Sunday, July 30, 2017

Hammett


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Tingling Hands

This past Wednesday, I got up at 4 a.m., as usual, to meditate, see to Hammett’s needs, stretch, and have breakfast. I took the city bus to the palliative care team meeting and got a ride afterward to campus from my hospice friend who usually goes to that meeting. Back at work, I realized I didn’t have my hat. I walked to the administrative building to get the key to Jodie’s office; I had stopped to see her upon returning to campus and thought I might have left my hat there. I walked back to the building where her office is to see if my hat was in her office. It wasn’t. I walked back to the administrative building to return the key and got on the shuttle to go to the other campus.

I went to the weekly farmers’ market
and to Publico to get a fish taco, with the sun blazing down on my bare face, before going into the hospital. Inside the hospital, I went to the cafeteria to eat my fish taco. I spied a couple of my peers sitting outside on the patio and went out to offer them blessings for their hands; it was Blessing of the Hands week. I went up to the student office and hung out until a didactic on the “use of self” started. After that, three peers each spent 20 minutes apiece offering wisdom: on a specific aspect of the Kabbalah, on the Jizo ceremony for dead children, and on the “Rule of Life.”

I waited for the shuttle after work for about 45 minutes, in a long, long line, and after I got on, found we were stuck in an impenetrable traffic jam. It ended up taking an hour and a half to get home; I could have walked there in an hour. Then it was time to see to more of Hammett’s needs, water my neighbor’s plants, check my email, make my to-do list for work for the next day and fall into bed, where I fell asleep right away, but then woke up 30 minutes later and lay awake for hours. This happened several nights in a row. I finally fell asleep, but after I got up to go to the bathroom, I again lay awake for a long time. And that is the story of one day in CPE.

The palliative care team meeting that day was very interesting. We ran out of dead patients to talk about, and discussed informational interviews with potential hospice patients: Giving information versus pushing hospice services. It’s hard to get people interested in hospice when two or three other services (e.g., surgery or oncology) are saying, “We can do such-and-such for you.” It’s even worse when providers say, “You can either do nothing or have treatment.” Given that choice, who would not choose treatment? Sometimes people speak of “withdrawing care,” which is a terrible phrase. We never withdraw care as such; we transition from curative care to hospice care or comfort care.

In telling people about hospice services, we might do better to say, “Let’s optimize the possibility you are going to get stronger. These are the services hospice can provide.” Also, hospice is not a one-way street; you can do a trial period. People are eligible for hospice when their life expectancy is judged to be six months or less, but most people go to hospice so late that they die a week or two after going “on service,” and so of course people associate hospice with immediate death. It’s not supposed to be what you do for a few days before you die. It’s supposed to afford up to six months of being able to do what is most meaningful and enjoyable to you at the end of your life, as possible, without having to spend time on treatment that is no longer helping, takes up however much time, costs however much money, and potentially causes suffering and makes it impossible for you to speak with your loved ones.

It was mentioned that, at our medical center, attending physicians feel uncomfortable with fellows having conversations about end of life choices without oversight. The only current requirement is that a person with metastatic cancer be asked if he or she has a durable power of attorney, which is a pretty low bar. I also learned that “case finding” is not appreciated—other doctors don’t enjoy hearing that their patients have turned up on a list of possible palliative care patients.

As mentioned, it was Blessing of the Hands week this past week. We were invited to write and submit a verse to be used for the blessing, and the verse that was chosen was lovely. (I did not submit one.) It was also very easy to memorize, so I did that, and then I went around my unit offering this brief ritual of good wishes to care team members. I would invite each person to rest his or her hands on mine, and I would speak the words of blessing, and finish by saying, “Thank you for your important work.” People seemed to really like this. We each signed up for areas in the hospital outside our actual patient units, like radiation oncology or administrative areas. In addition, I offered blessings to random people who crossed my path: a cashier in the cafeteria (who said this made her day), a couple of construction workers, several housekeepers, two young volunteers, and four of my peers. Near the operating rooms, someone at the front desk announced it over the P.A. system, and 14 people lined up to have their hands blessed. One person said afterward that it made her hands tingle; she was smiling.

Lake

This is the view from my cousin’s deck. That is a child’s play oven you see in the foreground.
 

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One Thing I Will Never, Ever Do

Things are moving very fast now. Anita and I have had our very last one-on-one meeting, because this coming week we will do joint visits for the last time, and the week after that, we will present our final self-evaluations, and on Thursday of that week, we will graduate! After that, there will be five weeks devoted to seeing patients, so we can practice being full-time chaplains for an extended period.

I’ve changed my procedures when rounding at the other campus. For most of this year, I have gone around to the five infant care nurseries and just said hello to the nurses. A few on-calls ago, a male nurse said to me, “Thank you! Visit some babies!” So I did that, and it was so nice that now I say, “I’m just saying hello and admiring babies,” and then I go into several rooms to peer at our littlest patients, most quietly sleeping, and wonder what they are dreaming inside their little baby heads.

Last week I presented my final verbatim of the year. Anita said she thinks I would be a good CPE supervisor. I told her I am never, ever, ever going to be a CPE supervisor: they work way too hard. But I did appreciate hearing that she thinks I could be a good teacher and leader. Another supervisor that I did joint visits with offered to write me a letter of recommendation, and it turned up just one day later, full of glowing compliments. Anita is also going to write me a letter, and when I bumped into yet another supervisor this past week, she said, “I’ll write you a letter of recommendation if you want.” So I am feeling very recommended, which is a nice feeling.

Washington Bike Ride


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Mayday!

I’ve been going most weeks to the palliative care team meeting across town. People from several hospitals attend this meeting. The first time I went, someone told a long, long story about a  patient. I wondered why this person was going on at such length, and then I realized that the whole point of this meeting is to share stories about patients. We start by introducing ourselves and we hear a poem, and then we tell stories about patients, and at the end, we each share something we feel grateful for. Emotions are welcome, which is not at all true in many areas of medicine, so this meeting is special. The leader, a palliative care doctor, said a couple of weeks ago, “If you’ve come to this meeting once, you’re welcome for life.” I plan to keep going after CPE is over.

Mid-July, I flew to Seattle for a long weekend to visit my cousin and her husband and their two children and my cousin’s mother-in-law and their dog and four cats. They live in a house north of downtown that overlooks a shimmering spring-fed lake. I had met Sarah, who is now four, on a past visit, and got to meet Thomas, two, for the first time. One day my cousin was in the back yard with her daughter. Thomas asked his father, “What are those girls doing down there?”

The weather was gorgeous: sunny, clear, warm. On Saturday, my cousin gave me a ride to Kenmore, where David and Lisa now own a home, and we took a beautiful 10-mile bike ride along the Sammamish River to Redmond, where we had lunch at Ooba Tooba’s, a taqueria, before riding back. It was a perfect day, and the whole trip was lovely and relaxing. I was really conscious of enjoying every moment of it.

My cousin’s mother-in-law is an astute genealogy researcher and has been looking into my cousin’s, and therefore my, family. I learned some interesting new things. On Monday, she took me back to the University of Washington LINK light rail station, where she had picked me up on Friday, and I took the $3.25 trip back to the airport.

At the San Francisco airport, I stepped out of the terminal to tell the fellow I’d like to take SuperShuttle home and was astonished when he said it might take up to an hour; usually the wait is about ten minutes. I spotted a man seated on a bench who had been in the shuttle I took to the airport on Friday. He was in the same boat (so to speak) and had just learned that there are 70 SuperShuttle vans sitting idle on a lot somewhere because so many drivers have gone to work for Uber. Furthermore, all the Ubers on the road are clogging traffic, exacerbating the problem. How anyone could have thought having one passenger in each Uber would be good for traffic is beyond me.

Having seven people in a SuperShuttle van is good for traffic. Having 50 people in a bus is good for traffic. (Unless it’s a Google employee bus full of people driving the rents beyond comprehension, of course.)

“I heard there are 45,000 Ubers in San Francisco,” I said. Then I remembered I had actually heard it from him, during the shuttle ride three days earlier. Fortunately, a SuperShuttle van turned up in about ten minutes.

Wednesday of the following week, we had a work retreat in Golden Gate Park. We did tai chi and partner exercises and had lunch al fresco, and in the afternoon we were free to do whatever we wanted. I went boating on Stow Lake (a man-made lake three feet deep, but it looks like a lake, and is surrounded by greenery, and there are ducks and turtles) with Sam and two other guys. It was extremely fun, including Sam shrieking, “Mayday! Mayday!” when we went into the branches at the side of the lake. When we returned, we partnered up again and shared our aspirations for the rest of CPE and beyond with our partner, and offered each other blessings—CPE students do this kind of thing all the time. My partner offered me such a lovely, heartfelt blessing that we overflowed with good feeling and joined the pair next to us for a group hug. “Aw, that was so good! Group hug!”

