Sunday, August 04, 2019

Jack


                                                      2/13/2004 – 8/1/2019

My parents
’ beloved cat has died. 

In Jack’s final year or so, he spent most of his time inside, where he loved to sit for hours on one lap or another. Prior to that, my father says, he had two behaviors that were especially endearing: He would try to accompany Mom and Dad on their daily walks, either trotting along behind them or trotting a few paces ahead and periodically looking back to be sure the whole party was still together. (They could prevent him from following them by putting food out on the back deck; he would rejoin them for the end of the walk.)

Jack also liked to keep Dad company when he was working in the yard, either sitting nearby and watching Dad’s activities, or climbing up on downed tree limbs and using them as horizontal scratching posts.

Dad reports that Jack had a wide range of distinctive vocalizations, and that he and Mom were sure he often was trying to tell them something, but they were never able to learn more than a word or two of cat language.

Dad says that Jack was the most remarkably companionable cat he has ever known. “He was my buddy.”

Monday, July 15, 2019

Walking Like a Walking Person

Late in June at County Hospital, there were only two palliative care patients for me to see, so Clementine sent me to the ICU, where there were at least three horrible situations: a PVA (pedestrian versus automobile) accident that had resulted in brain death; a young parent accidentally caught in gang crossfire, also brain dead; the savage beating of a young woman.

I went into one room to find a doctor comforting the sister of one of the brain-dead patients. The doctor had taken the sister tenderly in her arms and was crooning into her ear. It was a tour de force of compassion, particularly given that the doctor probably has to do this five times a week. The sister was weeping, and then said, resolutely, “I’m going to let you do what you need to do,” by which she meant withdraw life support.

It’s impossible to know, but I wonder how it would have gone if the doctor had stood six feet away with her arms folded, saying, “There’s nothing more we can do.” Maybe then the sister would have yelled the words heard very often around the ICU: “Well, you’re not going to pull the plug! You’re not going to give up on her!”

One morning at the end of my 24-hour on-call shift at my paying job, I spoke to the person taking over. Fred asked, “How are you?” I said, “Oh, fine,” and then I added, “except for my right knee, which is killing me.” I’m not sure why I said that, and I expected Fred to say, “Sorry to hear that,” and that would be the end of the conversation. Instead, he said, “What’s the history of this problem? Where does it hurt?”

He told me that he had once been in an accident that had given him knowledge of such matters, and he hypothesized that my kneecap was being mashed against the joint. He said that when he had a similar problem, an acupuncturist treated the twin indentations under the kneecap known as the “calf’s nose.” This was helpful, but Fred figured there was no reason he needed to pay an expert to do this, so he went and bought his own acupuncture needles, boiled them in water, and stuck them in the indentations under his knee, with good results.

I was going to call my PCP the very next day for a referral to physical therapy, but when I thought about what Fred had said, it explained my symptoms exactly. Accordingly, I began doing quad stretches many times a day, and there was immediate improvement. A couple of days later, I went to have a massage, and my massage person worked on my right quads and suggested putting arnica gel on my knee, along with Tiger Balm and CBD oil, either spaced out or all at once. He said arnica is good for sore muscles, and the other two are good for inflammation, but via different compounds, so it’s worth it to use both. (Actually, all three are good for inflammation.)

Thus I found myself on the phone to the nearest marijuana dispensary, placing my very first order. I looked at their website before I called and couldn’t believe how many products they have. I explained that I wanted CBD oil without THC and the helpful employee pointed out various options and said she’d put my order in a bag for pickup. I’d thought I would have to provide my full name and address, or even show ID, but I only had to give my first name.

The next time I discussed my knee with Fred, he had more suggestions, including that I should go see the chiropractor in my PCP’s office, who Fred thinks is wonderful. I said, “Is he going to mess up my spine?” I had never in my entire life seen a chiropractor, but this one really is wonderful. Friendly and enthusiastic, he explained what was going on, released various frozen spots, and gave me some additional exercises to do at home. He said it was not in fact a case of my kneecap being mashed against the joint, but rather patella tracking disorder, due to a ligament that he said is slightly “lax.” He explained why stretching my quads helped. He said my focus does not need to be on growing cartilage but rather on lessening inflammation. My knee is not entirely better—maybe this is now a chronic situation of occasional achiness and stiffness—but it’s much improved and I can walk pretty much like a person who can walk.

Little Miracle Baby

One day late in June, I did a refresher for the two students I’d most recently trained at work in the use of the electronic charting system. I thought it might make more sense after they’d been using the system for awhile, and I could tell that some pieces of information were making sense to them for the first time. In the afternoon, the staff chaplains had our monthly meeting, and in the evening, Tom and I watched half of the Democratic Presidential candidates debate online. (That is, we watched the whole thing; half of the 24 candidates were debating.)

My right knee at that point had been hurting for about a week, which can happen if I slack off on my exercises, or perhaps for no discernible reason at all. I’ve been in physical therapy for this at least three times over the years. My father reminded me that the original injury likely was one I received at age 23 or 24, when I worked for PG&E, in the general construction department, when I fell off a telephone pole and got a lot of big slivers and also gave my knee a good thump. The co-worker supervising my pole-climbing practice said, after I fell, “Get back up the pole, Bugwalk!” Today I would say, “No, I won’t!”, but back then, I followed instructions, and fell maybe four times in a row. There was a worker’s comp claim, and it was determined that PG&E was at fault, and in fact permanently responsible for my knee, though I suspect if I called them up and asked them to pay for physical therapy, it would be an uphill battle.

Usually my knee feels better as soon as I get back to my stretching and strengthening exercises, and this time was no exception. In fact, my knee felt so much better that one day at work, I walked up the stairs from the second floor to my unit, on the tenth floor, with no ill effects. Accordingly, after lunch, I did the same thing again, and by the time I got to the tenth floor, I was in excruciating pain, which refused to budge, no matter how faithfully I did my exercises. The night Tom and I watched the debates, I could hardly walk. One thing that made it noticeably worse was sitting down; every time I stood up again, there was a sharp uptick in pain.

Once in a while, I get extremely dizzy, which I attribute to stress. Toward the end of Clinical Pastoral Education, I had three or four days in a row of dizziness, and the night Tom and I watched the debate, I suddenly got extremely dizzy just before bedtime. During the night, I sat up for some reason or other, and noticed that I still felt awfully dizzy.

At 2:10 a.m., my work pager went off: a dying baby was in need of baptism. I was genuinely afraid I was going to fall while making my way to work and end up in the ED myself, but somehow I got there, painfully folding my knees to get into a cab and painfully extracting myself again at the hospital. It was the worst possible night for the pager to go off: both sitting and standing were problematic.

The baby in question was one day old and had already coded (stopped breathing) at least once. The doctor had explained to his parents that he would not live. I performed the baptism and then I prayed for the baby, saying, in part, something like, “Of course we pray for a miracle, but if we can’t have the miracle we want, we give thanks for this miracle: that this baby is alive and breathing right this minute.”

Later I was kind of slapping my forehead over that: so often clinicians have to temper a family’s hope for a miracle—why on earth did I introduce the idea myself? Also, it was kind of stupid to give thanks for the breath of a baby when that baby was only breathing due to being on a ventilator, and would die once the ventilator was disconnected. However, the parents seemed comforted.

I spoke with the doctor while we waited for other family members to arrive to hold the baby for the first and last time. The doctor said that during his residency, 80 babies a year died. He studied how to help families with bereavement and learned that it’s important for family members to see the efforts to revive a patient who has coded. He talked about how, even if they know a baby will die, they give the baby a couple of days on life support, to give the parents a chance to start to come to terms with saying goodbye.

I asked him what he does to care for his own emotional well-being and he said that he doesn’t need to do this frequently, but now and then, it’s essential for him to go unburden himself to one of his two or three best friends.

Three days later was my next work day. I was sure the electronic health record (EHR) would say that the baby had died at the age of one or two days, but the baby was still alive. I went to visit, and found the baby doing well, with thrilled family members at his bedside. When I told a nurse this story, she cooed at the baby, “You little miracle baby!”

Update: this baby, who was “cold and blue” upon arrival at NICU went home “in good condition” a couple of days ago.

Cornbread Cake

In mid-June, I went to visit my parents and sister and Amy and Ginny in Michigan. I didn’t get to see my uncle because he was at his cottage up north. It was a lovely visit, doing all the things I enjoy doing there: hanging around with my parents, getting caught up with my sister, watching MSNBC (Rachel!), going to Seva with Amy and Café Zola with Ginny.

