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Palliative Care Perspectives : Preface

"The purpose of today's training is to defeat yesterday's understanding." -- Miyamoto Musashi, Japanese sword master

I never set out to be a palliative care physician. I had tried my hand at being an administrator, but it did not work out. I quit my job coordinating outpatient clinics and began looking for something else to do. As luck would have it, a job just then opened up in a nursing home that had a small inpatient hospice unit. That seemed interesting, I thought, rather dispassionately. I had no idea how radically my life was about to change.

My new job was to begin in January 1994. In December I was scheduled to attend on an academic medical service. I had attended many times before and considered myself an old hand at the job. The work of attending requires a delicate balance. Attending physicians are supposed to know what is going on with the patients on the team and yet leave enough "space" for resident physicians to learn from doing. Done well, attending means providing guidance, wisdom, and humor-setting a tone for the team that is serious without being heavy. Done poorly, it means doing time - a series of canned talks for the team, card-flipping with the residents as to how Mr. or Mrs. Smith is doing, and writing "see and agree" notes that meet the bare minimum requirement for supervision.

As I began my familiar work of attending that month, I was thinking ahead to my future job in hospice. I had been taught virtually nothing about end-of-life care in medical school or residency. Of course, I had cared for my share of dying patients, pronounced a reasonable number of people dead, and treated most common symptoms in some fashion. However, as I faced the prospect of doing hospice, I came to realize how ill-prepared I really was, so I read a little bit during that month. I also tried to see my patients, many of whom happened to be dying, with new "hospice eyes."

I remember one patient in particular. She was a woman with advanced metastatic breast cancer. The resident told me she was in great pain both physically and emotionally. She was on a large dose of morphine, but that did not seem to take care of the problem. She had pneumonia, which was being treated. No one was quite sure what, but there was some issue with her son. We would do what we could. As soon as the antibiotics were finished, she was scheduled to be transferred out - to a nursing home or hospice I cannot remember.

How sad, I thought, as I headed out on my rounds to meet the patients. I imagined the note I would write, "A 74 y.o. woman with metastatic cancer and pneumonia. Patient seen and chart reviewed. Agree with housestaff work-up and plans." I had done it many times before. This time, I paused. This was the kind of patient I would soon be caring for on a regular basis. Perhaps it would be interesting to just sit and talk with her for a while. Perhaps I could learn something about what I was to encounter as a hospice physician.

I approached her, introduced myself, and, with some effort, found a seat. This unusual behavior evoked a scowl from Mrs. B. "What could you want," she seemed to ask. To my surprise I thought to myself, "I'm not sure." I was so used to going to the bedside with a clear reason, an agenda, and now I was not sure I had one. It was a scary but rather liberating feeling to approach a patient this way. "I thought we might just talk. I heard from Dr. S. about your situation. It seems like you have been having a hard time." She slowly began to open up. At first she talked about how much her back hurt. Her story then began moving to her relationship with her son. She was very attached to him and worried about how he would manage without her. The depth of her psychic pain seemed to draw in the very light from the room. This was getting heavy and I wanted to back off. Just then, a ray of sunlight came through the window, highlighting a bouquet of flowers on the bed stand behind Mrs. B. Seeing this, I commented on how beautiful they were. Mrs. B choked and said that they were from her son. Then she literally wailed, "If only I could see them." Suddenly, it became clear. Flowers delivered per routine to a hospital patient had been placed, without thinking, in the one place Mrs. B. could never look. Her back pain prevented her from turning toward this precious gift, just as her illness kept her from her son - both out of sight but never out of mind. I rose and moved the flowers to a spot where she could see them. I did not know it at the time, but in retrospect I believe that was the first time I entered the world of hospice.

My memory of the first several months working at my new job in the nursing home is a blur. I had visited a nursing home once or twice before in my life. Overnight I had inherited 75 patients with advanced chronic illness. I was completely unprepared. My friends now tell me they thought I was depressed or, more likely, disgusted by what I saw. I was neither. I was terrified. In arrogance I thought I was a reasonably well-trained internist and that my prior experience would more than suffice. After all, I had been a chief resident at a top flight residency program and had run an intensive care unit, an emergency room, and a general medical clinic. These patients were not even acutely ill, yet I was truly, completely unprepared. Yes, I knew how to prescribe many necessary medicines, but this was such a small part of what these patients needed. Each was struggling in his or her own way with how, simply, to get through the day. Pain, constipation, confusion, diaper rash, immobility, memory loss, depression, and boredom - these and a host of other afflictions beset them. If called upon to kill a wayward pneumococcus with an antibiotic, I was as good as any physician, but in addressing the various miseries associated with chronic illness, I was grossly incompetent.

