For some reason, Helen was the palliative care attending at County Hospital two weeks in a row, which was fantastic. During the day, it occurred to me that I felt utterly happy just following this wonderful physician around the hospital. In general, I really enjoy the company of doctors: they’re so smart. Jack the fellow was also still there.
Megan, the palliative care RN, was back from vacation, and again explained a lot of interesting things, including the reason a patient is prohibited from having a code status of DNAR / DNI for 30 days following surgery: if the patient dies within 30 days after surgery, that is a black mark for the surgeon, so the patient has to be kept alive no matter what. It can also happen that tons of care team members will rush to attend to a patient who is in crisis after surgery so that the patient will live long enough to die in the ICU instead of the operating room.
We visited seven patients that day, including an elderly man who was brutally attacked as he walked in a park. He was left for dead, choking on his own blood. Fortunately, the person who did this horrendous thing was taken into custody.
In the afternoon, we had a “pre-meeting” with an absolutely darling young doctor who reported that he was trying to clarify goals of care for his patient, but the relationship had ruptured: “He hates me. He won’t talk to me anymore.” After we heard more details, Jack said that on the spectrum from saying to a patient, “What do you want to do?” and, at the other end, being paternalistic and telling the patient what is going to happen, maybe it was time to aim for being more directive. I offered to skip the meeting, in case having a whole herd of people go in at once would make things worse, but the doctor said the patient didn’t seem to mind having groups visit, so we all went in and sat down around the patient’s bed.
While the patient was clearly frustrated and several times announced he had nothing more to say, even making the lip-zipping motion with his fingers, he didn’t actually seem to mind talking to us, including to his young doctor. However, the conversation seemed to be doubling back on itself a bit, so finally Jack took over and clarified that what was bothering the patient most was a stabbing pain in his arm. There was a bit of discussion about where the patient would go from the hospital, but Jack mainly said, “Let’s treat your pain, and then we’ll take it from there. Is there any pain medication that seems to work for you?”
“Yes!”
“What is that?”
“Tylenol!” shrieked the patient.
When we came out of the room, I said to the young doctor, “How do you feel?” I thought he was going to say, “Great! My patient doesn’t hate me, after all, and the path forward is clear.”
But instead he said, “I feel like a failure: I didn’t manage his pain.”
I said, “You know what you did right? He clearly feels how much you care about him.”
Jack and Helen also reassured the doctor, whose arms were crossed in front of him. Jack said that not an hour earlier, he had felt like he’d blown it in a family meeting, and Helen said not a week goes by that she doesn’t wish a family meeting had gone a different way. (After the earlier family meeting, Helen had reassured Jack, and also given him suggestions for the future. Her main suggestion was to use the pre-meeting to gain clarity on the purpose of the meeting.)
The doctor said he tries to do goals of care discussions himself and not bug the palliative care team, but Helen firmly said, “Things will go better for you and your patients if you rely on your team.” Jack said he agreed with my observation that the patient feels his doctor’s love and care. (I nearly swooned hearing a doctor use the word “love.”)
So, another reason it’s important to have a chaplain on a palliative care team: besides offering support and love to patients and family members, the chaplain may have occasion to nurture other team members.
At the end of the day, Jack said his palliative care rotation at County Hospital was ending, so he would not be seeing me again. He shook my hand and he told me that when he went to a weekly palliative care meeting that practitioners from several hospitals attend, he shared about how powerful he thought my prayer the previous week had been!
Monday, February 18, 2019
Bottom Chaplain
A bit later that same day, I was nearby when a giant gift basket was delivered for the family of the patient with wet breathing. I wanted to see their reaction when it was taken in to them, so I followed the nurse into the room, and thus ended up having the exceedingly rare opportunity to order meds. To my eye, the patient looked like his breathing was even worse, so I texted Helen that he was gasping, and she said to tell the nurse to give him more of a certain medication. She also said, “Jack is coming.” I gave the nurse Helen’s message and in due time, Jack did come. He proved to be a fellow in palliative care and told me that they do three months at the VA, three months at University of California San Francisco Medical Center, a month or two at County Hospital, and stints at various hospices.
