A Doctor Transformed, Into a Patient

By ABIGAIL ZUGER, M.D.
31 aug 2008--Doctors get seriously ill just like ordinary people, and some of them never recover from the shock. If of a literary bent, they are often moved to reflect for posterity on this disruption of the natural order, detailing their former hubris and the enlightening misery of health care experienced from the other side of the bed.
Against this generally lackluster collection of memoirs, Dr. Thomas Graboys’s stands out as a small wonder. Unsentimental and unpretentious, it manages to hit all its marks effortlessly, creating a version of the old fable as touching, educational and inspiring as if it had never been told before.
The story’s success lies partly in its almost mythic dimensions: Dr. Graboys rose high, and he fell hard. Until age 50 he was a medical version of one of Tom Wolfe’s masters of the universe: a noted Harvard cardiologist beloved by colleagues and patients, happily married to a tall, beautiful blonde. He was a marathon runner, a demon on the tennis courts and ski slopes, and, if he says so himself, a particularly handsome guy.
Then everything fell apart. Over a terrible two-year period Dr. Graboys’s wife died a lingering death from colon cancer. In his grief he barely noticed that he was not functioning quite as well as usual. Those around him figured his fatigue and uncharacteristic fumbling were only to be expected. He pulled himself together, met another woman, and then collapsed on the wedding day — the beginning of physical problems that could no longer be ignored.
It was Parkinson’s disease, the neurological condition that makes the body stiffen and shake, but it took Dr. Graboys many months to take the irrevocable step of giving his problems a name. During that time he went through every rationalization that sick people use to wish away their symptoms, then moved smoothly from denial to deception. “I’m just tired,” he snapped to concerned colleagues, even as he began taking surreptitious clinical notes on his own case.
Only when the chief of neurology at his hospital cheerfully hailed him in the parking garage — “Tom, who is taking care of your Parkinson’s?” — was the terrible word said aloud. Dr. Graboys finally understood that the jig was up.
From this moment his memoir unfolds in multiple layers, some predictable, some quite unexpected.
Dr. Graboys is not the first athlete to go from tennis and skiing to cautious walking and gym work. Nor is he the first good-looking man to watch his body deteriorate, the first father to become increasingly dependent on his children or the first master of the universe to contemplate the loss of his driver’s license.
His reflections as a husband are more unusual. He courted his second wife while still ostensibly healthy, although privately he knew something was wrong. He writes candidly about this duplicity, and the complicated grief and anger that infuse their relationship now as she faces a future of caretaking far different from the one she signed up for.
As a writer, Dr. Graboys is also unusual. Like many patients with Parkinson’s he suffers from a slowly progressive dementia, and is losing not only his physical but also his intellectual self. The memoir is written with a co-author, an arrangement always a little uneasy-making. Yet the voice here is true, somehow almost Parkinsonian in its steady, unadorned, slightly stiff prose.
Finally, Dr. Graboys is hardly the first doctor to find that without the practice of medicine — progressive disability forced him to retire a few years after his diagnosis, at age 62 — he is barely recognizable to himself. But he does one of the best jobs on record of doggedly unpeeling the onion-skin layers of alternating ego and vulnerability that encase the doctor turned patient.
While in practice, Dr. Graboys was a master clinician who often rejected the glittery technology of his specialty for older, slower medicine. His excellence made the transition to patient more difficult than most. He knew how good a doctor he was, and surrendering control of his own case to someone possibly not quite as competent was just impossible. Every instinct told him to be his own doctor, his very own “dream team.”
As he ruefully reports, he is still learning over and over that the doctor who is his own dream team has a fool for a patient. And yet, enough of the old Dr. Graboys comes through that a reader might conclude he would also be foolish to sign off his own case completely.
As he once made a point of involving patients’ families in their care, he invites his own family members to talk directly to the reader. As Dr. Graboys once gave each of his patients a handwritten care plan (“I never gave the patients a photocopy”), he provides readers with Parkinson’s a set of suggestions for improving their own lot.