It was also nice to be with Jack the cat, upon whom my father dotes, worrying over his appetite, shopping for new kinds of food, cooking things Jack might like. I joked to a friend about my father saying, “I have bought these 95 kinds of food for Jack and have tasted them all. I think this one is the best.” That’s an exaggeration, but not by much. I told my friend that my father is an excellent cat father and that he’s like that with people, too. He goes well out of his way to care for those he has identified as being in his flock: Mom, his own children, other relatives, Jack the cat, and another person I have finally concluded is my half-brother, since we in effect share a parent.

During my visit, my father hosted a birthday celebration for me: pizza delivery and cake suitable for the person who avoids sweets. He has approached this problem different ways over the years. This year, he made a cornbread cake, omitting the cup of sugar the recipe calls for. It had buttermilk in it, and was moist and pleasing. As for frosting, he was thinking he would put cream cheese on it, and was wondering what might be added to the cream cheese. I suggested fruit-only preserves. He used strawberry and the result was wonderful—light and delicately sweet.

When my mother said later in the day that she could go for another piece of cake, my father said there should be plenty in the fridge, as he had had to test his recipe by making it more than once, of course.

Back at home and at work, I greeted a patient on a gurney in the hallway who turned out to have likely C. diff. From now on, I will wait until the patient is situated in his or her room and any instructions about precautions have been posted.

I was asked to visit a dying patient whose mother wanted someone to read the Bible to her. When I got to the unit minutes later, her nurse said, sounding shocked, that the patient had just died. When I went into the room, I saw the patient lying on her bed with her eyes wide open, and I got a tingling sensation all over my body. (A similar thing happened once before with someone who had just died: goosebumps on my shins.) I spoke directly to the patient, since the strong energy in the room made it seem she was still there in some sense.

I also visited a patient who has lived in his car since parting from his spouse two years ago. A nurse in the ED wrote in his chart note that patient was “inappropriately focused on needing to move his car.” Worrying about your car being towed is far from inappropriate if your car is also your home, contains all your possessions and is the thing that prevents you from having to sleep on the sidewalk or in a shelter. I swallowed the urge to send the nurse a message to that effect.

Finally, I visited a patient who had left the hospital a month prior with a newly transplanted organ and high hopes. Bad labwork had put him back in the hospital.

I went for a sleep study late in June, after having noticed that my sleep requirement seemed to have gone way up. Long ago, I was diagnosed with mild sleep apnea after a sleep study, and thought maybe it had worsened, accounting for what seemed like undue weariness—needing as many as 13 hours of sleep some nights, with nine hours a night, which I had considered a minimum, now insufficient.

The technician festooned me with wires and said that if I woke up at least 15 times per hour in my first two hours of observed sleep, I would then be set up with a CPAP machine to try out for the rest of the night. He had me try a few different ways of attaching a CPAP to my face, and said that 75 percent of people being studied end up qualifying to try the CPAP. If a CPAP was indeed needed, then I was looking forward to having one and enjoying more restful sleep, but I was hoping I wouldn’t need one—not to have the diagnosis, hassle or expense.

I caught myself waking suddenly from sleep at least three times soon after retiring, so I was sure the technician would be coming along with the CPAP, but he never did. As for improved sleep, that has already occurred, thanks to my new PCP, who, when she ordered the sleep study, also reminded me about proper sleep hygiene: no screens starting two hours before bedtime, taking magnesium in the evening, not lying awake in bed for more than 15 minutes.

I have been faithfully following these instructions, including that I take 500 mg of magnesium glycinate 90 minutes before bedtime. Maybe five or six times, I did get up and read in my dimly lit room until I felt really drowsy, which more than once took hours, and I felt lousy the next day, but now, as a rule, I fall asleep fairly easily and quickly, and sleep much more soundly than before. Nine hours, alas, really isn’t enough, but if I sleep nine hours on work nights and maybe 11 or 12 hours one night a week, and 10 or 10.5 hours the rest of the week, it seems to balance out.

Sufficient Unto the Day Is the Evil Thereof

It ended up taking a week to dry out my apartment. I was left with (and still have at this moment) the various holes in my various walls and removed kitchen ceiling as previously described.

Like, here's my little hallway.



Here’s Hammett with the final dehumidifier.


And Hammett tenderly licking one of the fans.


Early in June, I got an email newsletter from one of the leaders of the street retreat I’ll be going on. He was reflecting on another retreat just concluded, and about how much help the retreatants had gotten from actual homeless people:

Street generosity comes in many forms. A woman in her 70s and who has been sleeping on park benches for decades, like a Bodhisattva walking through the hell realms with joy, quietly lured rats away from our sleeping area with scraps of food she had saved in her handbag.

Rats near the sleeping area?!?

Close on the heels of that alarming transmission, my mentor group met, including a person who had been on that retreat. She joined a few minutes late because she had spent the whole day in the ER dealing with a painful symptom that arose on retreat and lingered afterward. The retreat “did me in,” she confessed.

She also said that she spent too much time preparing, since you don’t need much: the clothes you’re wearing, a plastic bag in case it rains, one dollar. She said she wondered afterward why she had thought there was so much to do beforehand. She also said there was no overlap between what she worried about beforehand and what actually ended up being difficult (i.e., what she should have been worrying about). Encouragingly, she said everyone’s mala was different, so there is no need to fret about making the right kind.

Early in June, I went to the annual palliative care retreat in Marin, a fantastic day of seeing colleagues, meeting new people, eating, making art, singing.

By drawing myself a picture as I walked around my floor of the hospital at my paying job, I finally solved the mystery of why I have to turn 11 corners to go all the way around something that is basically a square.

Several weeks ago there was a half-time job for a palliative care chaplain at the Truly Wonderful Medical Center, where I did my Clinical Pastoral Education. That obviously was my job. I applied for it, and over the next couple of weeks, mulled over the pros and cons of taking that job versus staying where I am. Then I realized I had not been invited for an interview! This was a lesson in acceptance and humility. (I heard soon after that that a CPE peer of mine whose demographics are very different from mine had been invited for an interview. I’m pleased to say that, after about ten seconds, I was able to sincerely wish that he will get the job and that it will be a big success all around.) It was also simplifying: I guess I don’t have to try to decide whether to leave the Very Fantastic Medical Center or not.

And whether or not I have the title of “palliative care chaplain,” I am one. When I walked into the room of one patient, he said, “I was going to call for you! I would like to discuss what happens next, like my burial and so forth, and also what the spiritual meaning of this is.”

I said, “Would you like to discuss those things right now, with your family present, or another time?”

He said, “Right now. Please sit down.”

Once upon a time, I might have been flustered by that. I might not have known what to say or how to approach such a conversation. I might even—worst of all—have tried to install hope in the patient: “Maybe you’re not going to die!”

Another reason that conversation was great, from my point of view, was that the patient’s sister, who is very devout, mentioned a part of the Bible I actually recognized. “Matthew, chapter six,” I said, and we nodded and smiled at each other. That was extremely satisfying. That’s literally the only chapter of the Bible I would be able to recognize. It’s the one that, in the King James version, ends with my favorite line in the entire Bible: “Sufficient unto the day is the evil thereof.” I must have heard that in church when I was a small child and never forgotten it, because I have always known it. It means not to worry about yesterday or tomorrow. The Lord’s Prayer can also be found in that chapter, and the thing about the lilies of the field.

Thursday, June 06, 2019

A Co-Worker with a Demon

Every morning that week, I made myself a beautiful, enormous salad and took it down to the lobby to eat, where it was slightly quieter and lots cooler. It was 95 degrees in my kitchen (yes, I know I mentioned that before) and the food in my cupboard was no longer being stored at the suggested cool temperature. It was all now toasty warm. There were also hoses rigged up to drain water from the dehumidifiers into both my kitchen and my bathroom sink.

While I was eating my salad in the lobby one day, a neighbor from one of the unaffected units came along and listened to the whole story, and then she went up to her apartment and brought back a gift of fish: low-mercury tuna from Vital Choice, and a can of Redtresca (Vital Choice’s name for salmon bellies, which my neighbor said are very tender and particularly high in omega 3s). (She also brought shrimp and mussels, but I don’t partake.)

