Should People With Health Problems Talk About their Conditions?

By |May 19th, 2013

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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On Reducing Cancer Care Costs by Resetting Expectations, and Hope

By |August 5th, 2011

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

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

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

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

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

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

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

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

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

Going back to the NEJM piece -

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

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

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Vicious Verbiage Targets Cancer Patients’ Voices, at Cardiobrief

By |July 6th, 2011

A journalist who covers medical matters of the heart grabbed my attention on the Fourth of July. In The Voice of the Patient: Time To Bring Out the Muzzle?, Larry Husten at Forbes’ Cardiobrief blog, insinuates that the women who spoke at the FDA’s Avastin hearings are simpletons.

In his short strip, Husten skips the possibility that the testifying patients might understand science. He dismisses their familiarity with Avastin. He ignores their potential informational value as bona fide outliers, and jumps to this killer conclusion:

…When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob mentality that tears down any semblance of rationality or any possibility of intelligent discourse.

Medicine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical journalists should assist them in metastasizing their views.

This is rare language in a business journal:

Phrases like “these type of people” and “mob mentality” typically reflect fear of others, based in prejudice – the opposite of reason and science, to which the author aspires. Likening patients speaking out to “metastasizing,” a term normally applied to the lethal movement of cancerous cells, reveals a disturbed view of people with illness.

The Forbes Headline, in which the author and editor, or both, contemplate using a “muzzle” to silence patients, does not approach the norm in health care journalism, or even opinion-writing.

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Change the Channel?

By |March 16th, 2011

The situation in Japan remains grim. I can’t reasonably report on this, except to say what’s evident by the photographs, videos and usually-reliable sources: a second reactor may have ruptured. There’s been another burst of radioactivity into the air.

Flickr, Official U.S. Air Force photo stream

Meanwhile, thousands of bodies are being discovered in the post-Tsunami landscape along the northeast coast. The Emperor’s speech adds a feeling of gravity, essentially unfathomable to those who are not there, and maybe even to those who didn’t live, first, through the atomic bombings in that country 75 years ago.

people in a shelter, as shown on NHK world TV

Working my/our way* through The Pain of Others, Sontag writes:

What to do with such knowledge as photographs bring of faraway suffering? …For all the voyeuristic lure – and the possible satisfaction of knowing, This is not happening to me, I’m not ill, I’m not dying, I’m not trapped in a war – it seems normal for people to fend off thinking about the ordeals of others…

People can turn off not just because a steady diet of images of violence has made them indifferent but because they are afraid…

She considers the role of TV, and the CNN effect regarding images from the war in Sarajevo, and says now (in the book):

The question turns on a view of the principal medium of the news, television…Images shown on television are by definition images of which, sooner or later, one tires. What looks like callousness has its origin in the instability of attention that television is organized to arouse and to satiate…The whole point of television is that one can switch channels, that it is normal to switch channels….

*in reality, her book-essay – on war imagery – grips with relevance, I sped through.

Probably by now, my dear readers are wishing I’d write on something else, and somewhere else, which indeed I am doing with most of my time now. But I think the real-time contemplation of the images – and why we look at them, or don’t – is valuable in itself.

And also, maybe it would help the people of Japan, there, to know that people are thinking about their plight.

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Live-Blogging a Book, and the Earthquake

By |March 14th, 2011

I don’t know if makes sense to blog on a book by a woman who’s dead, who wrote about photographs and the news. But new media allows us to try new things, unedited. Here goes:

In Regarding the Pain of Others, which I began, unknowingly, on the evening before the recent quake and tsunami, Sontag begins Chapter 2:

Being a spectator of calamities taking place in another country is a quintessential modern experience <she refers mainly to war photography>…’If it bleeds, it leads’ runs the venerable guideline of tabloids and twenty-four-hour headline news shows – to which the response is compassion, or indignation, or titillation, or approval, as each misery heaves into view.

This observation, published in 2003, would account for CNN’s sending so much of its lead staff – Anderson Cooper, Dr. Sanjay Gupta, Soledad O’Brien and others – to northeastern Japan now. Some of us are drawn to the images of devastation, and these do sell.

(AP Photo/Asahi Shimbun, Toshiyuki Tsunenari)

The author continues, later:

…But there is shame as well as shock at looking at the close-up of a real horror. Perhaps the only people with the right to look at images of suffering of this extreme order are those who could do something about it – say, the surgeons at the military hospital…or those who could learn from it. The rest of us are voyeurs, whether or not we mean to be…

So maybe (as she sees it, in Chapter 2) it’s OK to look at the images if there’s a good reason to do so – for examining how others cope with a catastrophe by distributing food in limited amounts in orderly lines in order to learn, for example; or for demonstrating which structures withstood the quake and flood, which breezed over the seawall; or for planning the location and cooling protocols for nuclear reactors elsewhere…Also, quite plainly, the images may serve to raise money and needed support for the devastated region.

