Can Anyone Be a Patient Advocate?

By |January 31st, 2013

The first time I met an official patient advocate, it was the spring of 1991. I was a first-year fellow, learning by treating patients with blood disorders and all kinds of cancers.

A young gay man with low platelets came to see me in consultation. It was his first visit to the clinic. As I walked by the desk on the way to greet him, the receptionist mentioned that the patient was accompanied by an advocate. “He’s from an organization,” she whispered. “Just thought you’d want to know.”

“OK,” I agreed, not sure what to expect.

My patient was a frail, tired-appearing and polite young man in his 20s. He lived in the West Village and was no longer employed, suffering from AIDS. The man who accompanied him was also thin, perhaps 30 years old – like me, then – and what you might call assertive. The advocate explained that he’d stay with the patient during the evaluation and discussion of recommendations. He added that he’d seen a file on me at ACT UP, and that I was “all right.”

We walked into one of the small consultation rooms. I took detailed notes on the patient’s medical history – too long for his age, approximately 23 years. His body was frail and bruised. A bouquet of tiny red spots lined his palate. Similar marks, a bit darker, coated his legs over and above both ankles. We called those – a manifestation of low platelets – petechiae. I reviewed the patient’s prior blood tests, and drew a sample that I might examine his cells under the microscope.  Later on, the patient, advocate and I spoke about his likely diagnosis and treatment options.

This encounter – my first with an advocate - happened approximately 22 years ago. I don’t know the long-term outcome of the patient’s story, but it’s likely he died of AIDS within a year or two of that encounter. He’d already had several serious infections, and his T cells were quite low as I recall. The advocate may have died, too, but I was not privy to his medical history. All I learned about the advocate – over the course of a few visits, and never by my asking him questions – was that he was involved with ACT-UP, that he was extremely familiar with AIDS manifestations, and that he cared that my patient have access to treatment by a considerate doctor.

So who’s a patient advocate, today?

I’ve been wondering about this, in part because I’d like to serve as a patient advocate on a committee and help decide on priorities, meeting agendas and funding for, say, breast cancer research. Some agencies consider that someone like me – a physician who’s had significant illness – can’t serve as a patient advocate at a table with limited chairs, because I have a medical degree. The problem is, I’m on “the other side,” or something along those lines.

"The Sick Woman," aka "The Doctor and His Patient," by Jan Steen, 17th Century, Rijksmuseum Amsterdam (WikiCommons)

“The Doctor and His Patient,” by Jan Steen

It happens that some physicians, including your author at Medical Lessons, are among the fiercest proponents of patients’ rights I know. I support patients’ unrestricted access to information about medicine and new research, to reasonable treatments matching their preferences and values, and to respect from health care providers. At the same time, I’ve seen doctors who, it seems, promote or outright advertise themselves as “patient advocates” on blogs, websites, in books and elsewhere. Suspicious, yes, but not necessarily untrue –

So here’s the question for the crowd: Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate?

I’m sure I served an advocate for my patients, years ago, while I was practicing, just as I might now, for people with various illnesses. Tell me I’m wrong.

Comments please! How, exactly, might we define a patient advocate? And, while we’re at it – who’s a patient navigator, and what’s the difference?

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How Much Do You Want Your Doctors To Say About Risks of Treatment?

By |June 20th, 2012

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

By |May 18th, 2012

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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Thoughts, on Getting My Photo Taken at a Medical Appointment

By |November 14th, 2011

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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The Immeasurable Value of Continuity of Care

By |September 19th, 2011

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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ML Finds an “Empowered Doctor” Website

By |June 15th, 2011

Today a new Twitter follow led me to the website of the Empowered Doctor. Of course, this domain had to happen: Back atcha!

There’s a tagline that reads: “Doctors, let Empowered Doctor help you connect with new patients. Call us @ 888…” The site offers expert commentary, videos and all kinds of smart stuff. Featured doctors’ profiles run along the right edge of the page; these appear like ads.

For the would-be investigative reporters out there, the company lists a 212 phone and a Long Island City address. Go figure -

The Empowered Docs’ logo could use a lift, perhaps by any of the hundreds of graphic designers in NYC.

Site aside, the concept merits some thought.