This is the kind of book inevitably given to medical students to inculcate them in the humanistic dimensions of medicine. I wouldn’t waste it on them. Save it for older doctors, still at the top of their game, gleaming and self-confident. Each of them could use this textbook of the graceful and courageous exit.

CMU professor gives his last lesson on life

By Mark Roth
Randy Pausch talks to the standing room only crowd at CMU's McConomy auditorium yesterday.
Randy Pausch set the tone early on yesterday at his farewell lecture at Carnegie Mellon University.
"If I don't seem as depressed or morose as I should be, sorry to disappoint you," said Dr. Pausch, a 46-year-old computer science professor who has incurable pancreatic cancer.
It's not that he's in denial about the fact that he only has months to live, he told the 400 listeners packed into McConomy Auditorium on the campus, and the hundreds more listening to a live Web cast.
It's more that "I am in phenomenally good health right now; it's the greatest cognitive dissonance you will ever see -- the fact is, I'm in better shape than most of you," he said.
And then, to the appreciative laughs and applause of his audience, Dr. Pausch dropped to the stage floor and did a set of pushups.
"So anyone who wants to cry or pity me can come down here and do a few of those, and then you may pity me," he said.
"What we're not going to talk about today," he continued, "is cancer, because I've spent a lot of time talking about that ... and we're not going to talk about things that are even more important, like my wife and [three preschool] kids, because I'm good, but I'm not good enough to talk about that without tearing up."
What he was there to discuss was how to fulfill your childhood dreams, and the lessons he had learned on his life's journey.
When he was a boy, Dr. Pausch said, he had a concrete set of dreams: He wanted to experience the weightlessness of zero gravity; he wanted to play football in the NFL; he wanted to write an article for the World Book Encyclopedia ("You can tell the nerds early on," he joked); he wanted to be Captain Kirk from "Star Trek"; and he wanted to work for the Disney Co.
In the end, he got to tackle all of them, he said -- even if his football accomplishments fell somewhere short of the NFL.
In his 10 years at Carnegie Mellon, Dr. Pausch helped found the Entertainment Technology Center, which one video game executive yesterday called the premier institution in the world for training students in video game and other interactive technology.
He also established an annual virtual reality contest that has become a campuswide sensation, and helped start the Alice program, an animation-based curriculum for teaching high school and college students how to have fun while learning computer programming.
It was the virtual reality work, in which participants wear a headset that puts them in an artificial digital environment, that earned him and his Carnegie Mellon students a chance to go on the U.S. Air Force plane known as the "vomit comet," which creates moments of weightlessness, and which the students promised to model with VR technology.
And even though his football career ended in high school, he said, he probably learned more from that experience than all the other childhood goals he did achieve.
Among other things, he learned the value of the coach yelling at him for his mistakes, because an assistant coach told him after one particularly brutal practice: "When you're screwing up and nobody's saying anything to you anymore, that means they've given up on you."
While he didn't get to be Captain Kirk, actor William Shatner, who played Kirk, did visit him at Carnegie Mellon in recent years.
"It's cool to meet your boyhood idol," Dr. Pausch said. "It's even cooler when he comes to you to see what you're doing in your lab."
And he got the chance to write the World Book's article on virtual reality.
Known for his flamboyance and showmanship as a teacher and mentor, Dr. Pausch talked Disney officials into letting him work on sabbatical at the company, helping design such virtual reality rides as the Magic Carpet and Pirates of the Caribbean.
More recently, he got the chance to intern with Electronic Arts, the video game company, and that relationship prompted the firm to give Carnegie Mellon the right to use its famous Sims animated characters as part of the Alice curriculum.
Near the end of his talk yesterday, Dr. Pausch surprised his wife, Jai, with a cake for her birthday on Monday, and persuaded the audience to sing for her. She managed to choke back her tears long enough to blow out the single candle on top.
To honor his life and career, Electronic Arts announced it was setting up a scholarship fund for deserving female computer science majors at Carnegie Mellon.
