Despite what I had said to Emily earlier, I actually was tempted to go over to the hospice to visit her after work or on the weekend, recognized that as the impulse to overfunction, and remembered the conversation I had with my very first Clinical Pastoral Education supervisor in a similar situation. She asked if the patient had asked me to stay in touch with her. Well, no, she had not. My supervisor asked how it might play out if I did go visit the patient in her new facility, and I could immediately see that it would likely end in disappointment for the patient. I might visit every weekend for a couple of months, but sooner or later, I would have other things to do. I saw that it was not feasible or appropriate to try to prolong the relationship with even this one patient, let alone every patient I particularly like, which is a lot of them.
This impulse to overfunction is also about the mistaken notion that the patient really needs me. The patient might really like me and might even miss me, but there are (one hopes) many people who will care for her in her new home, and my hanging on could stall the development of important new relationships.
After I got home from work, I felt disoriented, as if a bomblet had gone off in my psyche. I had a wave of thoughts: “Maybe I should get married. Maybe I should move in with a roommate. I’m going to start eating sugar again. Chocolate-chip cookies!” Translation: Being closely connected to people, always a good thing, might prevent my ending up alone and terrified when it’s time to go to hospice. And: life is short, so eat cookies.
I quickly dispatched with the latter: not good self-care. And then with the former. Being connected with people is good, but what was happening here was that Emily’s fear had triggered mine, and I was going to have to deal with that, and also remember that end of life happens a million different ways and that I’ll just have to see how it is when I get there. I think I read in When Professionals Weep a clinician’s observation that most people who know they are going to die are able to make some sort of peace with it before it happens. I found myself thinking, and sincerely meaning it, “Gosh, wouldn’t it be lucky if I got cancer while I still have mental clarity and enough money?”
The next day, I no longer felt upset. (Joan Halifax in Standing at the Edge writes that “open awareness meditation seems to reduce our tendency to get [mentally] stuck, thus enhancing greater emotional pliancy.”) However, in the course of the morning, forgetting everything I had reminded myself about the perils of overfunctioning, I telephoned the hospice and spoke with Emily. I also spoke with someone who works there and said I thought Emily would love to be visited by a volunteer. When I spoke with Emily, she sounded fairly calm, though she had gotten the upsetting news that she can’t go visit her friends any more. She said that I had been there at the worst time—when they came to take her from the hospital—and she thanked me. When I asked if she still felt scared, she said, “Yes.” I told her I had asked for a volunteer to visit her and she said that would be good.
So that conversation was OK. She was of course glad to hear from me and I was relieved to hear that she seemed calmer, but now it was unclear what should happen next. Should I call her every day? Every couple of days? Weekly? I concluded that it had been a mistake to call, and that I should have known better. There was a very natural stopping point for our relationship—when the ambulance door closed—and I should have honored and respected that.
Saturday, June 30, 2018
Friday, June 29, 2018
Moving Day
When I worked a couple of days later, I went back to see the patient who was on her way to hospice. I will call her Emily. We had quite a long visit, during which I asked if she’d like to do a writing project. She liked that idea, so I asked her questions about her life, including what the most wonderful parts have been, and wrote down her answers. At the end of the visit, I said that we could continue another day, but a nurse who had just come in said, “She won’t be here. She’s leaving at 3 p.m.” This was news to both me and Emily.
I asked, “Where is she going?” or maybe Emily asked, “Where am I going?” and the nurse named the hospice where I used to volunteer, but didn’t say the word “hospice.” That is, pretending the place is called Number One Hospice, the nurse said, “She’s going to Number One.” I told Emily that I’ve spent a lot of time there, and that it’s very nice. Of course, her anxiety level shot up, because one of the main things bothering her was realizing that she was no longer in charge of her life. I told Emily that, if I could, I’d come back before 3 p.m.