He and I went into the patient’s room and chatted with the family. He asked them about restaurants. When Helen arrived, I said to her, “We’ve reached a very important point: they’re about to tell us what the best Korean restaurant here is.” Helen said she definitely wanted to know that, and the conversation continued in a light vein. Helen, Jack and the nurse turned the patient onto his side, which immediately caused the wet breathing sounds to abate, and stuff to start dribbling out of his mouth, which is much better than having it dribble down his throat.
Somewhere along in there, I did go see the non-palliative care patient, who wept when I gave him the rosary he’d requested. He extravagantly admired the prayer I offered and said he hopes one day he can pray as beautifully as I do. I mention it because when I was looking at his chart later, I saw that he has physically attacked other staff and has spat food at them, etc. Maybe it was just a change of mood or change of medication, but it is also true that, while some patients automatically dislike chaplains, many automatically love us.
An hour after the patient with the formerly wet breathing had been turned onto his side, Jack and I went to check on him. He was doing less well, in that he was dead. His family members were weeping as they washed his body. Jack and I were the first care team members to know he had died. One hour before that, we had been talking about Korean food with his family.
Then it was time for a family meeting for another patient on comfort care. We met with four of his relatives in a conference room. One or two of them wept. Another talked nonstop, saying how painful it is to lose the patient, and how much they appreciate how well they’ve been treated. They said they really wanted prayers for the patient. I said I would be happy to pray. As we left the room, the talkative relative asked me, “Are you the top chaplain?”
I said, “No, I’m the bottom chaplain,” and heard Helen chuckle.
Often doctors clear out when praying commences, but that day we went as a group into the patient’s room and held hands while I prayed. I felt a little nervous! This was my very first time praying in front of any palliative care doctor, let alone the one I admire the most, but it was fine, and afterward, the family members gave us all long, long hugs.
Outside the room, a nurse who had been in the room said my prayer had been beautiful, and Helen graciously said, “That was probably the most important thing that happened for that family all day.”
My group of peers from Clinical Pastoral Education met that weekend at the really fabulous place out in the woods that Sam has moved into with his fiancée, and we had a splendid feast.
A couple of days later was my first scheduled Sabbath day. I got a massage, and talked to Martine on the phone. I don’t think I turned on the radio or computer, and it really was a refreshing day.
The next day, I saw my new PCP for the first time. I liked her right away. She spent an entire leisurely hour with me, and agreed to order some labwork I wanted that isn’t standard, including omega 6:3 ratio.
He and I went into the patient’s room and chatted with the family. He asked them about restaurants. When Helen arrived, I said to her, “We’ve reached a very important point: they’re about to tell us what the best Korean restaurant here is.” Helen said she definitely wanted to know that, and the conversation continued in a light vein. Helen, Jack and the nurse turned the patient onto his side, which immediately caused the wet breathing sounds to abate, and stuff to start dribbling out of his mouth, which is much better than having it dribble down his throat.
Somewhere along in there, I did go see the non-palliative care patient, who wept when I gave him the rosary he’d requested. He extravagantly admired the prayer I offered and said he hopes one day he can pray as beautifully as I do. I mention it because when I was looking at his chart later, I saw that he has physically attacked other staff and has spat food at them, etc. Maybe it was just a change of mood or change of medication, but it is also true that, while some patients automatically dislike chaplains, many automatically love us.
An hour after the patient with the formerly wet breathing had been turned onto his side, Jack and I went to check on him. He was doing less well, in that he was dead. His family members were weeping as they washed his body. Jack and I were the first care team members to know he had died. One hour before that, we had been talking about Korean food with his family.
Then it was time for a family meeting for another patient on comfort care. We met with four of his relatives in a conference room. One or two of them wept. Another talked nonstop, saying how painful it is to lose the patient, and how much they appreciate how well they’ve been treated. They said they really wanted prayers for the patient. I said I would be happy to pray. As we left the room, the talkative relative asked me, “Are you the top chaplain?”
