Learning from early mistakes

I think it’s time to revisit some of the cases I’ve come across that required me to seek supervision. I’m going to start at the very beginning of my hospice journey.

When I first started in hospice, I had four young women patients in a row. They were all mothers; two of them were younger than me. In my personal life, I was about to get married; I was starting a new chapter in my life as these women were dying. It was devastating. I considered that maybe I had made a mistake in taking this job. I talked about it with a lot of people: my manager, the woman who provided my supervision at the time, my preceptor, my dad. Interestingly, my dad gave me the best advice. He said, “Can you stop them from dying?” No, I said. “What can you do?” Nothing! I said. I can just be there. He answered, “That’s right: you can be there with them. Don’t underestimate that.”

Photo by Soroush Karimi on Unsplash

That became the basic foundation of my practice: just being. When I first started though, I maybe took that a bit too literally. I was hesitant to push difficult conversations for fear of saying the wrong thing or shutting down the conversation. In the case that follows, I made a significant error because I was afraid to delve too deep.

Here is the case study (with the patient’s name changed to protect her privacy):

Lily is a 27-year-old hospice patient who has metastatic liver cancer. She has recently transitioned to hospice to broaden care provider assistance at home. She lives with her parents, her brother, her spouse, and her young children. She and her family are Vietnamese and her parents do not speak very good English. She relies on her mother for childcare, as she experiences a lot of pain and fatigue that has impacted her functioning ability. Lily’s spouse struggles to adapt to Lily’s terminal condition and appears angry at Lily’s illness; he complains often about Lily’s lack of ability to maintain the activities she once completed with ease. Lily’s main concern is who will care for her children after her death. Lily states that she knows her prognosis is poor, but she wants to try any new treatment that may become available. She signs an out-of-hospital DNR order but does not tell her family. The social worker works closely with the other members of the team to provide support to Lily but is concerned about counter transference issues due to their similar ages. The agency’s children’s bereavement counselor helps Lily create a video legacy recording for her young children. The social worker encourages Lily to talk to her family about her advanced directive preferences. However, Lily does not tell her family about her DNR. When she becomes unresponsive, the family calls 911. Lily is intubated and after a week, the family decides to withdraw life support.

Now there’s no guarantee the family would not have called 911. Remember, this is a 27-year-old mother of three. Further, there was a significant language barrier and cultural implications. It’s entirely possible that even if I had taken the correct steps of holding a family meeting (with a translator), Lily still would have died in the hospital.

All that being said, I should have done more than just “be.” But I was afraid. Also, I was deeply sad. As I said, I was a newlywed when Lily took a turn for the worse. It terrified me to see someone my age fading away from cancer. I felt guilty and anxious and I let those feelings prevent me from really doing the work. I went to supervision, sure, but I wasn’t totally honest with my supervisor. I was embarrassed, I think, that I hadn’t had a discussion with Lily about the DNR and about whether or not she had told her family about it. I wasn’t using supervision to its full extent and I think my patient and her family suffered because of it.

I presented this case at a social work hospice conference three years ago, in part to make sense of it and in part to honor Lily’s memory. I can’t forget her; she changed my practice. I am both grateful and humbled.