A soldier carries an elderly man on his back to a shelter in Natori city, Miyagi prefecture on March 12, 2011. (Photo credit: STR/AFP/Getty Images, via Flickr, as permitted)

Back to medicine – today, people are quite familiar with images of sick people. There are open, on-line communities of people sharing heartache and complications, sometimes with wrenching images. TV and the movies familiarize us with catastrophes to such a degree they may seem ordinary or unimportant. We’re desensitized, I fear, in which case the news audience’s attention is strangely reassuring.

"Japan Earthquake: Watching the Terrible News on TV" (flickr by LuisJouJR)

Maybe the people who are looking at the pictures are doing so because they really care about the people in northeast Japan. Or maybe it’s because they’re wondering – could this happen to me, all of a sudden, in the middle of an ordinary day, i.e. do I need to worry about this? Or both.

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Contemplating Empathy, Early This Morning After the Earthquake

By |March 11th, 2011

Last night I began reading a long essay, Regarding the Pain of Others, by Susan Sontag. The work dates to 1993, and centers on the power of photographs of war. She considers Virginia Woolf’s earlier reflections on horrific images from the Spanish Civil War, in Three Guineas.

Sontag writes: “Not to be pained by these pictures, not to recoil from them, not to strive to abolish what causes this havoc…for Woolf, would be the reactions of a moral monster… Our failure is one of imagination, of empathy: we have failed to hold this reality in mind.”

This morning I awoke early and saw video of an earthquake rattling portions of Japan and a tsunami destroying broad swaths of land in a country where I’ve never been. I’m distracted by those images and while I’m trying to work on another subject, my mind flips back to what’s going on there, along the Pacific.

Japanese Tsunami Victims

(from Flickr: Japanese Tsunami Victims, by Logan)

So it seems like the right day to review some basics on empathy. I hope my readers won’t mind if this part is too simple. It’s just that the word is thrown around so often lately, in places like Twitter and Time Magazine, on doctors and compassionate health care; I should remind myself if no one else exactly what empathy is supposed to be.

First, a distinction: Sympathy usually refers to feelings elicited upon a mutual or shared experience; empathy involves understanding another’s experience.

A post on KevinMD by Barbara Ficarra, a few months back, led me to a 2003 academic review on empathy in clinical medicine, by Jodi Halpern, MD, PhD, who writes:

…Outside the field of medicine, empathy is an essentially affective mode of understanding. Empathy involves being moved by another’s experiences. In contrast, a leading group from the Society for General Internal Medicine defines empathy as “the act of correctly acknowledging the emotional state of another without experiencing that state oneself.”3

Halpern explains the difference between empathy and sympathy, with a distinction I was taught in a rudimentary ethics class in medical school:

This recent definition is consistent with the medical literature of the twentieth century, which defines a special professional empathy as purely cognitive, contrasting it with sympathy. Sympathetic physicians risk over-identifying with patients…

Th open-text article in the Journal of General Internal Medicine (18: 670–674, 2003) is well-worth the full read.

Meanwhile I’ve discovered measurable criteria for physicians’ empathy, the so-called Jefferson Scale of Empathy. From the Science Daily (via the Tweet, above) on a report in the journal Academic Medicine:

Researchers used the Jefferson Scale of Empathy (JSE) — developed in 2001 as an instrument to measure empathy in the context of medical education and patient care. This validated instrument relies on the definition of empathy in the context of patient care as a predominately cognitive attribute that involves an understanding and an intention to help. The scale includes 20 items answered on a seven-point Likert-type scale (strongly agree = 7, strongly disagree = 1)…

This sort of empathy rating system seems strange to me, even alienating; it’s plainly too numerical.

I’d rather stick with my feelings, and stare at today’s photographs and videos, and finish reading Sontag’s notes on The Pain of Others, this evening.

Monster Quake Hits Japan (the Australian.com, March 11, 2011)

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I Feel Your Pain (not)

By |January 4th, 2011

A tweet hit me on Sunday evening, from a stranger:

@Mibberz

I’m saddened by how many ADULTS can’t get their #rheum 2 understand the level of severity of their pain.What hope is there for my daughter?

I half-watched an on-line exchange about the issue, and then went about my family’s dinner preparations.

