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AIDS and the Soul of the Physician If we know little about ourselves, and are scared of our own shadows, we will know nothing of others. N. Michael Murphy, MD We were not prepared to treat patients with AIDS. If medical school and residencies were supposed to give us a foundation for what lay ahead in practice, they failed, and we were not prepared. In fact, we are still ill-equipped to work with any far-advanced illness when it is clear, or even not so clear, that the patient is dying.
I was unprepared, seventeen years ago, to work in a hospice. A handful of years in general practice and nearly two decades in psychiatry were no preparation for the confusion that surrounds dying. When technology has run its course, we run out of answers. We are faced with helplessness and a clear vision of impermanence: two experiences that inspire the greatest discomfort in physicians whose technological training implies that there is always something that can be done, and that they should never say die. I remember one of my first AIDS patients. Bob was not much younger than I, emaciated beyond belief with skin of a gray-blue hue that I had never seen before. He was not in pain, but was simply lying in bed with the life fading from his body before our eyes. His lover was in almost constant attendance, witnessing this breathtaking sunset. A volunteer received Bob's permission to paint his portrait. This extraordinary work of art captured the grayness and emaciation, but as background. What emerged to captivate the viewer was an amalgam of helplessness, impermanence, and compassion, and a peaceful acceptance that would not have been there, I imagined, had he not been in a safe place with his lover Jim as guide and communicator. And Jim, and so many more like him, loving, attentive, humorous, the best of caregivers, were wrapped up in dramatic previews of their own dying. For all this and more, I was not prepared. A medical student spending a couple of months working with me in the hospice made a remark about the need for physicians and others to develop an immunity to survive the constant confrontation with death that occurs in hospices, emergency rooms, and intensive care units, especially if they are working with AIDS. Thinking about this conversation and many like it brought me face to face with a paradox: that bodily survival apparently depends, among other things, on an intact, functioning, immune system; AIDS is the modern model of the breakdown of bodily immunity. The paradox is that survival of soul depends on there being no immunity built up from the repeated tragedies with which we are confronted. If we lose a lover and wall ourselves off, saying "never again," or if we lose a patient with whom we were close and had the best of communication, and determine never to get so close with others, then we are in danger of paralysis of the soul. Soul is not a concept that has much of a place in medicine. We are as uncomfortable with the idea as we are with AIDS, and suggest that it belongs to the realm of religion or perhaps the arts, but is of little concern to the trained physician. This is odd, because the dictionary suggests that the soul is the animating or vital force in mankind. We purport to be interested in vital signs, yet have not been prepared to take heed of the vital force in life: that which I saw draining away in Bob as he was dying. Soul is the vital force in men and women. It is the center of feelings and imagination. If we suppress feelings or act as if the imagination is frivolous and should give way to the rational, functional imperatives of science, then we mute the soul. Soul is the vital force in everything. It is there in the sunset or the forest. It exudes from many buildings, especially old ones which were not designed rationally and functionally with cost as the ultimate arbiter. These soulful buildings nudge our feelings so that we feel warm and at home, or inspired or moved in some way. Hospitals have very little soul. Built rationally and functionally in the service of technology, the soul has been cost-cut out of them. Hospitals are not places where the vital force of life will be nurtured, and they are certainly not places in which to die, even though that is the fate of most of us. It would be possible to invite soul into a hospital. But furniture, brochures, and new paint will not do it. These cosmetics do little to hide the loveless technological machine underneath. Hospitals will change only if physicians and administrators invite soulfulness into themselves. When the imbalance between the science and the art of medicine is redressed, then soul will enter in. We were not prepared to behave soulfully in medical school, and most of our teachers then, and later, when we were residents, were poor models for care of the soul. We entered medicine with soul, interested in communicating and connecting, interested in listening to stories and hearing about families, but somehow, with the imperatives of technology, and the need to stuff ourselves with facts and understand everything, we lost the art. Perhaps AIDS will help us revive the vital force of life. Maybe its gift to us will be the recovery of soul and the renewal of the art of medicine which chronicles its soulfulness. For AIDS is as much a challenge to our imagination and feelings as it is to our technical skills. The imagination sees AIDS as the modern plague, a terrifying thing that must not be approached. It inspires all our prejudices--against gay men, drug users, prison populations, people of color--and our judgmentalism is not far behind. We imagine that these groups brought illness on themselves or got what they deserved, as opposed to the innocent victims--hemophiliacs, spouses, and children--who did not deserve this fate. We can say that as professionals we are above these issues, and that we would not allow them to interfere with the care we provide. This is possibly true if we will suspend soul and be machine-like, but if we are to communicate, touch, be touched, weep, laugh, be confused, and also act as