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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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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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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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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Thank You, Rachel and Susan

Yesterday morning, two women who were active in the on-line breast cancer community died.

Rachel Cheetham Moro (1970 – 2012) was a critical thinker who vigorously supported BCAction and the NBCC’s 2020 deadline. She was a generous and thoughtful on-line friend to many women in the metastatic and more general BC community, where she used the handle @ccchronicles. Her blog provided a running, witty commentary on breast cancer news and trends. Interspersed, she detailed occasional and lately, more frequent visits to the hospital, a Florida vacation, and reflections on her earlier years. In a recent post, she included this wonderful high school photo.

high school photo, from the Cancer Culture Chronicles

Dr. Susan Niebur was a mother in her late 30s, an astrophysicist and blogger who generously shared her experiences at her Toddler Planet blog and elsewhere, including on Twitter as @whymommy. She dealt with inflammatory breast cancer starting in April, 2007. In recent months she wrote less frequently, but  positively somehow, while taking radiation treatments for painful bone mets, going in and out of the hospital and, most recently, receiving hospice care at home.

Susan Niebur in 2011, Toddler Planet

Each of these women inspired many people I know. They were brave and open, and helped others to understand what it’s like to face progressive, metastatic disease. Their words didn’t only affect people with breast cancer, but influenced also their loved ones, and individuals who face all sorts of limiting illness.

Thank you, both, for what you’ve taught me about life.

ES

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A Good Personal Health Record is Hard to Find

Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.

One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.

The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an OR report from my spine surgery, copies of lab results that the ordering physicians chose to send me, path reports from my breasts, a skin lesion or two, and, more recently a colonic polyp, bone density studies from 2004, EMGs and more, essentially miscellaneous results.

None of the records I have are digital.

A few years back I considered using Google Health. But their service, as I understood it, involved scanning documents and uploading them to the Cloud, or paying someone else to do so. That sounded like a hassle. But even had I done that, I wouldn’t have been able to, say, see a graph of my hemoglobin since 1986, or something as simple as my weight changes over time. When Google Health folded a few months back, I was disappointed. At the same time, I breathed a sigh of relief that I hadn’t invested my personal and limited energies into putting my records there.

But now what?

I searched for a PHR, again on-line, and found some commercial stuff, mainly targeting doctors’ offices and larger health care systems. Medicare’s information on Managing Your Health Information Online offers bullet-point explanations on Why Use PHRs?

But I needed no convincing. What I need is software, or a platform, that’s user-friendly and secure. Ideally mine would mesh with my physicians’ records, but my doctors use a variety of record systems. So it’s up to me to integrate the data, if anyone will. The problem is there’s little out there, as best I can tell, that’s intended for patients. Most IT companies are, for now, focused on getting doctors to sign on.

So I’ll start an Excel spreadsheet, today, on my PC. There must be a better way.

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Thoughts, on Getting My Photo Taken at a Medical Appointment

A funny thing happened at my doctor’s appointment on Friday. I checked in, and after confirming that my address and insurance hadn’t changed since last year, waited for approximately 10 minutes. A worker of some sort, likely a med-tech, called me to “take my vitals.”

She took my blood pressure with a cuff that made my germ-phobic self run for self-regulation, i.e. I stayed quiet and didn’t express my concern about the fact that it looked like it hadn’t been washed in years. I value this doctor among others in my care, and I didn’t want to complain about anything. Then the woman took my weight. And then she asked if she could take my picture, “for the hospital record.”

I couldn’t contain my wondering self. “What is the purpose of the picture?” I asked.

“It’s for the record,” she explained. “For security.”

I thought about it. My picture is pretty much public domain at this point in my life, a decision I made upon deciding not to blog anonymously. Besides, most everyone at the medical center used to know me, including the receptionists, janitors, cafeteria cashiers, nurses’ aides, social workers, deans, full professors, geneticists, fellows in surgery and old-time voluntary physicians, among others who work there. So why didn’t I want this unidentified woman who works in my oncologist’s office to take my picture?

