a change of place

Dear Readers,

Please follow my new posts at Forbes!

Thank you for your readership, comments and support,

ES

(what follows here at ML will be old posts, rotated occasionally):

Related Posts:

  • No Related Posts
By |September 7th, 2014|Blogs, from the author, journalism|Comments Off on a change of place|

Looking Back on ‘The Normal Heart,’ and Patients’ Activisim

A few weeks ago I saw The Normal Heart, a play about the early, unfolding AIDS epidemic in NYC and founding of the Gay Men’s Health Crisis. The semi-autobiographical and now essentially historical work by Larry Kramer first opened at the Public Theater in 1985.

Cover of the paperback, published by “Plume,” from Wikipedia

The story takes on the perspective of a young man who’s seeing the death of too many of his friends and neighbors from a strange and previously-unknown disease. As much as the situation is disturbing, and frightening, and shattering of the gay men’s barely decade-old freedom to behave as they choose, most of the protagonist’s associates just can’t deal with it. Nor can other, potentially sympathetic officials like Mayor Koch, health officials at the CDC and NIH.

Among the men who form GMHC, in this drama, there’s a mixed crew. Some say they’re  embarrassed by the attention the illness drew to some gay men’s behavior. Many stay fully or half-closeted, understandably insecure in their jobs. They worry about discrimination and rejection by families, landlords and even doctors, some who were reluctant to take on patients with this disease. Some of the affected men and their friends, straightforwardly, fear death; others are in plain denial about what’s going on in their community.

The scenes unfold between 1981 and 1984, more or less the time when I moved to Manhattan, lived downtown, applied and matriculated at NYU’s medical school. Many of the first clinical cases, i.e. patients, I saw, were young men with HIV and Kaposi’s sarcoma, one of the first conditions associated with the outbreak and that’s featured in the play – the appearance of maroon or violet-colored, usually but not always flat, often elongate, spots on the skin. The AIDS patients tended to have anemia, either from immune blood disorders or, more often, infection in the bone marrow. As a hematologist-to-be, I was intrigued.

Then and now, looking back, it’s hard not to respect those men’s activism, especially those who, with Kramer, created the AIDS Coalition to Unleash Power (ACT UP). They were impatient with the pace of research and physicians’ protocols, and spoke out so emphatically about their needs: for more research; for prevention and treatment; for easier access to new drugs; and, simply, for good medical care.

The play closes soon in New York;  its producers are said to be planning a tour and a London production of the work. Patients and their advocates, of all backgrounds and particular concerns, might take notes.

Related Posts:

The Cost of Room Service and Other Hospital Amenities

A perspective in this week’s NEJM considers the Emerging Importance of Patient Amenities in Patient Care. The trend is that more hospitals lure patients with hotel-like amenities: room service, magnificent views, massage therapy, family rooms and more. These services sound great, and by some measures can serve an institution’s bottom line more effectively than spending funds on top-notch specialists or state-of-the-art equipment.

Thinking back on the last time I visited someone at Sloan Kettering’s inpatient unit, and I meandered into the bright lounge on the 15th floor, stocked with books, games, videos and other signs of life, I thought how good it is for patients and their families to have a non-clinical area like this. The “extra” facility is privately-funded, although it does take up a relatively small bit of valuable New York City hospital space (what might otherwise be a research lab or a group of nice offices for physicians or, dare I say, social workers) seems wonderful.

If real health care isn’t an even-sum expense problem, I see no issue with this kind of hospital accoutrement. As for room service and ordering oatmeal for breakfast instead of institutional pancakes with a side of thawing orange “juice,” chicken salad sandwiches, fresh salads or broiled salmon instead of receiving glop on a tray, that’s potentially less wasteful and, depending on what you choose, healthier. As for yoga and meditation sessions, there’s rarely harm and, maybe occasionally, good (i.e. value).

But what if those resources draw funds away from necessary medicines, better software for safer CT scans and pharmacies, and hiring more doctors, nurses or aides? (I’ve never been in a hospital where the nurses weren’t short-staffed.) As for employees who clean – hospital floors, nursing stations, patients’ TV remotes, IV poles, computer station keyboards and everything else that’s imperfect and unsterile, they should get more funding, everywhere. Clerks and transport workers are frequent targets in hospital layoffs, but they’re needed just the same.

Two years ago when a family member was hospitalized, his doctor – a senior cardiologist – personally wheeled him in the stretcher from the x-ray area back to the emergency room bay where he waited for a room, so that he wouldn’t spend more than the half hour or so he’d already been in the hallway, after the film was taken, waiting for the escort service. What’s wrong is not so much that the physician helped with a menial task that isn’t his job; he’s a really nice and caring sort, and I believe he didn’t mind, really, except that he does have a wife and family at home who surely were waiting on that day.

The cardiologist might have used that time, instead, to examine more closely someone’s neck veins or heart sounds, or spent a few more minutes reading a journal article, which would make it more likely he’ll make the right recommendation to his patients about, say, a drug for congestive heart failure or a new blood thinner. We can’t short-change hospital workers in such a way that physicians fill in on ordinary tasks because there’s no one else to perform those, while patients get first-class meals and art classes to make them happier.

