The Yale Journal for Humanities in Medicine
When Doctors Get Sick: A Reprise
Judith A. Brice, M.D.
How to begin? And where to begin telling the rest of my saga. To keep you, my reader out of suspense, I will share the end of the story first: the bottom line is that I have not had anywhere near the overwhelming, terrible, and excruciating experiences that I endured in 1982. This, despite the fact that what I thought was cured Ulcerative Colitis has in fact turned out to be Crohns disease and the repercussions of the disease have necessitated two more surgical procedures to cut out inflamed bowel. And this, too, despite the fact that after the second surgery I went home on TPN, hyperalimentation.
Nonetheless, I have had luck on my side and so far I have not been nearly as sick as I was before, and have not come nearly as close to losing my life as I did in 1982. While I think that in part I can credit this to having had much better doctors caring for me, I feel I can also credit it to having learned that I am my own best advocate. I will explain:
In 1982 the severity of my signs and symptoms were underestimated and discounted; for the most part they were ascribed to what were assumed to be my psychological Achilles heel (a direct quote from my 1982 surgeon.) As a consequence, I ended up with a total bowel obstruction before suddenly the nurses and doctors realized that my moaning and complaints did indeed need to be taken seriously. That experience of having been severely misdiagnosed and mistreated led to much soul-searching about how to handle things differently if I were ever in the same situation again. It is now clear to me that I suffered from a Post Traumatic Stress Disorder, as even when I would ponder this question I would get teary and weepy.
As I began to be able to think more clearly, I realized that very often my assessments of myself and ofmy knowledge of the directions that treatment had to follow were as good as, if not better than, that of the doctor or nurse caring for me. This dawning realization led me to the conclusion that I needed to integrate for myself a number of psychological changes to ensure that neither I nor my family got lost to a misdiagnosis or a lackadaisical attitude. Perspicacity, vigilance, thoughtful judgement incorporating all of my medical knowledge were clearly crucial to avoid the experiences that had nearly eradicated my existence. But more important, I realized that I needed to adopt a proactive, sometimes definitively assertive and even aggressive attitude to combat carelessness, understaffing, misconceptions or downright prejudices on the part of my or my familys caretakers.
Since my 1982 experiences, I have had several experiences with my own and my familys health where suddenly without notice, I had to martial these qualities within myself. At times I was able to, and yet at other times I have faltered, in part because these characteristics do not come naturally to me, especially when I am scared or in pain. I find that I need to re-learn many of the tasks that I thought I had learned and incorporated from my previous experiences. Salient among these are the abilities to be vigilant and proactive. In other words, I am constantly relearning and reworking this difficult task of examining whether the person I am trusting really knows me or my family member better than I do and deserves my trust.
Unfortunately, as managed care becomes more prevalent, the risk of disaster to any patient has risen astronomically, as doctors and nurses have less time to get to know their patients, and often are overwhelmed and overworked by the many demands on their time. On top of this, a managed care mentality has set in: where in the past a doctor may have approached a patient with comprehensive caution, ordering a test to rule out an unlikely diagnosis, now the doctor may eschew that test as he/she has learned not to be so cautious in the face of the managed care organizations reluctance to comply with his/her suggestions.
I believe that the trauma of almost dying from medical errors and unnecessary iatrogenic complications was the greatest hurdle to overcome. After the initial phases of recuperation from the colectomy and then the hip surgery, I was able to return to work and except for the subsequent phase of surgery and recuperation I have been able to work non-stop since then. Tuning in to my patients anger and disappointment in me was difficult for me, as I was still quite vulnerable from the psychic trauma and, I believe, somewhat impervious to their anger at me. My own psychotherapy, and some excellent ongoing supervision which I purchased were invaluable in helping me deal with this aspect of patient care.
The psychological trauma lingered, though, in fact, even longer than the avascular necrosis that set in to both hips. In regards to the latter, it took about four years for me to be walking normally again, and probabl y a couple of more years before I had full strength and close to a normal range of motion. Not a soul ever mentioned physical therapy; it was only after a full recovery that I realized that physical therapy would have been invaluable in preventing some of the problems I developed in my feet and legs from lack of exercise. Nonetheless, I now relish all the more my full and complete recovery. (If I am generous, I will call myself an intermediate skier; although truth be told, I enjoy skiing shooshing down the green slopes better!). What I had and have much more trouble accepting was the lack of adequate and good care.