Sammamish River

David and Lisa during our excellent bike ride.


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Smaller and Smaller

So I did share my feelings with Anita about what she wrote in my evaluation at the end of the third unit (of four) of the clinical pastoral education program I will be graduating from a week from Thursday. I told her it’s hard for me to have feelings with others observing, and I asked for her help. (I also told her that Delia and my at-work therapist had said the exact same thing she did.) She was warm and understanding. I think she was also chagrined that I had felt so upset. She said she never intends for anyone to feel that she is using their words against them—she wants to give direct, specific feedback, but tries to make it so there aren’t any surprises. She also said she thinks I’m a “phenomenal” chaplain.

Toward the end of June, Howie led a half-day of meditation at the Mindfulness Care Center, which was lovely. I also had lunch with someone who was pretty much my best friend back in the mid-1980s. Our three part-time CPE students had their graduation ceremony.

I had my first chaplain job interview, at a hospice that is just getting started. The interview went very well, but I felt rather lukewarm about the job, which sounds like it will be an hour here and an hour there initially. Afterward, I decided to go to the downtown Container Store, and as I walked there, I found myself thinking about F. a lot, wishing I would see him. Several blocks from his apartment, it occurred to me that if he were returning to his home on a northbound Mission St. bus, he would probably get off at the stop at 7th and Mission. I turned my head to look at that bus stop, and there he was, across the street, walking in the direction of his place.

I scurried ahead to the corner and crossed the street so that I was waiting for him when he arrived at Market St. We had a brief exchange, at the end of which he said, “I should go.” I said, “OK,” and he walked off. For half a block, we walked in the same direction, on opposite sides of Market St., and then he turned north, and I stopped and watched him until I couldn’t see him anymore. I think it was good that we met, because I got to see with my own eyes that he has psychologically gone away from me. The time I saw him before that, before we broke up, everything was just as it had always been, and so it was hard to wrap my mind around the fact that we were no more. It was really helpful to get to act out physically what had happened emotionally: we were together, then going the same way but no longer together, and then he got smaller and smaller and smaller, and then he disappeared.

The last day of June, I stayed at the other campus all day, where I had been on call the night before, because they were short-staffed. In the evening, I treated Sam to dinner at Chez Maman West, near Hayes Valley, and then we saw Hamilton at the Orpheum. Sam knows pretty much everyone in the entire hospital, and of course was present when a nurse happened to manage to buy a number of tickets for $100 apiece, of which she sold him two. That was months ago, followed by my low-key but persistent campaign to be his date for the show. At some point, he asked me to make a particularly unfavorable on-call trade with him. I decided to do it, since he has done me favors during this year. I was not thinking about Hamilton one way or the other, but right after I said I would make the trade with him, he invited me to join him. I had read the book it was based on, Ron Chernow’s splendid biography, and I was dying to see the show, and I did see the show! It was all I had hoped for—really wonderful.

A few days later, Ann and Tom and I had lunch at Au Coquelet and went to Berkeley Rep to see An Octoroon.

Reflection


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Monday, June 19, 2017

Heady

Today I had the day off, per making sure to use every last minute of comp time before the year is over. I’ve been back to meditating in the style of Sayadaw U Tejaniya lately—not seeking to stick like glue to the breath or to bore into my experience with great determination, but applying just enough attention to be aware that I’m sitting there, to notice pleasant and unpleasant sense experiences, to notice my attitude toward sense experiences, to study the interplay of thoughts and other experiences.

I still felt kind of upset with Anita, though several more readings of her evaluation had made it look a bit less bad. It was clear that my disgruntled thoughts were harming precisely one person, me. I start every period of sitting with 10 minutes of metta practice. If the whole sitting is 10 minutes, it’s all metta. Today, even after that, when I felt myself starting to get wound up, I did metta for myself and noticed that, all of a sudden, Anita didn’t seem like the ogre she has been in my mind for the past few days. The badness isn’t in her; it’s in my own mind. SUT’s way of meditating is really great for keeping an eye on the mind, as it were, which gets up to terrible mischief with dizzying speed.

During breakfast, I got a call from my therapist at the Truly Wonderful Medical Center, wondering if I was going to schedule another session. I get to see her for free, but only for a certain number of sessions, so she was going to try to refer to me an outside therapist I could see weekly at a bargain rate. (Fifteen dollars a session is what some of my peers pay.) I told her I hadn’t gotten in touch after our last session because I don’t have time to see a therapist outside work even if it’s free. Even if the therapist paid me to visit her, that time would come right out of sleep time, so I can’t do it.

I said that, though I know I could see her two more times, I agree with her thought that seeing her every six or eight weeks isn’t enough to really build a connection. However, I said, she is largely responsible for pushing or nudging me out of the relationship with F., and for that I am grateful.

In the spirit of being honest, I continued, I wanted to tell her that at our last session, when she said, “That sounds kind of heady”
—meaning that I was thinking rather than feelingI felt rather criticized. (She let me get away with that. Anita would have said, “Criticized? Does that mean you felt angry, sad, scared or happy?”) I reminded her that in earlier sessions, she had asked, “Do you want to pause here and get in touch with emotions?” I had agreed to do that every time, and was astonished at how strongly and quickly feelings arose: like magic. I said that, along with feeling criticized, I also felt a little wounded when she said I sounded “heady.” I told her that I was thinking, “I’m sure that’s true! I’m not good at this! I need help!”

She thanked me for the feedback and said she could see me as many as three more times, if I would be willing to do that. She said she would like to discuss what I’d just told her. I readily agreed, and we made an appointment. The email from Chantal felt like a piece of grace, and so did the call from my therapist, as well as a lifeline. I am grateful for the help that shows up unbidden.

I walked off to see my shirt lady contemplating that when I can’t tolerate what’s happening in my body, the mind takes over. It feels so much better when my heart is open, which can’t be forced, but these things are helpful:

—Noticing where my attention is. (Am I aware of being aware of something, or am I lost in thought?)

—Resting my attention on my body just in this moment.

—Observing the content of my thoughts and remembering that they are just thoughts.

—Doing metta for myself. Even one mental repetition of “May I be happy and relaxed” is five seconds when I can’t be deciding horrible things about other people.

So here we are, and I now have decided to share my feelings with Anita about what she wrote, and ask for her help, as with my therapist. By the way, what was it that Anita said that was so gravely offensive? She said that it is not easy for me to be openly vulnerable and that I tend to be judgmental (supported with annoying, inaccurate and totally unfair anecdotes). This is, of course, what Delia meant when she said my opportunity is to learn how to “dive down” rather than to “pop up” and also what my therapist meant when she observed that I sounded “heady.”

I do easily lead with my head, and I’m basically terrified of being fully present in my body and emotions while in the company of others, but the message coming from all around me is clear: these capacities need to be nurtured and brought forth.

Giant Peeve Fest

Friday night I was on call at the other campus and, before rounding, read through Anita’s evaluation of me for the third unit of our four-unit clinical pastoral education program. I felt extremely angry at her after I read it. Her words of praise seemed faint or were my very own words, quoted from my self-evaluation, whereas the criticisms were lovingly detailed, it seemed to me.

I was so furious I decided to tell her that I no longer trusted her and would only discuss this vile document with another supervisor present. I decided never to tell her anything important or personal again. I wrote down all of my counter-arguments and all of the points I planned to nitpick over in classic Bugwalk style. Quite a number of hours were spent in this mode, with tremendous suffering resulting: my own. It even briefly crossed my mind to quit the whole program, which even in the midst of my giant peeve fest I was able to recognize as an overreaction.

I went to bed at 9:30 and, defiant, remained there until 9:30 Saturday morning. A couple of housekeepers poked their heads in, and I said, a little too loudly, “I’m still sleeping.” When I finally got up, I was still in a state of anguish and decided that I had better meditate for 45 minutes instead of the token 10 minutes I usually do when on call. That was the first time I’d ever meditated for 45 minutes while on call, and probably the last.

I went to the cafeteria for breakfast—two pieces of pepperoni pizza and green tea—and then to the student office, where one of the housekeepers was vacuuming. I said, “Good morning,” but I didn’t make eye contact; there was some residue from my earlier irritation with her and her colleague. Thank goodness, before she left the room I came to my senses, at least in that regard, and greeted her again, more warmly. I also apologized for keeping her and her colleague waiting. (They do not have to clean at any particular time, but I wanted to show extra respect.) She turned out to be this very adorable person, with a charming smile and even a charming name. (When I saw the other housekeeper later, I also apologized to her and received another winning smile.) Those might have been my nicest interactions of the whole day, since my bad attitude otherwise lasted all day.

