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Illness interrupts (book excerpt: Life in the Balance)

■ Thomas Graboys, MD, 64, was a renowned Boston cardiologist before Parkinson's disease and dementia forced him to stop practicing. His book chronicles the drastic change from doctor to patient.

By Thomas Graboys, MD, amednews correspondent — Posted Dec. 22, 2008

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In this excerpt, Dr. Graboys writes about telling his patients he had to stop treating them, and discusses how he and others ignored his symptoms after his wife's death.

On September 21, 2005, I wrote a letter to my patients. The letter was part surrender and part release, and it signaled the end of a ferocious struggle to maintain a façade of normality as Parkinson's disease cut deeper and deeper into my body and my mind. In the letter, I told my patients, many hundreds of them, some in my care for more than 30 years, that I could no longer be their doctor.

Being a physician was everything to me. I had spent all of my young adult life preparing to be a physician, and all of my adult life being one. It was the reason I got up in the morning. It was an integral part of my identity and my sense of self-worth. It was the symbol of everything I once had been -- decisive, quick-thinking, analytical, and in control -- but could no longer be.

I was trained, and by personal inclination and temperament was drawn, to a style of medicine that has largely gone by the wayside. My patients will tell you that their care was not simply a matter of tests, diagnoses, and prescribed remedies; it involved a sharing of fears and hopes, anxieties and triumphs. I firmly believe that an intimate, caring doctor-patient relationship is more than common decency; it has important therapeutic value. Sharing a patient's burdens, listening (the most important diagnostic tool in medicine), and assuring are as valuable as -- if not even more valuable than -- the impressive array of technology at our disposal. There were many complex reasons why I fought so hard to stave off "retirement," a word I have come to detest, but one of them -- no, perhaps a thousand of them -- was knowing what it might mean for each patient who had invested so much in me and who had entrusted their lives to my care. Each of them will find another excellent cardiologist; but trust and friendship -- words patients used over and over again in their letters to me after learning I was being forced to retire -- are not so easily replaced.

I can't say, exactly, how long I fought to keep up the illusion of normality as Parkinson's took control of my mind and body. With a progressive disease, the changes can be so gradual that they are hardly noticeable, until one day the cumulative effect is obvious to almost everyone. In my case, especially in the early stages of what would later be diagnosed as Parkinson's, it was also easy to attribute the early symptoms of fatigue and forgetfulness to another trauma in my life, the death of my wife, Caroline, in 1998.

Caroline's 22-month battle with cancer was an especially grueling and cruel one -- for her, for me, and for our daughters: Penelope, then in law school, and Sarah, then in college. It was devastating on every level: physical, emotional, and spiritual. I would lose myself in my work by day, refusing to let up on a demanding schedule of rounds and appointments, and then would take care of Caroline by night in a seemingly endless succession of 24-hour days. I was drained, spent, exhausted, depressed, and afraid. Guilt weighed heavily. At work I felt guilty that I wasn't doing more for Caroline; at home I felt guilty that I was shortchanging my patients because I was exhausted and preoccupied. And I knew that I was losing my closest friend and confidante, my soul mate since college.

Caroline and I had been together for 35 years, since we met at Cornell in 1963. I was the intense Jewish workaholic from the gritty working-class city of Fall River, Mass., constantly stressed by my need to succeed, very insecure. Caroline was the free-spirited blond surfer from California, an Episcopalian with a Southern California ease and self-confidence. A perfect match.

Ours was a strong and loving marriage, and her death left me bereft to the core. It would be easy for me -- and my colleagues, friends, and patients -- to attribute mental lapses, fatigue, or mild confusion to the ordeal and stress of Caroline's death and the grief that followed. By any measure, my workload was enormous, but it became my shelter and my retreat and gave me a reason to keep going. Work was my salvation.

In retrospect, however, some of the subtle changes that I started to experience in the months and years immediately following Caroline's death, such as a resting hand tremor and occasional forgetfulness, were not the ordinary manifestations of extreme grief, but the early expression of Parkinson's disease. Where the symptoms of grief and despair left off and Parkinson's began is impossible to know, but I suspect that they were closely related. Nevertheless, I had a rational and logical explanation for everything that was already beginning to happen to me, one that would allow me to believe that with time the old Tom -- sharp, energetic, always on top of his game -- would re-emerge. But it was not to be.

In this excerpt, Dr. Graboys talks about what he, as a patient, looks for in his own doctor.

A few days before a regular six-month appointment with my neurologist, John Growdon, in late 2006, I was asked what, if anything, I would like him to do for me that he wasn't doing already. My answer was quick and sarcastic: "I'd like him to call me every month to ask how I'm feeling," I snapped, as if a busy doctor with hundreds of patients in his care would have time for that.

But the more I thought about it, the more I realized that my glib remark cut close to the truth. I want to be on his radar screen. I want him to be thinking about my case, not just when I am in his office, but when he reads about new treatments and new insights into Parkinson's and Lewy body dementia. I want him to be turning my case over in his head once in a while, and I want to know that while there is nothing that exists today to reverse my dementia, he is thinking from time to time about how to make my life better.

