Abstract
I
First there was Susan. * To some, she was the woman with metastatic melanoma. To others, she was a devoted religious woman who dedicated her life to advocating on behalf of women who were victims of abuse and had no voice of their own.
Then there was Daisy, * a beautiful woman who had succumbed to multiple myeloma. I remember the pictures of her beautiful granddaughter on the walls and the pictures of her as a ballet dancer.
More recently, there was Louis, * a man barely my father's age with metastatic gastric cancer. I first met Louis in the hustling, loud and overstimulated emergency department. I was just a fourth-year medical student and he scared me. I had never met him before but he looked too sick. He was nearly my father's age and yet he appeared frail and elderly. I spent the next few minutes listening to his daughter fill me in on how he had been doing at home. Louis only spoke Mandarin, which made things difficult, since we were in a loud, crowded hallway in the corner of the emergency room.
He had trouble breathing from the very beginning; every breath and every syllable he expressed appeared to be an accomplishment. His lungs made musical notes when you listened to them—the sounds of fluid and things that should not be there. Despite the repeated drainage of fluid from the lungs, the melody of sounds continued to resonate from the diaphragm of the stethoscope to my ear. The family was concerned it was pneumonia. But he had numerous reasons for his shortness of breath—from the recurrent fluid to the tumor eating through his lungs. Pneumonia was the only reversible cause.
A month before, he had been in the hospital with similar symptoms. The daughter said that the 21 days of antibiotics helped; he got better and was able to go home and be “Dad” again.
This time, though, even with steroids, antibiotics, and morphine, he worked tirelessly for every breath. Louis had paroxysmal episodes when he would start sweating, appear appreciably anxious, and inhale using all muscles in his body. I was present one morning for one of these such episodes; I panicked. We had ruled out the life-threatening blood clot in his lungs already. We were draining his fluid every day. We were treating him with two powerful antibiotics. And yet he continued to suffer.
Every day we spoke to Louis and his daughters about the future. He said he understood that his cancer was spreading but he wanted to keep fighting, he wanted the chemo. We explained to him that he could fight in other ways; but the promise of chemotherapy kept him hopeful. Yet with each day, his breathing deteriorated and soon he could only speak a few words before becoming short of breath.
Soon chemotherapy was no longer an option—he was too weak; his withered body could not handle the drug toxicities. Only a few days later he was discharged to hospice where he died five days later.
As we walked through our tour of the facilities, I thought of Louis and his daughters. I pictured them wheeling him outside to the courtyard to bask in the sun. I pictured him sitting in the recreational rooms, listening to the piano players. I hoped that these thoughts were not merely fantasies.
As my classmates and I listened to the medical director talk about the history of hospice and palliative care, I felt like I had failed Louis in some way—in a way that I had not failed Susan or Daisy. Perhaps it was the language barrier, but I never felt like I fully understood Louis's goals for how to live out the end of his life. Susan and Daisy seemed at peace when they left the hospital, ready to die with dignity. So much of palliative care is just being a good physician, a good listener, and a compassionate individual. Yet I felt like I lacked the pharmacologic and psychological tools to make Louis and his family comfortable.
When the inpatient hospice facility opened, dying patients were cared for by nephrologists, cardiologists, and internists. They did not consider themselves specialists in palliative care; they were just doing their job. Moving forward in residency, I hope to be able to integrate my clinical skills with family-oriented care and to try to heal in whatever way I can.