It made me uncomfortable, and here’s the reason: My picture is a reminder that, without it, I might be like any other patient in the system. They (administrators?, nurses, other docs, maybe even my future doctors) will need or want the picture to recall and be certain who Elaine Schattner is.

Don’t get me wrong. I agreed to the photo after all of maybe 20 seconds deliberating. (And my doctor was, I soon learned, duly informed I’d “had an issue” with it. Was that for just asking the reason?) The unidentified med-tech person used an oddly small, ordinary pink camera to complete her task.

When I met with my doctor, she explained that the photo is for security and, essentially, to reduce the likelihood of errors. The hospital has records of so many thousands of patients, many who have similar or identical names. There are good reasons to make sure that your notes on “Sally Smith” are entered into the chart of “Sally Smith” who is your patient.

It’s understandable. I remember when at the nurses’ station there’d be a sign (on “our” side) saying something like “CAREFUL: Anna Gonzalez in 202, Alma Gonzalez in 204b,” or something like that.

Patients blur.

It’s hard, veritably impossible, for most doctors and nurses to keep mental track of all of the patients they’ve ever seen and examined. There’s utility in the new system. Yes, it’s a good idea for a doctor, say upon receiving a call from a woman she hasn’t seen in 3 or 6 or 9 years, to see her picture in the chart, as a reminder.

But I hope my doctors know who I am, and not just what I look like in the image.

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On Alcohol and Breast Cancer, Guilt, Correlations, Fun, Moderation, Doctors’ Habits, Advice and Herbal Tea

Few BC news items irk some women I know more than those linking alcohol consumption to the Disease. Joy-draining results like those reported this week serve up a double-whammy of guilt: first – that you might have developed cancer because you drank a bit, or a lot, or however much defines more than you should have imbibed; and second – now that you’ve had BC, the results dictate, or suggest at least, it’s best not to drink alcohol.

The problem is this: If you’ve had BC and might enjoy a glass of wine, or a margarita or two at a party, or a glass of whiskey, straight, at a bar, or after work with colleagues, or when you’re alone with your cat, for example, you might end up feeling really bad about it – worse than if you had only to worry about the usual stuff like liver disease and brain damage, or if you could simply experience pleasure like others, as they choose.

The newly-published correlative data, in the Nov 2 issue of JAMA, are clear. The findings, an offshoot of the Nurses’ Health Study, involve over 105,000 women monitored from 1980 until 2008. The bottom line is that even low levels of alcohol consumption, the equivalent to 3-6 drinks per week, are associated with a statistically significant but slight increase in breast cancer incidence. And the more a woman drinks, the more likely she is to develop breast cancer.

All things considered, it might be true that alcohol is a breast carcinogen, as Dr. Steven Narod calls it in the editorial accompanying the research study. Still, there’s no proof of cause and effect: Other factors, like consuming lots of food or perhaps some yet-unidentified particularity about living in communities with abundant food and alcohol, are potential co-variables in this story. But what if it is true?

From the editorial:

These findings raise an important clinical question: should postmenopausal women stop drinking to reduce their risk of breast cancer? For some women the increase in risk of breast cancer may be considered substantial enough that cessation would seem prudent. However, there are no data to provide assurance that giving up alcohol will reduce breast cancer risk.

How I see it is this: Everything’s best in moderation, including enjoyment of one’s life. You work, you rest, you have some fun.

This evidence is not like the strong data linking cigarettes to smoking that officials sat on for a few decades under the influence of the tobacco industry. This is a plausible, mild, and at this point well-documented correlation.

I don’t deny the sometimes harmful effects of alcohol; no sane physician or educated person could. But if you have a glass of wine, or even a second, so long as you don’t drive a car or work while affected, I don’t see it as anyone’s business but your own. More generally, I worry about how much judging there is by people who behave imperfectly, and how that can make individuals who are good people in most ways feel like they don’t deserve to be happy or enjoy their lives.

