The "D" Word

I have a vividly clear memory of a conversation with my sister-in-law that happened years ago.  At the time, I don't think she was even my sister-in-law yet; I think she and my brother were dating or maybe engaged.  They must have been in their senior year of college or just graduated, and she was somewhere in the midst of the very long academic-requirement-and-standardized-test-filled process of getting into medical school.  Someone asked her where she thought she might want to go, and she told them she was hoping to get into UAB, in her home state of Alabama.  She was a resident there, she explained, and going to a public school with in-state tuition would be far less costly than other options.  As a happy bonus, it also happens to be quite a good school, but, as she told her inquisitor, keeping her student debt load as low as possible was a priority, because she did not want to feel its pressure someday exert influence on her choice of medical specialty.

At the time, I was still working random jobs to prolong my gallivanting the globe as long as possible.  I had no idea what I wanted to do with my life, but I had zero intentions of going into medicine.  I remember overhearing this conversation, and privately thinking to myself, "Well, now, that is just absurd."  After all, I thought, doctors are not poor.  They may not be investment bankers, but they do just fine.  Even the lowest-paid specialties in medicine earn significantly more than most other jobs.    And plenty of people go into plenty of debt for graduate school, but it works out - in a field like medicine, you will be able to repay your loans eventually.  How short-sighted to limit your options for something like money.  (I must confess that the other thing I thought during this conversation was, "Alabama??  Really???"  And not just because of some inherent prejudice I had against the south, although that was certainly part of it.  I totally adore my sister-in-law and my brother, and I was maybe just a teensy bit pissed off that she would not consider moving to Colorado, or some other, more desirable part of the country, closer to the rest of the family.)

I should stop here to note that I could probably tell dozens, if not hundreds, of personal stories and sprinkle them liberally with giant asterisks that would direct you to postscripts about the overwhelming force that irony seems to have in my life.  Seriously, if I have ever thought that something would definitely not happen to me, that thing will most definitely happen.  If I ever say that I will never do something, I might as well just start planning for the day that I will do it. *  

I am posting an article tonight about student debt that originally appeared about a month ago in the New York Times.  It is a subject that hits painfully close to home, and it's a rather interesting (in addition to distressing) factor for me to ponder as I near the point in medical school where I will need to get serious about one medical specialty and decide to devote my career to it.  Our schedule at Emory being set up as it is, I am approaching the end of the third-year curriculum, and have now rotated through many of the major specialties and spent a very small amount of time on just a few of the minor ones.

I, like my sister-in-law, came to medical school enthusiastically committed to the idea of primary care - its importance to health, the critical need in this country for more physicians in this specialty, my own career heading in this direction - and at this point, my theoretical commitment to it has not wavered.  On a personal level, however, I am not at all sure that this is the specialty I want to pursue.  Multiple factors obviously play into this: my experiences on my third-year rotations, my greater understanding of what different specialties entail, my clearer vision of myself, my talents, my interests and my future goals.  It would be naive of me, though, to assume that debt burden and future potential salary were not at least subconsciously casting their votes as I try to process this decision.  

*Of course, the multiple ironies in this story, starting with my going to medical school, include my moving away from family, to the south, where I am currently very much aware of the burden of student debt and its potential influences on choice of specialty.

Tackling the Problem of Medical Student Debt

By Pauline Chen, M.D.

December 13, 2012

Thursday's announcement from the University of California, Los Angeles, of a $100 million medical student scholarship fund should inspire all of us to question the fact that medical education in the United States is paid for largely by student debt.

The new merit-based scholarships, established by entertainment executive David Geffen, will cover all educational, living and even some travel expenses for a fifth of next year's entering medical school class, some 33 students. Mr. Geffen and school officials hope that eventually the school will be able to pay for all medical students and free them from the obligation to take out student loans.

"The cost of a world-class medical education should not deter our future innovators, doctors and scientists from the path they hope to pursue," Mr. Geffen said in a statement. "I hope in doing this that others will be inspired to do the same."