I’m reminded of boarding airplanes. I fly coach, and as I pass through the first class section I often think how nice it would be to sit in front and have pleasant flight personnel attend my every need to maximize my comfort during what’s typically a miserable trip. But then, I’d be paying perhaps $3,000 instead of $680 for the same flight.

As passengers, maybe we’re not so discerning about our pilots or the model of airbus as we should. A pleasant, cheery place isn’t always the safest.

In the NEJM piece, Goldman and colleagues write:

…Why do amenities matter so much? Perhaps patients simply don’t understand clinical quality. Data on clinical quality are complex, multidimensional, and noisy, and they have only recently become systematically available to consumers. Consumers may be making choices on the basis of amenities because they are easier to understand.

The authors note the potential value of amenities in patients’ experiences and outcomes:

One could argue that they’re an important element of patient-centered care. If amenities create environments that patients, providers, and staff members prefer, then providers and staff members may give better care and service in those environments and patients may have better health outcomes.

Amenities are costly, but they attract patients:

… the value of amenities is important because our health care system currently pays for them. Under its prospective payment system… Each hospital receives the same amount of reimbursement for each patient with a given diagnosis and is free to decide what mix of resources to devote to clinical quality and what to spend on amenities. In our research, we found that improvements in amenities cost hospitals more than improvements in the quality of care, but improved amenities have a greater effect on hospital volume.

I’ll remind my readers that health care costs in the U.S. total over $2.3 trillion per year, and that number is growing.

Hospital amenities are really nice, and I believe they can help patients heal. But I don’t know if it’s right to spend limited health care dollars on more than essentials.

Related Posts:

The Physical Exam’s Value is Not Just Emotional

Lately there’s been some talk about the value of the physical examination. It’s my sense that this discussion was sparked by a lovely piece by Danielle Ofri published two weeks ago in the New York Times. In that, Dr. Ofri describes a patient’s visit in which, toward the end and almost as an afterthought, she pulled out her stethoscope and performed a physical exam in a perhaps cursory but essential, thoughtful manner.

Or is it so cursory? There’s little scientific evidence to support the physical exam in practicing medicine but, as she writes:

…Touch is inherently humanizing, and for a doctor-patient relationship to have meaning beyond that of a business interaction, there needs to be trust — on both ends. As has been proved in newborn nurseries, and intuited by most doctors, nurses and patients, one of the most basic ways to establish trust is to touch…

KevinMD picked up on the story, essentially echoing the idea in a post called “Touch Humanizes the Doctor-Patient Relationship.” In that, he considers that some doctors (including him, previously) dismiss the physical exam obsolete – “like staying with a horse and buggy when cars are rapidly becoming available.”

It happens I know something about physical exams. Early in my years as a junior faculty member at Cornell’s medical school, around 1994, I was assigned to teach physical examination to second-year students during each of two consecutive spring semesters. To prepare for teaching, I carefully reread my copy of Bates’ Guide to Physical Examination.

my old copy of Bates’ Guide to Physical Examination, on my desk now

Together, my students and I listened to normal and abnormal heart sounds. We looked in each others eyes with ophthalmoscopes. We visited some of my patients with lymphadenopathy (swollen glands), big livers and palpable spleens who were willing to let us learn from their pathological physical findings. We listened and described course and fine rales on some pneumatics’ lung exams, and checked arthritic joints for swan-like deformities characteristic of rheumatoid arthritis. We examined patients’ petechiae, purpura, ecchymoses and more, and discussed the differences among those findings and what they might signify. All of this we did without CT scans or echos.

I know also, as a patient, that physical examination can be life-saving. Once, when I was in the hospital as a child and had unexplained fevers after surgery, it seemed for a while that no one could figure out what was wrong. I was terrified. The surgical team consulted with an infectious disease specialist, who as I recall ordered a whole bunch of unpleasant tests, and then my dad – a physician – noticed that one of my legs was more swollen than the other. He realized, based on my physical exam, that I might have a blood clot. It turned out that he was right.

So I agree that the physical exam is humanizing. So much so that, later in my career when I routinely donned space suit-like gowns and masks on rounds for the leukemia and bone marrow transplant services, I became frustrated by those barriers, and by the very lack of touch which, I think, can help patients heal.

But what’s also true, in a practical and bottom-line sort of way, is that a good physical exam can help doctors figure out what’s wrong with patients. If physicians were more confident – better trained, and practiced – in their capacity to make diagnoses by physical exam, we could skip the costs and toxicity of countless x-rays, CT scans and other tests.

Recently I wrote a piece on medical education and going back to basics. The physical exam should be included, for sure.

Related Posts:

Henrietta’s Cells Speak

“One of the ways that I gained the trust of the family is that I gave them information.”

(R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks’ family, Columbia University, Feb 2, 2010)

This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.

Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.

HeLa cells with fluorescent nuclear stain (Wikimedia Commons)

Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.

Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants’ unfortunate financial disposition, to current controversies in bioethics.

In the years following their mother’s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.

The issue is this: her husband had but a third-grade education. The children didn’t know what is a “cell,” “HLA-testing” or “clone.”

The family had essentially no idea what the doctors who’d taken, manipulated and cloned their mothers’ cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.

Years later, when they learned that their mother’s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered.

“Even a basic education in science would have helped,” Skloot said. “Patients, they want to be asked, and they want to be told what’s going on.”

Well said!

Related Posts:

newsletter software
Get Adobe Flash player