I suddenly realized that I felt incredibly loved and cared for, which I would not have expected, and I also recognized my immense privilege: something bad happens, and immediately tons of people come to fix it. I know everyone can’t count on that. It also could have been way worse. It could have been sewage instead of fresh water. It could have happened at a time when someone wasn’t here to shut the water to the building off within just a few minutes. And my parents kindly listened to blow-by-blow reporting on the matter via phone, and my neighbor gave me fish.

Going to work one day afforded a much-appreciated break from the heat and noise. One of my co-workers mentioned that our new staff chaplain has a demon. “Oh, dear,” I said, and then realized he was saying “DMin,” also a very impressive thing to have.

Halfway through the week of drying, the water damage people came to open up the walls in my living room, hallway, bathroom and kitchen to dry the insides. Mine was the only apartment where this needed to happen.

I had put Hammett in the walk-in closet, along with his food and litter box, both on sheets of plastic. He seemed happy enough, so I was going to go out to the library. I put a note on the closet door saying DO NOT OPEN, and I put a chair in front of the door. I told the two demo guys that the closet door must not be opened, because my cat was in there and my top priority was that my cat not get out of the closet. Within a few minutes, while I was standing right there, one of them moved the chair aside, and when I said, “Pop quiz: what’s my top priority in this apartment?”, they both looked completely blank, so I changed my mind about going out, and sat in the kitchen while they did the work in the other rooms.

They started in each room by making a cave out of plastic in which to work. While I wrote thank-you cards for the contributions people had made for my street retreat (did I mention I plan to go on a street retreat?), amid the banging and crashing and sounds of debris falling, I could hear them yelling to each other:

“Beautiful!”

“Beautiful!”

And periodically:

“Watch out!”

“I got it!”

Later the boss arrived to see how his workers were doing, and I soon heard him yelling “Beautiful!” as well. In the end, three holes were made in my living room walls, along with a huge expanse of wall and ceiling removed in my front hallway, and a long hole in the bathroom. In the kitchen, fully half of the ceiling was removed. (I was pleased to see that the newly exposed wood appeared sturdy and was even quite nice looking.)

The building manager told me that every single month, for 14 years now, along with his rent check, Tom sends a hand-written card to the building owner: “I hope you are doing well,” or “It’s a sunny day here in the Mission,” or “I went on a fun bike ride to such-and-such place.” I had no idea he did this, and couldn’t believe it. He might literally be the only person on earth who does such a thing. (My own rent is sent from my bank via automatic billpay, and I never give it a thought unless it goes up and I have to adjust the amount. I suspect my bank does not include a hand-written card with each payment.)
 

I have received a lot of contributions for my street retreat, most with nice notes: checks in the mail, cash, an electronic contribution from my friend who wants me to be able to function to some extent in the modern world. One person sent a small, fat brown envelope which had inside, all stuck together with blue tape, a little vial of incense around which was wrapped a letter reflecting on her own street retreat experience, a five-dollar bill, and a small piece of paper on which was written, “The way in is unwinding.” The whole thing brought me joy. I laughed the whole time I was peeling it apart.

My routines were all messed up during this mold-prevention operation, yet another opportunity for reflection. If I can skip stretching for several days in a row, do I need to do it at all? Answer: yes. If I can skip writing down my dreams for several days in a row, do I need to do it at all? Answer: maybe not. My dreams seem to be less interesting than they used to be, and I was only doing it in order to improve my ability to have lucid dreams, but since I started writing down my dreams again, about three months ago, I’ve had literally two lucid seconds that I’m aware of, so I decided to quit writing them down.

Professionals to the Rescue

The building manager tried to get a plumber to come that very night. That was impossible, but one came first thing the next morning and fixed whatever was wrong. Tom, going by the second-hand instructions he received, had removed the wrong cap, and it also turned out that the valve that had recently been installed was defective. (I will mention that I got five hours of sleep on that drippy, nasty, foul-smelling night. I was up until 1:30 a.m. trying to soak up as much water as possible.)

Next to arrive was a cheery young electrician, who removed my three affected light fixtures and temporarily installed bare bulbs dangling from wires.

Close on his heels were the water damage people, three men. I had aimed a fan at the wettest part of my carpet and let it run overnight, but that was laughably inadequate. They came in and used instruments to determine where the water was. By this time, it had made its way into my living room and yellow streaks had appeared on the ceiling and walls nearest the bathroom, and an expanse of plaster was getting ready to fall. I asked if I needed to move my bookshelves and they said: yep. This is a very tiny place, so finding a place to put every single book, CD and every other thing that was on those shelves was a challenge.

Hammett sat calmly in his spot in the walk-in closet through most of this. Then the drying guys got out knives and starting taking up the carpet to see where it was wet underneath, and then they installed industrial-strength fans and dehumidifiers in my place, Tom’s, the building manager’s, and the hallways outside my place and Tom’s. In my place there were six fans altogether and three dehumidifiers. The head drying guy, who was very pleasant and friendly, said the windows had to be closed while these things were running, so as not to introduce humidity when we were trying to get rid of humidity. The dehumidifiers—one each in the living room, bathroom, and kitchen—put out more than a hundred degrees of heat.

In sum, it was extremely hot (95 degrees, where it is usually 71), extremely loud, and rather arid in my place, for an entire week. It was also dark, because I quickly realized that opening the shades meant light came in and made it even hotter. The drying guy said I could turn the stuff in the living room off while I slept, but I wanted this phase to be over as soon as possible, so I left everything running all night, and wore earplugs. Hammett evidently hadn’t gotten the news that cats’ hearing is more sensitive than ours. He was perfectly serene at almost every moment and seemed to positively enjoy being a temporary fan owner. (I learned later that cats can seal up their ears to keep out damaging sound, though not instantly; if you fire a gun near a cat, you might damage its hearing.) I think he liked the heat and the vibrations. He was even seen tenderly licking a fan one day.

The daughter of the building’s owner came and spent the day with us—her insurance person came—and she was incredibly nice about the whole thing. She was calm and cheerful, and said, “Stuff happens.”

Everyone who came in took tons of pictures. The bathroom light fixture was a particular crowd pleaser.




(Click photos to enlarge.)

The Sound of Water

In May, I sent my boss this email:

Hello!

I just had quite a long visit on my unit (transplant) with a patient a nurse referred me to. The patient’s affect was relentlessly flat, and he did not seem to have nurturing relationships in his life, or activities that bring him joy. I know “depression” is a clinical  term beyond my purview, so I just said in my note that he seemed downcast and I noted what I said above. I said to a nurse that I thought maybe he could use a psych evaluation, and the nurse said, “I’ll text his doctor and tell him the chaplain thinks he needs a psych evaluation.”

Nice to be taken so seriously!


My boss wrote back, “Good work, including the word ‘downcast’!”

Tom and I drove a Zipcar to Sacramento to visit Ann on Mother’s Day and to see her new place (and for me to meet her newish dog). We had a lovely lunch in the community’s elegant dining room, and Ann made a stunningly generous contribution to my street retreat.

May 15, 2019, is a day that will long live in (my) memory. The first part of it was routine. I rode my bike to work and kibitzed with my colleagues and saw patients. In the afternoon, we had a meeting at another campus, so I rode my bike over there and discovered that a cage had been installed around the bike racks in the parking garage. I tried my badge and it didn’t seem to unlock the cage door, but the parking attendant told me to pull the door open, and sure enough, it opened.

Our interim director gave us a presentation on patients with mental illness. A couple of us did a role play, trying out what we’d just learned. Then we had a team meeting, and, just when the day would normally have ended, I got a page about an emergency back at my normal campus. I considered whether to ride my bike back over there and then cycle home, or whether to take a cab there and back, and then ride my bike home from where it was currently parked. I don’t mind cycling in the rain (I’m not saying I love it), but strong winds were also forecast, so I decided to take a cab.

I saw the patient and her family (and discovered that we don’t have after-hours priest coverage at the new hospital), and then I called a cab to go back to where my bike was. It took 56 minutes to get a cab—and then it turned out that my badge really, truly didn’t open that cage. I called security and, fortunately, there were a few parking people hanging around that campus. One of them came and opened the bike cage and I rolled home. I got home three and a half hours later than usual.

I did my normal evening stuff. At some point, it dawned on me that I’d been hearing running water for quite some time. I remembered the words of a friend of mine who also once upon a time listened to running water in her apartment building for quite some time and learned from that experience never to ignore this sound. I called Tom, in the apartment above mine, to inquire, and he said that he had flushed his toilet 45 minutes earlier and it had never stopped running. He had just had a new valve installed a few weeks earlier. These are old-fashioned toilets with no tank (but plenty of water pressure, as I was minutes from discovering). He said he would let the building manager know in the morning.