The message came from Amy Cunningham, who blogs about her daughter’s experience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that followed, playing automatically and disjointedly in multiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.

I wasn’t alone in that. Turns out that Rheumatoid Arthritis Warrior Kelly Young (@rawarrior) was all over the matter. She’s got a Facebook discussion going on the topic and a post today called Some Rheumatologists Don’t Understand How Much It Hurts.

The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.

How wrong they were -

Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.

Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.

I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.

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You’re Sick and I’m Not, Too Bad (on Empathy)

By |February 16th, 2010

“The insurance market as it works today basically slices and dices the population. It says, well you people with medical conditions, over here, and you people without them, over here…

- Jonathan Cohn, Editor of The New Republic, speaking on The Brian Lehrer Show, February 16, 2010*

There’s a popular, partly true, sometimes useful and very dangerous notion that we can control our health. Maybe even fend off cancer.

I like the idea that we can make smart choices, eat sensible amounts of whole foods and not the wrong foods, exercise, not smoke, maintain balance (whatever that means in 2010) and in doing so, be responsible for our health. Check, plus.

It’s an attractive concept, really, that we can determine our medical circumstances by informed decisions and a vital lifestyle. It appeals to the well – that we’re OK, on the other side, doing something right.

There is order in the world. God exists. etc.

Very appealing. There’s utility in this outlook, besides. To the extent that we can influence our well-being and lessen the likelihood of some diseases, of course we can!  and should adjust our lack-of-dieting, drinking, smoking, arms firing, boxing and whatever else damaging it is that we do to ourselves.

I’m all for people adjusting their behavior and knowing they’re accountable for the consequences. And I’m not keen on a victim’s mentality for those who are ill.

So far so good -

Last summer former Whole Foods CEO John Mackey offered an unsympathetic op-ed in The Wall Street Journal on the subject of health care reform. He provides the “correct” i.e. unedited version in the CEO’s blog:

“Many promoters of health care reform believe that people have an intrinsic ethical right to health care… While all of us can empathize with those who are sick, how can we say that all people have any more of an intrinsic right to health care than they have an intrinsic right to food, clothing, owning their own homes, a car or a personal computer? …

“Rather than increase governmental spending and control, what we need to do is address the root causes of disease and poor health.  This begins with the realization that every American adult is responsible for their own health.  Unfortunately many of our health care problems are self-inflicted…

Now, here’s the rub. While all of us can empathize, not everyone does. And few citizens go to medical school. Some, uneducated or misinformed, might sincerely believe that illnesses are deserved.

So let’s set some facts straight on real illness and would-be uninsurable people like me:

Most people who are sick – with leukemia, diabetes, osteogenesis imperfecta, heart disease, multiple sclerosis, scoliosis, glycogen storage disease Type II, depression, Lou Gehrig’s disease, sickle cell anemia, rheumatoid arthritis or what have you – are not ill by choice. They didn’t make bad decisions or do anything worse, on average, than people who are healthy.

Rather, they became ill. Just like that.

The idea of an insurance pool is that when everyone in the community participates, whoever ends up with large medical expenses is covered, explained Jonathan Cohn. When contributions come in from all, including those who are healthy, funds are sufficient to provide for the sick among us.

As things stand, the insurance industry divides us into likely profitable and unprofitable segments. “So you know if you’re one of the people born with diabetes, you have cancer, you had an injury that requires lengthy rehabilitation, tough luck, you’re going to end up in that pool of unhealthy people,” Cohn said.

Insurance is no cure-all, to be sure. It won’t take away my cousin’s cancer or fix Bill Clinton’s heart. That would require research and better medicines.

Depriving insurance, or care, to those who need it most is inconceivable to a society as ours was intended. It’s uncivil.

*as heard on The Brian Lehrer Show 2/16/10: Rates on the Rise

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On Precious

By |February 8th, 2010

This is my first film review, if it is that.

I was tempted to write about Ethan Hawke, hematologist among vampires in Daybreakers, but gore’s not my favorite genre. A mainstream choice would have been Harrison Ford solving the enzyme deficiency of Pompe disease in Extraordinary Measures, but I didn’t get sucked in. I chose Precious, instead.

Poster for Precious, the film based on the novel "Push," by Sapphire

This luminous movie relates to the practice of medicine everyday, big-time. Directed by Lee Daniels and based on the novel Push by Sapphire (Ramona Lofton), the film follows a very obese Harlem teenager who’s pregnant with a second child by her abusive father. She’s humiliated daily by her welfare-dependant mother who forces her to cook greasy food and perform sexual acts all-the-while telling her she’s worthless. She’s 17 years old and can’t read. Things can get worse, and do.

