A paper on the physician as patient, written as part of her researches for a doctorate in medical humanities, by Leila M. Hover, Drew University, Madison, New Jersey. November 8, 2001.

Published here - with her kind permission - 3rd December 2001

 

[A list of works cited, together with web url: references, is given at the foot of the page.]

 

Doctors are Never Ill... Are They?

    This is the rhetorical question posed by one of the physicians whose story is discussed in this paper (Gray, Doctors are never ill: 1).

    Being ill is difficult for anyone, but being ill when the patient is a physician is even more difficult. A physician is the one who is in charge and in control, the very opposite of one who is a patient. As Drs. Harvey Mandell and Howard Spiro note: "When a doctor is sick enough to be admitted to a hospital, he can no longer write orders; orders are written about him, removing him from control of his own situation". (Mandell and Spiro, vii).

    Doctors who write about their own illnesses are relatively rare. One reason for this is that they may lose their practices because, after all, reliability and availability are what we all seek in a physician.

    The narratives discussed are written by three male physicians of varied national backgrounds: Singaporean, U.S, and British; they are respectively an obstetrician-gynecologist, a cardiologist, and a general practitioner. The tone of their stories differs among the three and this may be cultural as well as reflective of their individual personalities. One cannot take these three stories as representative of the whole, nevertheless they do seem to fit some cultural stereotypes: Eastern serenity, American openness, and the British "stiff upper lip."

    Regardless, physicians are in an awkward position as patients: they see their illnesses through a sort of bifocal lens - from the inside as patient and from the outside as physician. This sense of "splitness" was described by one physician diagnosed with breast cancer: "One part of her was a sick, frightened patient [. . . ]. The other was a disciplined observant scientist keeping track of [. . .] white blood cells counts, fever curves, and drug flow sheets" (Keoun 1616). This doesn't make life easier for either the doctor/patient or the attending physician, whose patient may be constantly second-guessing him (Keoun 1616).

    Dr Richard Yung has suffered from multiple myeloma with renal and long bone involvement since November 1998, and has had chemotherapy and stem cell transplantation. This is essentially the opening of his story, but he then goes on to place himself within his milieu as an obstetrician-gynecologist who, professionally, was little involved with suffering. But he realizes that he is the one who now must be ministered to; he must cede control to others and "trust others [. . .] for my well-being and comfort" (Yung 7). He is not self-pitying: "At least I didn't ask, 'why me?'"(7)

    He employs a modified flashback to supply a synopsis of his physically active and healthy lifestyle pre-illness, and irony in relating an anecdote of having completed a Quarter Marathon when a friend asked, "What are you preserving your heart for? For cancer?"

    When he was initially given the diagnosis of stage IIIB multiple myeloma, he responded stoically, "like a good soldier," but that night, at home with his wife, also a physician, the shock set in. However, with great composure, he decided it was too soon "to call it a day;" he still had a life to live. He and his wife have always shared their deepest feelings and prayed together. This really began thirty years before when his wife suffered two life-threatening illnesses at ten year intervals. It was then that they turned to God, and their friends and the whole church prayed for her. They felt that it was faith and prayer that had pulled her through. His attitude was "now its my turn" and his wife was there supporting him. She was his example of how to endure suffering. They once again prayed together, and he explained that it was only then that they experienced peace of mind.

    In a period of two years, he was admitted seventeen times, had eight courses of various chemotherapies, and a stem cell transplant. He was started on thalidomide because of a relapse and developed Guillain Barré syndrome. In addition, he also had a painful outbreak of herpes zoster. All of this is related with great objectivity. Some emotion is implied when he mentions that it took four months after his last course of chemotherapy to get past the side effects and for hair growth to resume.

    He warns the reading physician of the missteps that can occur when the patient is a doctor, doing either too much or too little for them. But the attending cannot "abdicate [. . .] responsibility" for treatment recommendation (8).

    Dr Yung has learned to be a 'patient' patient in the clinic, waiting his turn with the other patients, and not expecting special attention because he is a physician. His illness, he feels, has developed humility in him.