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A Video About a Robot and a Patient

By |February 28th, 2011

Since Watson won on Jeopardy, there’s been lots of talk of robots assuming doctors’ roles. Ten years into our future, machines with programmed empathy and nuanced diagnostic skills will solve diagnostic dilemmas, deduce optimal treatment and make us well.

Yesterday I found a new Xtranormal video, this one crafted by Dr. Charles of his excellent Examining Room blog, on Dr. Watson and the 7 Qualities of an Ideal Physician.

from the Examining Room of Dr. Charles

Dr. Charles cites a 2006 Mayo Clinic Proceedings review on what patients say are essential characteristics of a good physician: The ideal doctor is confident, empathetic, humane, personal, forthright, respectful, and thorough. In this clever, short movie crafted by Dr. Charles, the robot-doctor tries to demonstrate his capability in each of these dimensions in his interaction with a cartoon patient.

I hope the folks over at IBM, who are collaborating with real medical centers now about designing artificial doctors’ intelligence, might take a close look at this video.

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May I Call You ‘Doctor’?

By |February 22nd, 2011

Last week I considered the relationship between the Prince Albert and his speech therapist in The King’s Speech. One aspect I wanted to explore further is why the future king initially insisted on calling the practitioner “doctor.”

In real life, now, patient-doctor relationships can be topsy-turvy. This change comes partly a function of a greater emphasis on patient autonomy, empowerment and, basically, the newfangled idea that the people work “together, with” their physicians to make informed decisions about their health. It’s also a function of modern culture; we’re less formal than we were a century ago.

Patients enter the office with their own set of information and ideas about what they need. The recent Too-Informed Patient video highlighted this issue, effectively.

Doctors are human, we are painfully aware in 2011. They make mistakes and they sometimes need to have dinner with their families. They may even let us down.

When I was a young physician, my patients almost universally called me

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The King’s Speech is Not Just About Stuttering

By |February 14th, 2011

Over the weekend I went to see the King’s Speech. So far the film, featuring Colin Firth as a soon-to-be-King-of-England with a speech impediment, and Geoffrey Rush as his ill-credentialed but trusted speech therapist, has earned top critics’ awards and 12 Oscar nominations. This is a movie that’s hard not to like for one reason or another, at least most of the way through. It uplifts; it draws on history; it depends on solid acting.

What I liked best, though, is the work’s rare depiction of a complex relationship between two imperfect, brave and dedicated men. At some level, this is a movie about guys who communicate without fixating on cars, football (either kind) or women’s physical features. Great! and, dear Hollywood moguls, can we have some more like this, please?

The film’s medical aspects are four, at least: the stuttering, the attitude of physicians toward smoking, a closeted sibling who had epilepsy and died at an early age – just mentioned in passing, and, finally, the king’s trusted practitioner’s lack of credentials.

King George VI (Wikimedia Commons)

At the start, Prince Albert (young King George VI) has a severe speech impediment. It’s said that he stutters, and on film Firth does so in an embarrassingly, seemingly extreme and compromising degree. He’s the second of George V‘s sons, and might or might not succeed to the throne depending on events in history, his older brother’s behavior, and his capacity to serve the Empire at the brink of war. Being effective as King of England in 1936, and especially at the start of war in 1939, entails speaking confidently.

Prince Albert’s been through the mill with doctors who’ve tried to help him talk. Some recommend he smoke cigarettes; these, they advise, would help him to relax and, they say, is good for the nerves. One asks him to speak with a mouthful of marbles, on which this doctor watching the film worried he might choke. Eventually Albert’s wife, Elizabeth (Queen Mother to be), finds a speech therapist in London, Lionel Logue, who uses unorthodox approaches with, by rumor, exceptional results. Eventually Prince Albert – or “Bertie” as the therapist insists on calling him – trusts and accepts help from this peculiar Australian who, it turns out, developed his methods of assisting stutterers through his work with shell-shocked soldiers in WWI.

According to MedlinePlus, stuttering affects as many as 1 in 20 children, with typical onset before the age of 5. The problem can persist for weeks or years, of manifold causes. Some families are disproportionately affected, but there’s no known genetic cause. Stuttering can arise upon emotional trauma. It’s more common in boys than in girls.

As for doctors recommending cigarettes, the concept is familiar from some old literature regarding schizophrenia. In a recent post, I included a curious TV ad featuring doctors smoking Camels. I don’t have a good sense of just how comfortable most physicians were with smoking prior to 1950, and would like to know more. Did they have their suspicions?