I said, “No, I’m the bottom chaplain,” and heard Helen chuckle.
Often doctors clear out when praying commences, but that day we went as a group into the patient’s room and held hands while I prayed. I felt a little nervous! This was my very first time praying in front of any palliative care doctor, let alone the one I admire the most, but it was fine, and afterward, the family members gave us all long, long hugs.
Outside the room, a nurse who had been in the room said my prayer had been beautiful, and Helen graciously said, “That was probably the most important thing that happened for that family all day.”
My group of peers from Clinical Pastoral Education met that weekend at the really fabulous place out in the woods that Sam has moved into with his fiancée, and we had a splendid feast.
A couple of days later was my first scheduled Sabbath day. I got a massage, and talked to Martine on the phone. I don’t think I turned on the radio or computer, and it really was a refreshing day.
The next day, I saw my new PCP for the first time. I liked her right away. She spent an entire leisurely hour with me, and agreed to order some labwork I wanted that isn’t standard, including omega 6:3 ratio.
Patient Abiding
When I next arrived at County Hospital, I was glad to see the attending was Helen. During rounds, she explained a lot of medical stuff to us, though she didn’t say what a fungating tumor is. (Maybe she thought we all already knew. Maybe everyone else did know.) That’s a tumor that has broken through the skin and created a wound. A “spiculated mass” was also mentioned. From the internet: “In oncology, a spiculated mass is a lump of tissue with spikes or points on the surface. It is suggestive but not diagnostic of malignancy, i.e., cancer.”
After rounds, Helen sent me to hang out with a certain patient and said she would meet me at that room. When I got there, I learned that the patient had gone somewhere else for a couple of hours, so I stood nearby to wait for Helen. Robert texted me and asked me to see a non-palliative care patient, which I was happy to do, but I didn’t want to miss Helen, so we agreed I would see the patient later. An hour passed. Fortunately, patient abiding (i.e., standing around waiting and no pun intended) is a key chaplain competency.
Helen texted to say she had lined up an interpreter for a patient on a certain unit, so I went there and continued with my patient abiding. Fifteen more minutes passed. I was now starting to get hungry. It occurred to me that maybe the meeting for which the interpreter was needed was not until the afternoon, so I looked at Helen’s text again and was glad to see that it did have the word “now” in it. I never saw any sign of the interpreter, but a Spanish-speaking Eucharistic Minister happened along and we spoke in Spanish, which caused her to think I can speak it, which I can’t. After I confessed that, she kept speaking in Spanish, anyway, which she said is the only way to learn, even if you make mistakes.
After fifteen more minutes (90 minutes of standing), Helen came along and said the interpreter had come, and that I’d missed her. She didn’t sound particularly peeved, but I apologized, anyway, though if the interpreter had come, I wouldn’t have had the faintest idea what room to go into or what to say to whomever was in there, anyway.
Helen lined up another interpreter and we went to visit a patient who was on comfort care, with a number of family members present. His breathing was a bit labored, so Helen helped to turn him on his side, which she said would make his breathing easier, and she described other kinds of breathing the family might see as death approached: shallow, rapid breaths; long pauses. She pointed out the wet breathing sounds he was also making, and said that this is not uncomfortable for the patient, though it can be uncomfortable for his family to listen to. She said it would be fine to moisten his lips with a wet sponge, or to put Vaseline on his lips, but to make sure not to let any water drip down his throat, because that would cause him to feel uncomfortable.
(I asked her later why water makes the difference between comfort and discomfort when one already has wet breathing and she explained that the gunk that causes the wet breathing is up in the throat, whereas aspirated water ends up in the lungs.)
The family asked how long she thought their loved one would live, and I think she said days to weeks, or maybe she said hours to days. (That is always how doctors express life expectancy, in my experience: one unit of time to the next unit.)