I reread the offending evaluation several more times to see if it would start to look less bad, but it didn’t, really. At the end of the day, I walked all the way home, which took about an hour. I stopped at Whole Foods for three delicious slices of cheese pizza (making it a five-pieces-of-pizza day), which I ate while walking through the burning hot afternoon.

I called Sam after I got home and he said he hadn’t read his evaluation yet, but speculated that maybe they make a point of being kind of harsh after the third unit. That actually makes sense. My first evaluation, written by Jodie, was balanced and gentle. The second, written by Anita herself, was extremely glowing, which is why I was all the more surprised Friday night. There are two sets of “outcomes” we’re supposed to meet in the course of the year, one for each six months. It is possible that—OK, maybe this is paranoid—they purposely give you a great review after unit two, to put a burst of wind in your sails, and then let you have it after unit three, since unit four is your last chance to meet all of the remaining outcomes.

On Sunday, Tom and I went to Berkeley to meet Ann for lunch at Au Coquelet and the stage production of Monsoon Wedding at Berkeley Rep. Alas, Ann got stuck in terrible traffic and decided to head back to Sacramento. I’m sorry she didn’t make it. The show was just fabulous; she would have loved it. When we got to our seats, there was a card on one armrest thanking Ann for her support of Berkeley Rep and inviting her to have refreshments in the “VIP Lounge” at intermission, so Tom and I went up there. Now that I’m probably permanently in economy mode, I really appreciate, even more than before, getting to go to Berkeley Rep, and getting to visit the VIP Lounge, both due to Ann’s generosity.

Over the course of the day, I heard myself speaking to Tom in an uncharacteristically low-key and relaxed way: where did that come from? Tom is so extremely easygoing that I easily go right to the other extreme around him: tense and controlling. I recognized that gentle, quiet voice as belonging to one of the palliative care social workers, who had a huge effect on me. I include her in my metta meditation every single day just so I don’t forget her.

I felt tearful—exactly why, I’m not sure—at the end of the play, so full of color and song and giant emotions. I picked a fake Diwali marigold off the floor and brought it home as a memento.

I have written here about my 40-year friend, Chantal, opposite from me in every way. We haven’t spoken to each other in months for reasons outside the scope of this post. I let her birthday go by, and she did the same when mine came. But I could not let the anniversary of her mother’s death pass, so I sent an email on that day saying I was thinking of both of them. After a couple of days, I realized she hadn’t answered. Yikes! I felt kind of mournful about it. When I saw her note in the inbox Sunday night, I was pretty sure it was going to say, “You and I just don’t have enough in common. Goodbye forever!”

But it said this:

Bugwalk,
Thank you so much for your sweet note. One of the things that gets to me is thinking how few people remember, but you did. It means so much.
Thank you again.
Love,
Chantal


I wrote back:

Dear Chantal,

Oh, thank you! I thought maybe this note was going to say “Get lost!” I’m relieved and touched that it didn’t say that. Thank you. I hope we’ll get things straightened out one of these days. I always trust your good heart.

Love,
Bugwalk


She replied:

Dearest Bugwalk,
As I do yours. More things unite us rather than separate us.
Love,
Chantal

The Indefatigable Advocate

My cohort numbers 14 students, and we have had for several months three additional students who are at the hospital part-time. Now we have been joined by four summer students who are with us full-time. We love all of them, because they all take on-call shifts. They also are all great people, of course. The summer folks are mostly or all people in divinity school, which requires one unit of clinical pastoral education, which they typically do in the summer. There is a Lutheran, a Methodist, a Catholic, and a Unitarian Universalist. (Like, real religions.)

Fortunately, I was using the computer in the student office last Tuesday when I heard one of the summer students confirming a name someone was saying to him on the phone: my patient! He had just died, and Patient Relations was calling for help, as the patient’s mother was very upset. That was not surprising, after all these weeks of denial. I rushed to his room and found him in his bed, his mother and a couple of other relatives at his side. When I walked in, his mother said, “Thank you for coming. He loved you.” Despite what Patient Relations had said, she was perfectly, completely calm.

After 30 minutes, I left. They were coming to take his body in 15 minutes, and I wanted his family to have the last minutes alone with him. His mother walked out with me, heading to a restroom. She said to me, “Everyone thought I was in denial, but I wasn’t. He asked me to serve as his advocate, and that’s what I did.” She said that just a couple of days earlier, he had said to her, “Keep fighting, Mom.” I now recalled that one day she had given me a significant clue that she knew the truth all along: “If there is even a one percent chance, I have to believe in that one percent.”

I was touched and humbled by her final words to me. This woman, facing a parent’s worst nightmare, was willing to let the entire staff—including me—think she was nuts in order to do what she felt she had promised her son. And he, for his part, generously let her do her thing in her own way.

There is a palliative care meeting every week at another campus of the Truly Wonderful Medical Center. I am planning to attend as often as possible in this final unit, and went for the first time last week. There were 20 or so people there, half of them known to me. At the beginning, someone read a poem, and then we each introduced ourselves, and then the patients who had died in the past week were discussed by those in the room who had cared for them, often with tears. My patient wasn’t mentioned, so when they asked if there were others we should remember, I shared about him, and about what his mother said that last day. Two of the palliative care doctors added their thoughts. One said that the patient, despite being so young, never acted as if he felt entitled to live longer. She said he didn’t seem to think “Why me?” but rather “There is no reason this should not be happening to me.”

I now think that, in fact, he had a perfect death, only about 70 years too soon. He spent his final weeks listening to the voice of his mother, who never appeared tired or discouraged or in any way defeated. This remarkable woman saw her child safely every inch of the way to the finish line. He died peacefully, unworried.

A few days ago, Delia presented a didactic to us on moral distress, which she said there is a lot of in palliative care: the patient doesn’t want further treatment, but her family really, really wants that, for instance. She asked if we had examples and I mentioned my patient and my earlier worry that he was not getting to talk about his death. Delia said to our whole group, “I didn’t do such a good job with his mother. Bugwalk, you did a good job with her. Tell us how you did that.”

I said that I was aware of my judgments and opinions, but that I always remembered that, at root, she was a mother about to lose her child, and so I treated her with great warmth, and I also made sure to check in with her son periodically to see what he needed. I shared what she told me after he died, and what a good lesson it was that I don’t know what I don’t know.

After the didactic, Delia and I hugged each other and I said, “Thank you for your kind words,” and she said, “Thank you for your kind work.”

Looking North


This is the view to the north from the north edge of the property my father lived on as a child. He says it is much the same now as it was then.

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Diving Down and Popping Up

In late May, I had a young palliative care patient with a very serious diagnosis whose mother had come from across the country to be with him. The mother seemed very composed, even upbeat, but announced over and over that the patient had been misdiagnosed, that he did not have such-and-such illness, that the only reason he seemed ill was the medication he was receiving. Meanwhile, the patient himself, in his 20s, was obviously in rapid decline.

One day I asked the patient if I could speak to him alone for ten seconds. A few days prior, I had asked him when the three of us were together if he was on the same page as his mother and he had replied, “Not really.” When we were alone, I asked if he had someone to talk to about all his feelings and thoughts, and he assured me that he did, after which I wrapped up our conversation, so as not to keep his mother waiting.

Delia said later that this was a missed opportunity—that he had given me an opening. She said I should not have specified how long our time alone was going to be, and rather than asking him a yes/no question, I could have asked, “What is it like not to be on the same page as your mother?” or “How are you doing with that?” In any event, Delia thinks that particular yes/no question is never a good one: what if the person doesn’t have anyone to talk to? One might better ask, “What is helping you cope with this situation?”

When I asked her for feedback on the whole rotation, she said, “You’re a good chaplain. You’re a good listener. You’re very kind. You’re well trained. I’m confident in sending you to care for patients. You’re good to go as a chaplain. I’ve watched you be able to make relationships with all different types of people—that’s a strength.”

She said my opportunity is to “dive down” when patients want to talk about their feelings rather than to “pop up.” She said this is either my personal long-term work—it indeed is, which I told her—or else it’s graduate-level post-CPE development. She said that going for feelings is where the gold is, and that it makes our work more satisfying. She said what’s great about this work is the constant opportunities for personal growth.

After the rotation was over, I went to Michigan for a week to visit my parents, which was idyllic. We sat on their back deck and enjoyed the greenery and birds and squirrels, and we watched TV. (Alas, Rachel Maddow was out sick, so I did not get my semi-annual fix.) I had lunch with Amy at Seva and with Ginny at Café Zola and at Haab’s with my uncle and his wife. My father and I went on a field trip to his ancestral home, west of Ann Arbor, currently a pile of rubble. I was the expedition photographer. The new owner of the property was there and said it was fine for us to walk around the lot; he said he is going to turn the house back into the charming farmhouse it once was. We leaned in a window and I took a photo of a patch of wooden floor where I last saw my grandmother, 50 years ago, give or take. Sixty-five years ago, my grandmother sold half her lot to a young couple, who proved to be next door working in their immaculate yard. They are now in their 80s. We visited with them for a while.