The cost Mr. Geffen refers to has skyrocketed over the last 25 years. The median annual tuition, or yearly cost for attending classes, is now more than $32,000 at public medical schools, and more than $50,000 at private institutions. And medical students must also pay for textbooks, equipment, room, board and travel expenses, adding $20,000 to $30,000 to each year's expenses and pushing the total four-year cost of attending medical school to more than $200,000 at public institutions and close to $300,000 at private schools.

Some medical students commit to military service or to practice in a medically underserved area to reduce costs. But the vast majority end up borrowing money from federal or private loan programs, or from family if they are fortunate enough. The median debt for medical students upon graduation is more than $160,000, with almost a third of students owing more than $200,000. And those figures do not include interest costs over payback periods of 25 to 30 years.

There are several reasons for the runaway costs. One is that the academic medical centers that house medical schools have become increasingly complex and expensive to run, and administrators have relied on tuition hikes to support research and clinical resources that may have only an indirect impact on medical student education.

An equally important contributor to the problem has been our society's placid acceptance of educational debt as the norm, a prerequisite to becoming a doctor. Obtaining a medical education is like purchasing a house, a car or any other big-ticket item, the thinking goes; going into debt and then paying over time with interest is just the way the world works. And, say many observers, newly minted doctors will earn big salaries, allowing them easily to reimburse their loans.

While it is true that most doctors can pay off their debt over time, those insouciant observers fail to consider how loan burdens can weigh heavily on a young person's idealism and career decisions.

For example, financial considerations have been shown to be a major deterrent for undergraduate students considering a career in medicine, particularly for students from diverse backgrounds. And even the most committed students who do make it to med school may eschew research or specialties like geriatrics, family medicine and pediatrics in favor of a more lucrative career in dermatology or ophthalmology.

These choices have enormous social repercussions. Despite the well-studied benefits of a diverse physician workforce, more than half of all medical students currently come from families with household incomes in the top quintile of the nation. Even more worrisome, student concerns about debt are exacerbating the nation's physician shortage. By the end of this decade, we will be short nearly 50,000 primary care physicians and an additional 50,000 doctors of any kind.

Educators and groups like the Association of American Medical Colleges have been trying to address the problem of medical student debt for more than a decade. Some have suggested simply freezing costs or prorating debt according to the earning potential of a student's chosen area of specialty.

But the most durable solutions thus far seem to be scholarships made possible by philanthropic donations like Mr. Geffen's. The University of Central Florida's new medical school, for example, was able to offer its charter class in 2009, consisting of 40 students, a four-year scholarship that covered tuition and living expenses thanks to several gifts. And the Cleveland Clinic Lerner College of Medicine, established with a $100 million gift from philanthropists Al and Norma Lerner, has been able to educate a small cadre of future physician-scientists while granting all of them scholarships to cover tuition costs.

Mr. Geffen's fund represents the first sustained scholarship to cover all expenses, not just tuition, for a sizable portion of students at a single medical school. Combined with his unrestricted gift of $200 million that led to naming the medical school in his honor a decade ago, Mr. Geffen's contributions represent the University of California system's largest donation ever from a single individual.

But the real importance of Mr. Geffen's donation for the rest of us lies in not its historic largesse, nor its hopeful vision. Rather, it is in the dramatic impact one individual can make when he makes medical education a priority, and the inevitable question such a gesture raises: Why has our society been so slow to do the same?

On Surgery and Babies

I often have patients tell me "good luck!" as I say goodbye to them and start to leave the room.  "Good luck," as in, good luck with finishing medical school... and then residency... and then, you know, the whole being a doctor thing.

I always say thanks, and I always mean it.