Next I found myself in another patient’s room with the same interpreter and a doctor who had the patient’s test results. Helen was delayed somewhere. I sat down on the low, wide windowsill, but then realized the patient was about to find out she had cancer, so I joined the group. The doctor said, “I have your test results. Do you want to hear what they are?” Some people don’t, particularly in certain cultures. The patient said she did want to hear.
I have many times heard doctors discussing a patient’s condition with him or her, but I have never been present right when someone learns she has a terminal illness. The patient’s head rocked back and her eyes shot wide open. Her relative in the room (who filmed the entire conversation on his phone) said, “Well, those results aren’t conclusive,” and the doctor had to emphasize that the results absolutely were conclusive. The patient has metastatic cancer; the only thing not known was where in her body it originated.
As it happens, this patient was here visiting from her faraway home country and she is old. When she said, “I can’t go home, I can’t go home,” I nearly burst into tears myself, thinking of my beautiful green home state. What if I were to die before I saw it again? That was the most upsetting thing that happened all day. Helen had joined us by then and pointed out that it was lucky that the patient was going to spend this part of her life (i.e., the end of it) here where her children are, and I believe that was indeed the most important thing to the patient. Helen then worked with the patient’s son to get a POLST form signed, and went off to arrange for a local hospice to care for the patient on a charity basis, since she doesn’t have insurance in this country. (The hospice did agree to this.)
After rounds, Helen sent me to hang out with a certain patient and said she would meet me at that room. When I got there, I learned that the patient had gone somewhere else for a couple of hours, so I stood nearby to wait for Helen. Robert texted me and asked me to see a non-palliative care patient, which I was happy to do, but I didn’t want to miss Helen, so we agreed I would see the patient later. An hour passed. Fortunately, patient abiding (i.e., standing around waiting and no pun intended) is a key chaplain competency.
Helen texted to say she had lined up an interpreter for a patient on a certain unit, so I went there and continued with my patient abiding. Fifteen more minutes passed. I was now starting to get hungry. It occurred to me that maybe the meeting for which the interpreter was needed was not until the afternoon, so I looked at Helen’s text again and was glad to see that it did have the word “now” in it. I never saw any sign of the interpreter, but a Spanish-speaking Eucharistic Minister happened along and we spoke in Spanish, which caused her to think I can speak it, which I can’t. After I confessed that, she kept speaking in Spanish, anyway, which she said is the only way to learn, even if you make mistakes.
After fifteen more minutes (90 minutes of standing), Helen came along and said the interpreter had come, and that I’d missed her. She didn’t sound particularly peeved, but I apologized, anyway, though if the interpreter had come, I wouldn’t have had the faintest idea what room to go into or what to say to whomever was in there, anyway.
Helen lined up another interpreter and we went to visit a patient who was on comfort care, with a number of family members present. His breathing was a bit labored, so Helen helped to turn him on his side, which she said would make his breathing easier, and she described other kinds of breathing the family might see as death approached: shallow, rapid breaths; long pauses. She pointed out the wet breathing sounds he was also making, and said that this is not uncomfortable for the patient, though it can be uncomfortable for his family to listen to. She said it would be fine to moisten his lips with a wet sponge, or to put Vaseline on his lips, but to make sure not to let any water drip down his throat, because that would cause him to feel uncomfortable.
(I asked her later why water makes the difference between comfort and discomfort when one already has wet breathing and she explained that the gunk that causes the wet breathing is up in the throat, whereas aspirated water ends up in the lungs.)
The family asked how long she thought their loved one would live, and I think she said days to weeks, or maybe she said hours to days. (That is always how doctors express life expectancy, in my experience: one unit of time to the next unit.)
Next I found myself in another patient’s room with the same interpreter and a doctor who had the patient’s test results. Helen was delayed somewhere. I sat down on the low, wide windowsill, but then realized the patient was about to find out she had cancer, so I joined the group. The doctor said, “I have your test results. Do you want to hear what they are?” Some people don’t, particularly in certain cultures. The patient said she did want to hear.