My sister came over three times, including the night before I left, when she mentioned that she had enjoyed Big Little Lies. We watched the first episode, and then she went home, and my parents and I stayed up until 2 a.m. watching all seven episodes. My shuttle came just after 6 a.m. the next morning, but both of my parents got up to say goodbye. (Proving that they must be my real parents, which doesn’t necessarily mean biological parents, though they are also that. Sometimes when Dad does something particularly nice, my mother says, “Aww. He must be your real father.”)

I had asked Delia if it would be all right if I continued to visit my patient even though I was no longer on palliative care, and she said that would be fine, so after I was back, I went to see him. His mother, as always, did 99 percent of the talking, and 100 percent of what she had to say was that the hospital was overmedicating her son, and that she didn’t believe he had what he had been diagnosed with, etc. He interrupted quietly to say, “I do believe I have [such-and-such].” It was increasingly distressing to me that this lovely person was evidently going to reach the very end of his life without being able to have one direct conversation with his mother about it.

Despite my strong misgivings about his mother’s view of things, I was always very friendly to her, and she said one day that she thought of me as a friend. The patient celebrated his birthday early in June and I went to his room to sing “Happy Birthday” to him. After I left, it occurred to me that he might get a kick out of knowing that my birthday was the very next day, so I went back to tell them that.

One day I was talking to his mother outside his room and Delia came along with my peer who is doing the palliative care rotation in this final unit, the same thing I did in the third unit. Delia said to the mother, “I hear he’s not doing well,” and she got agitated and angry: “That is not true! He’s getting better.” Delia told me later that she hadn’t realized that was the patient’s mother.

Mano a Mano

Late in May, one of my fellow students at the other campus said, “I’m going to the symphony tonight.”

“Who’s playing?” asked one of his colleagues.

The first student answered, drily and after a pause, “The San Francisco Symphony orchestra.”

A nearby supervisor piped up: “Who are they playing against?”

Tuesday, June 06, 2017

My Official Parents

A couple of months ago, I asked my mother if she and Dad can adopt me, so I can have health insurance after CPE ends. Then I remembered that they’re already my official parents, and it doesn’t make any difference when it comes to health insurance. But maybe it would be nice to have a ritual, like when people renew their wedding vows, in which I can affirm that if I were choosing my parents right now, I’d still choose them.

Saturday, May 20, 2017

Euthanasia

Today while on call I went to see a patient who, in her ICU bed, reached for my hand immediately. She looked very uncomfortable and, upon being asked, said she has no friends or family visiting her. Her nurse chimed in: “Her husband visits.”

“Oh, your husband is here. That must be a comfort.” Normally I would not have said the second sentence, but the patient was having a lot of difficulty speaking, so I was trying to save her some trouble. She had the energy to roll her eyes, though, which she now did.

“It is not a comfort to have your husband here?”

She shook her head no. We continued to visit, and I offered prayers, and then she suddenly asked, “What about euthanasia?”

“You’re interested in the End of Life Options Act?”

“Is it legal?”

“Yes, it is. Would you like me to tell your doctors that you’d like to discuss it?” She nodded yes.

Later in the visit, after saying how much pain she is in, she asked if God would be angry at her if she took her own life. Normally I would ask for her own views, but again, due to the laboriousness of her speech, I decided just to offer my opinion. I said that I think God loves her, and does not want her to suffer, and could never be angry at her. “What do you think?” I added.

“I think God doesn’t want me to suffer,” she said. “It would be good if you could pray.”

I already had prayed, so this suggested that maybe the patient was having some confusion. When I left, I asked her nurse who I should let know about her request. She said I should tell the transplant team, and they could tell the patient’s medical team. So I paged the on-call transplant person and he called right back and I told him that the patient is interested in discussing the End of Life Options Act, and he thanked me heartily.

Later I ran into one of the palliative care doctors, also on call this weekend, and he said that it wasn’t necessarily wrong that I had done that (which pretty much told me it was wrong that I had done that), but that his approach is to find out more: why is the patient interested in this? Maybe she has a problem that can be solved. Maybe it is a matter of managing symptoms. He gently said there is the possibility that the transplant team will overreact, and then of course I felt terrible that in seeking to help this person, I may have cost her an organ. Though the doctor went on to say that it’s kind of moot, because if the person is so ill that she is never going to leave the hospital, she can’t exercise that right, anyway, because the hospital doesn’t allow it to be done on the premises. He also said that when we tell others, it’s important to provide context. The patient told me she is in pain, but I didn’t mention that to the transplant team guy.

I hope they don’t just cross the patient’s name off their list after a 20-second conversation. I hope there is plenty of discussion with the patient and time for the truth to emerge and best choices to be made.

Thursday, May 18, 2017

Ripping the Night Out of the Arms of the Sun

The next visit today was to a woman with breast cancer. This was just me and the palliative care doctor. He talked to her about her pain, and then she looked at my badge and asked, “And what can you do for me?” I told her what chaplains do and she requested a prayer. I prayed for her (and for the doctor, while I was at it), and when I was done, tears were streaming down her face, and she said, “Prayer is the only thing that really helps. Prayer is what helps.”

Next it was off to a palliative care department meeting, where there were about 25 people, of whom I was pleased to note I could name 18 or 19. Then another member of my small group and I took a shuttle to the other campus to spend the afternoon presenting our final self-evaluations. We did this in a small room with a huge window that looks west. First, Anita treated us to lunch from the taqueria truck outside. The dietician said I could have a slip once a week, so I requested a fish and chips burrito, which besides fish contained French fries, avocado, and chipotle sauce and was all I had hoped it would be. (I’m paying for it now, but it was worth it.)

The group I was in in the first half of the program had a steady trickle of conflicts, some involving me, some not. Not very fun, but we learned a lot and felt quite close to each other in the end. My new group has had no conflicts whatsoever. It is an excellent group, with young people and old people, white people and people of color. Sam is in my group, and an older woman, and a very young man (if he were 30 years older or I were 30 years younger, and if he weren’t moving across the country to study something very brainy in the fall, I would ask him out on a date the day after the program ends—he is a completely splendid person), and the new guy. The latter is extremely warm and kind, and also extremely intense. He listens in such an avid way that it can be off-putting.

When we do our self-evaluations, we also write about our relationship with each peer and affirm one of his or her strengths and offer at least one critique. In my critique of the new guy, I said that the way he listens sometimes makes me feel shy about sharing. In his “critique” of me, he offered one glowing compliment after the other, and right then, any lingering reservations about him finally evaporated—I can’t resist him any more—and our group is now officially one big lovefest. I will miss these people so much—the on-call schedule covering the rest of the year has now been published—but they will always, always be with me.

I listened this evening to Chris Cornell’s solo albums Carry On and Euphoria Morning. And now I know that he committed suicide. He must have been in horrendous pain, all alone in his last moments.

Home Visits! Yay!

This morning, I was delighted to hear more details about Robert Mueller being appointed as special counsel to lead the Russia-and-Trump investigation. Exuberant, in fact. Then I heard two seconds of music between segments which I knew was Soundgarden, and then I heard someone say something about Chris Cornell. “Must be his birthday,” I thought, and was staggered when I learned he had “died suddenly” after a concert in Detroit.

I arrived at work in tears, clutching my copy of Superunknown. Sam, about to lead the morning meeting, turned on “Fell on Black Days” loud, and Jodie, one of our supervisors, came in and offered her condolences. I love working where crying when you’re sad is expected, and whatever you’re sad about isn’t judged. “It’s hard when we lose our poets,” she commiserated. There are many musicians I love for many reasons, but I think he was my most beloved, for the way he so transparently and vulnerably grieved and suffered and raged and comforted.

Many years ago, I took the train from San Francisco to Michigan to go with a relative on a round-trip drive across the country. We drove back to San Francisco in her car, and were just south of the city on 101 when I heard “Fell on Black Days” for the first time. I drove straight to a record store to get Superunknown, and on our drive back to Michigan—I’m not sure we spent even one night in San Francisco before turning around—we listened to it over and over and over.

Theoretically, we were taking turns choosing CDs, but every time it was my relative’s turn, I said, “I have an idea: Why don’t we listen to Soundgarden?!” She, such a good sport, said, “Yes, let’s listen to Soundgarden.” So we heard Superunknown from beginning to end however many times you can hear it while driving 2,359 miles. Then, for the next year or so, every time someone telephoned me and asked, “What are you up to?”, the answer was, “I’m listening to Soundgarden.”