I never don't feel like I need a whole lot of luck to get through this, or at the very least a little of some really good stuff.  This afternoon, a patient - an older woman - went on and on about how wonderful she thought it was that there were so many more women going into medicine nowadays.  And I totally agree with her, but I also think that a big part of the reason I feel like I need to rely so heavily on luck for this whole being a doctor thing is because I am a woman.  Not for the medicine part by itself, necessarily (although God knows I could use that too), but for the entirety, the wholeness, of my life.  To be a woman in medicine and to still have the life I want, or something like it.  I have so much to say about this subject that I could write forever about it, and probably will plenty of times, but tonight I am going to keep it short.

All I know is, I have been reading this excellent book, and it is just fascinating and pulls you right into the crazy intense world of pediatric heart surgery, and envelops you with a sense of the insanity of that life and the courage and singularity of purpose it requires to do that work (and thank God there are people out there who can do it)... but they are all men.

They do amazing, incredible, miraculous, insane work, and they have schedules to match.  Still, many of them have families.  And I can't help but wonder... is it any coincidence that none of them are women?  Just kidding, I don't wonder that.  At all.  It is obviously not a coincidence.  

Anyway, here is another fabulous Dr. Chen column from the NY Times Well Blog, expounding on the topic much more eloquently than I.  Enjoy.

The Plight of the Pregnant Surgeon

By PAULINE W. CHEN, M.D.

February 23, 2012

Admired as much for her sheer talent as for her humility, my surgical residency colleague became pregnant during her last year of training. At about the same time her baby was born, another colleague, also in his final year of training, broke his leg in a skiing accident. Both ended up taking a few weeks off from work, he for his accident and she for her maternity leave.

A couple of months later, after both had returned to work, we learned that our female colleague had been asked to make up the time lost on her maternity leave, while our male colleague had not. Outrage over this decision spread quickly among the ranks; in hallways and call rooms we residents huddled together to condemn the decision of our elders. Medical students reacted, too, choosing training positions not in surgery but in obstetrics and gynecology or internal medicine, specialties where they believed they could have “a life” while training.

Many years later, what remains surprising to me is that none of us, including the woman herself, ever seriously questioned the decision or the senior surgeons. Despite our railings, we accepted it because, as one female colleague trenchantly observed at the time, “this is the way it is with surgical training; you just don’t get pregnant.”

I remembered this incident when I read a study published this week in Archives of Surgery, the first large-scale examination of attitudes toward pregnant surgeons.

Researchers from the University of Maryland School of Medicine in Baltimore sent questionnaires to more than 5,000 female surgeons who were in various stages of their careers, asking them about attitudes toward pregnant surgeons. Roughly half of the women responded. A vast majority reported a significant stigma attached to being pregnant, particularly during training. While younger respondents felt significantly less stigma than those who had trained a generation or two earlier, a sizable majority of the young women — over two-thirds of them — still believed that being pregnant during training could negatively affect or even jeopardize a surgical career.

And although female surgeons tended to be more supportive of their pregnant colleagues than men, they were also capable of being just as dismissive as their male colleagues.

“There isn’t much ‘kind and gentle, warm and fuzzy’ going around,” said Dr. Patricia L. Turner, lead author, an associate professor of surgery at the University of Maryland and a director at the American College of Surgeons. “The fact was that everyone — man or woman — could be hard-core and difficult.”

While women now make up almost half of all medical school graduates, only 30 percent of surgeons-in-training are female, a discrepancy that may be related at least in part to the fact that the most intense period of surgical training, which sometimes stretches over an entire decade, correlates to a woman’s most fertile years, her 20s and 30s. “You cannot not look at the impact of such training on childbearing and career decisions,” Dr. Turner noted.

Many of the surgeons who responded to the 99-question survey inserted additional pages describing their experiences. “It was like there wasn’t enough room within the survey for them to tell their stories,” Dr. Turner said. Some respondents recalled being told outright that they would not be able to finish their training if they became pregnant. Others described watching pregnant colleagues quit under the stress.

Several respondents recounted the pressure to take off no more time than what was allotted annually for vacation. They would work right up until delivery, then return to work exactly three weeks later, fearful that an additional day off might cost them their job or reputation.