I have many times heard doctors discussing a patient’s condition with him or her, but I have never been present right when someone learns she has a terminal illness. The patient’s head rocked back and her eyes shot wide open. Her relative in the room (who filmed the entire conversation on his phone) said, “Well, those results aren’t conclusive,” and the doctor had to emphasize that the results absolutely were conclusive. The patient has metastatic cancer; the only thing not known was where in her body it originated.
As it happens, this patient was here visiting from her faraway home country and she is old. When she said, “I can’t go home, I can’t go home,” I nearly burst into tears myself, thinking of my beautiful green home state. What if I were to die before I saw it again? That was the most upsetting thing that happened all day. Helen had joined us by then and pointed out that it was lucky that the patient was going to spend this part of her life (i.e., the end of it) here where her children are, and I believe that was indeed the most important thing to the patient. Helen then worked with the patient’s son to get a POLST form signed, and went off to arrange for a local hospice to care for the patient on a charity basis, since she doesn’t have insurance in this country. (The hospice did agree to this.)
Mother Nature Has Already Made This Decision
Continuing the story from two weeks ago, the doctor also said, in words I wish I could recall exactly, that the husband might be thinking that he was having to make an immensely weighty decision: whether his wife would live or die. But in fact, the doctor said, God had already made this decision. The man’s wife was already gone.
At the end of the meeting, the doctors left the room—the meeting had taken an hour—and the patient’s husband left. I went around the room and shook each person’s hand, which I noted in my chart note, and the next day I woke up feeling like I might have a cold again! I took this as my punishment not so much for touching all those hands, but for the slight whiff of superiority in my charting that I shook everyone’s hand: I, the chaplain, made sure to connect personally with everyone in the room when the doctors did not. Maybe getting a cold because of that very action, and worse, maybe spreading a virus among the family right when their beloved person was dying (if this blog went in for emojis, a frowny face would go here) was my comeuppance and reminder not to judge my colleagues. Also a reminder to touch fewer hands. That contact is nice, but getting a cold or giving someone one is not.
This all came to me during the night, and so once again I sprang out of bed to try to correct an idiotic chart note before too many people saw it. Thank goodness I can log on from home.
The above illustrates one reason spiritual care is essential in palliative care—because, while palliative care isn’t hospice per se, palliative care patients are often approaching end of life, and end of life, as one mentor of mine has said, is a spiritual experience. When a person comes face to face with the death of her mother, or sister, or husband or wife, it automatically engages her profoundest beliefs, her deepest fears, and what is unshakably true for her.
I went to visit Emily for the first time since she graduated from hospice (the terminology used when a hospice patient’s life expectancy ceases to be six months or less). She now lives in quite a nice old folks’ home. Her room has a view of the lovely yard. Emily was lying on top of her bed wearing street clothes and looked quite glamorous, with blusher on her cheeks, newly penciled eyebrows and orange lipstick. She has fantastic cheekbones. She told me she’s letting her hair grow long enough to wear it in a French twist, and advised me to look into some lip balm with a bit of color, but not to experiment with lipstick: “You wouldn’t recognize yourself.”
She told me about her current challenges and grumbled about how she had been told by someone in her former hospice facility that she was “slowly declining.”
“Everybody’s slowly declining, FYI,” she says she told the person.
At the end of the meeting, the doctors left the room—the meeting had taken an hour—and the patient’s husband left. I went around the room and shook each person’s hand, which I noted in my chart note, and the next day I woke up feeling like I might have a cold again! I took this as my punishment not so much for touching all those hands, but for the slight whiff of superiority in my charting that I shook everyone’s hand: I, the chaplain, made sure to connect personally with everyone in the room when the doctors did not. Maybe getting a cold because of that very action, and worse, maybe spreading a virus among the family right when their beloved person was dying (if this blog went in for emojis, a frowny face would go here) was my comeuppance and reminder not to judge my colleagues. Also a reminder to touch fewer hands. That contact is nice, but getting a cold or giving someone one is not.