Women, in my experience, are generally more vulnerable to the put-downs of others. And so my concern about the BC-alcohol link is that this will, somehow, be used, or have the effect of, making survivors or thrivers or women who haven’t even had breast cancer feel like they’re doing the wrong thing if they go to a party and have a drink. And then they’ll feel badly about themselves.

Really I’m not sure what more to say on this loaded topic, except that it points to the deeper and broader ethical dilemma of doctors who are not all perfect examples of moderation, expecting and asking other people to change their personal habits when they themselves like to go out and have fun, and drink, at parties, or have wine in the evenings over dinner in the privacy of their homes.

How shall I resolve this post?

Last night I sipped Sleepytime tea, manufactured by Celestial Seasonings, before reading a book. The stuff is said to be 100% natural, with “a soothing blend of chamomile, spearmint and lemongrass.” I tried it first a few weeks ago and, by a placebo effect or through real chemistry, it helps me sleep more soundly.

I’ve absolutely no idea what are the effects of “Sleepytime tea” on breast cancer. It might help, it might hurt, or it might do nothing at all.

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Note to Government: Please Don’t Pull Back on Patient Safety Regulations

A few days ago I had a colonoscopy to evaluate some gastrointestinal problems. Subjective summary: Yuck. Downing 3 liters of Nu-Litely, a hyper-osmotic colonic cocktail prep, does not make for a pleasant Sunday afternoon, evening or night. As for the procedure itself, I don’t know how Katie Couric did it on TV.

But what made the procedure tolerable, and non-scary, and worthwhile, was that it was done by a careful, experienced gastroenterologist in a well-run facility. The outpatient unit where I had my colonoscopy employs reputable anesthesiologists and maintains functional, appropriate monitoring instruments and, should they be needed, life-saving equipment.

Why I mention this recent ickiness is this –

This morning’s paper reports that the U.S. administration plans cuts in hospital regulations:

… after concluding that the standards were obsolete or overly burdensome to the industry.

Kathleen Sebelius, the secretary of health and human services, said the proposed changes, which would apply to more than 6,000 hospitals, would save providers nearly $1.1 billion a year without creating any “consequential risks for patients.”

A few aspects of the proposed regulatory pull-back seem reasonable, like allowing hospitals to delegate more work to nurse-practitioners. But some of this regulatory reversal sounds dangerous:

…Other proposals would eliminate requirements for hospitals to keep detailed logs of infection control problems…

…Federal officials would also eliminate a detailed list of emergency equipment that must be available in the operating rooms of outpatient surgery centers. Such clinics would have leeway to decide what equipment was needed for the procedures they performed.

Fortunately, the administration is accepting public comments on this matter for 60 days. But they could make it easier. Instructions from the HHS press release involve a series of links:

To view the proposed and final rules, please visit: www.ofr.gov/inspection.aspx…Both proposals invite the public, including doctors, hospitals, patient advocates, and other stakeholders, to comment.  To submit a comment, visit www.regulations.gov, enter the ID number CMS-9070-P or CMS-3244-P, and click on “Submit a Comment.”

My position is that any lessening of infection control is a disservice to patients. As for monitoring of outpatient facilities where procedures are performed, it’s crucial; patients rely on maintenance of modern, clean and functional equipment in places where they receive medical care.

My bottom line: Patient safety should take precedence over cost-saving measures by the inspectors and the inspected.

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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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The Immeasurable Value of Continuity of Care

Today I visited my internist for a checkup and flu shot. We talked about how I’m doing, and she examined me, and we discussed what procedures I ought have done and not done. She’s been my doctor since the summer of 1987, when I was an intern at the hospital.

We reviewed so much that has happened in the interim.

How rare it is, now, to have a doctor who knows me. Continuity in care is so valuable.

One of my greatest fears is being in the hospital again, and having hospitalists – doctors who work full-time in the hospital – be the ones to see me each day, and make decisions about what I need. Yet I’m bracing for it because, well, that’s how it is, now.