However, the noise was not insignificant, so I said I would text her. She wrote back instantly to tell me to tell Tom to take “the cap” off and try shutting the valve for a minute and re-opening it. I passed this on to Tom and I heard him in his bathroom, and then I heard a grunt of dismay followed by the sound, perhaps, of a wrench falling on the tile floor. “Something has gone wrong,” I thought, and one second later, water began pouring down my bathroom window, and then coming right through the ceiling.

I called the building manager back and at first she said, “Go up there and see if you can help him,” but I said, “Oh, my God. Oh, my God. Oh, my God. There is water pouring down into my bathroom, and hallway, and kitchen,” and she said to go turn the water for the whole building off, and gave us instructions. Her husband helped us.

Tom’s place was engulfed in water, mainly the floor, and my place had water gushing down from the ceiling, and raining through three light fixtures, in the bathroom, by the front door, and in the kitchen. The glass covering for the light fixture in the bathroom, which was pretty large, filled entirely with urine-colored water. (Fortunately, this actually was clean water raining down, not sewage, but the building is ancient, and was getting a thorough interior rinse.) I put a bucket under the light fixture in my front hallway, and it filled completely with pitch-black water.

It was a wet, yucky night, with one towel after the other getting soaked. There was a terrible smell. The water went from my place down into that of the building manager below me, soaking her light fixtures and ceiling and walls, and thenceforth into the basement. (Which we figured might be good: the place is porous. Better than having water sit in one place indefinitely.) The hallway outside Tom’s place got really drenched, and there was water raining down outside my front door, too.

I called my father, and though it was well into the wee hours in Michigan, he kindly listened to my initial report, and several reports after that.

Tuesday, May 21, 2019

It’s Been Seventeen Minutes Since Breakfast—Isn’t It Time for a Snack?

Yep! Work on my thesis for school has begun. Thanks to my faulty memory, I can recall writing only one research paper prior to this one. I probably remember that paper because it was traumatic for everyone involved, including my parents. I nearly dropped out of college over it, or maybe I did drop out of college over it. Who can remember? It was on the causes of homosexuality, a topic of interest to me at the time.

This one is about spiritual care as an essential aspect of palliative care, a topic of interest to me now. You don’t have to read it
—if you read this blog, you are reading it. It’s not a research paper per se, but an ethnography, largely based on my experiences at County Hospital and at my paying job. However, there will also be academic sections drawn from pertinent papers and books.

Fortunately, I happened to encounter one of the students from the cohort prior to mine on the plane when I went to school in March, and she mentioned that she had used Word’s template for an APA style paper for her thesis (File—New from Template—APA Style Paper). This has already made my life a lot easier, and is going to save me a zillion hours.

I am allocating one day a week to work on this. The first day, I found myself immediately stuck trying to write the abstract, but then I found something online that said to write the abstract last, not first. I decided to just start writing up the notes I have taken, a task about which I feel confident, and by the end of the day, I had 13 pages out of 60 (excluding reference list and appendices) written. By chance, I had a telephone meeting with my mentor that day, our second in a year. She applauded my going ahead with what seemed obvious to do, and she advised me not to let myself feel stuck for too long—I can get help from her, or my mentor group, or the wonderful woman who is in charge of helping my entire cohort with our papers.

On my second day of working on my paper, I decided to make at least one citation and corresponding entry in the references list, and I compiled information on citing books, articles, websites, and personal communications. Some of these people who write about this stuff online are quite droll.

I did succeed in making one citation and matching reference, and then I got back to doing the fun part. At the end of the day, I had 30 pages written, which meant it was going extremely well or that I was doing something extremely wrong.

Eating the Schedule

I’ve been thinking it would be nice to have a polished piece of turquoise to carry around in my pocket to remind me of Santa Fe and school; I’d like to buy it there, but so far I haven’t come upon such a thing. Someone suggested a certain store, but someone else said to first visit the Native Americans who sit at the edge of the Plaza to sell various wares. I had a bit of extra time on my way back to the airport—this was the Tuesday after Easter—so I walked over there. A vendor told me that the Santo Domingos sell loose stones, but that they weren’t there because they were still dancing for Easter.

My shuttle driver was one I’d had before, and he is one of my favorites because he doesn’t tailgate. I told him about how all of his colleagues tailgate and about how he is the rare exception. I said none of them seem to have heard the thing about allowing one car length per 10 miles of speed. He said no one does that—that if you leave enough space for a car to squeeze in between you and the vehicle ahead of you, you can be sure someone will do it. (I guess that’s bad.) He said leaving a courteous amount of space causes you to be seen as weak.

He told me that ABQ is second-windiest major airport in the whole country to fly into or out of, because of the wind over the mountains and the Rio Grande; he said Denver is the windiest. As we drove along I-25, we could see clouds to the left and right, almost as if we were on a plane, because of the altitude.

During sesshin, one of our teachers talked about how oryoki helps us to treat everything with care: the cup, the doorknob, the book. I found myself doing this once I returned home, and noticed how pleasing it is compared with rushing around doing things carelessly.

Back at work, I found myself consciously asking myself, “What else is here?” and noticing more about people: their posture, their facial expressions, what they were doing with their hands.

It had gotten to be a bad habit of mine to sit in front of the computer in the morning for an unduly long time before going off to see patients, which has often made me feel guilty. After returning home, I decided to “eat the schedule,” as they say in Zen: to do what absolutely needed to be done on the computer, and then get going to my units. (To eat the schedule is to follow it precisely. I don’t have a precise schedule to follow at work, but if I did, nowhere on it would it say to goldbrick for 90 minutes in the morning.) So far I have found that, instead of being exhausted, applying energy seems to generate more energy. It feels good to know I’m doing what I’m supposed to be doing, and to be able to report at the end of the day that I saw 17 patients instead of seven.

Another thing I changed was to start sorting my patient list by length of hospitalization rather than room number, which leads to much more walking around the unit, which I think is good. I start with the people who have been there longest.

One morning, Hammett inspected his breakfast briefly and walked away lowing mournfully to himself. I think he was thinking, “I can’t believe that person gave me cat food to eat.”

At County Hospital in palliative care rounds, the current fellow (physician) talked about hoping family members could “entertain some preparedness around the end,” which I thought was a nice way of putting it. We discussed an Asian family where all the children except the oldest were at peace with not pursuing aggressive treatment for their parent; someone in our meeting said there may be a cultural expectation that the oldest son in an Asian family will make sure all treatment options are tried. It was also mentioned that if a patient is on chronic opioids for pain management, that may cause him or her not to be considered for an organ transplant, though this may be an arbitrary criterion, and maybe not fair.

Tuesday, May 14, 2019

Gassho-Less Gomashio

In mid-April I went back to school for the sesshin (silent meditation retreat) we are required to do each year. This one was seven days. On the plane, I was sitting in the last row, which might be safer, but any sense of security was somewhat eroded by being able to hear every word the flight attendants said to each other, which turned out to be about how much they hate turbulence! One said, “It lasted for thirty minutes. I was in the galley praying.”

Arriving in Albuquerque, I thought of something a teacher said in a dharma talk last year: “We want the entire web of causes and conditions from beginningless time to be different so our elbow won’t itch.” I want everything from beginningless time to be different so the air won’t be bumpy, but the truth is, the air is bumpy, and tensing up doesn’t make it less so. This time, I thought, “So it is. If these actually are my last few minutes of life, how do I want to spend them? Can I relax in this situation of turbulence?” I decided to spend them listing the things I am grateful for, the things I love. (I also reminded myself, “I will not infect others with fear.”)

The next day, sitting on my cushion in the zendo, I wondered why I have to think it’s my final five minutes of life in order to devote myself wholeheartedly to gratitude practice, or to metta, or to accepting what is. What’s stopping me from doing that even if I have years to live?

Also, I realized that I probably haven’t been taking refuge in dharma literally enough. I think of dharma as the truth—how things actually are; what a lovely idea!—but I then don’t recognize the pain in my shoulder or turbulence while flying as instances of how things actually are and instead categorize them as aberrances or interruptions of some sort.