    Indeed, he has found other patients a true source of inspiration and role models for him in the ways that they confront and battle with their disease and the sometimes awful side effects that their treatments entail. Seeing this, he says, "How could I, a professional, show any sign of weakness, and feel sorry for myself (Yung 13)?" He feels that his faith in God and daily prayers sustain him through it all and that "I did not have to face more suffering than I could take (Yung 13)."

    After reading the illness story of the next physician to be discussed, Dr Yung comments that "medical training had never adequately prepared us as patients (Yung 13)." Dr Yung's personal religious faith and his trust in his physicians, nurses, and ancillary staff and their abilities, as well as the demonstrations of support from family, friends, church congregation, and colleagues, all served to bolster his positive outlook. It is this positive outlook and attitude which he felt to be essential to healing, allowing one to solve the problems that are solvable and let go of that over which one had no control. He is almost paraphrasing the Serenity Prayer. He instructs his reader that this positive attitude can and should be consciously adopted as a way to approach life and serious illness.

    He has become more meditative and realizes that healing depends on his caregivers and the trust he places in them. He realizes as well that "doctors are people too - with their own worries and pressure on their time (Yung 13)." He knows that the doctor as patient can't expect the world to revolve around him, and that patience is a virtue to be cultivated if one is to cope with being ill.

 


 

    Dr Michael Dohan suffered from chronic lymphocytic leukemia, which had been held in abeyance for seven years by chemotherapy. The disease progressed however, and he made the decision to have a bone marrow transplant (Dohan 589).

    After his acceptance for transplant, his first reaction was joy which quickly turned into anxiety and doubt. He felt isolated by the assumption on the part of both family and physicians that, because he was a physician, he understood more about the therapy than he actually did (589). Implicit in this statement is his lack of candor with both of the above groups, and his inability to be open about his fears and misgivings.

    The first phase of treatment involved the bone marrow harvest and then admission to the transplantation service. His room was not large and was fitted with a special air lock to prevent hospital-borne infections. Anyone visiting had to wash, mask and glove before entering. He himself could go as far as the small hallway only if masked and gloved. As time wore on, he realized that he was not only in physical isolation, but was emotionally isolated as well.

    Being addressed by many of the staff as "doctor " made him feel special and he continued in that role by checking his medications. He found this exceedingly fatiguing, however, and he quickly realized he had to relinquish control; he "needed to let go and trust someone else to care for me." He recalls a well-known article by Dr Franz Ingelfinger about his own cancer battle and how he realized he had to "stop being a consultant in his own case, and how much inner peace he achieved when he finally found a doctor he could trust to treat him as a patient (589)." Dr Dohan knew he needed to do that, too.

    On the third day he begins his radiation therapy, a strange misnomer in itself since, as Dr Dohan was informed, he would receive a lethal dose, which was therapeutically required. This lethality was always foremost in his thoughts, because "what if something went wrong with my harvested bone marrow and there was none to give back (589)." The treatments themselves were painless but lonely as he lay there under the clicking machine. As he grows increasingly weak, both mentally and physically, accompanied by constant nausea, he wants only to withdraw from the world, to say "STOP! No more therapy!" [sic] But he never said it or even intimated it to anyone. He was trying to be a "good" patient but, as Mandell and Spiro point out, "Many of us physicians no longer know how to deal with emotion in patients or in ourselves (453)." During his worst days, he "just wanted to lie in bed with blankets over my head and disappear. I did not know how I would survive (589)." Similar to a scene in Wit, this must be a fairly common response to difficult therapies.

    In retrospect, he doesn't understand why he couldn't share his terror with anyone, although he believes that admitting the terror "would have made it harder to deny the reality and to remain a dispassionate physician who believed in the science of this therapy (589)." This was really his last stand at remaining in control; perhaps if he didn't give his fear a name (because names are powerful) it wouldn't be real. All patients feel powerless and feel they lack control when they are hospitalized. This is tremendously magnified for a physician who is the controller par excellence.

    After his last radiation treatment, his bone marrow was infused. He also received intravenous therapy, which caused constant urination. Sleeping too soundly one night, he was incontinent of urine. Embarrassed by this, he changed his scrubs and sheets himself. Both radiation therapy and antibiotic therapy caused severe diarrhea, and one night he was incontinent of feces. He rang for the nurse and felt the "last bit of dignity slip away (590)."