And the school itself said it would put his name on the footbridge that will connect the new Gates Computer Sciences Building and the Purnell Center for the Arts, symbolizing the way he linked those disciplines.
Dr. Pausch's ordeal began a year ago, when he began to feel bloated and his bowel movements changed, he said in an e-mail interview. When doctors did a CT scan to see if he had gallstones, they spotted a tumor.
"I got the news from my GP," he wrote, "who said 'There's a mass on your pancreas, and it's not fair.'
"As I later told him, it's unfortunate, and it's unlucky, but it's not unfair. As I always tell my 5-year-old, it's not 'unfair' when you don't get what you want. We all run the risk of getting hit by the cancer dart."
In a Web-based diary he kept of his treatment, Dr. Pausch concentrated on trying to improve his survival odds. He knew it would be an uphill battle. Despite improvements in treatment, the overall five-year survival rate for pancreatic cancer is just 5 percent. Even the one-year rate is only 26 percent.
The first step was surgery, which took place exactly one year ago today at UPMC Shadyside. Surgeons took out his gall bladder, a third of his pancreas, part of his stomach and several feet of small intestine.
As he recovered, Dr. Pausch discovered that M.D. Anderson Hospital in Houston was carrying out an experimental, highly toxic radiation and chemotherapy regimen for pancreatic cancer that might increase his five-year survival odds to almost 45 percent.
The treatments began in November and didn't end until the following May. The low point, he wrote, was on Christmas Day of last year: "My wife and children were in Norfolk, and I was in Houston getting poison put in my veins. I was never depressed, but that was the day I was really squeezing the lemons hard to get lemonade."
But later, less than a week after finishing chemotherapy and radiation, Dr. Pausch was playing flag football with his recreational league team again.
"First play of the game, I caught a 25-yard pass over the middle," he said in his diary. "Granted, I was sucking wind the whole game, but damn it's good to be back on the field."
In mid-summer, after tests initially showed he was clear of cancer, he added two rounds of treatment with an experimental cancer vaccine at Johns Hopkins Hospital in Baltimore.
And then, just as he was finally feeling healthy again late last month, Dr. Pausch sent out this message to his diary readers:
"A recent CT scan showed that there are 10 tumors in my liver, and my spleen is also peppered with small tumors. The doctors say that it is one of the most aggressive recurrences they have ever seen."
He and Jai moved their family to Chesapeake, Va., so she would be near her relatives. They made initial plans for hospice care, and Dr. Pausch began palliative chemotherapy to give him some extra time.
"I find that I am completely positive," he wrote. "The only times I cry are when I think about the kids -- and it's not so much the 'Gee, I'll miss seeing their first bicycle ride' type of stuff as it is a sense of unfulfilled duty -- that I will not be there to help raise them, and that I have left a very heavy burden for my wife."
He is concentrating now on creating videos for his children. With his oldest son, 5-year-old Dylan, Dr. Pausch went on a recent trip to Disney World and to swim with dolphins, thinking Dylan may be the only child who will have strong direct memories of him.
His wife and children, he said, "mean everything to me. They give a purpose to life and a depth of joy that no job [and I've had some of the most awesome jobs in the world] can begin to provide.
"I hope my wife is able to remarry down the line. And I hope they will remember me as a man who loved them, and did everything he could for them."

When you're the patient

The medical profession's "doctors don't get sick" philosophy can make for an isolating experience when physicians fall ill.

Gail Garfinkel Weiss

In July 2005, more than a year after he underwent two surgeries for bladder cancer, Tacoma, WA, based family physician Richard E. Waltman wrote a second article for Medical Economics about the experience. He described the BCG treatments, the feelings of helplessness and terror that come with being seriously ill, the comfort he took in the support of family, and his disappointment that some of the colleagues with whom he had worked closely for years didn't, as he put it, "rise to the occasion."