Although many women also wrote about what they deemed to be positive experiences, these were not recollections of festive baby showers and congratulatory cigars. One respondent, for example, wrote about hiding her pregnancy for several months before finally approaching the senior surgeon in charge of the residency program. His response was matter-of-fact; he would rearrange the on-call schedule and her schedule to make it possible for her to take time off to have her baby. “The fact that it was handled like a non-issue and without screaming, yelling or threatening to kick her out of the program was perceived by this surgeon as amazingly positive,” Dr. Turner said.

There have been official efforts in recent years to improve the work-life balance of surgeons-in-training. Residency programs across the country have been working to limit duty hours to no more than 80 a week; and the American Board of Surgery, the organization that defines surgical training standards, has made some of its requirements more flexible. Trainees now, for example, can apply to take up to six weeks off for maternity leave or medical reasons without penalty.

Still, it probably will not be until those in the youngest generation of surgeons become well established in their careers that significant changes will occur. “Thirty years ago, people didn’t have the words to say ‘work-life balance,’ let alone say it was a priority in their career,” Dr. Turner said. “But younger surgeons, female and male, aren’t afraid to articulate that that’s important to them.”

“We are going to have to figure out how to mesh our training with the dreams this generation has for the other parts of their lives,” Dr. Turner continued. “Especially if we still want the best people to keep going into surgery.”

Palliative Care

Last week my subspecialty rotation was palliative care.

And I almost lost it.  About 57 times.

There was lots going on... I have been sick, I was PMS-ing, I am apartment hunting and very behind in my studying and feeling very overwhelmed about both of those things and about life in general... anyway, like I said, just lots going on.  Lots of reasons for my feeling extra emotional.

But then I got to palliative care, and first of all, all the doctors and NPs on the service are awesome.  Like, really awesome and amazing people.  And the work that they do is just incredible... they give the kind of care that I think about 90% of people who want to be doctors think they want to give (until they get to medical school, and then internship, and then residency, and then fellowship, and then by the time they are finally practicing on their own and earning more than a public school teacher's salary, all of those ideals are long since gone and they have become bitter people with inflated senses of self-importance and discussions about "best patient care" have become relics of a distant past... I digress.)  

Then I got to palliative care, and it was all I could do to not have to run sprinting from every patient encounter, bawling.

Palliative care docs really take care of people.  And not just patients--they take care of their patients and they take care of their patients' families and friends.  They support the support system.  "Palliative care" means best supportive care; contrary to common belief, it encompasses hospice care but it is not the same as hospice.  It is not just end-of-life care--there is a lot more to it than that.  Yes, it often comes into the picture near the end of a patient's life, but it is not limited to it.

Palliative care providers focus on caring for the whole patient, including their medical, physical, emotional, and spiritual needs.  Palliative care teams frequently help with pain management; what is unique about their approach, though, is their implicit recognition that pain does not exist solely on the physical level.  Palliative care will help to manage pain from all its myriad sources, whether from metastatic cancer or from broken relationships.  Quite often, this involves simply listening.  Just sitting with a patient, or the patient's daughter, or the patient's brother, or the patient's entire extended family.  And really listening.  And it is truly powerful, what that one act can accomplish.  It can be a healing act.

There is an art to this act, and it is one that the providers I worked with last week had down beautifully.  I sat with them as they broke bad news to patients and their families, reviewed pain medication regimens, gently emphasized that it was now time to start planning for a move to hospice, tactfully facilitated meetings about living wills and code status and DNR orders, compassionately counseled struggling children of critically ill ICU patients.  

And I could not help it--during those meetings, I would start to think, what if this were my mother on this ventilator?  What if this were me and my siblings, discussing my father's care?  What if it were me having to make these decisions? 

I repeatedly had to do the thing where you suddenly focus very intensely on something on the floor and you force yourself to think about how your shoes are pinching your toes, or baseball, or the parking ticket you just got, or the laundry that you need to do when you get home, and you blink furiously to keep the stinging in your eyes from leaking all the way out.  It took every ounce of concentration I had not to burst into tears multiple times.

