Saturday, May 20, 2017


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

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

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

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

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

“Is it legal?”

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

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

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

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

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

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

Thursday, May 18, 2017

Ripping the Night Out of the Arms of the Sun

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

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

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

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

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

Home Visits! Yay!

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

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

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

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

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

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

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

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

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

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

Stay Focused

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

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

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

“Yes,” she said, sounding wary.

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

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

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

What We Still Can Do

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

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

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

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

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

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

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

Terminal Delirium

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

Some signs associated with dying are:

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

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

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

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

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

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

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

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

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

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

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

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

Monday, May 08, 2017

My Worst Nightmare

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

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

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

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

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

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

An Injury that Can’t Be Felt

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

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

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

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

In God’s Hands

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

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

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

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

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

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

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

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

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

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

My Old Nemesis

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

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

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

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

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

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

“Shipment?” he asked politely.

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

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

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


(Click photo to enlarge.)