My experiences as a patient with cancer have helped me understand the complexity of illness in ways that I could not fully appreciate as a physician trying to be attentive to his patients. My experiences with managed care helped me appreciate that our system of healthcare finance fundamentally misconstrues the nature of illness and what the healthcare system should be trying to accomplish. As a patient with cancer, I was thankful that there was such a sophisticated technology as Bone Marrow Transplant, but it is a grim technology. Without the attentive care of the Duke physicians and nurses and the love and support of my friends and family, it would have been unbearable. I consider this the spiritual side of care, not necessarily in a supernatural sense, but certainly in a transcendent sense.
In calling for a "new medical model" I am suggesting a model than encompasses such spirituality, such transcendence. George Engel identified the need for "a new medical model" in 1977. The model he proposed was a bio-psycho-social model intended to expand the bio-reductionistic model then in force. The bio-reductionistic model held that everything you need to know about medicine could be explained by reducing illness to its biological components. That model was extremely successful up to a point. There had been many advances in biomedicine that supported the treat-the-body-as a machine approach. Even organs could be replaced intact like the worn out parts of an old automobile.
Now almost a quarter of a century after the publication of Engel's article, we appreciate that the biological model did not explain enough. We realize how mind (and stress) affect the body-machine and how so many of the illnesses people suffer stem from behavioral causes with physiological correlates.
In defense of Engel's originality and insight, I think it could be said that spirituality is implicit in his consideration of the psycho-social. But it must also be recognized that the discussion of spirituality in modern Western thought is strained and uncomfortable. I think it could also be said that a failure to distinguish the spiritual from the religious has impeded a broader consideration of the spiritual.
In opening up the possibility of a conversation about the role of spirituality in health care, I am aware that we would need to consider everything from the array of organized religions to the most unique forms of New Age individualism. And that is precisely the point. Each patient, each person comes to medicine with their own unique experience and outlook and needs. And they may find their own unique path to healing. The doctor and healthcare team do not need to share the same experience, but they need to understand the uniqueness of each person's psycho-social and spiritual needs.
Spiritual reflections were very much part of my experience of the Bone Marrow Transplant. Getting well was a consuming goal and the spirit of determination carried the day, day after day. This was one aspect of the treatment that I did not feel Duke handled particularly well. Duke University was founded with the motto "Eruditio et religio", knowledge and religion. There are many people at Duke interested in religion and spirituality and their role in medicine. However any explicit discussion of spirituality was left to a wandering chaplain, whose role was ill-defined, and in my experience, intrusive. Every now and then he would stroll into the clinic and make the rounds asking questions and trying to engage in conversation. It is possible that those conversations could have led to spiritual concerns, but they never did. It was never clear to me if he was offering comfort, psychological counseling or looking for souls to save. It wasn't clear why he was there.
Robert Coles, the child psychiatrist who writes so much about the lives of children, tells the story about one time his mother was in the hospital, and a chaplain visited her. She became angry with him about something, and he reflected that she was in the anger stage. As I recall the story this interpretation only made her angrier. She wanted someone to pray with her and to read the Bible verses she found so comforting. This would certainly be an appropriate role for a chaplain.
It strikes me as a little bit ironical that chaplains are often the ones that are called upon to do psychological counseling and that psychologists are offering spiritual affirmations and guided imagery. But I take such confusion merely as an indication that the role of spirituality in medicine has not been well thought out.
Indeed in my experience the people I found most spiritual were the doctors and nurses though nothing they did might be identified in a formally religious sense. Their presence and their attentive concern again and again transcended the mundane concern of chemicals and lab values. This could be considered integration of the spiritual with the bio-psycho-social at its best.
My own reflections on spirituality while undergoing cancer treatment led me to recall my times in Nepal where spirituality seemed so natural and unstrained. I was also reminded of our own Native American spirituality, which shares with Nepali spirituality a central focus on harmony with the environment and finding spirit in the world around.