guide, friend, and witness through this ordeal, we must face our imagination and our feelings, and for this we were not prepared. There is no immunity when approaching AIDS with soul, and the only way we can do it is to talk: with each other and with our patients and their lovers. They are our teachers. The recent SUPPORT study 1 is a very vivid example of our unpreparedness. This investigation of the care of several thousand hospitalized patients suffering from a range of life--threatening illness disclosed the poorest of communication between physicians and the patients and families under their care. There was little talk about day-to-day matters, planning beyond the moment, wishes with regard to resuscitation and other treatment issues--and we might also assume that they failed to communicate about death itself, because this is so much more difficult to talk about.The study showed not only a failure of communication. Pain control was also poorly managed and technology overused. Perhaps the most striking finding in this powerful report was that physicians and surviving relatives, when interviewed later, were generally satisfied with their treatment of the one who died. In other words, they were not even aware of the vital need to connect with each other and assumed that technology, regardless of cost, pursued to the bitter end, is the best that is possible and all that needs to be done. And of course the patient died unheard, without true healing. If we are to be prepared, and take care of the soul, here are a few ideas for physicians and others who are caregivers for any patient and family involved with AIDS or any other life-threatening illness. 1. Preparation and training. We should have a clear understanding of our attitudes and feelings towards our own death and our own grief. A few readings, lectures, and an intellectual understanding are not enough. I have been leading "soul-searching" groups in Europe and the United States for several years. Workshops of this kind are an excellent preparation for caregivers and should be a requirement for all medical students. Participants are led through a detailed guided meditation about their own dying and death. They imagine or reimagine the deaths of those near and dear, and also imagine a meeting of the important people in their lives, during which they have the opportunity to speak to each one in turn. These and other exercises make dying a little more familiar and personal, give a clear understanding of the importance of a "Family Meeting," alert us to the possibilities for healing at this time, and introduce participants to three roles that are fundamental to patienthood and good caregiving:
2. Continuing care for the soul.
We should understand that to have continuing education for care of the soul is just as important as attending technical meetings to update our knowledge about tests, procedures and treatment. Some examples of soul care include:
SUPPORT GROUPS: Preferably groups will include all caregivers, but membership in some groups might be exclusively for practicing physicians. Expressing vulnerability with our peers has always been deadly difficult, yet without it the art of medicine will be impoverished. The group would be a forum to discuss all feelings inspired by AIDS or any other life-threatening illness. The dying of patients our own age or that of parents and grandparents always provokes feelings, and this would be a forum in which they could be discussed.
ROUNDS: Traditionally, we have technically-oriented patient reviews and meetings. These new rounds would concentrate on the effect on the staff and the family of a patient's dying, and difficulties in Family Meetings.
These meetings can be daunting, and the fear of explosive expressions of feelings is what usually prevents them from happening. But having facilitated thousands of such gatherings, I know that they are powerful occasions for the expression of love and forgiveness. While there is a greater or lesser degree of resolution in most Family Meetings, that is not always the way. I remember the wife of a hemophiliac with AIDS who refused to let go of her fury towards both her husband and herself. Medical staff need to address, not ignore, the powerful feelings these meetings can unearth.
3. Soulful caregiving.
If we will take care of ourselves and learn to be, as well as to do, we will revive the art of medicine. Storytelling; being a loving guide and catalyst to our patient as he or she expresses the fears, worries, and imaginings from both the dark and light aspects of the soul; being an impeccable witness; becoming an exponent for the healing powers of the Family Meeting; being an expert in the technical aspects of treatment while knowing when to pull back. All these are part of soulful medicine.
And so are rituals, the expression and celebration of soul. In forgetting that medicine is a sacred art, we have ceased to honor the life and death of a patient by having a short ritual when she dies. We need to use the stethoscope and pronounce a death, but we also need to pause with families and colleagues, tell a few stories, shed a tear, laugh, and light a candle. Since we have no ritual of this kind but simply cover up the body and remove it to the morgue, there is no ending to death. If we paused for a moment, all would be said and done, and there would be less burn out.
We need not wait till death to have a celebration. We could pause with patient and family and thank them for allowing us the privilege of being involved as caregivers, and both offer and receive a blessing. We are so afraid of being misunderstood or of trespassing in the realm of religion that we often miss out on the giving and receiving of love which is the essential element of care. Renewing the art in these ways is to replenish ourselves, give more appropriate care, and provide an antidote to industrial medicine which, when unchecked, deadens the soul.
Reference
1. SUPPORT investigators. A controlled trial to improve care for seriously ill hospitalized patients. JAMA 274:20 (November 22-29, 1995) |
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