When I saw Growdon a few days later, I asked if we could increase the frequency of our regular consultations from every six months to every three months, to which he readily agreed. Why? For the simple reason that the Parkinson's path is taking me through very unfamiliar and forbidding territory. I want a guide -- someone I trust who knows the medical terrain, someone who has been down the path with others -- to be there in spirit and in mind. I want someone mindful of the pitfalls, the traps, and the forks in the road. It may well be that little will change in my clinical condition over three-month intervals, but I don't want to see Growdon every three months merely to size up incremental changes in my symptoms or to tweak my medications; I also want the comfort of his presence and to know that every once in a while we can, in [former New York Times literary critic Anatole] Broyard's words [written while dying of prostate cancer], brood over my situation together.

In my own practice, I developed a keen sense of just how deeply appreciated and how profoundly comforting small acts of kindness and mindfulness can be for the patient and his or her family. Dropping in on a hospitalized patient at the end of a busy day, not to check the chart or to do a quick exam, but just to say "Hello, I just came by to see how you are. Is there anything you need?" Calling a patient at home a few weeks after their annual visit to see how their new diet and exercise program is progressing. Writing a letter of condolence to the family of a patient who has died (a sorely neglected necessity, in my view). These small acts say to the patient and the family, "I know you ache, I know you suffer, I know you are in pain," and allow doctor and patient to meet on the common ground of their mutual humanity.

I am not a surgeon, but when a patient of mine was scheduled for surgery, cardiac or otherwise, I always tried to pay a social visit in the hospital the night before, or tried calling them at home if they weren't yet hospitalized. I can't prove it, of course, but I believe such a visit or call decreases operative mortality. Such social calls were invariably welcomed and comforting. There is no way to measure the curative and healing power of such a bond between doctor and patient, but I am utterly convinced of its salutary effect.

It is also hard to overstate the importance of the doctor's literal laying-on of hands. Years ago I had a patient, Mrs. H, who had been hospitalized with terminal gastric cancer. It was her cancer, not her heart disease, that was threatening her life; but every day, as I rounded with my medical students and stopped to examine Mrs. H, I routinely listened to her heart. One day, under pressure of time, I forgot; and as I turned to leave, she said, "Dr. Graboys, aren't you going to listen to my heart?" I was embarrassed and flustered in front of my charges and immediately struck by the fact that although she knew her heart was not her major problem, she needed and wanted the reassurance of my touch.

As I reflected on the experience later, I also realized that Mrs. H. had interpreted my actions as a commentary on her condition. My failing to listen to her heart that day signaled a loss of hope in her situation. If I could no longer be bothered to examine her heart, it meant the cancer was so serious that it had rendered her heart problem irrelevant. Conversely, by examining her heart, I had been signaling hope that she was not succumbing to her cancer.

Similarly, a doctor's words -- as my mentor, Bernard Lown, [MD, renowned cardiologist and Nobel Peace Prize winner] has written -- can maim or they can heal. The physician who offers nothing more than impeccable clinical judgment can, nevertheless, draw the cloak of illness tight around a patient with carelessly chosen words. Too many times, patients have come to me and said that another cardiologist described their heart as a "widowmaker" or a "time bomb." The stress and anxiety thus induced by the doctor can turn him into a prophet. Words that allay stress, words that allow room for hope -- not false hope, but hope -- can allow the patient to shift the burden of worry onto the physician.

So I know what I look for in a doctor.

ADDITIONAL INFORMATION

Author Q&A

After seeing things from the patient's perspective, what do you wish you had known as a doctor?

I think that I was not necessarily involved with the [patient's] family unit. I realize now that's crucially important. You can talk until you're blue in the face, but unless you are involving the patient's family or colleagues, you may well miss the boat. ... You have to include the family if you're looking to deal with the whole patient. Offer the patient and the patient's family an opportunity to vent after they've had adequate time to deal with what may be a profound impact on their life. In the face of uncertainty, there's nothing wrong with infusing hope, and minimizing hopelessness, I think, is very important.

Since you stopped practicing, has it started to get easier to deal with not working closely with patients anymore?

I loved being a doctor. I loved taking care of people. ... I'm redefining myself in terms of what I'd like to do and what I'm doing, which is [visiting the practice and] just giving the patient the opportunity to sit and talk about anything. I have patients who are coming back from seeing other doctors in our group, and I spend maybe five minutes just greeting them. How are they doing and so on? This is really working out for patients. They need the opportunity to vent.

Is there a central message in your book that you'd like doctors to take away?

Don't underestimate the power of the spoken and written word, and the fact that we are, as physicians, in a unique position in terms of rendering patient care. That's a privilege, a right and an important manifestation of why we enter the profession in the first place.

One of the recurring themes in your book is that the doctor-patient relationship is quite valuable. Do most doctors agree?

The doctor-patient relationship should be preeminent, acknowledging that the relationship will allow the doctor to understand that an unhurried opportunity of sitting with the patient opens the admission ticket to the disease. I think doctors do [recognize] this.

You mention how your mentor, Bernard Lown, MD, wrote that a physician's words can maim or heal. How does that happen?

We published a paper about words that maim. I've been impressed since day one that what we say, as well as what we do, affects the outcome both short term and long term. In cardiology in particular, there is a kind of phrase, "med speak," that we use that causes the patient [stress]. ... Everyone may talk about, well, yeah, stress is a major issue, but it's underestimated. We can put our hands around a number for cholesterol, but we can't put our hands around a number for stress. Dr. Lown articulated that in many of the writings that he and I did together.

-- Interview by Brian Hedger