In the hospital, when I was out of my league it was easy to get a consult. Abnormal antimitochondrial antibody? No problem - a rheumatology consult would explain it all. However, here in the nursing home we were largely on our own. We could send patients to clinic, usually by ambulance, if necessary. An appointment might take weeks or months to get. For the very frail or confused, such adventures were a risky business. Patients could get lost or admitted before you knew it. Very few physicians were willing to make a "house call" to the nursing home. For the most part we, staff and patients, were on our own.

Thinking back, I am extremely grateful to everyone for their patience with me. They say I was often seen walking down the hall hunched over with a frown, only to disappear for long periods into my office. "Depressed? Disgusted? He can't take it. He won't last long," they must have thought. In fact, I was reading like crazy in my office. I bought texts on geriatrics and what little was available on hospice and palliative care. Mercifully, not too many months before beginning this work, the Oxford Textbook of Palliative Medicine had been published. This book was a godsend for me, orders of magnitude better than anything else available. From this book I got a sense of what was really possible. Fear began to turn to excitement. In fact, there was so much that could be done! As excitement grew, so did anger. Why had I not been exposed to any of this before? I had been trained in some of the best programs in the United States, yet here was a major body of knowledge and skills that was not even on the radar screen of those programs.

I found, after my initial terror, that a whole new world of healing had opened up for me. I was particularly drawn to the then small seven-bed hospice I had inherited that was tucked away in the back corner of the nursing home. Quietly and unassumingly, a dedicated group of individuals had been caring for dying patients for well over 10 years prior to my arrival. If I found excitement (and anger) in my work in the nursing home, in hospice I found my passion. Here, the human condition was boiled down to its essential ingredients. Pain, suffering, love, joy, meaning, and despair all appeared in purified forms, conjured upon before the great mirror of death. The nakedness of these human truths demanded a sincere response. Here was real work to do.

When I attended my first hospice meeting as the hospice physician, the team was tightly gathered around a conference table. I sat outside the circle. The nurses, social workers, volunteers, and others actively discussed each patient. I was not expected to participate. They were not opposed, really, it just had never been done. Having a physician was a legal necessity for signing orders. Little else was expected. The real work (and magic) was to be performed by others. Hospice staff seemed pleasantly surprised when I displayed more than a passing interest in the meeting.

As my passion for hospice and palliative care grew, so did an understanding that I had received a great gift. I had "fallen" willy-nilly into an amazing world where, incredibly, I was free to be a healer. This new work required energy and dedication, yet I found joy in being of some help to others. However much I was able to give, I found I received that much more. Determination grew in me to share this world and what I was learning with others. I suspected I was not the only physician frustrated by modern medicine who wanted to find a different way to help. God knows, there was enough suffering to go around, and so, ill prepared as I was, I began to teach.

First, we established a rotation for geriatric fellows in the nursing home. Incredibly, until then our geriatric fellows spent no time in any nursing homes on the general belief that nursing home patients were beyond hope. Then a clerkship was started for medical students. We explored having interns rotate through the nursing home and hospice. At first, there was a concern on the part of the training program that any such rotation would be very unpopular and "hurt us in the match" (the process by which residency programs choose graduating medical students). We were allowed to start the rotation on a trial basis. It was this comment about such a rotation being a potential detriment to the residency that led me to publish an article in the Journal of Palliative Medicine that documented the impact of the rotation, which was extremely popular.1 Now, years later, our program has expanded to 25 beds and become a separate unit in the main hospital building associated with an active consultation team, clinic, and home care program. We have developed a fellowship program for physicians, nurses, and psychologists. The good news is that physicians and other clinicians do want to be of help. Not everybody wants to do advanced training and specialize in palliative care, which is, of course, fine; we need all sorts of healers, and most everybody wants to help. Most trainees are very grateful for the opportunity to increase their skills and, frankly, to compensate for their general lack of training in palliative care elsewhere. Based on this experience, I am encouraged that if we provide the right opportunities, clinicians will want to learn palliative care. To paraphrase the movie Field of Dreams, "If we build it, they will come."

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.