange way, fun. As I’m no longer practicing, this wide-open world of shared facts, some questionable, and new ideas keeps me alert and, maybe, in-touch.

Today several physicians tell of the benefits of social media for physicians. One post by my colleague Kevin MD is titled Bury Bad Doctor Reviews With a strong Social Media Presence. Kevin has, previously and elsewhere, described the potential value of blogs that encourage nuanced discussion of health care news. What he reveals, today, is that blogs can be a way for doctors to put forward a positive image of themselves and their practices. Closer to home, orthopedist Howard J. Luks, MD writes to the point: on social media, health and marketing.

But if that’s what doctors’ blogs are about, why don’t we just call it PR?

As I’ve said before, I do see value in academics blogging, especially if they’re not afraid to question, and don’t simply kiss up to authors who’ve published articles in major journals. I can see how Twitter from a trusted source like the CDC could be a rapid way to disseminate information about a new viral strain, an urgent need for blood donors, or a real public health emergency.

But for most practicing physicians, I just don’t see how they have time for it. Unless it’s like a hobby, or better – an open notebook – a way of recording your thoughts on what you’ve seen and learned in the day. That kind of blog can be great, even useful, for patients and other docs. The main thing is that the purpose of physicians’ and hospitals’ websites or blogs should be clear.

Recently I saw a tweet by @jamierauscher about whether she thinks to inform her docs about her use of social media. That’s a separate topic.

Later.

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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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A Life-Changing Day

Today marks 9 years, exactly, since Dr. L. gave me the Call.

It was a Wednesday afternoon. I was in clinic, caring for patients with blood diseases. In between seeing my patients and supervising the residents and fellows, I checked my voice mail. The message from Dr. L. said I should please contact her. Already, by the tone of her voice, I knew the results of the needle biopsy I’d had the morning before. It was positive. I had an infiltrating ductal carcinoma in the left breast.

I stayed to finish seeing the patients. Around 6PM, I went back to my office to complete notes and return calls. Only after all that was done, my desk set with a decipherable stack of tasks and charts – just in case someone else should need to complete my work, I went home.

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