This all came to me during the night, and so once again I sprang out of bed to try to correct an idiotic chart note before too many people saw it. Thank goodness I can log on from home.
The above illustrates one reason spiritual care is essential in palliative care—because, while palliative care isn’t hospice per se, palliative care patients are often approaching end of life, and end of life, as one mentor of mine has said, is a spiritual experience. When a person comes face to face with the death of her mother, or sister, or husband or wife, it automatically engages her profoundest beliefs, her deepest fears, and what is unshakably true for her.
I went to visit Emily for the first time since she graduated from hospice (the terminology used when a hospice patient’s life expectancy ceases to be six months or less). She now lives in quite a nice old folks’ home. Her room has a view of the lovely yard. Emily was lying on top of her bed wearing street clothes and looked quite glamorous, with blusher on her cheeks, newly penciled eyebrows and orange lipstick. She has fantastic cheekbones. She told me she’s letting her hair grow long enough to wear it in a French twist, and advised me to look into some lip balm with a bit of color, but not to experiment with lipstick: “You wouldn’t recognize yourself.”
She told me about her current challenges and grumbled about how she had been told by someone in her former hospice facility that she was “slowly declining.”
“Everybody’s slowly declining, FYI,” she says she told the person.
Monday, February 04, 2019
Spidey Sense
One day I went to a party honoring my boss at my paying job, whose last day had been scheduled for the end of that week, but by the time party day rolled around, she had agreed to stay on for a couple of months, which was excellent news from my point of view. Celebrants included two staff chaplains, three CPE students, my boss’s boss, and several members of the Professional Advisory Group, who oversee the CPE program.
My boss received gifts and kind words, and poems were read; it was an inspiring event. We each shared a word we associate with her. Mine was “benefactor.” After I said it, we bowed to each other. The final thing on the agenda was a catered lunch. I thought I would leave at that point—I was still not feeling great—but one of the PAG members, a physician, sidled over to me and firmly instructed me to tell my boss’s boss something compelling about chaplaincy, so I told him an anecdote about a recent difficult patient where pastoral care (namely mine) had made a positive difference.
(Earlier, another PAG member asked him about his support for chaplaincy in the whole organization, well above our four campuses. He has little knowledge of this, but shared what he could. The PAG member asked again, more insistently. At this point, my boss’s boss’s arms were crossed in front of him and he was frowning. I wanted to tell the PAG member to lay off: “He doesn’t know!” To his credit, my boss’s boss said he would try to learn more about this. I joked, “In your spare time,” and he smiled at me. His responsibilities go way, way beyond spiritual care. He listed the areas in his domain, and there are an awful lot of them, so I can see why the PAG members are anxious for him to have a special feeling for chaplains. However, that he even came to our party and said directly that he is committed to spiritual care and to our CPE program says a lot. He seemed like a nice guy. I liked him.)
In the palliative care rounds meeting early the next week, I asked if someone could explain briefly how they assess for risk of complicated grief. One of the doctors gave an extremely pithy 45-second explanation, which I was able to capture probably less than half of, but she mentioned: if the survivor has a drug or alcohol problem, if she is isolated, if she had been estranged from the patient. The patient having had a long course in the ICU is a risk factor, as is sudden death, or if the survivor seems shocked, and certainly if she verbalizes that this loss is particularly destabilizing for her. “And then there’s always our spidey sense,” the doctor concluded.
During the meeting, another doctor said that a patient “had the dwindles.”
A doctor mentioned that there was going to be a family meeting for a patient both Merlin and I had visited. Invitations for chaplains to attend such meetings do not seem to be forthcoming—though, as always, one of the doctors was careful to consider for every patient we discussed whether spiritual care was needed—so I invited myself: “Would you like a chaplain to attend?” The doctor right away said that would be fine and that she’d meet me near the patient’s room.
