Monday, June 19, 2017

The Indefatigable Advocate

My cohort numbers 14 students, and we have had for several months three additional students who are at the hospital part-time. Now we have been joined by four summer students who are with us full-time. We love all of them, because they all take on-call shifts. They also are all great people, of course. The summer folks are mostly or all people in divinity school, which requires one unit of clinical pastoral education, which they typically do in the summer. There is a Lutheran, a Methodist, a Catholic, and a Unitarian Universalist. (Like, real religions.)

Fortunately, I was using the computer in the student office last Tuesday when I heard one of the summer students confirming a name someone was saying to him on the phone: my patient! He had just died, and Patient Relations was calling for help, as the patient’s mother was very upset. That was not surprising, after all these weeks of denial. I rushed to his room and found him in his bed, his mother and a couple of other relatives at his side. When I walked in, his mother said, “Thank you for coming. He loved you.” Despite what Patient Relations had said, she was perfectly, completely calm.

After 30 minutes, I left. They were coming to take his body in 15 minutes, and I wanted his family to have the last minutes alone with him. His mother walked out with me, heading to a restroom. She said to me, “Everyone thought I was in denial, but I wasn’t. He asked me to serve as his advocate, and that’s what I did.” She said that just a couple of days earlier, he had said to her, “Keep fighting, Mom.” I now recalled that one day she had given me a significant clue that she knew the truth all along: “If there is even a one percent chance, I have to believe in that one percent.”

I was touched and humbled by her final words to me. This woman, facing a parent’s worst nightmare, was willing to let the entire staff—including me—think she was nuts in order to do what she felt she had promised her son. And he, for his part, generously let her do her thing in her own way.

There is a palliative care meeting every week at another campus of the Truly Wonderful Medical Center. I am planning to attend as often as possible in this final unit, and went for the first time last week. There were 20 or so people there, half of them known to me. At the beginning, someone read a poem, and then we each introduced ourselves, and then the patients who had died in the past week were discussed by those in the room who had cared for them, often with tears. My patient wasn’t mentioned, so when they asked if there were others we should remember, I shared about him, and about what his mother said that last day. Two of the palliative care doctors added their thoughts. One said that the patient, despite being so young, never acted as if he felt entitled to live longer. She said he didn’t seem to think “Why me?” but rather “There is no reason this should not be happening to me.”

I now think that, in fact, he had a perfect death, only about 70 years too soon. He spent his final weeks listening to the voice of his mother, who never appeared tired or discouraged or in any way defeated. This remarkable woman saw her child safely every inch of the way to the finish line. He died peacefully, unworried.

A few days ago, Delia presented a didactic to us on moral distress, which she said there is a lot of in palliative care: the patient doesn’t want further treatment, but her family really, really wants that, for instance. She asked if we had examples and I mentioned my patient and my earlier worry that he was not getting to talk about his death. Delia said to our whole group, “I didn’t do such a good job with his mother. Bugwalk, you did a good job with her. Tell us how you did that.”

I said that I was aware of my judgments and opinions, but that I always remembered that, at root, she was a mother about to lose her child, and so I treated her with great warmth, and I also made sure to check in with her son periodically to see what he needed. I shared what she told me after he died, and what a good lesson it was that I don’t know what I don’t know.

After the didactic, Delia and I hugged each other and I said, “Thank you for your kind words,” and she said, “Thank you for your kind work.”
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