At County Hospital early in February, I found that the attending was Clara, who the prior time around did not seem to want me to go anywhere with the group or to attend family meetings; she clearly wanted me to see patients by myself, so I had to be slightly pushy. When she mentioned a meeting that was going to happen that day, I asked if I could attend, and she said, “Sure.” She said it was going to be a “serious illness” discussion with the patient, and gave us a handout on points to be covered in such a meeting, which include getting a sense of what is most important to the patient (quantity versus quality of life) and finding out who the patient wants to make decisions for her if she becomes unable to.
My most recent palliative care class had been on advance care planning: nice synchronicity. Clara asked if I am ever the one to walk a patient through filling out an Advance Health Care Directive form. I said no, but that I’d be happy to take a crack at it. (We had practiced this exact thing in class with “patients” played by professional actors.) Clara said that at one hospital where she worked, they couldn’t hire people called “chaplains” because it was a public hospital, so they hired the exact same people, but called them “advance care planning facilitators,” and they were the ones to discuss these issues with patients and help them fill out the form.
Clara said a question that might come up in a “serious illness” discussion is, “How much are you willing to go through for the possibility of more time?” and she observed that sometimes it’s easier for a patient to discuss this with clinicians she doesn’t know. Sometimes patients worry that they will disappoint their own PCP if they don’t want to continue with treatment.
Clara said she expected the meeting to take a long time, so she was going to try not to have it be about the patient’s religious resources or psycho-social dimensions. She named two other patients she thought I should see by myself, and at the end of the meeting, she started to list patients she thought the group should see together; it turned out there was just one. I asked if I could come along, and she again said, “Sure. Anyone who wants to come is welcome, and if you have other things to do, that’s also fine.”
Off she and I and the nurse and social worker went to see the patient, a woman in her mid-70s with her cousin at her bedside. The cousin, who had some professional experience in these matters, said that she felt that the patient had just hours to live. Clara agreed, and started asked about travel arrangements: “When do you think her daughter will be arriving from Kansas? Will that be today? And her stepson—when do you think he will come? I believe these are her final breaths. If there is anything you would like to say, say it now.” At this, I snapped to attention and stood up from where I had made myself comfortable sitting at the foot of the fold-out chair the cousin had slept on the previous night.
Sure enough, the patient took one more breath, and never another. She died about ten seconds after Clara predicted it. After a few more moments, Clara used her stethoscope to confirm that the patient’s heart had stopped, and the cousin burst into tears. We comforted the cousin, rubbing her back and holding her hand, and our nurse went to tell the patient’s bedside nurse. Clara suggested that maybe I could say a prayer, and so I did, ending with, “Dear Lord, thank you for carrying your beloved child safely home. Amen.” (The patient was Christian.)
Our nurse came back and answered questions for the cousin, who wanted to know, “What happens now?” These procedures have been the same at every hospital I’ve been at to date: the patient is taken to the morgue, and once the family makes arrangements for burial or cremation (or I guess now composting, in some places), their funeral director (or gardener) takes it from there and retrieves the patient’s body from the morgue. Our nurse said that the normal period a deceased patient can remain in the room at County Hospital is two hours, but since family members were en route, an extension would be possible. The cousin said she would like to have the extension. Our nurse said clearly that, in that case, the patient could remain in the room for four hours, but that at that point, it would be important for the family to say goodbye. She reiterated: “At 3 o’clock, someone will come in and remind you that it’s time to take [her] to the morgue.”
(I don’t know about this hospital, but at the one where I did Clinical Pastoral Education, there was a viewing room near the morgue, and a dead patient could be wheeled in there upon request, and I don’t remember there being a time limit, though there was an informal limit as to the number of times a family could request this. Once or twice was felt to be enough.)
After we left the room, I asked Clara how she’d known the patient was taking her final breaths. She said that the rhythm of the patient’s breathing had changed, and that she had begun “agonal” breathing. (Wikipedia: breathing “characterized by gasping, labored breathing, accompanied by strange vocalizations and myoclonus.” The latter means twitching.) Clara demonstrated how the patient’s head had begun to jerk upward with each breath, which caused her chest to move as well, but her chest was no longer filling with air; it was moving along with her head, but not expanding outward. And then there started to be long pauses between breaths. I had no idea all this could unfold in less than 60 seconds, and, needless to say, had not noticed any of it.
Next it was off to our “serious illness” discussion. Before we went into the room, we met with the patient’s primary team physician, who said the patient wasn’t aware he was going to have a palliative care consultation. Clara said that, in that case, she would say that we were from the “Supportive Care” team. You can also do this if you think the patient will freak out because she (wrongly but understandably) equates palliative care with hospice, and hospice with imminent death. (A well-esteemed hospital here in San Francisco calls its palliative care team the “Symptom Management Service” for this very reason.)
Clara had previously announced her intention to get through the main topics listed in the handout she’d given us, and she did a good job. It took about 75 minutes. At times, she sounded almost like an attorney: “Do you want to continue with dialysis? You’re saying you do want to do this? Yes?” The patient was a good sport and answered quite a number of questions, though I could see him tensing up at moments.
This reminded me a bit of when she’d been asking the cousin of the prior patient about travel arrangements. During that, I’d kind of wondered: why? In the Sidewalk Talk online training, I learned that that gathering information divides us and to “listen for essence.” This has since prevented me from asking a huge number of non-pertinent questions. I say to myself, “Why do I need to know this? Listen for essence.” Clearly, in the “serious illness” discussion, it was Clara’s job to find out a whole lot of stuff, and so she had to ask question after question. Maybe it was exactly the same as regards the travel arrangements. I will of course give her the benefit of the doubt, but this points me to another reason it’s good to have a chaplain on a palliative care team (which is the heart of what I plan to write my thesis about this year): the chaplain has the luxury of having to gather very little information, if any at all. The chaplain has the luxury of listening for essence.
One question I was left with after that meeting. The patient was talking about how hard it would be to eschew certain favorite foods. I smiled and nodded at him: I certainly hear that. While I was smiling at him, three physicians and a social worker were staring at him with perfectly neutral expressions. I wonder if they were thinking that my smiling at him was tantamount to announcing that of course no one can be expected to live without doughnuts: “Have six or seven daily!” I might try to remember to ask our social worker about that.
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