    Finally his discharge day arrives and he is so filled with anxiety, his nausea worsens and he suffers dry heaves. Once home, he decides not to discuss his hospital experience with anyone because, on the few occasions he tried to, he cried. He couldn't sleep despite various potions and tablets, and his nausea was worse. He decided he was suffering from post-traumatic stress syndrome and began to see a therapist. At the first meeting he spoke little, but cried much. Everything was topsy-turvy: "I was no longer the healer but an utterly helpless patient (590)." But that night he slept.

    As he reflects on his experience, he is still unsure why it had such an emotional impact on him. He poses several possibilities, including having a physician's perspective, but decides it was all of them and more. He recalls his sense of extreme helplessness and that, as Dr Yung also said, "Everything was out of my hands (590)." As a doctor, he took care of others and his own health, living a healthy lifestyle and indulging in athletics, as had Dr Yung. He was in charge. His experience attacked his sense of self, of someone who is in charge and in control, and he admits to some remaining emotional fragility.

    Dr Dohan makes no attempt to gloss over his experience or paint himself as a hero. His tone is matter of fact, but still has an undertone of surprise at his emotionality while undergoing what is, after all, a life-threatening procedure. He writes in a linear fashion: this happened, then that happened, but it is interspersed with the emotions he experienced. He has permitted us access to his interior feelings and emotions. This is in contrast with Dr Yung who, to a large extent, did not go into the effects that treatment had on him, but did emphasize the role that religion played in his life.

    He concludes his story, as does Dr Yung, with a paean to the care his physicians gave him and the trust he had in them. "I trusted them to kill me, and then bring me back to life."

 


 

    Dr Alan Gray is a British GP who was diagnosed with a squamous cell carcinoma of the esophagus "in quite the most awkward position right at the very top of the esophagus (Gray, Doctors are never ill: 1)." Because of its location, removal would require a laryngectomy and permanent tracheostomy.

    As one reads Dr Gray's series of essays, one is again reminded of Wit. He is indeed witty, with a dry and pithy sense of humor, and a total lack of self-pity. The only adjective that comes to mind as these essays are read is 'remarkable.' He has chosen to relate his truly horrifying therapy through a scrim of humor; perhaps to do otherwise would only bring tears, and perhaps he needed that distance.

    After his diagnosis, since the surgical team "could not be assembled from the golf links and the trout river for a fortnight" (Gray, Doctors are never ill: 1), he and his wife went on a short vacation and spent the afternoon before surgery in their favorite restaurant along with two bottles of wine.

    He notes that he had no fear of surgery, but had a certain sense of scientific detachment and curiosity. Again, trust in the surgical team played its part.

    Afterwards, in the ICU, he found that he had lost not only the expected esophagus and larynx, but also the pharynx, thyroid, and parathyroid glands which had suffered metastasis. The loss of these glands caused problems in controlling calcium levels and concomitant tetany episodes. Muscle spasms caused him severe pain involving his two large incisions.

    On his initial awakening post-surgery, he felt himself to be relatively pain-free and thought "...why isn't something hurting here?" Until he coughed. He describes quite clearly that the pain was "nothing less than spectacular... [and] I swore never, ever to cough again (Gray, Pain 1)." Pain control proved to be less than wonderful, but he continues in his mode of scientist when he observes in a somewhat miffed tone that he never had any sense of euphoria from the morphine, and it had been "one of the things I had been interested in experiencing (Gray, Pain 2)." Even when morphine was supplied directly into his jejunum, it "...delivered no 'buzz' at all. What do they put in the stuff these days? What I needed was a pint of decent ale...(Gray, Pain 2)"

    He is encumbered with an assortment of twelve tubes, drips and drains, which he gradually lost over a period of days. On the tenth post-op day, he was permitted a glass of lemon barley water which he luxuriated in, it being the first thing to pass his lips in that time. His stomach had been "...anastomosed at the level of the root of the tongue with little in the way of any remaining musculature in the throat to prevent reflux. I rapidly learnt not to bend down to reach for my slippers...(Gray, Doctors are never ill: 2)"

