Palliative care: My moral grounds were shaken and my beliefs challenged

A cup of black coffee — such an ordinary request. Behind this request is a mother of a dying son, who due to financial restraints, has slept on the same hospital recliner chair and eaten the same oatmeal and mashed potatoes made from a water kettle every day for months. What can we offer when there is no more chemotherapy, what can we do to alleviate this mother’s struggle? A cup of coffee. A plate of scrambled eggs. Sometimes, that may be all we can do.

We are sitting in the family conference room with the mother listening to the journey that brought her here today, and I realize that she has been wearing the same clothes the past week, her hair matted with sweat and her face weathered by the sickness that surrounds her. People seem different while I am on palliative care: their motivations, their demeanors, the words they choose and the tones of their voice. Maybe it is because that I finally take off the guarded armor and finally allow emotions to take charge.

Unlike the clamor and chaos during wards months, right now, time seems to slow down and is interjected by frequent silences. On palliative care, it is acceptable to allow pauses in conversations. But my mind begins to derail. On the other side of the conference room windows, I see consultants swing by with brisk steps, nursing staff answering patient’s calls and, occasionally, you hear a laughter or a surprised exclamation. All of this feels surreal.

One of the patients and families I met during the first day on service is someone I had admitted to the hospital a few nights before. A woman with cirrhosis and a very poor prognosis was admitted for upper GI bleed. I distinctively remember bombarding her and the family with questions, occasionally interrupting in order to stay on track — on my track. That night, I had one goal in mind: time.

I had two hours to obtain a history, perform an exam, reconcile her medications, confirm code status, formulate a plan, staff with my attending, put in admission orders and write a quality note. There was no time for me to learn that she had seven children, worked at a canary for fifty years before retiring at the age of eighty and had her children work in the orchid fields on weekends so that they would learn the meaning of hard work. Now, we sit with her and her family for more than an hour.

Through her weathered face and dark almond eyes, I see her and her husband’s journey from Mexico to Texas, then to California, across the Central Valley, and through those orchid fields. I see no fear, only determination, and optimism.

Palliative care is a relatively new specialty in the medical field. The first United States hospital-based palliative care consult service was developed by the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital. As Dr. B. J. Miller, a physician, a triple amputee, and the founder of the Zen House Project in San Francisco puts it: “You train people not to run away from hard things, not to run away from the suffering of others.” Kaiser Permanente offers a robust multidisciplinary palliative care team — both inpatient and outpatient — with a social worker, chaplain, nurses and board-certified physicians. This seasoned group of health care providers offer not only end-of-life discussion, but more importantly, they open the conversation with patients and families regarding their wishes and goals in life early on and offers emotional support.

As an illustration of the magnitude of impact of having palliative care service, a 2010 study in The New England Journal of Medicine showed that people with lung cancer who received early palliative care in addition to standard oncologic care experienced less depression, increased quality of life and survived 2.7 months longer than those receiving standard oncologic care. A widely cited report in 2007 of a randomized controlled trial with 298 patients found that palliative care delivered to patients and their caregivers at home improved satisfaction with care while decreasing medical service use and the cost of care. However, the daily grunt of rounds, writing notes and coordinating care with consultants and ancillary staff, unfortunately, simply does not allow us the leisure of having these in-depth conversations.

During many of these humbling moments, my moral grounds were shaken and my beliefs challenged. I was shocked at how much burden the family has when a person goes home on hospice care, and I was proven wrong to think that hospice equates to accelerated death. As an aspiring infectious disease physician, diagnosing and fixing patients’ ailments with medical interventions give me satisfaction and purpose. End-of-life discussions and the practice of comfort care used to give me a great deal of cultural and moral incongruence.

As Dr. Gawande explains in his book, Being Mortal, “Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.” The next time when family members ask me, “What would you do if this was your parent?” — I would feel more equipped and open to have these discussions and prioritize patients’ wishes. At the end of the day, everything we do for patients is our attempt to save them from suffering. We are trained to toggle the delicate balance of “beneficence” and “malevolence,” but sometimes, we simply need to ask them, “What are your wishes?”

Qing Meng Zhang is an internal medicine resident who blogs at MillennialMD.

Image credit: Shutterstock.com

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