Last year, I sat on a folding chair with no cushion, which got to be painful after a day or two, so I spent some time in the intervening year trying to find the right cushion for sesshin. The custom sewing person at a meditation supplies place agreed to make me a cushion, which turned out to be perfect. That part of my anatomy was free from pain.

Despite not getting anywhere near enough sleep during sesshin, I made a point of getting up early enough to stretch for 20 minutes or so before the first sit (which began at 6 a.m.), and so there were only two or three sits where I had significant physical pain, and I noticed that I could tune into the vibrating or pulsing nature of the pain immediately, which has sometimes in the past taken days to notice. When I can feel that something is pulsing, it means that it’s “Worse, worse, worse” but also and equally “Better, better, better.”

In the morning on the second to the last full day of sesshin, after many, many neutral to unpleasant moments of sitting, there was suddenly a light, buoyant feeling in my body, which once again reminded me that the suffering is not in the sensations but in the effort to ward them off. Once the mind has softened enough to accommodate whatever is happening, the suffering is gone. Naturally, as soon as I had this experience, I expected to have it at every sit for the remainder of the sesshin, and of course did not. Nonetheless, it was such a powerfully expansive experience that it completely made up for everything else.

As always, accepting what is was a challenge. As I traveled to school in a shuttle, the driver pointed out a controlled burn ahead, deliberately set to decrease the possibility of wildfire. This burn plunged us into about 18 hours of thick smoke, much worse than anything I’ve encountered in San Francisco the past couple of years, which sends me running for an N-95 mask and firing up my HEPA air filter. I was glad when the smoke cleared the following day, and chagrined when I returned the house where I was staying to find it full of smoke: incense lit by fellow students. Thankfully, one of our teachers said he would ask them to refrain, but by then, others in the house had warmed to the idea of burning incense, and I had to ask two other people to stop. One of them was a 15-year-old who was there with his mother. One evening, someone did laundry late at night and the washer malfunctioned, making a terrible noise and setting off a repeating beeping signal. I got up to ask the launderer (the 15-year-old’s mother) please to do laundry before sleeping hours.

When I met with one of the teachers for a practice discussion, I said that I was feeling miserable: tired, cold, and like a bad person for so frequently finding myself incapable of not telling another person not to do something. I confess that part of me seriously thought my teacher was going to say, “You are a bad person! Stop telling people what to do!” Instead, he kindly observed that I was also treating myself with unkindness, and gently advised trying on grandmotherly mind. In regard to feeling miserable, he reminded me about Frank Ostaseski’s advice to ask ourselves, “What else is here?”

That was really helpful. I had started the sesshin using the sensations in my feet as my anchor. That was right for that time. But later, it began to feel too constricted, and it seemed to exclude noticing emotions—to be a form of aversion—so then it was right to open up to the rest of my body, and to emotions. And then at some point, that was too much stimulation, and it was right to ask myself what else was here and to let my attention rest on more neutral areas in my body. It was a good reminder about upaya—that what is best changes from moment to moment. (That word means
“skillful means.”)
 
As for my misbehaving fellow yogis, I wrote the 15-year-old a note saying I hoped I hadn’t made him feel bad. After he read the first two words, he threw his arms around me and gave me a long, long hug. His mother was entirely kind and apologetic about the laundry noise. The other incense burner gave me a card at the end of sesshin apologizing for not always being careful about the rules and saying she hopes to do better. Instead of people hating me because I asked them not to do this or that, I was showered with love. It was a humbling, powerful experience of sangha.

For logistical reasons, we had our oryoki meals in the dining room instead of in the zendo. We sat in groups of five or six at tables, which went surprisingly smoothly, and afforded a nice family feeling. Last year, I particularly hated oryoki, I think due to the constant feeling I was doing something wrong (and partly because of the fear I would choke on a piece of spinach). This year, with more familiarity and with the family seating, I found the meals quite enjoyable.

The person sitting across from me got about ninety-nine percent of it wrong, often seeming petulant, and often failing to bow to me when she was “supposed” to (never mind holding her hands in gassho while I was applying gomashio to my food; in vain did our table leader, a resident at the center, try to get her to do that). One day, our leader was trying to help her tie up her bowls for the umpteenth time, and I saw that the end of her cloth was pointing toward herself rather than away, which meant her bow would fail. I reached to gently tug the tip of her napkin into workable position, and she whisper-snarled at me, “He’s my teacher!” After the end of sesshin, someone else who had sat at that table said she had felt challenged by this person’s attitude. I was pleased to be able to say, honestly, that she really didn’t bother me. I could see she was doing the best she could on all fronts, and obviously her behavior was not about me. While she might conceivably have appreciated my trying to help her get her bow right, it was also true that my help was unsolicited, so I didn’t take it to heart.

This same person was sitting next to me in the zendo and was a perfect neighbor. She rarely moved a muscle, she was utterly silent, and she did not emanate any kind of displeasing smell (e.g., laundry detergent). When I thanked her at the end, she just gave me a strange look and didn’t respond. At the closing council, when I asked for forgiveness from anyone I had harmed, I noticed she was smiling a little smile and got the feeling she was thinking, “I’m glad you apologized for all the terrible things you did to me!” Who knows what she was actually thinking? People are funny, aren’t they? Thinking of her, I smile. In the end, the sesshin was about people: the ones I liked, the one or two I didn’t, the ones who annoyed me, the ones I annoyed, and the qualities of forgiveness and generosity that ultimately enfolded us all.

Reunion

I was paged to visit a patient who had been placed on comfort care the night before. Her nurse said various interventions were being turned off. I found the patient lying in bed with no visitors present. The room was pleasant and sunny, with a colorful vase of flowers. I assumed the patient would be unable to speak and thought I would just sit quietly with her for a bit; maybe her family would turn up. But when I spoke quietly to her, she opened her eyes and looked right at me.

She said that she was Christian and would like a prayer for a peaceful passing and to see her husband again in heaven. I was surprised, impressed and moved; I felt I might cry after I left the room. People almost always want prayers for healing, including when they are right at death’s door. I don’t think I’ve ever heard anyone ask for prayers for a peaceful death, or any other kind of death. I did pray for that explicitly, and that she and her husband will be happy together in heaven for eternity, and I gave thanks for her life. Afterward she murmured, “That was nice.”

Crane Tree

The day after the hospital move, Tom and I went to see Metamorphoses at Berkeley Rep, preceded by lunch at Au Coquelet. It was really wonderful—inventive, beautiful, hilarious at moments, touching—and also rather moistening if you were sitting in the first or second row, as we were. Afterward, we chatted with a woman with a visual impairment who said that her seeing eye dog got freaked out when she was splashed with water and went to sit with two ladies in the row behind her owner.

On Ash Wednesday, always a hectic day for chaplains, I met the interim director at my paying job and also our new full-time staff chaplain. I asked the new chaplain, Felicia, if she would like to have lunch, and four of us chaplains ended up lunching together. Felicia is cheerful and energetic and has been a great addition to our group. (Although it gave me a pang to see a new full-time chaplain start while I languish as a per diem. My former boss asked me to apply for a full-time or .8 job, but I felt that, with school still underway, I could not.)

I got a book: Dream Work: Techniques for Discovering the Creative Power in Dreams, by Jeremy Taylor, who has written several books about dreams. I gather he advocates using every form of dream interpretation—considering dreams from a variety of perspectives, even including the Freudian one, to see what might be discovered.

I actually figured something out about a recent dream, in which I was in the backseat of a car being driven by my grandfather. Someone honked aggressively at us, but, knowing my grandfather to be quick to anger, I was sure he would defend us. Instead, he got out of the car and strolled off, not even locking all the doors. I always sort of know I’m dreaming, so I wasn’t afraid, but I was mystified that he had left me vulnerable to attack. I realized that this is about the part of myself that is quick to get angry and to mount a vigorous defense: maybe not always needed.

In mid-March, I went to Santa Fe for a week or so at school. SuperShuttle drove off without me, so I had to take a cab to the airport. Two of my fellow students were on the same flight, and one of them switched her seat to join me. She gave me a lot of helpful tips about the thesis we are writing in this second year. She had rented a car, so the other student and I decided to drive with her instead of taking the shuttles we’d reserved. How much it cost me to get to school that day, besides the airfare and $30 to check a suitcase: $21.06 for SuperShuttle, $43.65 for a cab, $20 cab tip (purposely large to restore my own good mood), and the $40 I chipped in for the rental car.