At the meeting, a specialist I’d never seen before (he was TV handsome) explained that he had thought the patient would get better after period of intubation, but it didn’t happen that way. He said that, in the way you can be left with an ugly scar after healing from a burn, her lungs had healed wrong and would never improve. I asked if I could say something and, with the doctor’s permission, led the group in a brief moment of silence, to start to digest this news. I wish I had the nerve to make such periods a full 60 seconds, and maybe someday I will, but for this one, I contented myself with taking three breaths and then saying, “Thank you.” Really, the person who can’t tolerate the silence is me, because I think it’s torturing everyone else.
Medical options were discussed. The patient’s husband turned red in the face. He said he understood that the patient’s prognosis was very poor, but that it was just too hard to contemplate letting her go. The doctor said another option was to continue with the current treatment, but not to escalate care when a problem inevitably occurred.
The husband said he knew it was probably best to withdraw life-sustaining treatment, but that he felt weak; he just couldn’t do it. He said that part of him was still hoping for a miracle, and that, as a Catholic, he was reluctant to play God.
The doctor said that a law has been passed in California that says a doctor can decide not to provide treatment he or she knows is not helping, without fear of legal repercussions. He said he was mentioning it because it meant that the responsibility could be his rather than the husband’s. The husband could leave it to the doctor to decide on treatment. And then the doctor said something I thought was jaw-droppingly brilliant, which I have already said to a patient at least once since then and will probably say a thousand times from now on. Using the family’s language, the doctor said, “God has already made this decision.” I thought this was remarkable for two reasons. It was very kind, in that it lifted off the husband’s shoulders the burden of trying to make a life-or-death decision. And it was absolutely, completely true. Mother Nature, as always, was in charge.
Another family member agreed that it would be the same no matter what choice was made. In the end, the patient would die. The question was whether this would be after a lot more suffering, or less. What the patient would want was discussed: definitely not what she currently had. People wept. And before the meeting ended, the husband said, “All right, let’s go ahead.”
The three doctors agreed and left the room. They all seemed to understand what had been communicated, but I couldn’t figure out whether the husband had meant, “Let’s continue with the current treatment but not escalate,” or, “Let’s withdraw life-sustaining treatment.”
Fortunately, while I was charting, the palliative care doctor who had been at the meeting (the one who said I could come) came up to thank me for being there, and I had the chance to ask her how all the doctors had known what the husband meant. She said it was context—that they had for some time been discussing removing life support. That made me feel better.
My boss received gifts and kind words, and poems were read; it was an inspiring event. We each shared a word we associate with her. Mine was “benefactor.” After I said it, we bowed to each other. The final thing on the agenda was a catered lunch. I thought I would leave at that point—I was still not feeling great—but one of the PAG members, a physician, sidled over to me and firmly instructed me to tell my boss’s boss something compelling about chaplaincy, so I told him an anecdote about a recent difficult patient where pastoral care (namely mine) had made a positive difference.
(Earlier, another PAG member asked him about his support for chaplaincy in the whole organization, well above our four campuses. He has little knowledge of this, but shared what he could. The PAG member asked again, more insistently. At this point, my boss’s boss’s arms were crossed in front of him and he was frowning. I wanted to tell the PAG member to lay off: “He doesn’t know!” To his credit, my boss’s boss said he would try to learn more about this. I joked, “In your spare time,” and he smiled at me. His responsibilities go way, way beyond spiritual care. He listed the areas in his domain, and there are an awful lot of them, so I can see why the PAG members are anxious for him to have a special feeling for chaplains. However, that he even came to our party and said directly that he is committed to spiritual care and to our CPE program says a lot. He seemed like a nice guy. I liked him.)
In the palliative care rounds meeting early the next week, I asked if someone could explain briefly how they assess for risk of complicated grief. One of the doctors gave an extremely pithy 45-second explanation, which I was able to capture probably less than half of, but she mentioned: if the survivor has a drug or alcohol problem, if she is isolated, if she had been estranged from the patient. The patient having had a long course in the ICU is a risk factor, as is sudden death, or if the survivor seems shocked, and certainly if she verbalizes that this loss is particularly destabilizing for her. “And then there’s always our spidey sense,” the doctor concluded.