He anticipated that his physician colleagues "would step forward with support and concern," but with a few notable exceptions, that didn't happen. "Some ask in passing how I'm feeling, and a few have commented about the Medical Economics article," he wrote, "but most have remained silent. This made me sad, then angry, then puzzled. When I finally asked some colleagues why they didn't say anything about my illness, the answers were instructive. 'I didn't think you wanted to talk about it,' said one. 'I didn't know what to say,' said another. And perhaps most interesting of all: 'You're one of us, not one of them. They get sick. We don't.' "
How pervasive is the "doctors don't get sick" attitude among physicians? Very, say physician wellness authorities—and it explains why many physicians refuse to seek medical care, choose not to tell colleagues when they're ill, and steer clear of sick colleagues lest the bad karma affect them, too.
The temptation to turn away
"It's human nature to hold misfortune at a distance, and doctors particularly fantasize that the serious things we diagnose in patients couldn't possibly happen to us. It's a coping mechanism when we deal with tragedies on a daily basis," says Elizabeth A. Pector, an FP in Naperville, IL, who has written about physician burnout and other psychosocial issues.
"When one of our own is diagnosed with something serious, it's too close for comfort and we feel vulnerable," she continues. "We also feel helpless, which in-control docs hate. Distancing helps us deal with these emotions. We don't ask, 'How are you doing? How is your family coping?' Unfortunately, this leaves our stricken colleague feeling like a pariah."
Of course, there are exceptions. M.P. Ravindra Nathan, a cardiologist in Brooksville, FL, has nothing but praise for the cohorts who helped him weather a series of health crises that included a kidney transplant and a heart attack. His practice partner and the other cardiologists at the hospital not only kept his practice afloat, he says, "They were very attentive and made sure that I got excellent care." And when Eugene Ogrod, an internist in Sacramento, was hospitalized with epiglottitis, his office partners visited and asked about his recovery, and he describes his physician friends as "inquiring and supportive."
It's also true that some physicians who are ill downplay the severity of the infirmity. They may fear being scorned for having violated the tacit "we don't get sick" oath, or they worry that referrals will diminish.
Too often, though, critically ill physicians, in the words of Ronald L. Hofeldt, a psychiatrist in Salem, OR, are treated almost as if they've disappeared. He recounts a situation in which a member of a multispecialty group wasn't visited by any of his associates when he was hospitalized for treatment of a serious illness. Hofeldt attributes this behavior to physicians' "higher-than-usual level of anxiety regarding illness and dying," and to the fact that "when one of our own becomes ill it frays the boundary between our professional self and our personal self. Because we don't know what to do or say, our reaction is often one of avoidance. Unfortunately, we don't provide the same level of compassion to our colleagues that we do to our patients."
San Francisco psychiatrist Michael Menaster agrees that many physicians "have a sense of omnipotence and immortality," in part because they're high achievers and in part to maintain a confident veneer in a profession that exists to conquer illness and, in the minds of some, death itself. Waltman's colleagues, Menaster says, "may have been uncomfortable with his manifest mortality."
Indeed, in "When Doctors Get Sick," their 1998 article in Annals of Internal Medicine, physicians Howard M. Spiro and Harvey N. Mandell mention "the unconscious pact with the Creator that many physicians have made: We will take care of the sick and You will guarantee us good health." Transplant surgeon Pauline W. Chen, who includes that quote in her recently published Final Exam: A Surgeon's Reflections on Mortality (Alfred A. Knopf, 2007), notes that in denying their own mortality doctors have been able to render incredible patient care in areas rife with bubonic plague and yellow fever, and more recently AIDS and SARS before the natures of those illnesses were understood. An effective way to maintain that steely resolve, Chen says, is for physicians to shield themselves from evidence that doctors are as vulnerable to disease as everyone else.
Training—or, rather, lack of training in this area—plays a role, too. As Ron Hofeldt points out, "We learn about compassion and humanism, but during our professional lives we leave the tender loving care to nurses. Our mentoring process and culture of medicine hasn't taught us how to address each other when we become ill." At the same time, he continues, in physician/physician relationships, "When one person falls ill, we don't know where the boundary is. We have no problem asking patients about their symptoms and progress, but if we're talking to a physician friend such questions might seem intrusive, so we may ask nothing at all."