Finally, on the relationship between the king-to-be and Mr. Logue, it’s fascinating: Prince Albert prefers to call his therapist “doctor,” but Logue is adamant that they refer each to the other on a first-name basis. Well into the film, we learn that Logue hasn’t ever attended speech therapy school, or medical school, or whatever it is that someone who treats another person in London circa 1930 should have completed before providing quasi-medical, essentially psychological care as he did to his royal highness. Nonetheless, the king trusts Logue more than any suitably-credentialed therapist recruited by his staff. This topic – of the therapeutic relationship, trust and expectations – warrants separate attention.

Meanwhile, I hope you have the chance to see this movie, if you haven’t already. The Oscars are scheduled for February 27, just two weeks away.

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Why It’s a Good Idea to Get a Second Opinion, and Maybe a Third, But Rarely a Fourth

By |January 24th, 2011

A few years ago I started writing a book on what it was like to be a cancer patient and an oncologist. This morning I came upon this section on second opinions:

Is it OK to get a second opinion?

Definitely. And there’s no need to be secretive about it, or to worry about hurting the doctor’s feelings. Second opinions are routine in fields like oncology, and are often covered by insurance. Be up-front: any decent oncologist can understand a cancer patient’s need to find a doctor who’s right for them, with whom they’re comfortable making important decisions. And in difficult cases, some specialists appreciate the chance to discuss the situation with another expert. So a second opinion can be beneficial to patients and physicians alike.

When things can get out of hand, though, is when patients start “doctor shopping.”  For example, I’ve cared for some patients with leukemia who’ve been to see over 10 oncologists. If you’re acutely sick, this sort of approach to illness can be counterproductive; it can delay needed therapy. From the physician’s perspective, it’s alienating; who wants to invest her time, intellectual effort and feelings for a patient who’s unlikely to follow up? Besides, oncology is the sort of field where each consulting doctor may have a distinct opinion. (If you see ten oncologists, you may get ten opinions…). Beyond a certain point, it may not help to get more input, but instead will cloud the issue.

As things stand, oncologists often discuss difficult cases with their colleagues. This happens at academic centers and hospitals, where tumor boards meet regularly to review the diagnosis and management of each cancer case, and informally in private practices, where physicians are likely to discuss certain aspects of treatment with their partners. For patients with very rare conditions, some oncologists will call experts in the field whom they may know through national meetings, journals, and other resources. What this means for patients is that through one consultant, they may be getting input of more than one expert, although they may not be aware.

So I recommend that patients with cancer, or any other serious or rare condition for that matter, get a second or third opinion about the best way to manage their illness. But at some point you’ve got to select one among those specialists, even if she’s not perfect, and stick with her at least for a while, until you have a good reason to switch or move on. Otherwise, you’re unlikely to have a doctor who cares when you’re really sick and, later, about your long-term well-being.

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Why the Term ‘Patient’ Is So Important in Health Care

By |January 13th, 2011

An on-line friend, colleague and outspoken patient advocate, Trisha Torrey, has an ongoing e-vote about whether people prefer to be called a “patient” a “consumer” a “customer” or some other noun to describe a person who receives health care.

My vote is: PATIENT.

Here’s why:

Providing medical care is or should be unlike other commercial transactions. The doctor, or other person who gives medical treatment, has a special professional and moral obligation to help the person who’s receiving his or her treatment. This responsibility – to heal, honestly and to the best of one’s ability – overrides any other commitments, or conflicts, between the two.

The term “patient” constantly reminds the doctor of the specialness of the relationship. If a person with illness or medical need became a consumer like any other, the relationship – and the doctor’s obligation – would be lessened.

Some might argue that the term “patient” somehow demeans the health care receiver. But I don’t agree: From the practicing physician’s perspective, it’s a privilege to have someone trust you with their health, especially if they’re seriously ill. In this context, the term “patient” can reflect a physician’s respect for the person’s integrity, humanity and needs.

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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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A Video About a Patient Who Might Have Too Much Information

By |December 1st, 2010

A link to a video, the Too Informed Patient came my way several times lately. You can find the curious clip on NPR’s Marketplace site:

The Too Informed Patient from Marketplace on Vimeo.