I returned about 2:30 and found Emily weeping and terrified. Another care team member came in and said soothingly to her, “You’re going to go to this really nice place for a little while,” and all but winked at me. I was outraged. After this person left, Emily said, “I’m never going home again, right?” I said, “That’s right. Probably. All kinds of miraculous things happen in this world and sometimes people go to hospice and then feel much better and go home, but if you’re thinking that you will not go home again, I think that is probably correct.”
Later she asked, “Hospice means end of life, right?” I confirmed that, but in a wordy, probably kind of confusing way. I couldn’t quite bring myself to be direct because it seems like a terrible thing to learn that you will die in the foreseeable future. That is, it was likely my stuff, and indeed, by this point, I’d abandoned my usual practice of mostly listening and was somewhat urgently trying to reassure Emily: It’s a lovely place, there will be nice people there, everything will be OK. She said over and over, “This is exactly what I was afraid would happen. This was my worst fear, and now it’s happening.”
I did also acknowledge and validate her sorrow and terror, and I did say, “This will take some getting used to,” which I stole from the trailer of the new palliative care documentary End Game, which I hadn’t yet seen. (I have now; it’s good.) Those were the better things I did, I think. I also held her hand, and I was there. I asked a few times, “How are things right this moment?” and every time I asked that, there was no answer, but I got the feeling she was realizing that things were actually OK in any given moment.
She asked, “Will I see you after I leave the hospital?” and I had to say no, that the relationship must end when the patient leaves the hospital.
When the transport guys—two nice young men—came in the room with the gurney, I felt a wave of terror. At this point, I was pretty much psychologically merged with Emily and had crested the peak of empathy and toppled over to the other side, into empathic distress, as Joan Halifax describes in her new book, Standing at the Edge: Finding Freedom Where Fear and Courage Meet. She hammers home the distinction between empathy and compassion, which at first seemed like a picky sort of point, but might end up being one of the most important things I learned from her book.
I rode the elevator down to the first floor with Emily and the two transport workers, and watched her be loaded into an ambulance, and after the door closed, I wept briefly. I told one of my co-workers about it and he offered some wise words. I appreciated his kind intention, but what the offering of wise words basically conveys is, “I can’t stand feeling what has arisen in me as I hear your words and I need it go away right now.” I didn’t blame him. It’s extremely hard to say nothing when someone tells you what he or she is upset about. I couldn’t do it with Emily in our final half hour together in the hospital. It is something I hope to get much better at.
I asked, “Where is she going?” or maybe Emily asked, “Where am I going?” and the nurse named the hospice where I used to volunteer, but didn’t say the word “hospice.” That is, pretending the place is called Number One Hospice, the nurse said, “She’s going to Number One.” I told Emily that I’ve spent a lot of time there, and that it’s very nice. Of course, her anxiety level shot up, because one of the main things bothering her was realizing that she was no longer in charge of her life. I told Emily that, if I could, I’d come back before 3 p.m.
I returned about 2:30 and found Emily weeping and terrified. Another care team member came in and said soothingly to her, “You’re going to go to this really nice place for a little while,” and all but winked at me. I was outraged. After this person left, Emily said, “I’m never going home again, right?” I said, “That’s right. Probably. All kinds of miraculous things happen in this world and sometimes people go to hospice and then feel much better and go home, but if you’re thinking that you will not go home again, I think that is probably correct.”
Later she asked, “Hospice means end of life, right?” I confirmed that, but in a wordy, probably kind of confusing way. I couldn’t quite bring myself to be direct because it seems like a terrible thing to learn that you will die in the foreseeable future. That is, it was likely my stuff, and indeed, by this point, I’d abandoned my usual practice of mostly listening and was somewhat urgently trying to reassure Emily: It’s a lovely place, there will be nice people there, everything will be OK. She said over and over, “This is exactly what I was afraid would happen. This was my worst fear, and now it’s happening.”
I did also acknowledge and validate her sorrow and terror, and I did say, “This will take some getting used to,” which I stole from the trailer of the new palliative care documentary End Game, which I hadn’t yet seen. (I have now; it’s good.) Those were the better things I did, I think. I also held her hand, and I was there. I asked a few times, “How are things right this moment?” and every time I asked that, there was no answer, but I got the feeling she was realizing that things were actually OK in any given moment.
