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The Man Behind the White Coat: 3 reports from Raphy Rosen

In his next installation of posts from Terence Cardinal Cooke Hospital and Medical Center, CSSR’s intern Raphy Rosen discusses the transformative power of a jacket, the difference between the physical and the spiritual questions we ask at the end of a life, and the opposing forces of family and medical culture.

2- Physician Demeanor

I observed firsthand the power of demeanor in a hospital. The medical director at this facility has a nearly magical way with his patients. He knows almost every person out of the 730 in the facility by first and last name. As the self-proclaimed “quarterback of joy”, he runs (literally) throughout the hospital encouraging patients and staff alike to continue to hope for recovery and discharge even if there is no hope to be had. He never stands next to patient’s bedside and interrogates him or her in a distant or “doctorial” way. Instead, he gently pulls up a chair, places his hand on the patient’s shoulder, stares into the patient’s fearful, forlorn eyes and has a quiet, intimate conversation. More like an old friend than a physician, he evokes a smile from everyone he talks to, even if they don’t speak a lick of English.

As effective as the director is, there is one barrier that he cannot as a physician overcome. Consider the following story:

I was given a white coat on loan in order to appear more professional during my interactions with residents. Naturally, I had proudly clipped my “Student” I.D. badge to it and walked around the facility with a slight air of self-importance. Now I felt like I fit in, like I was going to accomplish something meaningful with my research. Towards this end, I attended a religious service to appreciate the effects of religious inspiration on End Of Life patients. After some time in the sweltering chapel, I removed my coat. The patient sitting next to me looked over at me, now bereft of badge and physician’s attire and said wryly “Aha! Now you look human.” In so few words, he had noted the all-to-visible barrier that exists between doctor and patient; one is the researcher and the other the subject, one active and the other utterly helpless. By doing an action as simple as removing the coat I had crossed the line from being a distant figure to a real person, one who could talk with a resident as an equal, as a fellow human. While a professional physician does not have this luxury, I am lucky that I can seamlessly slip between employee and visitor and use that to build a different type of relationship with a patient.

Two more posts after the jump:

3- Objectifying Death

Obviously, for the individual members of a family, a death in the family is a traumatizing experience that is unlike any other. One of the necessary measures in palliative (End of Life) care is to streamline and objectify what would normally be an emotionally unique experience. Since a facility like Terence Cardinal Cooke has seen so many critically ill patients, they must create categories and classifications to describe the precise state of each of these patients. One of the forms that the hospital places in a patient’s chart describes the various steps that they will take to care for a dying patient. Among these measures are “Assist with spiritual support.  Pastoral care visits. Offer religious items i.e. □ bible, □ rosary, □ reading material.” Another line reads “Monitor for signs and symptoms of pain/discomfort i.e. □ facial grimacing, □ moaning, etc.” Undoubtedly, these are all reasonable measures for staff to take in order to care for a dying person.

However, this list may serve a dual purpose. In addition to being a reminder for staff so that all areas of a dying patient’s life are well monitored, the list also externalizes and formalizes the experience of caring for a dying person. Instead of an aide walking into a patient’s room and being hit with the full brunt of the tragedy and trauma of this individual’s demise, the aide walks in with a professional checklist of things to observe and record. The aide has formal categories by which to classify the dying. One can imagine reading one of these notes:

“Patient was verbally expressive of severe pain, and reported intense emotional distress. The narcotics were increased until the patient appeared calm.”

This is simply an objective way of writing:

“The patient was screaming in physical and emotional agony. Pain, caused by years of bedsores, cancer and pneumonia had finally overrun the pain medication and the patient begged for death. The patient also wailed to his heedless Creator that he had not been allowed to live out his days in peace and happiness and that his family had forsaken him in his time of need. He knows that after he expires there will be no one to remember or care that he had ever lived. With tears rolling silently down my cheeks I increased the patient’s medication since my heart could not bear to hear his cries anymore.”

Which of these descriptions is a better portrayal of death? Clearly the former is more efficient, succinct and practical. Yet, the latter is truer to the visceral experience of death. It is clear that the totality of caring for a terminally ill individual transcends the dry, terse wording of the medical documentation and exists solely on the plain of the emotional and the human.

All of this is very nice theoretical musings, but what is to be done to incorporate the unique elements of the personal experience of each dying patient as part of palliative care? As part of the hospice documentation, there should be included a subjective narrative section that allows for caregivers to communicate the holistic picture of this individual. This would enable others who will care for this individual, such as hospice nurses, volunteers, chaplains etc to read the intimate details of what this individual has expressed and suffered in order to give counseling and medication more effectively.

4- Subjective Cultures

One of the most controversial cases that was discussed was Earl (name fictional), an elderly Asian man who was told by his doctors that it is quite harmful for him to eat anything orally since there was a good change he might aspirate the food and develop pneumonia. The doctors insisted that he be fed only by feeding tube for his best chance of survival. Many people would abide by this medical advice even if it precludes the pleasure of normal food consumption. Earl’s family, however, was not on board and regularly brings him food to eat, even against physicians’ orders. In addition, the family gives him therapy themselves rather than sending him to the hospital’s therapy staff and ignores almost every single medical directive that they are given. And Earl looks terrific.

Whether his stability was caused by serendipitous dumb luck or is a function of the psychological pleasure of family and food, Earl’s culture was completely opposed to bending to the will of the medical community. This raises the following intriguing question:

When does the medical opinion get to predominate over subjective ethics?

In the above case, Earl is responding miraculously to medically inadvisable treatment. However, imagine a more difficult case: A non-verbal patient is actively dying from cancer and associated complications. A family member insists that the patient be fed by a stomach tube until the very end because they believe that it is immoral to let a relative die of starvation. To a physician, this is obviously medically futile since the patient will not improve and will live out his few remaining days in agony. By continuing hydration, one is simply extending the patient’s losing, painful battle. Should this be allowed? Does the family have the right to say that even extending vegetative life is worth the discomfort imposed on the patient? Adding complications to this, keeping someone alive at this level of dependency is extremely costly. Does a family have the right to use insurance to cover this type of care which is not medically advised?

Essentially, the question is like this: Each culture has its own values, which are subjective. A Hispanic family might place a greater emphasis on avoiding pain while a Russian family might give precedence to extending life at all costs. None of these values are demonstrably superior to any other. There is a medical culture as well- one that develops from much experience for caring for the dying. Does the medical culture have the right to assert dominance over the various patient/family cultures? Is there something inherently objective to the medical ideals that are clearly superior or must they defer to family preferences even when they are convinced the family is acting irrationally?

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