The skit depicts the interaction between a young man with a rash and his older physician. The patient is an informed kind of guy – he’s checked his own medical record on the doctor’s website, read up on rashes in the Boston Globe, checked pix on WebMD, seen an episode of Gray’s Anatomy about a rash and, most inventively, checked i-Diagnose, a hypothetical app (I hope) that led him to the conclusion that he might have epidermal necrosis.

Not to worry, the patient informs Dr. Matthews, who meanwhile has been trying to examine him (“say aaahhh” and more), he’s eligible for an experimental protocol. After some back-and-forth in which the doctor, who’s been quite courteous until this point – calling the patient “Mr. Horcher,” for example and not admonishing the patient who’s got so many ideas of his own, the doctor says that the patient may be exacerbating the condition by scratching it, and questions the wisdom of taking an experimental treatment for a rash.

“I just need you to sign this paper,” says the patient.

The doctor-puppet pauses momentarily, seemingly resigned to a new role. After the patient leaves, the doctor thinks to weigh himself. The skit ends with the sounds of keyboard typing.

The piece supplies thought-provoking details in under 2½ minutes. It’s a useful teaching tool, among other things. There’s been some discussion about it on the NPR site, the Patient Empowered Blog, the Health Care Blog and elsewhere. Some comments suggest annoyance, that the “informed patient” is misrepresented here as exaggerated or foolish, or that the skit is off-mark.

To me it rings true, representing an older doctor who’s trying, open-mindedly but not at the cutting edge, to embrace new technology, and has the patient’s interests at heart. His efforts and his knowledge are set aside.

My reaction is sadness. Am I the only one?

Thanks to the team who created this insightful production: produced by Gregory Warner and Mara Zepeda. Created by Sebastienne Mundheim of White Box Theatre, acted by Charles DelMarcelle and Doug Greene, and voiced by two actors from Philadelphia’s Pig Iron Theatre Company, and to NPR’s Marketplace for presenting.

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On People Who Receive Care From Physicians

By |June 21st, 2010

This week’s medical blog Grand Rounds will focus on posts having to do with “customer service” in health care. A problematic concept, it seems to me.

As a physician I never considered my patients as buyers or consumers. People came to me as their doctor, or I visited them in the hospital, and I thought my job was to identify if something was wrong and, if so, to identify the exact nature of the problem and then take care of the person as best I could. I didn’t contemplate the situation with a business mind-set.

As a patient I don’t think in shopping terms when I visit my doctors or my physical therapist, although I do sometimes pay significant bills. Even for lab services, such as at Quest Diagnostics, I don’t feel as if I’m making a purchase. Sure, I’m annoyed when there’s a long wait or my results are inexplicably delayed. And I sometimes prefer one technician to another. I might mind the costs, and if there’s an error in my bill I’ll challenge that. Still, I don’t perceive myself as a health care customer.

In medical journals a patient typically is called a person, an individual, a subject in a clinical trial or (unfortunately) a case. But in some blogs and other sources I’ve been reading lately, most often having to do with health care delivery or IT, consumers pop up constantly. A good example occurs in a recent article in the journal Health Affairs, “Evidence That Consumers Are Skeptical About Evidence-Based Health Care.” This study generated a small brouhaha (in my opinion undeserved) about the public’s alleged blind faith in their personal physicians’ advice.

In reviewing that story, what most surprised me most about the paper was not so much the study’s findings (limited) or sponsorship (by the National Business Group on Health), but its language. The term “consumer” or “consumers” appears in the article’s title, no fewer than 5 times in the 125-word abstract and a noteworthy 39 times in the main paper excluding captions, tables, and references.

My point, which is really a question, is whether people who seek out or need health care should be referred to as consumers or customers. My gut feeling is that neither term is appropriate. But then again, I don’t believe that medicine can be or should be run as a business. Here’s why:

If physicians are in a position that they might be influenced by a profit motive, they’re less likely to make decisions based in evidence and are more likely to make recommendations that include income-generating procedures and treatments.

If people receive medical care from physicians who might generate greater income by recommending particular treatments, procedures or referrals, they may not receive the most appropriate care. What’s more, they are less likely to trust that their physicians are providing sound advice. The upshot is that when expensive medical care is needed – say, for the sake of this discussion, in the case of a young person with a curable leukemia – some individuals may be less trusting of physicians if they think they are motivated by money and may decline helpful and even life-saving treatments. So the profit motive, or even the appearance of a possible profit motive, has the potential to lessen the patient-doctor relationship and undermine good care.

