In three of the meetings that constituted family meetings that day, family members immediately said they were comfortable with the patient going to comfort care, or with no further heroic measures being undertaken. In one case, the patient’s husband explained the tremendous effort he had made over several years to help the patient heal. He had finally reached the point where he had accepted that the patient wasn’t ever going to be again she had been, and he agreed that, the next time the patient gets an infection, antibiotics can be administered, but if they don’t work, aggressive care won’t be offered. He signed a POLST form at the end of the meeting.
Another family agreed that the patient should go to comfort care, but her father said it was important to him that someone be there at the time of death. The attending gently explained that patients very typically die when no one else is present, and so the only way to ensure this is for the family to conduct an around-the-clock vigil, which is challenging to do, and even then, the patient might die when the family member steps out for just a moment.
This was also the day of the monthly palliative care lunch meeting. I’m not exactly sure yet who is invited, but in the room were eight women and one man. I arrived late, at the point when someone was offering a reflection, and then each person had the opportunity to check in, during which at least four people wept. It is wonderful that it is treated as normal that people have emotions and express them. When I did my check-in, I made sure to include something gloomy (something real, of course), because it kind of seemed it might not be proper to shriek, “My life is perfect! I’m doing great!”
Yet another thing that happened on that day was the chaplain holiday party, at which there were also check-ins, with the prompt, “What do you like most about the holidays and what do you like least?” Personally, I like everything about the holidays. I love going to be with my family at Thanksgiving. I enjoy the beautiful holiday lights I see around town, I like receiving cheerful Christmas cards with photographs of my relatives, and I really like going to Sacramento to be with Tom’s family, so I could not come up with any gripes about the holidays, though it occurred to me later that it might have been more sensitive to say that what I don’t like about the holidays is knowing that it’s a lousy, dark time for a lot of people.
I am generally trying to be an observer on these days and not to make anything take longer; it is already clear that no physician appreciates the wasting of time. The attending on this day said she rarely leaves the hospital before 7:30 or 8 p.m., and that she is regularly on a rotation that involves having to be at the hospital every single day for two weeks. However, I also want to contribute and to help other care team members understand what chaplains do. In the meeting where the husband talked about having come to accept that his wife is going to die, I thought that was worth delving into a little, to give the husband a chance to reflect on it, per the idea that what we focus on increases.
I asked, “How did you come to this place of acceptance?” and we listened as the husband explained in more detail how this came about. After we left the room, another physician who had been present said she thought that had been a good question. (The attending, however, was silent. That may have just seemed like a waste of time to her.)
The fourth family meeting of the day was supposed to start at 3, but it started at more like 3:30, and involved nine family members, most of whom don’t speak English, so an interpreter was present, which makes the meeting take twice as long. This is not at all begrudged (or not too begrudged, I trust), but it is a fact. In this case, despite the patient’s evident suffering, the family was hoping for a miracle and showed no sign of rethinking this over the course of nearly an hour.
Then, after we’d been talking for all that time, a tenth family member arrived and glared at the doctors, saying she hoped they were planning to do everything possible for the patient and not “give up on” her. “Give up on” is an oft-used phrase in palliative care, by family members. I could see how a clinician could start to feel weary at this point, or irritated. The attending did speak directly about suffering being prolonged, and she also said clearly that the patient was dying, but she did not yell, “The patient is suffering! She is never coming back! You are being very selfish!” The family wanted all interventions to continue, so the discussion eventually turned to surgery to insert a feeding tube. About then, I decided to excuse myself, since I still had charting to do.
I cannot believe how much I am learning from this one-day-a-week internship, from rounds, from the various palliative care team members, from getting to see so many interactions with patients, from getting to go to family meetings. This is a superb education. I am incredibly lucky.
As I walked home in the dark, I reflected that the qualities most needed in family meetings are patience—lots and lots of it—and beginner’s mind. That attending has been in that very family meeting five hundred times, and she has never been in it. Zen has the idea of “meeting the stranger.” The attending has heard those words and sentiments over and over—but not from these people. For them it is new and terrible. It is devastating and frightening. They can hear the doctor say, “The patient is suffering,” but all they can really hear is the cry of their own heart: “Please don’t leave me! Please don’t go.”