I found myself at home at the end of those days, really needing to de-brief with my friends and my classmates.  I couldn't even tell some of the stories from the week without breaking down.  Even now, as I type this, I can feel the knot rising in my throat.  It was a powerful and touching week... and even though I absolutely loved the experience, I am not sure that I have it in me to do that kind of work day in and day out.  I am not sure that I know how to tread the line well enough between being destroyed by the everyday tragedies that surround you in that setting and just becoming hard and unfeeling, shutting it all out.

I recently read about a program designed to do just that--to help physicians navigate that emotional in-between.  I think the idea sounds amazing, and I am even more excited because Emory happens to be one of the institutions joining up to implement it this year.  

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Sharing the Stresses of Being a Doctor

By Pauline W. Chen, M.D.

September 15, 2011

One afternoon, a doctor friend whose clinical skills and bedside manner I’ve long admired called wanting desperately to talk about her day. Exasperated, and feeling as if she had no one to turn to at work, she reached out to me, her friend.

Earlier that day, a transplant patient had threatened to stop taking one of his medications. Proud of his looks, he had become despondent when the drug made his gums swell. “He thought he looked like a freak,” my friend said.

But he needed the drug to keep his body from rejecting the transplanted organ, so my friend tried to reason with him. When that didn’t work, she began bargaining, then pleading and cajoling. The more he refused, the more frustrated she got. To her, swollen gums seemed like a small price to pay for a lifesaving transplant, and she found herself growing increasingly angry with the patient.

“All those ideals about empathizing with patients and respecting their choices went flying right out the window,” she said. She had thought about asking a colleague at work for advice but feared she would be judged, even blamed. “Everyone is ready to tell us to be caring and compassionate, but it’s really hard sometimes, trying to do to the right thing all alone.”

Studies have shown that health care that respects patient values and preferences influences how well patients do. Statistics show that such compassionate care can improve control of diabetes, increase patient adherence to treatment recommendations, decrease the use of costly diagnostic testing and lower hospitalization readmission rates for ailments like heart attacks and pneumonia.

But the mounting evidence has also led to a flood of new mandates, how-to tips, scorecards and reimbursement policies linked to the new standards. And there is no shortage of experts eager to explain it all and to remind clinicians to, well, be compassionate.

The enthusiasm reflects excellent intentions, of course. The problem is that when faced with a complicated case that falls outside of the relatively simplistic boundaries of the irreproachable truisms, caregivers are almost always on their own. That professional isolation — and the moral distress that goes with it — has contributed to alarming levels of professional burnout.

But one organization has been working to change that by quietly focusing where others have not: on supporting caregivers in their everyday clinical work.

Inspired by the experiences of Kenneth B. Schwartz, a Boston health care lawyer who died of cancer in 1995 at the age of 40, the Schwartz Center for Compassionate Healthcare has for the last 15 years run a program known simply as Schwartz Rounds. Held on a monthly or bimonthly basis in hospitals, nursing homes, community health centers and academic medical centers across the country, these rounds, or meetings, are an opportunity for clinicians to discuss emotionally challenging cases or issues in their work.

Led by a trained facilitator, the rounds attract up to 200 doctors, nurses, social workers and other caregivers and employees. There is a strict code of confidentiality. Typical topics include cases in which a clinician and patient can no longer communicate effectively because of differing religious views, instances in which a caregiver makes mistakes and situations in which patients or their family members become violent with caregivers.

The discussions that ensue are often emotional. But instead of focusing on blame, discussion leaders work to transform these stressful moments into an opportunity for clinicians from all disciplines to encourage and support one another. “With problems like these, people usually just end up pointing fingers,” said Dr. Stephen Nalbach, a resident in neurosurgery at Brigham and Women’s Hospital in Boston. “Schwartz Rounds is like a conversation where we get to debrief and learn from others and try to do better, instead of just moving on and forgetting.”