    Dr Gray undergoes radiotherapy, but not a lethal dose, as did Dr Dohan. Although he does not describe it as a lonely experience as Dr Dohan did, the inference is there as he describes how the radiologists "flee the room." (Gray, Radiotherapy 1). He feels he is part of a production line of anonymous patients all bound for radiation therapy. And he reflects, "Here am I, the sick physician, a curiosity amongst the 'ordinary' line of sick patients. But I am no different to them: I am treated no differently, and I have to assume that my illness behaves no differently (Gray, Radiotherapy 1)." Nonetheless, he thought he would escape the side effects of radiotherapy: "I thought I would be immune, as I appeared to be to everything until this cancer caught up with me; but once again, I'm no different to other mere mortals (Gray, Radiotherapy 2)." Although purporting to tell the reader that he is really an ordinary patient, he nevertheless thought he would escape the side effects that normal patients suffer. A touch of magical thinking, perhaps.

    With all his "-ectomies," Dr Gray has lost his ability to speak, including the possibility of esophageal speech ("I ain't got no esophagus either..."), he uses an electronic gadget which is held against the neck. It produces a unique monotonal voice which he finds "has an electrifying effect upon children, and a very useful effect on barmaids across a crowded bar which provides instant service (Gray, Tracheostomy 2)." One has to believe that Dr Gray subscribes to Dr Yung's belief in a positive attitude.

    Quite far along in his series of essays, Dr Gray uses the past tense and a flashback to cover his last week of practice: the impact of closing the practice on both his staff and patients, as well as himself. (Gray, Ex-GP 1)

    He has not lost his scientific curiosity and used himself as an 'n of one' in an "uncontrolled eyes-wide-open trial" of tracheostomy equipment which was happily supplied by two companies. They were delighted to have a "Medical Man as a specimen." He describes it a "an interesting little trial" which had a satisfactory outcome (Gray, Trachy Bits 1-2).

    In his last essay, "Final Thoughts... for the Time Being," written one year post-operatively, he discusses his unreasonable fright when going for his follow-up visits, as well as his sense of gratitude. And he wonders for the first time if "ordinary" patients experience the same emotions although, he thinks, it is harder knowing the statistics.

    Dr Gray does feel it helps to write about his illness, and his target audience is other physicians "who find themselves in the same predicament, and to those who, like me, always considered themselves immortal (Gray, Final Thoughts 2)." Dr Gray, even more explicitly than the first two physicians, has written what Anne Hawkins chooses to call a "didactic pathography" which is "motivated by the explicit wish to help others (4)."

    Dr Gray's voice, although physically gone, is heard very clearly in his writing. His humor, black at times, is not uncommon in pathographies (Hawkins 161).

    A personal communication from Dr Gray in the last month reveals that he has a metastasis to the skin of one side of his neck, and he and his physicians agree there is nothing further to be done. He concludes his e-mail with the remark that this author has "joined the story at an interesting stage (Gray, e-mail)." Perfectly in character.

    Each physician has chosen a different way of telling his story, as well as confronting his illness. Dr Yung emphasizes his reliance on religion and developing patience. Dr Dohan chose counseling, and Dr Gray uses humor mixed with a soupçon of scientific objectivity.

    Louise Andrew says that: "Physician illness, like a charge of negligence, is an intensely personal attack on an especially vulnerable population (Andrews 1)." Vulnerable because of their strong identification with being physicians, and their self esteem is inseparable from that identification. Part and parcel of that identification is a sense of immunity from all the illnesses to which their patients are subject. It is also part of the magical thinking that patients use in reference to physicians: physicians are shamans and powerful healers and they don't get sick.

    Control and "in-chargeness" are equally parts of the physician personal-ity. Their identity requires they continue working in order to maintain that identity. Illness had always been the enemy to be fought against for the patient, but is even more to be battled when it occurs in the physician. Becoming a patient is anathema to the physician. A physician-patient is an oxymoron. But Mandell and Spiro declare that:-

    Donning the hospital gown turns doctors into patients. Just as putting on a white coat as a third year medical resident symbolized entry into our mysteries, so the hospital gown stands for exile. The white coat provides a symbol of power and the hospital gown open at the back teaches more humility than even being on the other end of a proctoscope. It is the final surrender to patienthood [. . . ] (452-453).