From a health care administration perspective, I recognize the value of delegating inpatient care to physicians who are not my usual doctors. And from the perspective of a physician who after hours and on weekends, would walk to and from the hospital, back and forth, countless times, to see my patients when they were sick, I know it’s neither cost-effective nor wise for physicians to push themselves to get over to the hospital before or after they’ve gone home, and called everyone back, and maybe eaten dinner. Doctors need rest, too.

But as a patient, when I’ve been in the hospital, nothing was more reassuring than visits by my usual doctors – my internist, my oncologist, my surgeon, my orthopedist…Being cared for by strangers, however competent, is not the same, although there may never be a study to prove it.

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Considering Steve Jobs, Medical Diagnoses and Privacy

Yesterday morning I wrote a short post on CelebrityDiagnosis.com. By evening, news broke that Apple founder and CEO Steve Jobs resigned from his position, presumably for reasons of his health.

What’s public, by Jobs’ decision, is that he had a relatively good, typically slow-growing kind of malignancy in the pancreas, a neuroendocrine islet cell tumor. He informed Apple employees by email about his diagnosis in 2004, when he was 49 years old. Since then he’s had a liver transplant. Possible complications of that surgery, or the tumor itself, have led to considerable speculation. But little is known about the details of why he took medical leave in January and is stepping down now.

In a published letter to the Apple Board and Community, he wrote yesterday: “I have always said if there ever came a day when I could no longer meet my duties and expectations as Apple’s C.E.O., I would be the first to let you know. Unfortunately, that day has come.”

The letter was “short and classy,” in David Pogue’s words, and I agree. I respect Jobs’ decision to keep the details of his medical condition private. That’s the thing – and where this is post is heading.

When public figures are open about their illnesses, it can be helpful, instructive and even necessary. For example, if a political figure, say Fidel Castro or Hugo Chavez or Dick Cheney, with considerable power develops a cancer or has a stroke or a heart attack or some other serious medical problem, the citizens have the right to know that the condition of the person they rely on has changed.

Sometimes it’s instructive to learn about famous people’s medical stories, as is illustrated in Barron Lerner’s book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine. Openness about breast cancer by women like Happy Rockefeller, Rose Kushner and more recently Elizabeth Edwards (to name a few among many) have helped women move forward, from being ashamed of having BC to understanding about what it’s like to live with the disease. They helped other women to understand this disease, through their generosity of personal stories and experience.

The problem is that in our culture there’s so much openness about medical conditions, individuals may feel compelled to tell what’s happening if they have cancer or a recurrence or some other unfortunate medical event. But not everyone wants to do so, nor should they feel obliged.

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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.

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Give Doctors a Break

In a heartless op-ed in yesterday’s paper, an anesthesiologist argues that medicine shouldn’t be a part-time endeavor. Dr. Sibert makes a firm introduction: “I’m a doctor and a mother of four, and I’ve always practiced medicine full time,” she boasts. “When I took my board exams in 1987, female doctors were still uncommon, and we were determined to work as hard as any of the men.”

Her premise:

With a growing shortage of doctors in America, we can no longer afford to continue training doctors who don’t spend their careers in the full-time practice of medicine.

She’s half-right, I think; the costs of medical education are too great for doctors to be pulling back on normal work hours or quitting their work entirely, willy-nilly. Besides, perhaps a tougher or more persevering group of would-be physicians might have used their coveted med school slots to better end and, ultimately, helped greater numbers of people.

The problem is this: What happens when a doctor gets sick? Or her child? Or partner or spouse? Most of us who’ve gone to med school, men and women both, do or should plan for coping with the inevitable decline of our parents and older family members. But there are some unfortunate circumstances that can make full-time work a challenge for months or even years.

I suspect the author has been fortunate in her career and health.

When a doctor or a dependent becomes seriously ill, she needs a supportive environment. She needs a workplace that allows her to take time off completely, or to work part-time for a while and possibly for a period of years, in a way that doesn’t engender resentment among her colleagues.