While early critics might have been skeptical about the effect of these meetings, a recent study in the journal Academic Medicine has shown that clinicians who attend Schwartz Rounds feel significantly less stress and are better able to cope with the demands of their work. The more frequently they attend rounds, the more easily they discuss sensitive issues with their patients.

What’s more, they feel energized about their work and better equipped to come up with new strategies for handling difficult patient situations. Institutional culture has been shown to improve as well, with about half of all participants citing a greater focus on patient-centered and team-based care at hospitals that hold Schwartz Rounds.

The change even trickles down to the language of the workplace. “At some centers, ‘Schwartz’ has become a verb,” said Julie Rosen, executive director of the Schwartz Center. “To ‘de-Schwartz’ means to lose one’s compassion, and to ‘Schwartz it’ means to add conviction and compassion to a job.”

Offering these rounds requires a significant commitment from both the center and the more than 200 hospitals that currently hold the rounds. The cost for the first year, not including the time and effort of on-site clinicians who must step away from their work to attend or those involved in the planning of each meeting, is approximately $15,000 per institution. The Schwartz Center, which relies primarily on philanthropic sources for its own operations, generally pays a large part of these initial costs, but thereafter each site shoulders most of its own expenses while the center provides ongoing support in the form of evaluations, regular visits and handouts and other materials.

Despite these expenses, the center is continuing to expand the program. An additional 31 hospitals, including Emory University Hospital, Geisinger Medical Center and Stanford University Hospital, have joined the program this year. The center has also begun working with hospitals in Britain, where six centers now hold Schwartz Rounds.

In an essay he published shortly before he died, Mr. Schwartz described the relationships he had with several of his caregivers during his final months of life. Struggling to come to terms with leaving behind a wife and 3-year-old son, he wrote that the “acts of kindness — the simple touch from my caregivers — have made the unbearable bearable.”

“If I have learned anything,” he continued, “it is that we never know when, how or whom a serious illness will strike. If and when it does, each one of us wants not simply the best possible care for our body but for our whole being.”

His legacy has made that possible for all of us, patients and caregivers.

You Can't Handle the Truth?

Writing for the Well Blog on the New York Times, Dr. Pauline Chen has produced numerous essays that I always find very interesting and oddly well-timed. 

This particular subject has come up recently in conversations with friends: when doctors are less than totally forthcoming with their patients.  We would know - we are the medical students who silently observe behavior on both sides of the patient's door.  It doesn't escape us when the doctor, by way of explaining a little about the patient's history and current problem, tells us that their tumor is inoperable, and then steps confidently into the examination room that holds the waiting patient, and tells them that "there might be something we can do."  And then, after exiting the room and shutting the door, shakes his head and says to us, "No.  There's no way he is going to make it."

I am not exaggerating at all about that story.  I was the medical student.  My peers and I all have multiple versions of our own, variations on the theme.

Not every doctor does this.  I have observed physicians who truthfully and tactfully lay out everything they know for their patients and allow them to make truly informed decisions.  But plenty of them fudge or obscure the truth.  Maybe some of the difficulty lies in what the "truth" is in medicine... doctors certainly do not know everything, nor can they predict every outcome.  Getting a second opinion is not necessarily  mistrustful or naive.  Then, too, there are surely patients who do not want to hear that their options have run out, just as there are patients who definitely do want to know, for whom a brutally honest prognosis will help them to prepare emotionally, spiritually and otherwise for what lies ahead.

If your doctor really believed there was nothing more he could do for you, would you want to know?

When Doctors Don’t Tell the Truth

By Pauline Chen, M.D.

March 1, 2012
New York Times

Every spring, a former patient and his elderly parents would drive two hours to the hospital carrying chocolates for the staff — an epicurean celebration of the man’s successful liver transplant a few years earlier. The patient, tall, in his 30s and with sandy-brown hair, handed out the boxes, and his parents, their parched-earth faces beaming with joy, shook everyone’s hands.

But each time the parents came over to me, there seemed to be a moment of hesitation.