Right after morning meeting started today, there was an urgent call from one of the ICUs, and I went to spend an hour with a family who had lost a member. I watched a mother looking at her daughter for the very last time. She did up the snaps on her daughter’s hospital gown sleeve and I thought she had to be picturing herself doing the same years ago for a tiny child, back at the beginning and now—how can it have come so soon?—at the end.

My intention until now has been to be a hospital chaplain. I am planning to go to school over the coming two years, and since the place where I’ll be studying requires students to volunteer, I was planning to volunteer at the county hospital, just because I want to, and also at what I will call the Buddhist Hospice, not its real name. This is all toward becoming a board-certified chaplain, so I can get a job at a hospital.

I had thought that, while I’m in school, I would look for a couple of days’ work per week, at the hospital where I did clinical pastoral education last summer, or at a hospice. But I was sure I didn’t want to be a full-time hospice chaplain. I don’t have a car and don’t want one, and I am a little scared of driving all over the Bay Area and presenting myself at the front doors of strangers. I’m not scared of the patients themselves, but family situations come in all varieties.

However, today, for the umpteenth time, I was visiting a palliative care patient with the team, and our doctor was explaining the main two things palliative care offers: help managing symptoms, and help sorting through medical information to make decisions. This patient, of his own volition, suddenly asked, “What about hospice?” and so we talked about that, and right there, my life suddenly changed direction. Suddenly it was clear to me: I have to, I wish to, I must work in hospice. And maybe in a hospital later, but first I am going to work in hospice. I will get a little car if I have to, and I will drive around the Bay Area. I am also even going to break down and get a smart phone, since people mainly communicate at work via text messages.

Therefore, there is no point in volunteering at the Buddhist Hospice, since I can probably get paid work as hospice chaplain and embark on the next phase of my career right away. I told all this to Jodie and she said, “I endorse your plan!” She said I can easily get work as a hospice chaplain after a year of CPE. She was chagrined when she remembered I don’t have my master’s degree yet (and never will; I’m going to get an equivalent that will suffice for chaplain certification).

I ran into our palliative care doctor who works at the outpatient clinic, who is the dearest, sweetest, absolutely loveliest person (also a Buddhist meditator), and she was excited for me and said, “Yay! Home visits!” So, yay, home visits!

Stay Focused

I saw a doctor at the student health center on Wednesday who said that colon cancer (another possible match for my symptoms) grows very slowly, over eight to ten years, so unless a doctor overlooks a polyp, as long as you do your regularly scheduled colonoscopies, there really shouldn’t be any way to get colon cancer. However, she said she thinks our illnesses are “scheduled” and happen according to “God’s will.” (“Did a doctor really just say that to me?” I wondered.) She also doesn’t think illness is necessarily a bad thing—it’s a challenge or negativity we need to deal with. She did an exam and discovered nothing amiss, but since my bloating has been so persistent, she ordered an ultrasound.

As I left, she said crisply, “Stay focused.”

I went straight to the receptionist and said, “Can I say a thing about Dr. S.?”

“Yes,” she said, sounding wary.

“I love her!” The receptionist agreed she is lovable.

I told a peer about this later. She interrupted me to ask the doctor’s name and said she had seen the same doctor and did not like her, because she said a lot of unexpected things, which is exactly what I did like about her. My peer speculated that maybe she saves up all her unorthodox remarks for chaplains.

Right after I saw the doctor, I saw the dietician again and we adjusted the plan of action. She once had the same symptoms I have, which is reassuring. She said most people feel better in two weeks, but for others, it takes as long as six weeks, and if it’s not better in six weeks, maybe it’s not IBS.

What We Still Can Do

Recently I visited a patient whose husband was asleep in her room. He woke up a few minutes later, pulled the earplugs out of his ears, and asked, sounding almost angry, “Who is this person and why are you telling her about that?” The visit went on, with all three of us talking, and at the end, he said, “Say, could I ask your advice about something?” That was rather gratifying.

I have been eating fewer and fewer high-FODMAP foods, per the dietician at the student health center, and arrived at a point where I was completely off them. The effect on my symptoms has been that they have gotten worse and worse, with bloating underway as soon as I take a small bite of any food whatsoever. I was by several days ago three-quarters convinced that I have ovarian cancer, which has symptoms identical to IBS.

There is so much cancer in my family, including three cases in my immediate family, two of which were estrogen-related, one of which was my own case of cancer, that this suspicion easily arises. Probably it’s not and in two months, everything will be fine. But if it is, rather than worry about that (especially since this diagnosis is not exactly in hand), I can be grateful that I got to live for as many years as I have.

Hanging around with the palliative care team for these several weeks has altered how I think about what I would do if I got a terminal diagnosis. I always thought I would at least start with the standard treatments and see how far I could get, but now I’m not sure I would do that. I think now that I would put much more importance on quality of life and maybe not do any treatment at all, depending on the trade-offs. In the meantime, I’m grateful that I’m alive right now, that I could get out of bed this morning and put on my socks without help and cook my own breakfast.

Gratitude is also helping immensely when it comes to F. Since our breakup, I have so often remembered this or that lovely moment and felt anguished that there’s no way to have that moment, or one like it, ever again. At least, not with him. On the night I met the anxious and sad woman in the emergency department, I decided to start practicing gratitude for what I used to have instead of longing for it to come back. Maybe one day I will develop dementia and be unable to choose where to place my focus. Having the ability to do that at the moment is a gift. Now when I think of F., I say silently, “Thank you for two splendid years! How wonderful that I got to have that experience. Thank you so much for all you gave me.” This has been very helpful, on the whole; there are still moments of searing pain. It occurred to me today that it is in working with inevitable sufferings that we learn about optional suffering. F. leaving was the former. Brooding about it forever would be the latter.

Darned if I didn’t feel queasy again in a patient room on Monday. Focusing on my feet didn’t really help and nor did focusing on my breath. The most helpful thing was just to notice the bad feeling in my stomach and tell myself silently, “Just this moment, just this moment.” Later Jodie said it’s also perfectly fine to step out of the room briefly and return; she said sometimes that can reset things. It started to happen again today, and this time I reminded myself that this can also happen when I’m sitting in meditation and that if I can get through it there, I can get through it anywhere (in theory). I made my field of awareness large and expansive, and surveyed the various things within it: these sights, these sounds, this smell, this taste, these internal and external sensations. And then I put my attention on awareness itself, and the experience then seemed entirely manageable.

More and more, it seems to me that life is what we’ve lost plus what we still can do. One by one, the things in the second category move into the first: Last year, I could get things out of the bottom cupboards in my kitchen; now I can’t bend down that far. Last month, I could get out of bed. Two weeks ago, I could still see at least dark and light. Every single thing I still can do is something to celebrate—every single thing. Because every last one of them will go away.

Terminal Delirium

Lately we had a training session on signs and symptoms associated with dying. I had never realized what the difference between signs and symptoms is: Signs are what doctors or others observe. Symptoms are what people feel.

Some signs associated with dying are:

  • Respiratory compromise, or irregular breathing.
  • The person’s eyes are open and staring. This may happen coincident with mandibular breathing (see below), and death may be about five hours away.
  • There is possible delirium due to decreased blood and therefore less oxygen to brain. This is specifically “terminal delirium” and is identified in retrospect: If the person dies before coming out of it, it was terminal delirium.
  • Less eating and drinking.
  • Decreased socialization. Person turns inward, and touch may be unwelcome.
  • Weakness and fatigue.

In the last 48 hours of life, these may be seen:
  • Mandibular breathing: jaw slack, mouth open. Sometimes you see someone’s head all wrapped up; this is to keep her mouth from hanging open.
  • Death rattle. Pharyngeal muscles get weak and secretions pool. Death is a median 57 hours away.
  • Cyanosis: cool/bluish extremities, often in hands. Mottling of legs. Death about 2.5 hours away.
  • Lost radial (wrist) pulse. Seen at the same time as cyanosis. Death about 2.5 hours away.

As for symptoms, the dying person may experience shortness of breath, pain (depending on what she is dying of), nausea, dry mouth (due to breathing with mouth open), spiritual distress.

I heard a palliative care doctor tell a patient that, while other teams often think about pain in terms of intensity (“What number is your pain from one to ten?”), palliative care team members think about function: “What are you unable to do because of your pain?”

We recently had a didactic on family meetings—gatherings of the care team plus the patient’s family, with or without the patient, depending on her preferences and how decisions are made in that family. This varies culturally.

Chaplains generally don’t run these meetings. They are usually led by a doctor, but a chaplain may have the closest relationship with the patient and the best understanding of the patient and her emotions. Meetings have both informational and emotional bands, and are to build relationships and work toward making decisions about care. If a meeting shows no sign of ending, someone can say something like, “We’ve been meeting for a while—I wonder if there are decisions we need to make today.” The social worker presenting this didactic estimated that the “executive function” (the ability to make decisions) of a patient or family member goes down by one-third as soon as the person steps into the hospital.