    Still, as Dr Yung noted, medical training doesn't prepare one to be a patient. And the view changes radically "from the other side of the bed sheets," as one physician put it (Wray 1466). The doctor with breast cancer mentioned earlier described "a strange, extraordinary shifting in my life. Reality moved from one place to another, as if I had been sitting around a table and were suddenly moved to another chair. Everything was the same, yet different (Keoun 1616)." Being ill as a physician exposes one, makes one vulnerable and, even more, makes one's colleagues feel vulnerable. The self-image of himself as impervious, powerful, scientific, and objective works only to distance the physician from any peer support system, while ill physicians who defer care and continue to practice are dangerous to themselves and their patients (Anonymous, 1250).

    But what is the psychological sea change that the sick doctor undergoes when he finally acknowledges being seriously ill and is admitted? One researcher finds that doctors, initially at least, are upset at being treated as patients rather than doctors. But after a bit, a mindshift occurs and they veer to the opposite pole, "complaining that they are being treated as a scientists, not patients (Keoun, 1616)." We see this shift very plainly in at least two of the three illness stories discussed earlier, although these doctors voice it differently. They feel they must give up doctoring themselves, being backseat drivers, as it were, because it is too stressful and fatiguing, and (unsaid) in their innermost selves they really want to surrender and be taken care of by someone they trust. They are willing to give up their control and let someone else take control; they are willing to be dependent because they need to be.

    This surrender of decision making works in the physician/patient's favor by allowing his own physician to treat in his patient's best interests. However, being the doctor's doctor is a difficult role to fill: there is no training for treating a colleague, as there is for the pope's confessor. Many physicians will go outside their own milieu to avoid being treated by colleagues who know them and/or to get "the best." Each approach has its pluses and minuses. Some want professional distance, others familiarity.

    Does having the experience of a serious illness make for a better, more empathic physician? Plato thought so, and some cultures still require their shamans to have had an illness or wound before they can become healers.

    However, the doctors whose stories have been discussed here were all relatively fortunate in their choices of physicians because, if they were not all cured, they were all healed.

    And to answer Dr Gray's rhetorical question: Doctors are never ill... are they? Yes, of course they are. Doctors don't acquire a shield of immunity with their M.D.s, but it is their misfortune to acquire a mindset that instructs them to behave as if impervious to the slings and arrows all humankind is heir to. It is a form of hubris which crumbles quickly when one finds oneself looking up from the hospital bed instead of standing beside it.

 


 

Works Cited

Andrew, Louise B. Illness as an Adjunct to Healing. 1-4. 1999. : Accessed 10/19/01

Anonymous. "The doctor is unwell." Lancet 342 : (1993) 1249-1250.

Dohan, Matthew C. "Reflections on a bone marrow transplant." Annals of Internal Medicine 132 (2000): 589-590.

Gray, Alan G. Doctors are never ill... Are they? 1-2. 1999. Accessed 10/19/01

---. The problem of pain. 1-2. 1999. Accessed 10/19/01

---. Thoughts on Radiotherapy. 1-2 1999. Accessed 10/19/01

---. Thoughts on a Tracheostomy. 1-2. 1999. Accessed 10/19/01

---. Thoughts on Oesophageal Speech. 1-2. 1999. Accessed 10/19/01

---. Thoughts on being an Ex-GP. 1-2. 1999. Accessed 10/19/01

---. Final Thoughts... for the Time Being. 1-2. 1999. Accessed 10/19/01

---. E-mail to the author. 10-30-2001.

Hawkins, Anne H. Reconstructing Illness: Studies in Pathography. 2nd ed. West Lafayette, Indiana: Purdue University Press, 1999.

Keoun, Bradley. "Doctors with cancer struggle to define split role." Journal of the National Cancer Institute 88 (1996) : 1616-17.

Mandell, Harvey and Spiro, Howard, eds. When Doctors Get Sick New York: Plenum, 1987.

Wray R.Chris. "From the other side of the bed sheets: The physician as patient."

Plastic and Reconstructive Surgery 97 (1996) : 1466-1468.

Yung, Richard. "Coping with Cancer: A doctor as patient (part 1)." Singapore Medical Association News 33.3 (2001) : 7-8.

---. "Coping with Cancer: A doctor as patient (part 2)." Singapore Medical Association News 33.4 (2001) : 12-13

 


 

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