She asked, “Will I see you after I leave the hospital?” and I had to say no, that the relationship must end when the patient leaves the hospital.
When the transport guys—two nice young men—came in the room with the gurney, I felt a wave of terror. At this point, I was pretty much psychologically merged with Emily and had crested the peak of empathy and toppled over to the other side, into empathic distress, as Joan Halifax describes in her new book, Standing at the Edge: Finding Freedom Where Fear and Courage Meet. She hammers home the distinction between empathy and compassion, which at first seemed like a picky sort of point, but might end up being one of the most important things I learned from her book.
I rode the elevator down to the first floor with Emily and the two transport workers, and watched her be loaded into an ambulance, and after the door closed, I wept briefly. I told one of my co-workers about it and he offered some wise words. I appreciated his kind intention, but what the offering of wise words basically conveys is, “I can’t stand feeling what has arisen in me as I hear your words and I need it go away right now.” I didn’t blame him. It’s extremely hard to say nothing when someone tells you what he or she is upset about. I couldn’t do it with Emily in our final half hour together in the hospital. It is something I hope to get much better at.
Thursday, June 28, 2018
A Surprise One-Way Trip to Hospice
One day at work, a nurse called me (that is, paged the on-call chaplain) on behalf of a patient whose death was expected soon and who was all alone. Her family had requested that she be dressed, when dying, in her own clothes, but they hadn’t brought the clothes, and they also didn’t bring themselves, even on her last day.
I told the nurse, “I’m going to sit with her for a while, but I’m going to read my magazine while I sit with her—I’ll be back.” I went and got my New Yorker and sat next to the patient for an hour or so, periodically reassuring her that she was not alone and that she was loved. She was in a coma, and even if she hadn’t been, she didn’t speak English, but I hoped the sound of a human voice might be reassuring. She had one eye frozen open.
I stayed until I had to go to another campus to respond to a call there. While I was at the other campus, I was paged on behalf of a patient just a few doors down from the dying patient. It wasn’t an emergency, but since there was no chaplain scheduled to be at my own hospital the next day, I decided to go back there and see this patient, plus another for whom there was a non-urgent request, plus I would check in on the dying patient.
I found the dying patient evidently not breathing and having turned a yellowish color, and went to tell a nurse, who called a doctor, who came and pronounced her dead. I’ve never before been the first person to discover that a patient is dead. While I was waiting for the doctor and saying a few words to the patient, I had the odd experience of feeling strong goosebumps on both of my shins.
I went then to see one of the other patients, one whose nurse had told me she was going to hospice and was very upset about it. Accordingly, I brought along a CareNote on this subject. (From their website, slightly edited: “These compact booklets offer strength, help and healing for those who are hurting. CareNotes provide a wealth of emotional, recovery, health, grief and eldercare support and information. These wellness-oriented booklets address real-life emotional, psychological and spiritual needs.”) I don’t think I’ve ever given anyone a CareNote before, but we have a vast selection of them, I restock the meditation room with them regularly, and my co-worker hands them out all the time, so I thought I would follow suit. They use the word “God,” but aren’t associated with any particular religion.
Good thing I didn’t hand the patient this helpful item first thing because she did not know she might be going to hospice, and was very upset when the word was mentioned. From now on, when someone tells me a patient is going to hospice, I’ll ask if the patient is aware of that fact. She and I ended up having a long conversation, during which I stressed that she is in charge of making choices on her own behalf, and when we parted, she asked me to come back, so I guess recovery from that fairly serious misstep was achieved. I cravenly didn’t allude to it in my chart note, but I did come clean with her nurse, who didn’t seem perturbed.
I added, “She doesn’t know she’s going to hospice.”
The nurse said, “Well, she’s refusing care,” which I guess means the patient is therefore going to hospice.
