Tuesday, April 30, 2019

Unbefriended

In the palliative care rounds meeting at County Hospital, we discussed an “unbefriended” patient who needed to fill out an Advance Health Care Directive. Such a patient may be a homeless person, which means she doesn’t have two friends to witness her form, and she also might not have the $20 it costs to have the form notarized if you can’t come up with two witnesses. Seems kind of unfair that some people have enough friends and also enough money, and other people don’t have any of either.

I spent part of the day with a palliative care fellow named George, who I thought had impeccable reflective listening skills, and was also a master of gaining consent. “Would it be all right if I summarize what we’ve talked about?”

I noticed, again, that for the physicians, the day can be one long interruption: The physician starts task A only to be interrupted by task B which in turn is interrupted by task C and so forth all day long. I asked George if it seems that way to him, and if there comes a moment at 5:30 p.m. when what you started out to do at 9:30 a.m. pops back into your mind, and he said it is exactly like that. On top of that, a huge number of personalities and viewpoints must be accommodated beyond those of the palliative care team: the patient, the patient’s family, the bedside nurses, the primary care team, specialists, administrators, insurance people, people at other facilities.

In the course of the day, we visited a patient who wanted to leave the hospital against medical advice, clarified the wishes of a patient whose speech was extremely difficult to understand and helped him fill out a POLST form, and discussed with the weeping husband of a dying patient what he might see as she approached her final moments. (On a more mundane note, I asked the husband if he felt chilly in that room, because I did. The poor man was wearing several layers of clothing and agreed that it was cold. Turning up the thermostat was one thing we could do to help.)

When the fellow and I came out of one room, I was surprised to find that he felt disappointed by his effort. I told him that I thought his reflective listening was excellent and that I thought he’d done a great job. It’s surprising how often these physicians who are so extremely intelligent and so well educated see themselves as somehow failing. Perhaps spending years in a very competitive environment encourages harsh self-judgment.

At the end of the day, our nurse hugged me goodbye for the first time. Maybe she had just known me for enough weeks at that point, but it might also have been because she was present, along with a dying patient and her son, when I prayed for the patient. Chaplains are the only clinicians who are seen to pray in the hospital, and it often seems to be really appreciated by other clinicians.

At my paying job, it occurred to me that one would do well never to review the chart note of anyone whose specialty is listed as “Wound Care.” I suspect that if I saw the actual wound, I wouldn’t keel over, but for some reason, seeing a photograph is horrible.

Mid-February was our last team meeting at my paying job with my boss present. Around that time, I had brunch with a peer from Clinical Pastoral Education who was assigned to the transplant unit. I mentioned my idea that people who get transplants feel guilty because someone else has died that they might live, but he said he had never encountered that. He said mainly people are thrilled that they have gone from being ill to suddenly being well. However, it can also happen that people who fail a blood test, even if it’s something that doesn’t pertain to their illness, are dropped from the transplant list. This is a death sentence, and these people are enraged. He said he encountered this maybe four times during our yearlong internship.

Also around that time, I attended Schwartz Rounds at County Hospital. The topic was diversity, equity and inclusion. Panelists included an African American pediatrician, who told about an unpleasant experience she had visiting the ED at Kaiser, where she felt she was treated in a dismissive way. A European American doctor told a story about realizing he was responding to an African American patient and family from a place of bias. He was able to realize this in the moment and align with the family, which allowed him to learn that some of his assumptions were not correct.

The pediatrician said that a person who encounters evident bias may tend to get angry and act out, or to go silent. She advised trying to connect to the offending doctor on a human level (“as one would do with a serial killer”). She pointed out that when we act instinctually, we’re likely to do something wrong. We need to pause and act with intention (to avoid acting from our unconscious biases). She said we can call out our colleagues: “This interaction seems disrespectful to me. Can we go back to it in a different way?” The European American doctor described having been called out by a medical student: not in line with hierarchy. It may be difficult for people with more power in a given system to hear feedback from people with less power.

Sudden Death

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.

Extraordinary Minister

At work, I got a call to visit a young woman whose baby had died. The family spoke another language, so I asked the nurses for the interpreter phone—it was a weekend and the language was not common, so there was no chance of getting an in-person interpreter—and instead of handing me a substantial blue telephone, she handed me a little candy bar phone. I called interpreter services, which wanted a code I didn’t have. I kept asking the nurses for help, and they looked kind of irritated.