What to say and what not to say
Internist Alan Roberts, who was diagnosed with prostate cancer in 1999, has written about his experience and participated in symposia for physicians with the disease. His colleagues have been supportive, he says, but he acknowledges that most people view cancer as a daunting illness—especially physicians, who know firsthand of its destructive power.
Complicating matters, says Elizabeth Pector, is physicians' access to their own pathology reports, and a likelihood that the doctor has seen worst-case scenarios involving people with the same illness. "When our colleagues are nowhere to be found, there's no one to whom we can confide our deepest professional and personal fears," she says. "We desperately need someone to listen; someone who is not afraid to call and say, 'I'm so sorry to hear about your illness. How are you doing? Really, how are you doing?' "
Pector offers some advice for physicians on how to reach out to seriously ill colleagues:
Keep in touch. Ask them to have coffee or lunch with you, and be willing to listen to their story, repeatedly if necessary. Continue to invite them to social outings; they may still want to be in the loop.
Offer specific means of help. Rather than saying, "Call if you need anything," ask, "Can I take your hospital call for the next month?" or "Can I arrange a rotation in our department to cover your office patients until you're better?"
Convey concern without trite platitudes. "I'm sorry," or "I have no idea how you feel, but I want you to know I care," are always appreciated. Similarly, it's better to say, "I don't know what to say," than to say nothing at all.
Don't invoke the divinity's role in illness, or characterize the illness as an opportunity for professional growth. Avoid "God doesn't give you what you can't bear," "God has his reasons," and "Enduring this will make you a more compassionate doctor; you'll know how patients feel." Let your colleague find his or her own spiritual or personal meaning in misfortune.
Don't minimize the situation or tell your colleague to "look on the bright side." Phrases that start with "At least" aren't helpful. Try substituting "I'm so glad that." For example, "I'm very sorry to hear about your cancer, but I'm glad to hear it didn't metastasize" sounds much better than, "At least it didn't spread."
If time or distance or your personal inclinations preclude a face-to-face encounter with a sick colleague, send a handwritten note or a supportive e-mail message, Waltman advises.
There are, of course, seriously ill physicians who prefer to maintain a stoic, business-as-usual veneer after receiving dire medical news. Waltman knows of physicians who didn't tell co-workers, or even family, that they had been diagnosed with a dangerous illness. "We can't be expected to read our ill colleague's mind," says Pector, "but we can be expected to reach out and offer practical, tangible help as well as friendship."
After lending an ear, however, be sure to maintain confidentiality, just as you would with patients. Not because there will be legal repercussions—if the physician isn't your patient, there probably won't be—but because no one wants information about their medical problems circulated on the rumor mill.
Crossing the us/them barrier
In writing the articles about his illness, Waltman says he wanted to break the code of silence that prevents physicians from acknowledging that they're ill, and that encourages colleagues to look away—as if the sick person has committed an etiquette lapse and the polite thing is to pretend not to notice. In part, he thinks that the code of silence is a "generational thing" and a "guy thing" that may dissipate as more women enter the medical profession and the World War II and baby boom cohorts yield to the less stoic and more emotionally open Generation X and Y doctors.
Meanwhile, physicians need to do a better job of heeding the advice they give to patients. "We're quick to tell patients to take a few days off from work when they have the flu, and we'd never suggest to them that a critical illness is a sign of weakness," Waltman says. "But we come to work with bronchitis and back pain so severe that we can hardly stand up, and often maintain a 'don't ask, don't tell' philosophy regarding our own and our colleagues' illnesses, largely because we don't want to acknowledge that we're mortal.
"In my case, no one was unkind, and call coverage was never a problem, but even now, two years after my cancer diagnosis, my colleagues still prefer not to talk about it. Well, not only can we talk about it, we should. In addition to being there for our patients, we need to be there for each other."