That wasn’t my only misstep of the day. The other was that, when I first encountered the dying patient, I was kind of shocked by how young she looked, and asked her nurse—in front of her—how old she was. Later, outside the room, I apologized to the nurse and told him I do know that such a patient very well may be able to hear and understand what is said around her. (Though this patient, as mentioned, fortunately didn’t speak English.) He said, “No problem.” I’m not sure why I said that in front of her. Maybe, for some reason, I suddenly had a particular need to be seen as a kindly person who is bothered by an untimely death (which of course I am and was).
At County Hospital, I visited a patient who was missing quite a selection of body parts. After we’d talked for a while, I asked what had happened, and he said that years ago he had sepsis (a damaging immune reaction to an infection) and was given pressors (medication to elevate blood pressure, which may be given during sepsis if intravenous fluid replacement is not enough to maintain blood pressure), and this was the result.
I told the nurse, “I’m going to sit with her for a while, but I’m going to read my magazine while I sit with her—I’ll be back.” I went and got my New Yorker and sat next to the patient for an hour or so, periodically reassuring her that she was not alone and that she was loved. She was in a coma, and even if she hadn’t been, she didn’t speak English, but I hoped the sound of a human voice might be reassuring. She had one eye frozen open.
I stayed until I had to go to another campus to respond to a call there. While I was at the other campus, I was paged on behalf of a patient just a few doors down from the dying patient. It wasn’t an emergency, but since there was no chaplain scheduled to be at my own hospital the next day, I decided to go back there and see this patient, plus another for whom there was a non-urgent request, plus I would check in on the dying patient.
I found the dying patient evidently not breathing and having turned a yellowish color, and went to tell a nurse, who called a doctor, who came and pronounced her dead. I’ve never before been the first person to discover that a patient is dead. While I was waiting for the doctor and saying a few words to the patient, I had the odd experience of feeling strong goosebumps on both of my shins.
I went then to see one of the other patients, one whose nurse had told me she was going to hospice and was very upset about it. Accordingly, I brought along a CareNote on this subject. (From their website, slightly edited: “These compact booklets offer strength, help and healing for those who are hurting. CareNotes provide a wealth of emotional, recovery, health, grief and eldercare support and information. These wellness-oriented booklets address real-life emotional, psychological and spiritual needs.”) I don’t think I’ve ever given anyone a CareNote before, but we have a vast selection of them, I restock the meditation room with them regularly, and my co-worker hands them out all the time, so I thought I would follow suit. They use the word “God,” but aren’t associated with any particular religion.
Good thing I didn’t hand the patient this helpful item first thing because she did not know she might be going to hospice, and was very upset when the word was mentioned. From now on, when someone tells me a patient is going to hospice, I’ll ask if the patient is aware of that fact. She and I ended up having a long conversation, during which I stressed that she is in charge of making choices on her own behalf, and when we parted, she asked me to come back, so I guess recovery from that fairly serious misstep was achieved. I cravenly didn’t allude to it in my chart note, but I did come clean with her nurse, who didn’t seem perturbed.
I added, “She doesn’t know she’s going to hospice.”
The nurse said, “Well, she’s refusing care,” which I guess means the patient is therefore going to hospice.
That wasn’t my only misstep of the day. The other was that, when I first encountered the dying patient, I was kind of shocked by how young she looked, and asked her nurse—in front of her—how old she was. Later, outside the room, I apologized to the nurse and told him I do know that such a patient very well may be able to hear and understand what is said around her. (Though this patient, as mentioned, fortunately didn’t speak English.) He said, “No problem.” I’m not sure why I said that in front of her. Maybe, for some reason, I suddenly had a particular need to be seen as a kindly person who is bothered by an untimely death (which of course I am and was).
At County Hospital, I visited a patient who was missing quite a selection of body parts. After we’d talked for a while, I asked what had happened, and he said that years ago he had sepsis (a damaging immune reaction to an infection) and was given pressors (medication to elevate blood pressure, which may be given during sepsis if intravenous fluid replacement is not enough to maintain blood pressure), and this was the result.
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