But it was worth it. (SuperShuttle did give me a refund later.) We had a fun drive together, stopping at Annapurna’s in Albuquerque for lunch. While we were at school, we had a chance to discuss our project proposals with the person who is in charge of helping us with our theses. We were not officially going to get feedback until a month later, but during our meeting, she told me to go ahead and start writing, meaning my proposal was approved.

Toward the end of the week, my cohort did final preparation for jukai, an inspiring ceremony in which we received the precepts. The day beforehand, our teachers led a session on the meaning of jukai. My cohort had begun a scholarship fund in honor of Roshi’s recently departed teacher, Bernie Glassman, and had raised nearly $10,000. We designated someone to present this to her. While we were at school, someone had the idea of us each folding a paper crane and writing a note to Roshi on it; someone went and found a beautiful branch to attach the cranes to. Someone else said we should learn a song to sing to Roshi, and so on and so forth. So on this day beforehand, Roshi came into the room to hear us singing the song, and she saw the crane tree, which was indeed a gorgeous thing, and then we told her about the scholarship. She was bowled over.

When I began this program, jukai had zero meaning for me, but by the time I did all the work to get ready for it, it had immense meaning. It was a really wonderful day. We meditated for an hour or so that morning in another temple on the property, and then the “Band of Joy” came to escort us to the zendo, where our family and friends and the cohort of chaplains after ours were in the audience.

I didn’t want to make anyone feel that they had to schlep to Santa Fe, so I invited only one friend who lives right there, but wasn’t sure if she would make it, per health issues. I told her it was fine if she didn’t come, or if she came and stayed for five minutes and then left. The ceremony was about 75 minutes long, and I was touched when I saw afterward that she was there, and had sat through the whole thing. We went up front in groups of three or four, and I feel that in those moments when Roshi was speaking to me, she truly became my teacher. It was a great week at school. It was fantastic to see my fellow students. I also had a good work assignment: grounds (i.e., making compost heaps), under the direction of a particularly delightful resident.

The Story of No Pizza

The first Saturday in March was the day of the long-awaited move of patients to the brand-new hospital at my paying job, a long-planned and staggeringly complex operation. I rode my bike to work for the first time in quite a while, despite the pouring rain. The new hospital has a lovely, secure bike room with lots of racks in it, plus a large number of racks outside the room for visitors.

The hospital provided free pastries and coffee for staff in the morning, and box lunches, but what I was really looking forward to was the pizza that was to be delivered at 5 p.m. While I was waiting for that, I went to every floor to look around. I noticed that, looking west, the view is of four churches. I went to the ICU and saw some of my newly arrived patients, including one who had just suffered such a horrendous family tragedy that she didn’t even know about it, because her husband had decided it was best not to tell her. (I believe she died without ever learning what had happened.) I offered the husband condolences. His first words were, “God is with me.”

The patient move seemed to go smoothly except for one patient who refused to leave his room at the old hospital. Last I heard that day, they had succeeded in getting him down to the emergency department, so I’m sure success was achieved in the end. I had seen chart notes warning that this or that patient was likely to die during transport, but none did.

There was only one glaring problem that day, to my knowledge. At 5 p.m., I rushed to the cafeteria along with lots of other staff members, only to see the same old pile of box lunches: no pizza. Someone said they had seen a huge amount of pizza being delivered, and we could all smell it, but they had stationed some guy in the cafeteria to explain to us that the pizza was only for “certain areas.” I was really kind of irate. It seemed wrong that they would tell us that staff would be getting pizza and then not provide it. It occurred to me that maybe the ICU was one of those certain areas, but I went back up there and it wasn’t. My mother sympathized. “It’s different than if they had said that at 5 p.m. there would be a salad bar.”

It was irritating to picture management on TV saying how great the move went—which it did, and they did go on TV to say so—while screwing people who worked hard to help make it happen. It was also kind of mystifying. How could this outfit successfully move more than a hundred patients, some of them at death’s door, across town without the slightest mishap and yet be incapable of causing pizza cooked by some outside entity to appear in the cafeteria?

Fuming, I set off for the parking garage. Before I could open a door on the ground floor where I needed to use my badge, someone on the other side opened it: the CEO of the hospital, Dr. Wrigley Bodacious (not his real name). I started toward the bike room, passing employees who were asking, “Where’s the pizza? Where’s the pizza?” Then I thought, “Wait a minute!” and I turned around to go have a word with Wrigley, who I’d never seen in person before. I walked back up to the lobby, where a security guard said that he had just stepped into an elevator, successfully eluding me.

At home, I gave Tom a call. He normally takes absolutely everything in stride, but even he was shaken: “That’s not right. People don’t forget a thing like that.” I came upon yet another flyer announcing the pizza delivery, which also had on it the number of the Command Center, so I called them. The guy there said he heard something had gone wrong with the delivery, but that they had pizza in such-and-such room if I wanted to come and get some.

The next day, I saw six or seven self-congratulatory emails from the move team, and replied to one of them expressing my disappointment about the pizza, and that’s the end of the story of the no pizza, as they did not reply. I hoped they would make this right in due time, but reckoned I would not be surprised if they didn’t, and to date, they have not.

Tuesday, May 07, 2019

The Funny One

I have been thinking lately about turning toward what is uncomfortable, the discomfort being sensations in my own body. (Where else could it be?) One place I am encountering an edge is in non-professional listening. There are people I find it incredibly difficult to listen to, and I think the same thing happens for some physicians, who listen to a patient in a leisurely, highly attentive manner for an hour, and then visibly tune out when I’m telling them something and get past the three-second mark (even if I’m answering a question they asked me).

I see that physicians work incredibly long hours and then often have families to tend to, so I know they need to make effective use of every half-second. I suppose it is a testament to their training and character that they can listen so beautifully to patients, and not a failing that they can’t do it with every person who happens to say something to them in the course of a day. As for myself, I aspire to listen to everyone in the same way, which means aspiring to bear the discomfort of fully attending to something I think is boring or irritating—but not always succeeding.

Clementine periodically trains a new crop of chaplain volunteers, and there are three new folks who go to County Hospital the same day I do who are quite young; at least one of them is just 20 years old. I heard one of them telling another about a visit to a room with two patients in it: “They’re both talkers. Like, talker talkers.”

At my paying job, I encountered a nurse in the ICU who had just switched to the day shift. He is a formidable mimic and was really making me laugh. Using a German accent, he said something about “German dancing—just using the arms,” and demonstrated, punching his fists into the air. I said, “You’re very funny,” and he said, “Some nurses are smart—I’m the funny one.”

At the very end of the day, I heard a physician saying to a patient right behind me in the ICU, “A chaplain is a good person to talk about that kind of thing with.” Then I noticed the physician had put a consult order in for a chaplain to see this patient, so I went to see her (as opposed to leaving because it was the end of the day). I knew from her chart that she had was having a recurrence of cancer. It turned out that she wanted me to facilitate a family discussion. I was excited to have the chance to run my own family meeting after seeing so many of them at County Hospital, and discovered that it was way more challenging than I expected: I found myself sharing words of wisdom in a way I rarely do speaking one-on-one with a patient. I think I was feeling pressure to drive toward a certain outcome, and so I didn’t just let things unfold naturally. I think it was basically fine, and I think the family was appreciative, but it highlighted that I’m really a very new palliative care clinician.

Late in February, I was paged to return to the hospital to offer a prayer for a patient in the ICU. I was fried when I got home and pondered the idea that I could end up having to return to the hospital twice the same night, which so far has never happened (and didn’t happen that night). I didn’t get anywhere near enough sleep and, the next morning, felt like my head was packed in cotton. I considered not going to County Hospital, but soldiered on.

I made it through the day. I didn’t attend any family meetings. I went with the team to see two or three patients, and I saw one non-palliative care patient and her son. The patient was reaching end of life and her son was quite upset. The patient herself, who had a dazzling smile, seemed almost jovial. I sat with a dead patient and her longtime partner for quite a while. (She said his final words to her were,
“You look so pretty.”)
 
My monthly palliative care class was about prognostication. We learned that fewer than two percent of patients and their families base their decisions solely on what their doctors say. Lived experience is given much more weight. (However, doctors are generally pretty accurate when it comes to predicting how much time a patient has left.) (Partly because they never say, “Thirteen minutes.” They say “Days to weeks” or “Weeks to months.)