Delia explained to me some of the downsides of providing nutrition via a tube: it prolongs the dying process, is uncomfortable for the patient, and leads to “third spacing” (fluid ending up where it normally isn’t in the body and where it should not be). It can even cause pneumonia due to aspiration of the substance being delivered, even though it’s coming in through a tube.

In all these weeks of my being on the palliative care rotation, Delia has observed me conducting a visit with a patient only a couple of times. I have often gone on my own, or observed her, or gone on a team visit and watched her or a doctor or social worker in action. The other day, she observed me as I visited a patient who was waiting for life-or-death news after a test to be performed later that day. He was in tears.

I spent 15 or 20 minutes with him, and afterward, Delia shared her notes with me. She pointed out a couple of things she liked, but on the whole, she felt I was not willing to journey with him emotionally, as evidenced by the fact that I changed the subject a couple of times. (I can explain why I did that, but it would get into rather arcane details of our training, so I will just say that, in the moment, I thought I was doing the right thing.) Delia said she thinks about diving down versus popping up, and she said I kept popping up.

Delia has said in the past that the three most important things a chaplain does, in this order, are to be present, to listen, and to affirm strengths. However, when the patient is having feelings is not the time to affirm strengths, and she also said not to strain for things to affirm. If I do happen to observe strengths, I can mention them at the end of the visit: “This is very difficult and you’re coping very well.”

At this point, I was somewhat stricken. I felt I’d failed this man utterly and wanted to rush back into his room to try again, but Delia said, “What you did was acceptable. I’m trying to nudge you up a level. He felt cared for. Don’t beat yourself up over it.” She also said, “I’m being tough on you. Hope that’s OK. You can take it. You’re mature enough.”

I was extremely relieved and also delighted when, the next day, Delia said, “Mr. B. has been approved for a transplant.”

Monday, May 08, 2017

My Worst Nightmare

This past weekend on call, I came face to face on Saturday night with a patient facing the situation that I myself most dread: old, impoverished, alone, with friend after friend dying. In severe physical pain, unable to care for herself. Terribly anxious. She said that one of her caregivers tells her repeatedly that she is going to lose her Section 8 housing and end up homeless, her worst fear. She detailed loss after loss: her departed friends, her estranged son, the daughter that moved far away, the fiancé who died decades ago, the deity who no longer seems to be there. I sat with her for an hour holding her hand; her nails were painted bright red and her hair was freshly dyed blonde: in some ways, she has not given up. She mentioned that having a glass of wine helps with her pain and anxiety.

After I left her, I briefly considered looking for another tech job. But, no, I am on a completely different path and get continual affirmation that it is right for me. I may also end up physically ill, broke and in unstable housing, but I would at least like to avoid ending up engulfed in sorrow, complaints and negativity. Back in the sleeping room, I fell asleep doing metta practice for this patient. I believe every single second of practicing gratitude or goodwill is beneficial, and may even lead to fewer external losses. It is easy to imagine people avoiding a person who is focused exclusively on what is tragic and horrible. I do believe our greatest wealth is our friendships. As Delia says, “Connection is protection.”

I also decided to redouble my efforts to let go of F. I haven’t seen him in six months, but it seems as if I see him out of the corner of my eye all the time. I still can’t quite believe he is gone, but I don’t want to be brooding about this 25 years from now, so I will try to entertain fewer thoughts of him. Maybe one of these days I’ll even delete the final batch of his voice mails. I don’t listen to them often, but I like knowing I can hear his voice if I want to.

I must say, I felt a lot better (on my own behalf, that is) when I charted my visit with the sad and scared patient the next morning and saw that it’s not just sheer bad luck that has overcome her; she also has a longstanding substance abuse problem.

When I arrived for this shift on Saturday, the departing chaplain said he’d gotten precisely one page. He must have tampered with the pager before he handed it to me, because I got 17 pages, including a Code Blue, two deaths, and a mistaken page from a doctor, which came at 11:30 p.m., after I was asleep.

The deaths were both on Sunday, the first and last visits of the day. One was a woman barely into her 30s. The other was a patient who had come to the hospital to receive a new organ. His family expected a new beginning, not his sudden death during surgery. I explained to them that they were welcome to see their loved one, but that he would look exactly as at the moment of death, with any tubes still in place. Then I escorted them to the viewing room near the morgue and hung out there for an hour or so. Normally we prefer to do viewings during the work week, and we try to limit them to 30 minutes, but since this was such a terrible shock, I was instructed to let them take all the time they wanted. For part of the time, I hung out in the hallway with the two youngest members of the family, whose parents didn’t want them to see the departed relative. Later, one of the parents changed his mind and his 10-year-old went into the viewing room. I’m sure he will never forget this day. Of course, none of them will.

An Injury that Can’t Be Felt

Last week I got to watch our per diem palliative care chaplain in action and was very impressed. Her bedside manner was lovely: relaxed, warm, and even affectionate without seeming (to me) intrusive. The patient stated clearly that he had no religious or spiritual beliefs. I thought the chaplain conducted the conversation very skillfully, with clear comprehension of what was important in what the patient was saying and fruitful use of open-ended questions. I was surprised that she returned a couple of times to the topic of spirituality / religion, asking what had become of the patient’s childhood faith. Late in the conversation, she brought it up again, and I wondered if this was going a bit too far, but, lo and behold, the patient recounted two extremely powerful experiences featuring priests, crying while telling both stories. These were the deepest and most moving parts of the visit.

Delia and I discussed again my trip to the morgue, and the unexpected sight I saw there (there is a post mentioning this below). She spelled out clearly that, while we might at times feel upset when experiencing secondary trauma, we also might not perceive anything amiss at all, though we might have clues in the form of disturbed sleep, or recurring images, or the reluctance to go to a certain place. She said it is important to be alert to the fact that we might have an interior injury we cannot feel, and that we should seek first aid—talk to someone else—sooner rather than later. I realized I need to be more alert about situations that could potentially cause secondary trauma, to take this seriously.

This caused me to wonder about any trauma associated with being with dead people. At this point, I have probably been with 20-25 dead people, and it always seems like kind of a big deal. It doesn’t seem particularly emotionally upsetting, and I don’t have bad dreams about it, but I can easily bring back to mind the sight of certain dead people (while I can’t remember the appearance of others at all). I wonder if it is slightly traumatizing, and if I should make a point of mentioning such moments to my supervisor or other supportive person, just in case.

On Friday, there was a Bay Area conference that I got to attend with Delia and several other people from work. Palliative care doctors, social workers, nurses and chaplains from the Truly Wonderful Medical Center (where I am a CPE student), the V.A., and Zuckerberg San Francisco General Hospital met at a funeral home, crematory and cemetery in Mill Valley for a day of improv games, getting to know each other, writing exercises, and a grief ritual at the end of the day. The place was really beautiful, and the whole day was a nice treat. After lunch, Delia led a rest meditation which starts with the instruction to find a still, blank place in what we see with our eyes closed and rest our attention there. I need to ask her what the other instructions are, because I fell soundly asleep right after she said that.

In God’s Hands

On call at the other campus a week ago, I bumped into a horrendously sad situation, a three-month old who was born in evident perfect health and who days before suddenly had a fever, vomiting, and a swelling head. This seems even worse than having a baby born ill, because you assume you will have this child for the rest of your life. This baby’s parents are very young, newly arrived from another country. I got back to the student office to chart my visit with them and said aloud to myself, “This really sucks. I don’t want these people’s baby to die.” I have never before called the on-call supervisor to debrief about a sad visit, and this was lately pointed out as if it’s a minor failing of some sort, so—the Enneagram One likes to check off all the items correctly—I went ahead and called the on-call supervisor, and I cried while I was telling her about this young family, and she cried with me.

We had an interesting presentation last week from a member of the ethics committee. Someone from that committee is available 24 hours a day, and can be contacted directly by patients or staff members. This fellow said that sometimes family members can fixate on, for instance, sodium levels, and not consider the big picture. One important ethics question is whether a treatment has become or would be “medically ineffective.” Because doctors rotate in and out of hospital units, a nurse is often the one to feel that a patient has suffered too much and to call ethics. Ethics, we have been told, is not about right and wrong, but about balancing competing values.

We learned that, if she feels pressured by the family, a doctor may do something she doesn’t want to do simply because it takes longer to say no than to say yes. One way to decline to provide a treatment is simply to say, “No. We’re not going to do that.” The physician can also offer alternatives based on, in order of preference: a POLST (this has the most authority; more on this below), the person’s DPOA (durable power of attorney), a previously filled out Advance Directive, or considering the “best interests” of the patient as expressed by someone close to him or her. This can be a neighbor, even if a relative exists, if the neighbor would know more about what the patient wants. Finally, if all else fails, the medical team can make the decision, preferably unanimously.