I went into the patient’s room and said one word to her: “Sad,” in her language. She nodded. I then was able to get an interpreter on the line, though there was a lot of annoying static. After the interpreter helped me and patient introduce ourselves to each other, the patient said she didn’t really feel like talking, so I asked the interpreter to stay on the line—which he kindly did, remaining silent for 15 minutes—and I sat down next to the patient and took her hand. She rubbed my hand with her thumb, a trusting gesture that made me think of a child. After that, I just sat there. Every time I had the impulse to do or say something, I reminded myself silently, “There is nothing I can do to fix this.”

I wondered if the patient’s family members were angry because I was allowing a mood of gloom to settle over the room: we called the chaplain so she could cheer us up! The patient fell asleep. I continued to hold her hand for five more minutes, and then I made eye contact with the family members and left as quietly as possible. Somewhere along in there, the patient’s nurse came in briefly to check on her. She must have told her colleagues what I was doing, because when I got back to the nursing station, they were all beaming at me. I apologized for the earlier chaos while I was trying to connect with the interpreter, but they said, “No, no, that’s fine!”

++

I was called to see a patient who was upset because he had been told his time was short. For the first time ever, I said directly to a patient, while looking him in the eyes, “You are facing the end of your life.” As when I told Emily what hospice means, it was received much better than I might have imagined. The patient didn’t cry or protest.

He started out by saying he wants it just to be over. In that I recognized our self-protective tendency to devalue something that is being taken away. I once heard BJ Miller say at a meeting something about how the trick is to completely value our life and see its beauty while also saying goodbye to it.

Going directly by the book—namely, The Four Things That Matter Most: A Book About Living, by Ira Byock, MD—all his books are superb—we discussed how the patient might bring people to mind and ask for their forgiveness; he was preoccupied with not always having been the kindest person. We discussed if there was anyone he needed to forgive, if there was anyone he wanted to say “I love you” to, and if there were people he needed to thank. “That would be a long list!” he said with enthusiasm.

++

When I began Clinical Pastoral Education in June of 2016, I was worried about being with dead people. This has long since ceased to be frightening, though it still feels like a solemn and important thing. The thing I was most worried about was having to baptize a baby, most particularly a dead one. I was worried about being able to execute the ritual (acting as what the Catholic church calls an “extraordinary minister”; anyone can do this) and I was worried that it would somehow be just too hard to encounter a dead baby and also have to perform the short ceremony correctly.

Early in February of this year, I was musing that, two and a half years later, I still had not encountered this situation, and then it happened. I was on call and received a page. The nurse told me that a baby had died the previous day and its parents had declined spiritual care, but had changed their minds and wanted their daughter baptized, which would require bringing her back from the morgue. The nurse said she wasn’t sure whether the baby was “dysmorphic” or not.

I headed over to that campus wondering if I would encounter a horribly deformed child. A nurse there searched for and triumphantly produced a small bottle of holy water (which did indeed prove to have mysterious properties), and the family’s nurse and I went into the room. The nurse served as interpreter, and did a fine job. Her manner was perfect.

As it turned out, the baby was swaddled up to her neck in a blanket, and had a little knit cap on her tiny head. I believe she did have physical abnormalities, but her face was beautiful and perfect. I started by saying that we wanted to honor the life this child had lived inside her mother. At this, the mother wept, which was good: one important function of ritual is encouraging the expression of grief. I had studied my cheat sheet beforehand and easily performed the brief baptism ritual: “[Child’s name], I baptize you in the name of the Father, and of the Son, and of the Holy Spirit.” A sprinkle of water on the child’s forehead is to accompany the name of each being, so thrice. The opening of the bottle was unimpeded, yet I could not get a drop of water to come out: that was its mysterious property. The nurse finally dripped a bit of water onto a piece of gauze, proving it could be done, so I proceeded a bit more vigorously—I hadn’t wanted to drench the baby’s face in water—and three drops came out.

(Normally you’re supposed to have the whole forehead exposed and apply the water so that it drips toward the back of the person’s head, but because of the knit cap and the fact that the baby was lying flat on her back, I resigned myself to the water dripping down the baby’s face, but since so little came out of the bottle, it didn’t drip.)

Then I explained that the Catholic church does not recognize the baptism of a deceased person, but said we were honored to provide the ritual and blessing. To clarify, anyone can act as an extraordinary minister to perform a baptism that will be recognized by the church, but it has to be of a living person, of any age, in an emergency situation where the person will not live until a priest arrives. It is not permitted to baptize a dead person, but probably most priests will provide an appropriate ritual and the sprinkling of holy water, and I’m sure there are priests who go right ahead and do an actual baptism, as a gesture of kindness.