In a system without slack, doctors may feel pressured to work under too much duress, when they themselves are facing serious health or family problems. As things stand, I’ve witnessed doctors who’ve abused alcohol, been unkind to colleagues and disrespectful toward patients, and cut clinical corners as ways of coping with too much work, too little free time, and too little sleep.

Sometimes, the reasons why a doctor needs to cut back on her hours or work may not be evident to her colleagues. She may keep her good reasons to herself. With patients, explaining the details of one’s own illness, or a child’s, seems unprofessional, in general, although I do think that when a doctor becomes so fragile that she may not be able to return to work, her patients have the right to know that much, if they depend on her.

As for me, what I’ll say here is this: The day I stopped practicing medicine, nearly five years ago, was one of the saddest days of my life.

Medicine still is a macho field, as Dr. Sibert reveals in her op-ed. This is a shame, because the physicians’ shortage is real. In the long run, the system – which amounts to doctors in supervisory positions, like division and department chiefs – should soften up.

A flexible, more realistic system would allow doctors, in whom the system has invested so much, and who have invested so much of themselves, to take time off when they need it, and flexibility in their schedules, so they can continue in their careers after prolonged illness.

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Confusing Reports On Coffee and Cancer, and What To Do About Breakfast

When I was a medical resident in the late 1980s, we treated some patients with pancreatic cancer on a regimen nick-named the coffee protocol because it included infusions of intravenous caffeine. How absurd, we thought back then, because years earlier caffeine had been linked to pancreatic cancer as a possible cause.

Now, two new studies suggest that coffee consumption reduces a woman’s risk for developing breast cancer, according to MedPage Today:

Women who drank at least five cups of coffee daily had a significantly lower risk of postmenopausal breast cancer, an analysis of two large cohort studies suggested.

…Coffee has a paradoxical relationship with breast cancer risk. The beverage’s complex mix of caffeine and polyphenols suggests a potential to confer both carcinogenic and chemopreventive characteristics, the authors noted…

I’m incredulous, still.

As with most compounds we ingest or otherwise absorb, it’s conceivable that caffeine could damage some cells or somehow factor into some tumors’ growth just as it might suppress others, and that the dose matters. The fact is that, like most dietary chemicals, we really don’t know much about its specific effects on any cancer type.

This morning, as usual, I had an early cup of joe with low-fat milk stirred in. I might have a second cup, or a cappuccino with skim milk and cinnamon, in the afternoon. And that’s about it.

When I’m not sure if something’s good or bad for me, or both, I take it in moderation, if at all, if I choose.

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On Pleasant Behavior And Being A Patient in the Hospital

Dr. Wes has a short post today, How to Optimize Your Care While Hospitalized that got me thinking. He writes:

…A lone doctor listening to some highly experienced and capable nurses, reflecting on their work:

“If the patient’s nice, it’s a lot easier to want to go back in that room with them. Their reputation travels at the nurses station. But if they’re mean, well, it’s not as easy to go back in there, so I might not stop by as often.”

“I agree, it’s easier to catch flies with honey than vinegar.”

Words to live by.

My first take: He and the nurses are right, of course: If you’re pleasant and courteous, nurses (and doctors, and physical therapists, and aides, and cleaning staff…) are more likely to spend time in your hospital room. The maxim applies in many realms.

But let’s take the conversation to the next level. What if the patient’s in pain? Sad, or maybe even crying? In that case, are the hospital staff less likely to enter? Probably so, but health care workers are a diverse bunch.

There are many nurses I’ve known who’d spend more time with an unhappy soul, or someone in pain. As a doctor, I think the same holds.

Maybe some people are grouchy because they’re uncomfortable, worried or lonely and just don’t have it in them to smile. They may lack insight or simply lack manners. They might be very upset, say, that a son or daughter hasn’t visited, or another unmentioned disappointment.

Perhaps it’s the professional’s job to see beyond the smile, or the anger.

Not an easy job  –

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