What’s worse, though, and even more off-putting, is that in a financial transaction for medical care – in which a person with or without an illness is referred to as a “consumer” in a business called the health care industry – what’s really happening is that the illness, and maybe even the patient who has an illness, is rendered a commodity.

Ultimately this is the greatest downside of medicine as a business. No. I don’t think patients should be considered as customers or clients by any other name.

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Health Care Costs, Communication and Informed Choices

By |February 12th, 2010

For those of you who’ve been asleep for the past year: the health care costs conundrum remains unsolved. Our annual medical bills run in the neighborhood of $2.4 trillion and that number’s heading up. Reform, even in its watered-down, reddened form, has stalled.

Despite so much unending review of medical expenses – attributed variously to an unfit, aging population, expensive new cancer drugs, innovative procedures, insurance companies and big Pharma – there’s been surprisingly little consideration for patients’ preferences. What’s missing is a solid discussion of the type and extent of treatments people would want if they were sufficiently informed of their medical options and circumstances.

Maybe, if doctors would ask their adult patients how much care they really want, the price of health care would go down. That’s because many patients would choose less, at least in the way of technology, than their doctors prescribe. And more care.

What I’m talking about is the opposite of rationing. It’s about choosing.

Several recent stories have considered the problem of physicians not talking with their patients about treatment limits. Last month the journal Cancer published a study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama, revealing that only a minority of physicians would raise the subject of a DNR order or hospice care for patients with metastatic cancer and a short life expectancy.

When it comes to recommending palliative care, aimed at patients’ nutrition and comfort, rather than cure, some doctors remain tight-lipped. Many good physicians, including cancer specialists, are reluctant to stop prescribing chemotherapy and aggressive treatments. The reasons vary. Based on my experience as a practicing oncologist, I’ll list a few:

Some doctors think it’s better for their patients if they are upbeat, and this may indeed be true. Conversely, many patients choose doctors who are optimistic: if you tell patients there are no treatment options, they’ll go elsewhere. Most patients, of course, do want treatment; more than a few are desperate enough to try anything a doctor says might work.

Another, unfortunate factor is financial pressure; giving treatment and doing procedures is far more lucrative than simple exam and discussion-based visits. I’m afraid, too, that many physicians don’t recognize the extent they’re influenced by effective marketing, usually blatant but sometimes subtle.

For others it’s an ego thing – doctors try to “outsmart” a disease, even when it’s not feasible, trying one therapy and the next, to no avail.

Harder to assess, still, is doctors’ internal unwillingness to give up on some patients because they care about them so much. Some excellent doctors may become so invested in a case that they, themselves, cannot be objective.

Besides, “throwing in the towel” is not something most good doctors like to do. And it’s not something most patients want to hear about.

Yet, maybe some dying patients would appreciate a doctor’s honesty -

These issues relate directly to the practice of oncology, the area of medicine I know best. But similar hesitations and conflicts of interest arise among doctors in most fields – cardiologists caring for people with severe heart disease, neurologists caring for people with end-stage Parkinson’s, and infectious disease experts caring for people with late-stage HIV, to name a few.

If doctors could somehow find the time, and take the trouble, to talk with their patients in a meaningful way, and then heed their patients’ wishes, they might find that many patients would, of their own volition, put a brake on health care spending.

For this reason, among the changes in health care I most favor is greater support for primary care and non-procedural services. If  were paid more for thinking and communicating, rather than ordering tests and performing treatments in a perfunctory manner, they and their patients might opt for less expensive, more humane remedies.

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Are Doctors Necessary?

By |February 2nd, 2010

Ten years ago, my colleagues and I squirmed in our swivel chairs when a few tech-savvy patients filed in bearing reams of articles they’d discovered, downloaded and printed for our perusal. Some of us accepted these informational “gifts” warily, half-curious about what was out there and half-loathing the prospect of more reading. Quite a few complained about the changing informational dynamic between patients and their physicians, threatened by a perceived and perhaps real loss of control.

How a decade can make a difference.