Hopi religion is focused on the weather. For the Navajo the focus is on health and healing rituals. Both their religions focus on "ultimate concerns" as theologian Paul Tillich suggested religions are likely to do. Each month each Hopi village has a ceremony which is basically a supplication to the katchina gods for rain.
Each month there is a unique costume, which is the same from village to village. The Hemis costume is adorned with clouds and weather symbols. Tall, stacked headdress represent the cumulus clouds which bring rain. These are painted with pictures of clouds with lightning and rain below them. Clouds are painted on the chests of the men taking part in the dance. Leather loin cloths are painted with corn stalks. They carry curved sticks like lightning. They dance to drums, the always important drums. The drums make a noise like thunder. They rub deer clavicles against notched sticks, which reverberate over hollow gourds. This also sounds like thunder. The men retreat to underground ceremonial rooms called "kivas" where they smoke pipes. I was not allowed to enter the kiva, the most sacred of places. The smoke from the kiva rises to the sky, where the katchinas in the San Francisco Peaks can see which village is making the supplication, and they send the clouds to that village. The clouds march across the desert like soldiers in formation. One after another, all in a row. Atmospheric physicists call these "cloud streets". They dump their rain on the village which has asked for it, to help grow the corn.
My scientific colleagues at the museum pooh-poohed my accounts. They said the cloud streets were caused by atmospheric currents called the Bermuda current that brought moisture from the Pacific Ocean, and they always occurred at that time of the year. What the Bermuda current was doing in the Pacific and in the American Southwest, I never got straight. I simply took an empirical approach. I pointed out to my friends that every rain dance I attended was rained out, so draw your own conclusions.
For the Hopi there is the expectation that the ritual, repetitive actions will bring the rain on which they are so dependent. The ritual is constructed in such a way that everything that is done is done as a reminder of the purpose for which it is done, namely to get the attention of the katchina gods. The Hopi believe that if everyone stays focused, the ritual will be successful, but if it fails, it is because someone allowed their mind to wander. Thus everything in the ritual is designed to serve as a reminder, weather symbols, images of clouds, corn stalks, sounds like thunder. And the community must come together in a life of purity and wholeness or holiness. If someone is preoccupied with a marital infidelity, for example, then everyone must suffer. The community must work together to address the needs of all its members.
The Danish philosopher Soren Kierkegaard explained religious ritual in a similar fashion. He said "Purity of heart is to will one thing." Christian ritual is focused on the ultimate concern of salvation and eternal life. All of the symbols point to this focus, especially the cross on which Jesus was sacrificed. Purity of heart is to will one thing. Life triumphing over death.
My cancer ritual was not unlike this. Each day we went through the ritual of blood counts and treatments. Nurses changed bandages, and doctors reviewed the progress. Each day the staff offered hope, and the community of friends gathered round to keep the focus on healing, wellness and recovery and return to their midst.
Navajo rituals also focus on health, the return to heath from illness. Like the Hopi they live in a harsh arid environment and move in small groups with their sheep. A family may have a mud or perhaps log or even now cider block hut called a hogan, but much of the year may be spent in tents. Navajo crafts, pots, baskets, blankets bear symbols from the environment shared with the Hopi, clouds, lightning, corn stalks, animals. One of the most striking of the Navajo crafts is the sand painting. Grains of colored sand are skillfully sifted through thumb and forefinger to create elaborate "paintings" of corn, people, animals, spirits, the four corners of the world, which predate and should not be confused with the Four Corners region where the Navajo Reservation is located at the intersection of Arizona, New Mexico, Colorado, and Utah. A Navajo sand painting takes days to create. Ultimately they may be four or five feet square. I was allowed to "paint" a feather on one. I was very proud of my contribution. I don't think it had any ritual significance.
Typically a sand painting is used in a healing ritual. When someone is sick, the medicine man, maybe with the help of male relatives, may construct an elaborate sand painting on which the sick person sits while the shaman dances around, drums playing of course, and chants a ritual chant. While the painting may take a long time to construct, its forms are precarious. A slight breeze, a slight motion of the hand return the sand to a random mixture of grains. Like life itself it is ephemeral. Chaos is the natural state of the universe out of which we temporarily carve a little order, but the second law of thermodynamics always wins. Entropy in the universe always increases. Chaos and disorder reign.