The goal is to give people enough information that they have a sense of control, without overwhelming them, which makes it difficult for them to process what they are hearing and retain executive function. Therefore, communication may unfold over multiple conversations, in which clinicians try to discover where the patient or family member is in their understanding and to join with the person in her hopes and fears, and to make recommendations that are in line with the patient’s goals. It’s important to try to flow with what arises and to remain allied with the patient or family member; arousing resistance in the other person makes everything harder. It is important to remain attentive to the other person’s emotions and agenda.

Hoping along with another person is something we can always do, even if what they hope for is unlikely to happen. “I hope so much that that will happen. And I’m worried that we’re in a different place.” One might say both of these things in the same conversation, or split up into two conversations.

We had a guest instructor that day who said her two words are “wish” and “worry.” She said it can be good just to say, “I wish for that outcome” or “I wish things were different,” and then stop talking. Or, “I’m worried,” and stop talking, and see what the other person says.

Medical tidbits: A person can be sedated enough that she doesn’t realize her airway is obstructed enough to end her life. Medication that relieves nausea also lowers blood pressure, which may not be desired.

That day’s speaker, a physician, shared this quote, from Douglas V. Steere, a Quaker ecumenist (born in Michigan, near the tip of the thumb): “To ‘listen’ another's soul into a condition of disclosure and discovery may be almost the greatest service that any human being ever performs for another.”

The speaker offered a note to his fellow physicians re nurses: “Be nice to nurses. They keep your patients alive.”

During my internship, I had a patient who had survived with metastatic cancer for an extraordinarily long time. She is now gone, so what a lovely surprise to see a photograph of her in the speaker’s slide show, wearing lipstick and a big smile. The quote from her: “Everything takes longer than you think it should, thought it would, except your life.”

Thursday, May 02, 2019

The Collective Brain

The next time I was at County Hospital, the attending was Thomas, who was a palliative care fellow when I was doing Clinical Pastoral Education (mentioned in the previous post). He is really great—so smart and enthusiastic.

After rounds, we went to meet with two family members of a dying patient. Thomas and George, the fellow, explained what they might notice as end of life approached. There might be pauses in the patient’s breathing of as long as 30 or more seconds. At other times, the patient’s breaths might be short and rapid. Neither of these are believed to be uncomfortable for the patient. However, they should call the nurse if short, rapid breaths went on for a long time, as the patient might be in pain. Ditto if the patient was having to use her neck, chest or abdomen muscles to breathe—if she appeared to be struggling to breathe.

Wet breathing sounds can also be heard as death nears, caused by saliva in the patient’s throat. We all have this and mostly swallow it throughout the day without noticing it. When a person becomes unable to swallow, then saliva collects in the throat and the wet sounds are heard. As with short periods of rapid breathing or pauses in breathing, this is not believed to cause the patient distress. However, the nurse should be summoned if wet breathing is accompanied by grimacing or frowning or other obvious signs of distress.

Thomas said he would guess that the patient had hours to days to live, maybe three days, though he said this is hard to estimate. He said he would also not be surprised if the patient died that very day, while if it looked like she might live longer than a week, she might need to leave the hospital. George emphasized that if the patient did end up being moved, it would be only to a place where the same level and type of care would be available, and Thomas added that if it seemed that transferring the patient would jeopardize her well-being in any way, then she would certainly stay right where she was.

After Thomas and George were done sharing this information, and knowing that these family members hoped to be with their loved one when she died, I remembered what Helen said about how patients may choose a solitary moment to sneak off, and shared that. Afterward, I asked Thomas and George if it had been OK that I added that, and they said, “Of course!” So perhaps another role of the chaplain is simply to be part of the collective brain, another person to help remember things.

We visited a patient with a large cancerous mass who was very weak, almost unable to speak. His most fervent wish was to return to his hometown on the other side of the country, where family members had agreed to take him in, but the patient’s physical ability to make this trip seemed very questionable. The physicians and RN talked to the patient about what kind of care he might pursue in his home state, if he’s able to get there, and the topic of hospice was introduced.

The patient closed his eyes, and I got the strong sense that he was suddenly in grief, perhaps thinking that he wanted to go home to live, not to die. I said gently, “I noticed that you closed your eyes when we mentioned hospice. Are you feeling sad?” The patient nodded, and I saw the light bulb go on over Megan’s head, the nurse on the palliative care team. She asked the patient if he would like to know more about the philosophy of hospice care, and after we had left the room, she thanked me for picking up on the patient’s sorrow. I in turn thanked her for taking it from there, and seeking to give the patient information that might allay his distress.

At various times since starting to be a chaplain, I have worried that, as a person who naturally leads with my head, I am not sufficiently empathic, not sufficiently conversant with emotions. I am relieved that this is a skill that can be developed. As I make a point of trying to tune in to what others are feeling, listening for essence rather than information, I see this capability getting stronger.

I’m still pretty new on the palliative care team, and so I’m mostly silent in meetings, though I also try to be brave when I’m pretty sure something I might contribute would be appropriate, and if I get a strong intuition, I act on it.

Another patient we saw that day was also very weak. George asked her something like, “Do you want to do this or do you want to do that?” She stared at him. I whispered, “Maybe ask a yes-no question, so she doesn’t have to work so hard.”

“I know,” said George. “I’m trying to think of one.”

I made a suggestion and George asked the patient that and she gave a clear answer. Again, after we left the room, I received thanks. This team makes a point of noticing and appreciating the contributions of others.

Bony Mets

At County Hospital in mid-February at palliative care rounds, we discussed how patients often confuse metastases to the bone (“bony mets”) with primary bone cancer and think they’re getting the wrong treatment because it’s not what the Internet says should be done for bone cancer.

We had four family meetings scheduled that day. Before one of them, the palliative care fellow at the time, George, mentioned that hospice is both a service and a philosophy of care. He reassured the family of one patient that hospice is attached to the patient, not to a particular location. Wherever the patient ends up, she can get hospice care. Before another meeting later, he told a couple of other physicians that there are generally two things to be decided: what type of care will be provided, and where it will occur. You can uncouple these and tackle one or the other in a given meeting.

When we arrived for a meeting in the afternoon and counted how many chairs were needed, the patient’s family said, “We don’t need chairs,” and that’s how we ended up standing for 90 minutes around a sleeping patient’s bed. A non-palliative care physician started this meeting by saying, “So, what are your goals of care?” He was obviously trying to do the right thing, but I’ve never heard a palliative care provider say anything like that. Quite often, they start by saying something like, “Can you tell us what you understand about your mother’s condition?” Then they might ask if any changes have been observed recently. They ask permission before giving bad news: “We have received your mother’s test results. Do you want to hear about the findings?”

This particular family had gone around and around in prior meetings, and this conversation also went in circles for a while, but eventually it was understood by all in the room that there was nothing that could be done to restore the patient’s health, and also that it would be impossible for her family to care for her at home. We discussed a certain place she might go, and, at 75 minutes in, it was sounding like this was an option the family would be all right with. During the final 15 minutes, one family member after the other thanked us profusely, which was very sweet, though I must say my feet were really killing me by then.

Helen told me in the afternoon that they were going to meet with George to offer him a job at County Hospital after his fellowship ends. I was delighted for him. He is a really sweet person and a wonderful communicator, a master of reflective listening. It occurred to me that another of the palliative care attendings at County Hospital was also a fellow when I first met him, and I thought he was totally fantastic, too.

Around then, I got together with fellow students from my school in Santa Fe; we do this every couple of months. Carol-Joy came to town and we had breakfast at Santaneca and then spent the afternoon playing cards, and Charlie and I also went to Santaneca.

Any Direction Is Fine

I lately read Alice Robb’s Why We Dream: The Transformative Power of Our Nightly Journey. She whips through a huge amount of research pertaining to various aspects of dreams. I learned that we can dream in non-REM sleep, such as when we’re first falling asleep or near the time we wake in the morning. She also writes that the emotional tone of our dreams tends to improve as the night goes on. We might experience anxiety in earlier dreams and joy or pleasure in later ones. It bodes well when we take action in our dreams as opposed to passively observing.

I was most interested in the chapter on lucid dreaming, of course. The one trait shared by successful lucid dreamers is good dream recall, which can easily be improved by keeping a dream journal, which can be handwritten, typed, or voice recordings. Inspired, I put a pad and pencil underneath both of my pillows for capturing notes during the night. The first morning, I recorded a vague couple of snippets. About four days later, I had a long dream in which, in part, I found myself on a beautifully maintained country estate, so perfect it was like a movie set, with the landscaping largely in shades of gold.