In 2000 the Pew Charitable Trusts initiated the “Internet & American Life Project” to explore how the Web affects families and communities in matters of daily life. Susannah Fox is an associate director of the Research Center project.

“It’s the ultimate information appliance” she says of the Internet. Now that it’s in most people’s homes, people use it as they choose.

And that’s quite often -

In 2008 over 140 million Americans, a majority of U.S. adults, looked for health information on-line, according to the Center’s 2009 report. Nearly 60 percent of those admit that a recent Internet search influenced a medical decision.

“Back in 2000, our data was used to prove the concept that people were going on-line to get heath care information,” she says. But that’s no longer the issue.

“With Facebook, MySpace and Twitter, there’s a new frontier” she states. “I think we’re at a new inflection point, and now is the time to have a very clear conversation on health care.

There’s been a significant shift on the physicians’ side, too.

“It’s become clear that increased communication and discussion can change care in a positive way” says Dr. Barron Lerner, a primary care physician and medical historian at Columbia University. His most recent book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, considers how ailments in the public realm can influence peoples’ perception of illness and inform their care choices.

“The Internet can be amazingly good to get people up and running” he considers. Lerner encourages his patients who have cancer to visit the National Cancer Institute (NCI) website.

“Why not go on, and explore,” he tells them. “Now as for how much they can absorb there, I don’t know,” he adds. “It’s a very hard website.”

Dr. Gretchen Berland is a primary care physician, videographer and former MacArthur Foundation fellow at the Yale University School of Medicine. She led an early study on the quality and accessibility of web-based medical information in that was published in the Journal of the American Medical Association in 2001.

“The Internet gives people a sense of control,” she says. “People use the Web to augment the information they’re given by their physicians, to look for a second opinion, and to search for clinical trials.”

But despite the wealth of information, and good quality of many sites, Berland sees limits in the Internet’s use, particularly for patients with complex, serious conditions like cancer. Even if online materials are comprehensive and accurate, they rely on people’s ability to find and understand them.

The Internet is not enough to help most people, she states.

Recently Berland searched on-line resources on behalf of a friend who had cancer surgery. When she looked at all the data, including material gleaned from some physician-oriented sites, there were gaps. “It wasn’t clear what he should do, despite how much information is out there.”

That’s the paradox of the Internet, she notes. “It’s hard to know what applies to a particular person’s unique and complex medical circumstances.

“One thing the Web doesn’t do is personalize the information,” she says. “That’s what physicians do.”

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How to Avoid Death in the ICU

By |January 25th, 2010

Something I learned as a medical intern is that there are worse things than dying.

As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.

An attending physician, a smart guy I respected, approached me as I completed the procedure.

“It’s kind of like Dante’s seventh circle,” he noted.

Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.

“Yeah,” I said as we walked out of the room to review another patient’s chart.

I wondered if the ICU staff would mind my changing the radio station, just in case the patient could hear but not tell us he preferred WQXR.

“There’s no way I would let this happen to me,” I remember thinking.

—–

This month, a report in the ACS journal Cancer indicates that most U.S. physicians don’t talk with their patients about end-of-life issues until death is imminent, if they do so at all.

The study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama revealed that only a minority of physicians would raise the subject of a DNR (do not resuscitate) order or the possibility of hospice care for a patient with metastatic cancer with a life expectancy of 4-6 months. The article has generated considerable, appropriate attention in the press and for good reason – it bears on health care costs, patients’ rights, doctors’ communication and time constraints and a host of points relevant to the practice of medicine in 2010.

For purposes of this post, today, what I’ll say is this much:

Don’t wait for your doctor to talk to you about death and dying. Be proactive about your wishes and the kind of care you wish to receive, especially if you’re sick with a serious medical condition. Take the initiative – document your end-of-life preferences as best you can, according to the law of your state, and tell your physicians about any limits you’d like to set on the care you might receive.

It’s a conversation worth having, early.

——-

Here’s a very-partial list of resources for people who’d like to learn more about advance directives, living wills, DNR orders, hospice care and other end-of-life concerns:

MedlinePlus on Advanced Directives;

New York State: information on Health Care Proxy forms and DNR orders

Family Caregiver Alliance on End-of-Life Choices

Hastings Center on End of Life Issues

American Hospice Foundation

Cisely Saunders Foundation

Hospice Foundation of America

The National Hospice and Palliative Care Organization

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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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