As doctors don’t like to use the word “God” and often don’t believe in God, the physician may need a chaplain’s permission and/or encouragement to use this word with the patient or her family members. Very frequently, doctors say that further treatment is futile and will even cause suffering to the patient, and the family says, “It’s in God’s hands.” (Which could theoretically mean that treatment should be halted and God will take it from there, but means in all cases that if God wants the treatment changed, He will personally see to it.) If a doctor could assure the devout family that God would not be angry with them for suspending ineffective treatment, that might be helpful in some cases.

Doctors may also need help using the word “death.” A fellow student recalled hearing a doctor tell a Spanish-speaking family that their loved one was “passing on,” a term they clearly didn’t understand and which, as far as my peer could tell, sounded positive to them. “Passing on? That sounds nice.” Perhaps it suggested to them an evening stroll.

The POLST form lists Physician Orders for Life-Sustaining Treatment, and is a fairly blunt instrument, covering just DNR/DNI status and nutrition wishes. I think. I’m in clinical pastoral education, so I don’t have time to go look at one online, but I’ve been present when one was filled out. Actually, I have one around here somewhere, but I don’t have time to go find it. The reason it’s the most authoritative is that, as an actual physician order, it’s something any medical team should accept.

(DNR: Do Not Resuscitate. The most common form of this is CPR: violent chest compressions. Your odds of ever leaving the hospital after CPR are low. DNI: Do Not Intubate, for the purpose of receiving oxygen. Once you are intubated, you very likely will remain that way for the rest of your life, and will either die with the tube sticking out of your mouth, nose or the hole in your neck, or you will die seconds after the tube is removed. There are also cases where a person is intubated briefly, successfully treated, and then lives on in good health for decades, but if the person already has a terminal illness, a DNR/DNI code status might be a very wise choice.)

Finally, the ethics committee member talked about two varieties of the situation where family members have to be told that no more curative care will be offered and that comfort care will be initiated:

1) Paternalistic: “We’re going to extubate tomorrow.” The family disagrees, but understands.

2) A unilateral decision by the medical care team, which requires an ethics consultation. The family does not understand and is opposed. The transition would typically be scheduled for a week later. This sounds terrible, but sometimes can actually be good, in the case of families who might personally agree with transitioning to comfort care but feel obligated by cultural norms to try every last medical option. This allows them to say, “We didn’t want this, but they insisted.”

My Old Nemesis

Monday morning in rounds two weeks ago, we heard the tale of a horrible accident suffered by a patient. “Blech,” we thought, or at least, I did. Delia and I went to visit this patient, who was quite charming and who recounted in detail what had happened. For the first time in a while, I felt queasy and overheated and mainly that I really, really needed to leave the room. I have never before left a hospital room under such circumstances, and I really didn’t want to do it while on a joint visit with Delia, my palliative care mentor, but it got to the point where it was imperative. I decided to go get the folding chair that is in most rooms and sit down on it, and if the chair was not there, I was just going to depart.

The chair was there, so I unfolded it and brought it to near the patient’s bed. Delia said, “Why, thank you,” and sat down on it, which even in the moment struck me as quite funny. She kindly pointed out a second chair, and I sat down on that. Just sitting down might have done the trick, but fortunately, all this chair-getting had caused the patient to lose her train of thought.

I told Delia about it later and she said I was experiencing secondary trauma. I asked what she does if she hears something she can’t stand to listen to, but she said she has a very high tolerance for that kind of thing. She advised putting my attention my feet; that sort of thing. She also said that if this happens when I’m alone with a patient, it’s fine to say, “I’m sorry, I’m suddenly feeling unwell. I will have to be going.”

We went to offer blessings to two patients who had died that morning, and we went to see a fellow on life support, eyes half open, with a huge hole in the center of his chest with a flimsy piece of material stitched over it as a cover. That kind of thing doesn’t bother me at all. I told Delia that I could have looked at that all day. It’s just hearing someone describe an injury that sometimes gets to me.

About seven weeks ago, something suddenly changed with my intestinal health. I’ll spare you the details, but a couple of weeks ago, I found myself feeling angry at my own body part: “Just do your job, people.” Eventually it occurred to me to try a different tack. Striking a conciliatory tone, I inquired, “Intestines, what’s wrong? What can I do for you?” That very day, while searching online for an answer, I realized what the problem was: Satan! That is, the seitan sandwich—a slab of pure gluten encased between two pieces of gluten-loaded bread—that I have had nearly every single day for lunch at work for eleven straight months. The symptoms listed for an allergy to gluten seemed to match mine quite well.

Accordingly, that evening, I took several loaves of bread and nine packages of seitan—I buy it on sale—up to Tom’s, announcing, “Here’s your shipment.”

“Shipment?” he asked politely.

A few days later, I saw a doctor who thought that gluten could indeed be the culprit, as in a gluten allergy, which she said can grow over time. She said if I had out-and-out celiac disease, I would have been diagnosed with that long ago. She sent me to see a dietician, whom I liked a lot, who said possibly I have irritable bowel syndrome (IBS), specifically IBS-C, the one that comes with the constipation enhancement. (If you must know.) She gave me several pieces of paper about how to follow a low-FODMAPs diet. We agreed that I would get rid of the most glaring high-FODMAP foods in my diet—apples, avocados, mushrooms—and check in after two weeks. If things aren’t better, she will recommend an actual elimination diet.

Accordingly, that night I schlepped two avocados and an apple up to Tom’s. A couple of days later, I realized that gluten itself is a low-FODMAP food. The trace amount of garlic and wheat that are in my particular seitan seemed unlikely to cause major problems, so I went up to Tom’s and demanded my seitan back:
“Unhand my seitan.It’s good to have a very, very easygoing friend who lives right upstairs.

As for Hammett, my beloved cat, he has been steadily losing weight for the past several months and has had all sorts of tests, none of which has found anything. In the end, of course it turned out to be his thyroid, and so his methimazole dosage was increased. His vet also told me to start giving him Miralax, for his constipation. For a while, I had on my desk, next to each other, “Hammett’s Poop Log” and “Bugwalk’s Poop Log.”

Hammett


(Click photo to enlarge.)

Saturday, April 22, 2017

Dazzlingly Lovely Flower

The next morning, a physician said something to me in the palliative care rounds meeting that initially was quite jolting. He said, “I’m not comfortable with you as a chaplain.” I spoke up for myself in what I thought was an appropriate manner, and the physician clarified that he was merely saying that, while Delia was on vacation, he felt unequal to the task of mentoring me, since he is not a chaplain. I saw that I had projected onto him, which I acknowledged in the moment, and the interaction ended in a relaxed, agreeable mood.

However, possibly that very day, I accompanied the palliative care team to visit a woman in the ICU, and after we left, her relative joined us outside the room to share some bad news he had gotten about another family member. I said I’d be happy to return to offer emotional support. He broke in to say excitedly that he had been hoping emotional support was available, but instead of letting him talk, I finished what I was saying: I talked over him. As with visiting the wrong patient, I felt embarrassed afterward and again feared that the palliative care team will think I’m incompetent. I comforted myself by remembering how our new supervisor asked me to do joint visits with him. He said, “I heard you’re the all-star chaplain, and also that you’re good with the charting system.” Nice to think someone is saying good things about me.

One day at work, I went to a very interesting panel discussion about how care team members respond emotionally to patient requests to exercise the End of Life Options Act.

It has now been four months since F. left me, and the pain has abated noticeably. Particularly since starting the palliative care rotation, I’ve hardly had time to think about him, but it does occur to me that the relationship itself, like a person, was subject to sickness, old age and death. I think of us as having been a dazzlingly lovely flower that bloomed for a whole year, but then wilted, became ugly, fell. No one thought this was going to be a good relationship, including me, but it exceeded expectations. My mother said once or twice, “That worked out better than I thought it was going to.”

This past week, the palliative care team visited a woman, not much older than I am, who is dying and terrified. She loves God, but wonders where he is. The physician in our group talked to her at length, in Spanish, about end of life choices. I would never have been able to conduct this conversation myself in Spanish, but could understand pretty much everything the doctor said (less so the patient). After we’d been with the patient for about 30 minutes and the meeting was maybe winding down, I asked the physician to ask the patient what she would say to her own child if her child expressed that she was scared and felt God had abandoned her. The conversation ended up going in a different direction, but I think that might have been an interesting question. Or maybe it would have been too theoretical and too complicated for someone feeling so frightened. However, just saying, “Of course God loves you!” seems useless, which none of us did say.