I came upon four people and said, “I’m sorry to interrupt you.” They glared at me, and I realized that all four—men and women—were wearing identical gold-colored wigs that featured pony tails. I forged ahead: “What direction is Stadium from here?” I meant a street in Ann Arbor. One of the people told me the answer, but in such a way that I suspected he might intentionally be leading me astray.

However, I then realized I was dreaming, which meant it didn’t matter if the person had given me the right answer or not. I could walk in any direction and enjoy it, because the destination didn’t matter.

Formerly, I tried to follow Stephen LaBerge’s advice, which is that when you awaken in the night after a dream, you should replay the dream until you have it memorized, and then picture yourself back in that dream becoming lucid, affirming over and over as you fall back to sleep, “Next time I’m dreaming, I will realize I’m dreaming.” The reason this did not work for me is that I literally could never—not once—remember to do it. I would wake up, remember my dream, maybe picture myself once becoming lucid in that dream, and the next thing I knew, I’d be waking up after some other dream.

Alice Robb finally convinced me of the necessity for frequent “reality testing.” This is investigating, during the day, whether one is asleep or awake. It’s best to do it 10 or 12 times a day, or more, perhaps every time you pass through a doorway. There are several ways of doing this. You can count your fingers to see if there are five. In a dream, there usually won’t be, or if there are, if you count them a second time, there will definitely be more than five. (Why not fewer than five? Things in dreams invariably proliferate.)

You can see if it’s possible to push a finger on one hand through the palm of the other hand. If you can’t, you’re awake. You can read some text and then read it again. If you’re asleep and dreaming, it won’t be the same the second time. You can look at basically anything and then look at it again to see if it’s the same or if it has morphed. Alice Robb also writes about meditating before bed. I have been meditating in the morning for a long time, but decided to start doing it at bedtime instead, since becoming a proficient lucid dreamer is pretty much the one and only thing on my list of life goals.

Tuesday, April 30, 2019

Unbefriended

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

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

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

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

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

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

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

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

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

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

Sudden Death

At County Hospital early in February, I found that the attending was Clara, who the prior time around did not seem to want me to go anywhere with the group or to attend family meetings; she clearly wanted me to see patients by myself, so I had to be slightly pushy. When she mentioned a meeting that was going to happen that day, I asked if I could attend, and she said, “Sure.” She said it was going to be a “serious illness” discussion with the patient, and gave us a handout on points to be covered in such a meeting, which include getting a sense of what is most important to the patient (quantity versus quality of life) and finding out who the patient wants to make decisions for her if she becomes unable to.

My most recent palliative care class had been on advance care planning: nice synchronicity. Clara asked if I am ever the one to walk a patient through filling out an Advance Health Care Directive form. I said no, but that I’d be happy to take a crack at it. (We had practiced this exact thing in class with “patients” played by professional actors.) Clara said that at one hospital where she worked, they couldn’t hire people called “chaplains” because it was a public hospital, so they hired the exact same people, but called them “advance care planning facilitators,” and they were the ones to discuss these issues with patients and help them fill out the form.

Clara said a question that might come up in a “serious illness” discussion is, “How much are you willing to go through for the possibility of more time?” and she observed that sometimes it’s easier for a patient to discuss this with clinicians she doesn’t know. Sometimes patients worry that they will disappoint their own PCP if they don’t want to continue with treatment.

Clara said she expected the meeting to take a long time, so she was going to try not to have it be about the patient’s religious resources or psycho-social dimensions. She named two other patients she thought I should see by myself, and at the end of the meeting, she started to list patients she thought the group should see together; it turned out there was just one. I asked if I could come along, and she again said, “Sure. Anyone who wants to come is welcome, and if you have other things to do, that’s also fine.”

Off she and I and the nurse and social worker went to see the patient, a woman in her mid-70s with her cousin at her bedside. The cousin, who had some professional experience in these matters, said that she felt that the patient had just hours to live. Clara agreed, and started asked about travel arrangements: “When do you think her daughter will be arriving from Kansas? Will that be today? And her stepson—when do you think he will come? I believe these are her final breaths. If there is anything you would like to say, say it now.” At this, I snapped to attention and stood up from where I had made myself comfortable sitting at the foot of the fold-out chair the cousin had slept on the previous night.

Sure enough, the patient took one more breath, and never another. She died about ten seconds after Clara predicted it. After a few more moments, Clara used her stethoscope to confirm that the patient’s heart had stopped, and the cousin burst into tears. We comforted the cousin, rubbing her back and holding her hand, and our nurse went to tell the patient’s bedside nurse. Clara suggested that maybe I could say a prayer, and so I did, ending with, “Dear Lord, thank you for carrying your beloved child safely home. Amen.” (The patient was Christian.)

Our nurse came back and answered questions for the cousin, who wanted to know, “What happens now?” These procedures have been the same at every hospital I’ve been at to date: the patient is taken to the morgue, and once the family makes arrangements for burial or cremation (or I guess now composting, in some places), their funeral director (or gardener) takes it from there and retrieves the patient’s body from the morgue. Our nurse said that the normal period a deceased patient can remain in the room at County Hospital is two hours, but since family members were en route, an extension would be possible. The cousin said she would like to have the extension. Our nurse said clearly that, in that case, the patient could remain in the room for four hours, but that at that point, it would be important for the family to say goodbye. She reiterated: “At 3 o’clock, someone will come in and remind you that it’s time to take [her] to the morgue.”

(I don’t know about this hospital, but at the one where I did Clinical Pastoral Education, there was a viewing room near the morgue, and a dead patient could be wheeled in there upon request, and I don’t remember there being a time limit, though there was an informal limit as to the number of times a family could request this. Once or twice was felt to be enough.)

After we left the room, I asked Clara how she’d known the patient was taking her final breaths. She said that the rhythm of the patient’s breathing had changed, and that she had begun “agonal” breathing. (Wikipedia: breathing “characterized by gasping, labored breathing, accompanied by strange vocalizations and myoclonus.” The latter means twitching.) Clara demonstrated how the patient’s head had begun to jerk upward with each breath, which caused her chest to move as well, but her chest was no longer filling with air; it was moving along with her head, but not expanding outward. And then there started to be long pauses between breaths. I had no idea all this could unfold in less than 60 seconds, and, needless to say, had not noticed any of it.

Next it was off to our “serious illness” discussion. Before we went into the room, we met with the patient’s primary team physician, who said the patient wasn’t aware he was going to have a palliative care consultation. Clara said that, in that case, she would say that we were from the “Supportive Care” team. You can also do this if you think the patient will freak out because she (wrongly but understandably) equates palliative care with hospice, and hospice with imminent death. (A well-esteemed hospital here in San Francisco calls its palliative care team the “Symptom Management Service” for this very reason.)

Clara had previously announced her intention to get through the main topics listed in the handout she’d given us, and she did a good job. It took about 75 minutes. At times, she sounded almost like an attorney: “Do you want to continue with dialysis? You’re saying you do want to do this? Yes?” The patient was a good sport and answered quite a number of questions, though I could see him tensing up at moments.

This reminded me a bit of when she’d been asking the cousin of the prior patient about travel arrangements. During that, I’d kind of wondered: why? In the Sidewalk Talk online training, I learned that that gathering information divides us and to “listen for essence.” This has since prevented me from asking a huge number of non-pertinent questions. I say to myself, “Why do I need to know this? Listen for essence.” Clearly, in the “serious illness” discussion, it was Clara’s job to find out a whole lot of stuff, and so she had to ask question after question. Maybe it was exactly the same as regards the travel arrangements. I will of course give her the benefit of the doubt, but this points me to another reason it’s good to have a chaplain on a palliative care team (which is the heart of what I plan to write my thesis about this year): the chaplain has the luxury of having to gather very little information, if any at all. The chaplain has the luxury of listening for essence.

One question I was left with after that meeting. The patient was talking about how hard it would be to eschew certain favorite foods. I smiled and nodded at him: I certainly hear that. While I was smiling at him, three physicians and a social worker were staring at him with perfectly neutral expressions. I wonder if they were thinking that my smiling at him was tantamount to announcing that of course no one can be expected to live without doughnuts: “Have six or seven daily!” I might try to remember to ask our social worker about that.

Extraordinary Minister

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

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

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

++

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

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

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

++

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

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

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

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

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

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