On the night of their son’s transplant, I was the doctor who relayed the grim details of their son’s state. As he lay in the intensive care unit waiting for the organ, I described to them his deep coma, his complete dependence on a breathing machine, his blood, which had become as thin as water, and his need for such high doses of an intravenous infusion to support his blood pressure that if we couldn’t do the operation soon, it would be impossible to move him even the few hundred feet to the operating room for a lifesaving transplant.

Because I believed that it was my duty as their son’s doctor to be truthful, I told them that their only child might die.

Fortunately, my dire prediction proved incorrect. And while I never questioned the importance of a doctor’s honesty, every year that couple and their son returned, I wondered again if my devotion to this professional ideal had come at a significant cost: their hope.

According to a study published last month in the journal Health Affairs, I am not the only doctor to have struggled with transparency and honesty.

Researchers from the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston created a survey based on the Charter on Medical Professionalism, a widely accepted code of professional behavior that upholds patient autonomy and the crucial role of physician honesty and transparency. Doctors who took the survey received $20 and were asked about their attitudes and their behaviors in the past year.

While a majority of the nearly 2,000 doctors polled believed that physicians should never lie to patients or fail to inform them of the risks and benefits of a procedure or treatment, a large number also revealed that they had not been completely honest or transparent over the past year. More than half had described a patient’s prognosis more optimistically than warranted. More than 10 percent had said something untrue. And even though almost all the doctors said that they believed confidential health information should be disclosed only with authorization, more than two-thirds had revealed private health information to others without the patient’s explicit permission.

“These results reveal a breakdown in communication that makes patient-centered care much more difficult,” said Eric G. Campbell, senior author of the study and an associate professor of medicine at Harvard Medical School, who directs research at the Mongan Institute.

The researchers were not able to assess why some doctors might have been compelled to veil or avoid the truth, but “I don’t believe doctors set out to be dishonest or have some kind of malicious or nefarious intent,” said Dr. Lisa I. Iezzoni, the study’s lead author and a professor of medicine at Harvard Medical School, who is director of the Mongan Institute. Dr. Iezzoni noted that some doctors might have worried that talking about a topic like weight loss could offend an overweight patient and even backfire. She added that others might have glossed over a terminal diagnosis, fearing that the patient and family members would never recover from a frank discussion of such devastating news.

But however well-intentioned these assumptions about how patients will react are, they are also often incorrect. Studies have shown that even in the gravest of circumstances, patients prefer accurate and honest information. Patients with a terminal diagnosis, for example, may be grateful to have the chance to put their personal affairs in order before it’s too late. “Patients need the truth so they can best make decisions for themselves,” Dr. Iezzoni noted.

The best approach, for both doctors and patients, may be to discuss preferences about communicating before difficult medical issues arise. “Patients need to sit back and think about how they’d like to learn about something related to their health,” Dr. Iezzoni said. These preliminary discussions are especially important for patients who may not want or be able to tolerate full disclosure, as in the case of children who are ill, individuals with progressive conditions like Alzheimer’s or Lou Gehrig’s disease, or those who come from cultures in which it may be acceptable to disclose a terminal or difficult diagnosis to the family but not to the patient.

Despite what some might consider dispiriting findings, the researchers remain optimistic about ways to improve communication and the future of the patient-doctor relationship. “I see patient-centered care as a work in progress,” Dr. Iezzoni said. That work includes teaching young doctors better communication skills, establishing reimbursement systems that allow time for conversations and recognizing just how challenging honesty and transparency can sometimes be.

The last time I saw the parents of my former patient, I finally summoned up the courage to revisit our conversation on the night of his transplant. I apologized for having been perhaps too honest.

As I spoke, I saw the parents’ smiles disappear, and once again I sensed that painful moment of hesitation.

Then the patient’s mother stepped forward and clasped my right hand. “That was a terrible time,” she said. “But,” she added, looking at her son, “what if things had turned out differently and we hadn’t even known?”