I like to think that this has impacted my care of patients to the good. I certainly have been able to help them seek out and keep excellent doctors for themselves. And more than several times, by virtue of my dogged, tenacious, vigilant attitude and thoughtful judgement, I have helped them stay out of serious harms way. Despite being a psychiatrist, I have headed off serious cellutis in one patient, ensured prompt treatment for thrombophlebitis in another patient and on many other occasions helped them and my family avoid serious calamity, all because I took the time to listen and to think more clearly and more thoroughly than the primary (probably overworked) physician did.
One of the more difficult aspects of living with an ileostomy has been adjusting to the disfiguring change in my body. Hand in hand with this adjustment has been the need to keep a considerable amount of privacy, until I could accept the changes and feel comfortable enough about myself to reveal these changes to others. The adjustment was slow, and in fact, I feel that I will be adapting to a new body image and my concern about how others will accept me (with their knowledge of my illness and my disfiguring change) for the rest of my life. For the majority of the time, I am consciously oblivious to this issue, although I have more than a strong inkling that it continues to reside in my unconscious. Thus, while, I have grown used to me qua me for a long time, it is even harder when I do not know of others responses.
This awareness of how important privacy has been to me in accepting and dealing with my illness and deformity has led me to be especially concerned around the ravages that managed care has wreaked in the confidentiality now afforded patients by most of their health plans. It is very unsettling and, in fact enraging to me to think that I and my patients, alike, may be in the presence of a stranger, who by virtue of working in some capacity for a health organization affiliated with our insurance plans, may be privy to our deepest secrets.
Perhaps because of my particular sensitivity to this issue, and my knowledge of how devastating it can be to have ones secrets exposed to anyone, anywhere, I have felt empowered to stand up to the mental health arm of the insurance arm sponsored by the University of Pittsburgh and refuse to let them review my records even when the consequence for this was that I would not be recredentialed. (They subsequently backed down when I had a letter to the editor about this published in the New York Times.)
This has become an especially important issue to me, especially because of my practice in psychiatry where trust and confidentiality are absolutely interdependent. Without the latter the former cannot occur, and without trust there is no meaningful therapeutic dialogue.
One other major impact of my illness has been the direction of my professional life in general. I have moved in the direction of working with many people who are struggling to continue their lives in the presence of sometimes devastating illness or disability in themselves or in their family members. Currently I divide my practice between an outpatient private practice where many of my patients have had very traumatic experiences with illness, and consultation to a small rehabilitation hospital for children. There I see children who are in the throes of recuperation from a physical illness or severely handicapping disability.
Also admitted to this hospital are children who must come to terms with a debilitating chronic illness or disability. I also am the psychiatric treatment team leader for a very specialized unit for adults and children who must live under the shadow of a very difficult syndrome, Prader Willi Syndrome, a syndrome that leaves patients unable to resist the compulsion to seek out and consume excessive amounts of food .For good reason, this syndrome has devastating consequences to families and their children, who end up morbidly obese, enraged because they cannot get enough food to satisfy their insatiable hunger, and who often have behavioral problems associated with the syndrome.
Here, too, I have witnessed the unfortunate consequences of managed care. Where in the past the hospital was able to support very fine social workers who could work closely with the families and help me to understand the psychological meanings of the illnesses to the patients and their families, I must now rely on the input from nursing staff, many of whom have much less skill in working psychotherapeutically with the patients and their families.
My own realization of how complex ones psychological reaction to illness and disability can be and how disorienting ones familys reaction to illness can be, has given me an all too exquisite awareness of how important it is to work with these aspects of illness as well. My sensitivity has been heightened by my continuing struggle with chronic, only partially treatable, migraine headaches. From my experiences with all three of the illnesses, (Crohns disease, avascular necrosis and chronic, severe, migraine headaches) I am acutely aware of the disservice we may be providing our patients if we do not fully work with the complex psychological issues extant in them in adjusting to and/or recovering from illness. Such issues have ripple effects on the families, and may backfire if not adequately addressed. Without having endured my own illness within the context of my own family, I do not think that I would have the sensitivity to these issues that I do today.
Overall, I would (probably,
well, almost) not recommend my illnesses to my
worst enemy. Did I benefit from the experiences? The
answer is resoundingly, "yes." Am I a
better doctor and human being for having lived through
this? The answer is resoundingly, "yes." Would
I have endured them if I had had the choice? The answer
is resoundingly, "no."
Published: May 8, 2000