One day, I went to a meeting with a palliative care doctor, a patient’s wife and his grown children. The situation was quite dire, and the wife periodically wept. Meanwhile, one of the children talked and talked, throwing out possible plans and ideas. After about an hour, the imbalance between the grief at one end of the table and the verbalizing at the other seemed so glaring that I asked if we could just sit together silently for a few moments. I said, “Maybe we can take a few moments to notice how it feels to be having this conversation about your husband, and your father.” We did that, and then the meeting drew swiftly to a close.

The doctor said afterward that he had been trying to think of how to end the meeting, and that he never would have thought of doing something like that. He said, “Just like that: poof! The meeting ended.” I liked that the idea arose very naturally, as if on its own. That makes me feel I can trust my intuition.

Late this past week, a woman from Zen Hospice came to the hospital, which I guess she does every now and then. She attended rounds and thought a certain patient sounded like a great candidate for the hospice. After rounds, she and I went to see the patient together. She did all the talking and I observed. She described what Zen Hospice is like and what services are available there, and finally asked the patient, “Does that sound like somewhere you would like to go?” The patient said he did want to go there, and the woman said she would go start the paperwork; he could go the very next day.

But the very next day, he was dead. I couldn’t believe it, but then realized he had spent his last day thinking he was going to go somewhere wonderful, and maybe that is just what he did.

A Trip to the Morgue

A couple of weeks ago, I noticed there was a mourning dove sitting on a nest on the fire escape outside my living room window (my living room being the same as my bedroom, office, gentlewoman’s cave and workout area). I saw there were two eggs on the nest after the mother (or father) for whatever reason flew away. The parent had not been gone for more than two seconds when a large black crow landed and began to pluck at the edge of the nest with its beak. I shooed it away, and it was lucky I was watching at that exact moment because, according to my father, the crow would have eaten the eggs. He said birds will even eat the young hatched children of other birds. After several days during which a parent was present every time I looked out the window, the baby birds hatched, and a time or two I saw their scrubby little bodies peeking out from under their parent.

At work that week, I saw a note from one of the palliative care social workers saying that a certain younger patient does not want chaplain visits and had asked Delia to leave his room. I was pleased to be able to report that I had had a perfectly civil, if short, visit with him. I said that he said he is being visited by his wife. His wife? He was not known to be married. Why, yes, his wife, coming from such-and-such Bay Area town. Bay Area? This patient lives in another state. When I was asked during rounds meeting to describe the patient, it finally became clear that we were talking about two different people. I said I would delete my chart note and figure out how I had come to see (and chart on) the wrong patient. To make such a blatant screw-up was rather embarrassing, though the social worker assured me that she has done something similar, and that everyone has.

Right after the meeting, I went to that patient’s room and immediately understood what had happened. As I approached the room, noting the descending room numbers, I saw personal protective equipment on the door of what was likely to be the correct room, based on the number of the room next door. Or was it personal protective equipment? Maybe it was the equipment those who clean the room are supposed to use if the patient is receiving chemotherapy.

Fortunately, just then a nurse popped into view and I asked her. She explained, and I turned and went into—the wrong room. I sent a note to the palliative care team saying I’d figured out what had happened and had removed my chart note. I got a note back from the social worker later that afternoon saying, “Just wanted to let you know that we are so very appreciative of your presence this week. We completely trust your instincts, skill and wisdom as a chaplain. I can imagine that today was quite difficult. [The other social worker] let me know about the morgue experience.  Hoping we can check in tomorrow. Sending hugs.”

As for the morgue experience, I got a call saying that the family of a deceased palliative care patient wanted him to have a blessing. The staff member who normally brings the body into the viewing room was not available—would I mind doing this in “the cooler”? I said I would not mind, though my true feeling was that there was nothing I would less rather do. Anita offered to come with me, but I decided to be brave.

A young woman let me into the necropsy room. Beyond her, I could see a man poking at something red and pulpy lying on a table, evidently an autopsy in progress, something I had had an active desire never to see. The young woman opened the door to the freezer, where there were five or six bodies wrapped in white bags. She offered to bring my fellow into the room outside the freezer (or perhaps not a freezer as such; a cold room), where her co-worker was, but I also actually didn’t feel like seeing the face of the frozen dead person, so I said, “No, that’s fine,” and I stood in the doorway of the freezer and offered a blessing to the patient of interest, as well as to the others in the room, while I was at it. I wondered if I should make the gesture of touching his head through the bag, but did not want to and did not.

Before I left, I asked the young woman, “Is your co-worker working on a head?”

“Yes,” she said. “A fetus.”

I then called Jodie, one of our supervisors, to see if I’d cheated by not having the man brought out and uncovered. “No!” she assured me. She said the family just wanted a chaplain to be near their loved one and offer a blessing. I told her about the autopsy and she was sympathetic. She asked if I’d ever seen one before, and she said she has seen two. She said I should feel free to come by to debrief further if I wanted.

That afternoon, when I got home from work, I went to the window to admire my birds and saw that the nest was empty. When I turned on my computer, I saw a note from the manager of my apartment building saying it had come to her attention that nasty, poopy birds were nesting on the fire escape, and might she go through my apartment to deal with the situation?

I was upset. I cried. I didn’t think she would harm baby birds, but I suspected she might have shooed the parents away long enough for the crow to get them. But it turned out that she does know you cannot disturb nesting birds, and she said that when she went through my neighbor’s place to get to the fire escape, the nest was already empty. Maybe a big aggressive bird scared the parents away and ate the children. I was relieved when I learned that, though a tragedy had occurred, we had not caused it.

That first night, the parents were clearly in distress. They flew around close to the nest, and periodically, one of them stood on the nest and looked down as if somehow the babies would reappear. I kept looking, too, thinking maybe somehow they would come back.

Up

(Click photo to enlarge.)

Sunday, April 09, 2017

Aid in Dying

We visited a patient last week who is fairly young, has metastatic cancer (“mets,” as it is written in charts) and wants to exercise her rights under the End of Life Options Act. It is my understanding that those working in palliative care do not particularly want to be associated with the suicide of patients and, further, that they believe that in many cases, when someone wants to do this, it is a quality of life issue, such as untreated pain, depression, or anxiety.

So I was touched when our social worker answered affirmatively, saying she would bring more information. In the course of a long and unhurried conversation, it emerged that the patient is dealing with a lot of pain, and that when she is not in pain, she does not feel like using the aid-in-dying medicine. It was neat to see the textbook come to life, or so I thought until I mentioned this to the social worker the next day and she reminded me that actually, what the patient said was that when she’s not in pain, she doesn’t feel like slitting her wrists. She always feels like obtaining and taking the end-of-life medication (which is morphine plus a sedative; 30 pills, give or take) because she wants to be in charge of when the end of her life comes. I was not listening carefully enough. The reason the social worker was supportive is that, most of all, palliative care providers want the patient to get what she wants, when possible.

We also visited a fairly young couple who wanted advice on talking to their two sons about the wife’s cancer. I felt sad about this young woman whose death is likely not too far off, but worse for the partner who will be left behind. It seemed at first that he didn’t want to talk to us, but by the end of the visit, he (and his wife) seemed grateful for Delia’s assistance.

Mid-week, during a time when Delia wasn’t around, I got to go to a care providers’ meeting for a patient whose sister has been at her bedside nearly 24 hours a day. (I know both of them from the soup kitchen; this is not the same as the woman I was mentioning a couple of weeks ago whom I also knew from there.) There was a geriatrician at the meeting who spoke passionately about changing this blind patient’s medication so that she doesn’t sleep 22 hours in a row and about engaging her other senses. Since the patient likes to put things in her mouth (in fact, when she is not sedated, she likes to bite anyone who comes close enough, and tried to tear out her IV with her teeth), this doctor suggested she could be given a necklace meant for toddlers, which is safe to chew on.

Someone asked where you’d get a thing like that and the doctor said, “I was looking on Amazon—it should be at my house when I get home tonight.” Awww! I was extremely touched by this doctor’s refusal to give up on this patient and ordering the thing from Amazon herself. Someone from psychiatry talked about making sure to keep the patient’s blinds open during the day and to have her room dark at night, to get her internal circadian clock working properly again. I’d heard a palliative care doctor speak about this patient as being terminal, which she may well be, but I was touched by this geriatrician’s approach and felt relieved that she is part of the patient’s team.

Delia had told me early in the week that she would be in on Friday at 1 p.m. because she had a presentation to give downtown. On Wednesday or Thursday, she invited me to come to the presentation, so on Friday, I got to report to the Fairmont Hotel and attend a panel discussion on palliative care. I was seated next to a retired plastic surgeon who told me that he mainly worked on congenital birth defects, including covering up exposed bones. He said he liked it because he could actually see what he’d accomplished, in contrast to operating on an internal organ.