Cleansing of Body and Spirit

One day when I was sitting in the workroom while on the hospital service, our palliative care pharmacist stopped by to tell us of a patient we were likely to be asked to see in consultation. Still in his teens, our patient-to-be had recently been diagnosed with a rare malignant neoplasm with an expected survival of only a few months at best. He and his family were still in denial tinged with anger. There had been some missteps with communication and symptom management leading to a loss of trust between the family and the primary team. Our pharmacist explained to me that they were dedicated members of a faith community and lived in a rural area. “They lead a seemingly simple lifestyle, but they are anything but simple people,” she said. I was soon to find out that truer words had never been spoken.

When we approached the patient's room his father was outside by the door, acting as his son's sentry and caretaker. I introduced myself and my nurse practitioner colleague as members of the palliative care team and that we had been asked to see his son. He was livid. “Palliative care! We are not giving up.” I briefly explained our role, told him that I could not imagine all they were going through, and suggested that we could come back later.

We were both shaken by our experience—my nurse practitioner colleague asked me how we were going to handle the situation when we returned. I told her I wasn't sure, but I thought we would first try to focus on symptom management, attempt to make some personal connection with him and his family, and over time reestablish trust between the patient, his family, and the medical teams caring for him.

We did indeed move cautiously in developing our relationship. For a few days we focused on his symptoms and he did begin to feel better, albeit they were still wary of us. He had a large family with several siblings, and one brother in particular seemed to be at his side almost every time we entered the room. One day his brother had a mandolin and guitar in the room and I inquired about the instruments. “Yes, we play,” replied his brother.

“Bluegrass?” I asked.

“Yep. You want to hear us?”

He brought out a CD of the brothers and their bluegrass band. We listened intently and a wry smile appeared on the face of our patient. We had made a connection.

His symptoms much improved, we spent the next several days listening to music with the family, and ever so slowly the conversation began to open up. All of the siblings were well educated, and they also each had a craft they had mastered. We learned that our patient was a beekeeper. We doubled over one day laughing when he told us the tale of taking 40 beehives out of state on a flatbed truck and the baffled highway patrolman who pulled him over.

Often when we came out of the room the primary team would ask, “Did you discuss goals of care?” “Is he going to undergo chemotherapy?” “What about the code status?”

“We don't know anything yet,” we replied. “We've been listening to bluegrass and talking about beehives.”

I could tell by the look on their faces that this confirmed their suspicions about the role of those offbeat palliative care folks.

Over the next several weeks his course continued on a downhill trajectory—to the floor, back to the unit, bleeding, infection, clotting, tubes and lines. Through this his faith sustained him and his family remained steadfast. Caring, loving, kind, hopeful but realistic. Simple people they were not. Clearly they were in this world, but not of this world. Every health care professional that came in contact with them came away in awe of their resiliency and their faithful approach to an unimaginable situation. Eventually the mistrust between the primary team and the patient and family began to dissipate.

He continued his clinical descent, and one morning his nurse paged, saying I had better come soon; he is dying. My advanced practitioner colleague and I arrived minutes after he died surrounded by his parents, brother, and clergy who had been so dedicated to him. Stricken with grief, his father kept saying over and over, “He was a golden child.” His mother thanked us for being his friends. Not clinicians, but friends.

I then witnessed something that I have never seen before, and death is not a stranger to me. His brother took a cloth and using a basin of water at the bedside, began to wash his brother's feet. Quietly, deliberately, lovingly, he gently washed his legs, then his trunk, and finally his face. The metaphor and narrative of foot washing and the faith that had sustained them through this ordeal resonated with me. The image of a 17-year-old boy washing his deceased brother's body will forever be ingrained in my mind. His body and my spirit had been cleansed.

I think often of what I learned from my experience and how much a dying young man and his family has given to me. Hope, faith, love, simplicity, and resiliency were at the core of each of their beings. Thank you dear people.