At County Hospital, we got a presentation on palliative and hospice care, at which we were told that most advance directives are too vague: “If I don’t have meaningful quality of life, let me die a natural death.” Better to say, “If I can’t ride my bicycle … ” or “If I can’t remember my own name … ” or “If I can’t eat … ” Whatever specifically constitutes quality of life.
We learned that hospice care is not usually done in the hospital because Medicare reimbursement for hospice is only $200 a day, whereas the cost of occupying a room at County Hospital and being cared for by a nurse is $8000 a day, and this is on a medical-surgical ward, not even in the ICU, and this is before factoring in any other care: examination by a physician, labwork, medicine, use of equipment.
Comfort care—palliative care at the very end of life—is often provided in a hospital (e.g., for an intubated patient in the ICU), but it can also be at home if the person has housing and 24-hour care, which can be from friends.
In mid-December I had lunch with Jonas. He talked about how he knows when compassion fatigue is sneaking up on him and how he handles it. He said that certain terrible memories will stay with us forever, but that most will fade, and that part of the trick is figuring out how to nudge memories to move along. As we discussed this, tears came to his eyes, and I imagined that he was remembering a certain patient of his own, perhaps a child, as he does palliative care and also works with children.
I spent a Saturday with my CPE peer Nellie in Oakland, and one Sunday, Ann, Tom, Jill and I saw Watch on the Rhine at Berkeley Rep (it was excellent), after lunch at Au Coquelet. Another day I went to visit the hospital where my chaplaincy mentor, Naima, works. She showed me around and then we chatted in her office. She said that since she usually just has one short visit with each patient, she tries to quickly assess what is causing them to suffer, using her own Buddhist understanding of what causes suffering. Once she figures out what they are pushing away, she tries to encourage them to let it in a little, or if they are clinging to something, she tries to see if there is a way they can let go. I wish I could be a fly on the wall for two or three such conversations. It would be interesting to see how she goes about this, especially in one brief visit.
It also caught my attention that she uses her own understanding of what causes suffering rather than finding out what the patient thinks is causing her suffering and what the patient’s own spiritual practice or religion or way of understanding life has to offer.
The day after visiting Naima, I attended the holiday party at my paying job, thirteen people, including our boss. I was seated across from a colleague who mentioned that he is of a certain religion that has such-and-such dietary restrictions. I asked if his wife is also of that religion and he said she is.
Our boss, who was seated at the head of the table and not next to me or my colleague, evidently had been listening carefully and said to me with a somewhat terrifying deadpan expression, “I’m curious why you asked that.” I felt like a five-year-old being scolded. I also felt a frisson of fear, and the impulse to defend myself, which I managed to resist for about 30 seconds. I could have just let her statement stand, but I succumbed to the urge to explain and said that it’s interesting to me when partners follow different diets, although, in retrospect, I’m not actually sure that’s why asked that. I guess I don’t actually know why.
Our boss reiterated that she always finds it interesting when someone asks a question like that, making it pretty clear that she thinks it’s terrible when someone asks a question like that, and then she turned to her neighbor and said, “I really think [whisper whisper whisper],” and her neighbor said, “Oh, yes. Me, too. [Whisper whisper whisper.]”
At the end of the party, which was otherwise pleasant, we took a group photo. There are two people in the group who are quite large. The boss said to one of them, “Turn sideways! Turning sideways makes you look slimmer.”
The next day, I got to wondering if it is indeed terrible to ask someone about his or her partner’s religion, even if that is directly the topic at hand, and so I texted my colleague to apologize, but he said he had not been at all offended. He also said that he’d felt uncomfortable when our boss was asking me about it, which makes two of us.