What’s relevant to medical lessons?

For doctors –

The message of Precious, that every human life has value, should be obvious to every person employed in the health care system. But I know too well that’s not true.

When I was a medical student in 1985, working with a team of surgery residents, we cared for an obese young woman from Harlem who came in with a life-threatening case of pancreatitis. Her internal insulin-manufacturing organ was so inflamed that her entire gigantic abdominal cavity was tender and bloody. During what seemed like an endless operation in the middle of the night I stood and held firmly a retractor as best I could. The next morning and thereafter, when we made rounds, the residents called her “the whale.”

I learned a lot about pancreatitis and surgery that month. But I couldn’t understand how she, my patient, tolerated the team’s attitude. She didn’t seem to mind, perhaps because we saved her life and the care we provided was free. In retrospect, I wonder if maybe, like Precious, she was too-accustomed to disrespect.

Of course, this is an extreme example from 25 years ago. And I know from my experience working for years in a hospital, and in my years as a patient, that most doctors treat most patients with appropriate dignity. But those residents I worked with then are senior practicing physicians now, likely some on the faculty of medical schools. The disposition to disparage patients, more often subtly – in keeping them waiting without good reason, in dismissing their long lists of real concerns, in somehow putting ourselves above them and even, still, occasionally expressing frank contempt for some unfortunate souls still permeates the hospital culture.

For patients -

When Precious is abused, her mind runs elsewhere. She imagines herself, huge body and all, cast glamorously among television stars or dancing with popular singers. She pretends that she’s all right even when she’s not, really. Finally she speaks up for herself, telling a social worker about her predicament.

Ultimately that’s what makes the difference – her confidence in the value of her own bruised life. She recognizes that, despite everything, she’s a full-fledged human deserving better and has the guts to ask for help. By insisting, by knowing, that her life matters, she pushes herself out, if only partly, from the bleakest of circumstances.

If you’re disabled, hurt, wounded, damaged – ask for help when you need it. Respect yourself, as Precious did. That sends a signal to doctors that you value your life, and they should treat you accordingly.

Hopefully they’ll be paying attention.

—–

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Why Medical Lessons?

By |December 31st, 2009

One of the things I liked best about practicing medicine is that I was constantly learning.

Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s happening to a man with leukemia whose platelets are dangerously low, or whose lymphoma is responding to treatment but can’t take anymore medicine because of an intense, burn-like rash. You’d have to look stuff up, sort among clues and discuss the case with the team and other physicians.

And then you’d get to talk to the patients and their families. In the teaching hospital where I worked as a clinical oncologist, you’d encounter a mix of folks from my east side neighborhood, Russian and Chinese and Spanish-speaking immigrants with homes in all parts of New York City, and a spectrum of visitors from countries like Cambodia, Pakistan and Ecuador. Each case offered a window into another family’s values and concerns.

Being a patient is an entirely different sort of experience except that, like being a doctor, it involves learning about medicine, problem-solving and meeting all kinds of individuals.

As a child with scoliosis – a curved spine – I discovered early that some therapies don’t work as you might hope or expect. I wore a back brace for 4 years, 23 hours each day, and it didn’t do the job. Then, my parents took me to consult with most of a dozen male orthopedists. Their crassness, frankness and sometimes kindness impressed me. I realized that like any other humans – whether they’re dictators or shopkeepers – doctors vary in their personalities.

Today I recall one young doctor who helped me, a resident at the Hospital for Joint Diseases. He came by my room early in the evening of December 31, 1974 because I needed a new intravenous (IV) catheter. By then I’d been in the hospital for weeks after spine surgery; there was hardly a vein left for heparin, a blood-thinner. It turned out the resident came from a town on Long Island not far from where I lived. He spoke openly, about his experiences in high school, as he calmly and patiently patted down my arms and hands and legs and feet until he found a spot for the IV. He got the line in, and I got my medication.

Just before midnight, Dick Clark was on TV for a “New Year’s Rockin’ Eve.” The resident, whose name I don’t recall, came by to see how I was doing. He stayed for perhaps 15 minutes, for what seemed like no reason other than to keep me company. We counted the seconds and watched the ball drop on a small black-and-white TV suspended by a hinged-metal arm over my hospital bed.

He was compassionate, and that made me feel better. What a difference he, one essentially unnamable young physician, made in my experience of that New Year’s eve in the hospital, and in my life and work.

Today, December 31, I think of him as I navigate my path as a patient and as a doctor. I’m still learning about medicine, every day in each new year.

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