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Seeing ghosts in the form of patients

Stanford Medicine Unplugged (formerly SMS Unplugged) is a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week during the academic year; the entire blog series can be found in the Stanford Medicine Unplugged category.

hallway-867226_640On my medicine sub-internship, I took care of an elderly man who was a retired military surgeon. When he first came into the hospital, mentally altered from an underlying infection, he was irascible and unpleasant towards many staff members, swatting their hands away as they attempted to draw blood for lab tests.

As the infection came under control, the shell of rage fell away to a quiet dissatisfaction. The bed was hard and pressing on a sore on his sacrum, but it was painful to move and so he denied the frequent turning recommended by his nurses to ease the progression of the ulcer. He was often incontinent of urine and thus preferred to have a urinary catheter, though the discomfort it caused often made him pull it out. It would be easy, to the hurried clinician, to write this person off as a difficult patient, one whose complaints may drain the energy from an already exhausted doctor.

But this man was all too familiar to me.

A few months ago, I lost my grandfather, a renowned cancer surgeon in India, after a bout in the intensive care unit.  The lively and generous man who cared for his entire extended family became, during those brief weeks of suffering, sometimes moody and difficult to appease.  Altered by delirium and nagging pain, he expressed frustration towards the people who were trying to help him. He constantly fixated on the thought that he had a malignancy in his lungs, despite multiple negative tests.

But I know that beneath the fragile skin of illness was the magnanimous grandfather, the hawk-eyed surgeon, the unrelenting teacher. That person emerged in glimmers: a sudden conversation about advances in oncologic practice, moments of deep concern for the well-being of his family members, and the clarity with which he described that he would not want to end his life on a ventilator and that he had lived fully and proudly. The last moments with him made me viscerally aware of the eagerness with which family members waited for daily news of their loved ones’ progress, or the importance of tiny details of their care (the number of milliliters of fluid drained from his lungs by the pigtail catheter, or how many spoons of broth he had eaten overnight.)

After my patient’s infection cleared, the scans of his lungs revealed some spots.

After calling his wife and son to join us in the hospital, we discussed what the patient would like to do about this finding. Again, his mental status seemed to wax and wane, but one thing was clear — he wanted to know what was wrong.  In a seventy-five year old with a significant history of smoking cigarettes, now coming to us with slow-growing spots in his lungs, the diagnosis was not a surprise to anyone: lung cancer. In my grandfather’s obsessive fear was this patient’s reality. And we certainly felt the irony of a man now riddled with the same disease that he once excised from other people’s lungs.

It took only two days to cure the patient's infection, but many more to decide to do nothing. First he received full body imaging. Then the imaging revealed areas of metastasis, which resulted in a needle biopsy of one such area. This biopsy didn't yield enough cells to make a clear diagnosis, but further biopsies would risk compromising nerve function. Ultimately, he and his wife decided that palliative care would be the best option to ease his suffering and to best enjoy his remaining time. He would go next to a long-term facility that could care for him, and spend some time in the hospital awaiting this placement.

You may think that the remainder of the time was a waste, time spent waiting, deferring, not healing. But I didn’t feel it so. Care was given in the interim: in the daily phone calls I would make to his wife, to update her on progress big and small (a new cream for a skin fungus, the scheduling of a bone biopsy), in the courtesy of rounding on a patient who had no new updates and in addressing him as "Doctor" and stopping to listen to his anecdotes of surgical history, or in the careful perusal of his full-body imaging to point out the many places on the map of his body where the cancer had spread, where the tissue lit up like stars against the curtain sky, and to swallow the pause, to hand over a tissue to his wife, to process together — his family and our medical team — that this was cancer, spreading cancer, not the neat kind that could be cut out. Acceptance is a slow process in which disbelief is leached from reality. It requires patience and partnership, which I hope that we gave to him and his family.

The hospital is full of ghosts, and sometimes I see my ghosts in the form of my patients. And perhaps I tend to treat them with more empathy and with a confidence that comes with knowing and living a certain trajectory of illness. Of course knowing is not the only way — imagination is the greatest vessel of empathy — but it forges an intimacy between doctor and patient. I was grateful for the opportunity to care for this particular patient and his family.

Amrapali Maitra is a sixth-year MD/PhD student at Stanford studying medical anthropology. This academic year she is based in Kolkata, India, conducting dissertation research on women’s health, poverty, and gender-based violence. Amrapali grew up in New Zealand and Texas, and she studied history and literature as an undergraduate at Harvard. She is a 2013 Paul and Daisy Soros Fellow.

Photo by Foundry

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