Navajo healers now regularly coexist with Western healers. Nothing in the healing rituals precludes the use of antibiotics or other medications. Western medicine may be considered an alternative medicine or a complementary medicine in this setting.
I remember one Sunday morning on the Navajo reservation. I was invited to a church service in Chinle, Arizona near the beautiful Canyon de Chelly (pronounced Canyon d'Shay). It was a Presbyterian Church, I remember. Elegant Navajo men and women were dressed in colorful clothes and many wore silver and turquoise jewelry. The sermon was more like an anthropology lecture. The minister detailed the inferiority of "animism", the belief that animals have spirits, a central tenet of the Navajo world-view. The Navajo present did not seem uncomfortable with his explications, but I was. He said nothing about his own faith, his own beliefs, or the power of his own spirit or spirituality. The discussion was entirely intellectual and critical. He seemed oblivious to the presence of a living spirit around him and intent on replacing a viable spirituality with a spiritless religion. He was like the chaplain we encountered on the cancer ward at Duke.
I would call this a negative spiritual moment. It was not just a-spiritual. It was dis-spiriting. By contrast, I would like to share a positive spiritual moment from my own treatment. The moment that impresses me most vividly occurred one morning in the Johnson City Medical Center. I had completed the low dose rounds of chemotherapy and was facing the full effect of the complications of the steroids. I had been hospitalized at what we call here, simply "the Medical Center" for a deep vein thrombosis. My own psychiatry resident and medical student were in the room with me, and we were discussing our psychiatry patients on the floor below, whom the resident and medical student would soon see, but I would not be allowed to leave the bed. I was working as much as I could, but I had reached the limits. I would have to call in a colleague to cover for me.
At that point medicine rounds collided with psychiatry rounds. My own internist from the University Physicians Practice Group entered the room with her residents and medical students and the oncology fellow. There were eleven physicians in the room, counting the student doctors, but not counting myself. They formed a circle around me, and as they (we) sorted out the medicines and the treatment plan, their good wishes for me were abundantly evident. Scott Guthrie, sat beside me on the bed and put his hand on mine. Scott was someone with whom I often worked out and water skied. Scott was next up in the rotation. He would pick me up (in more ways than one). I would become his patient.
This was a positive spiritual moment. It was a moment that was uplifting and inspirational. Shortly after the official rounds, Steve Loyd, doing an accelerated residency (internship during the forth year of medical school), circled back to my room. He told me his son Heath was praying for me every night. It was a powerful image, this articulate little four-year-old boy, wearing the flannel Superman pajamas I had seen him wear when I had been at their house near the end of the day, down on his knees beside the bed, praying out loud for my health. Once when the President was making a speech on television-- not one of the infamous speeches, but a speech that a four-year-old could listen to--Steve asked his son if he knew who that was? Heath said sincerely, "Is it Dr. Dyer?" My own prayers, when I prayed, were more likely to be silent meditations with the Great Spirit. Other friends, grown ups too, shared with me that they prayed for me out loud on their knees beside the bed at the end of the day. Purity of heart is to will one thing. I had to get better.
During this period, Dr. Loyd decided to become an oncologist. I must share with you that I found this particularly inspiring. It was moments such as this that I lived for as a medical educator when young physicians find their calling and dedicate themselves to doing everything that might be required of them and more. There would be no question that a physician like Steve Loyd would prepare himself to offer superb care to cancer patients like myself. He would prepare himself to address not only biological and psycho-social aspects of illness, but spiritual concerns as well. You could take it on faith.
It was during this period that my blood counts returned to normal. The serum protein electrophoresis returned to normal. The beta-2-microglobulin returned to normal. The bone marrow aspirates returned to normal. All the markers of multiple myeloma returned to normal. For want of any better way of describing it, I would have to say this was a miracle.