During the meeting, another doctor said that a patient “had the dwindles.”
A doctor mentioned that there was going to be a family meeting for a patient both Merlin and I had visited. Invitations for chaplains to attend such meetings do not seem to be forthcoming—though, as always, one of the doctors was careful to consider for every patient we discussed whether spiritual care was needed—so I invited myself: “Would you like a chaplain to attend?” The doctor right away said that would be fine and that she’d meet me near the patient’s room.
At the meeting, a specialist I’d never seen before (he was TV handsome) explained that he had thought the patient would get better after period of intubation, but it didn’t happen that way. He said that, in the way you can be left with an ugly scar after healing from a burn, her lungs had healed wrong and would never improve. I asked if I could say something and, with the doctor’s permission, led the group in a brief moment of silence, to start to digest this news. I wish I had the nerve to make such periods a full 60 seconds, and maybe someday I will, but for this one, I contented myself with taking three breaths and then saying, “Thank you.” Really, the person who can’t tolerate the silence is me, because I think it’s torturing everyone else.
Medical options were discussed. The patient’s husband turned red in the face. He said he understood that the patient’s prognosis was very poor, but that it was just too hard to contemplate letting her go. The doctor said another option was to continue with the current treatment, but not to escalate care when a problem inevitably occurred.
The husband said he knew it was probably best to withdraw life-sustaining treatment, but that he felt weak; he just couldn’t do it. He said that part of him was still hoping for a miracle, and that, as a Catholic, he was reluctant to play God.
The doctor said that a law has been passed in California that says a doctor can decide not to provide treatment he or she knows is not helping, without fear of legal repercussions. He said he was mentioning it because it meant that the responsibility could be his rather than the husband’s. The husband could leave it to the doctor to decide on treatment. And then the doctor said something I thought was jaw-droppingly brilliant, which I have already said to a patient at least once since then and will probably say a thousand times from now on. Using the family’s language, the doctor said, “God has already made this decision.” I thought this was remarkable for two reasons. It was very kind, in that it lifted off the husband’s shoulders the burden of trying to make a life-or-death decision. And it was absolutely, completely true. Mother Nature, as always, was in charge.
Another family member agreed that it would be the same no matter what choice was made. In the end, the patient would die. The question was whether this would be after a lot more suffering, or less. What the patient would want was discussed: definitely not what she currently had. People wept. And before the meeting ended, the husband said, “All right, let’s go ahead.”
The three doctors agreed and left the room. They all seemed to understand what had been communicated, but I couldn’t figure out whether the husband had meant, “Let’s continue with the current treatment but not escalate,” or, “Let’s withdraw life-sustaining treatment.”
Fortunately, while I was charting, the palliative care doctor who had been at the meeting (the one who said I could come) came up to thank me for being there, and I had the chance to ask her how all the doctors had known what the husband meant. She said it was context—that they had for some time been discussing removing life support. That made me feel better.
My New Best Friend: Cough Syrup with Codeine
One Friday early in January was a great day. I woke up still feeling lousy, and had to call my boss to let her know I might not be able to work the very next day. (That was not the great part.) She was not pleased and said to call my doctor. I told her I didn’t have one (since I had just gotten new insurance for the third year in a row), and she said to get one, and recommended choosing a primary care provider who works at our integrative health center. I used to have a co-worker whose PCP was at this place. He really liked her, but when I looked her up recently, she was not listed.
I called the integrative health center to try to find someone else and learned that the person my co-worker liked is still there. She’s a nurse practitioner, not a doctor. At first I was pleased, but then I hesitated. Since I’m getting old, maybe it would be better to have an internal medicine doctor as my PCP. I described my dilemma to the receptionist, who I was sure was going to say, “Don’t know what to tell you, ma’am,” but instead she said that this nurse practitioner is trained in gerontology. Sold!
Next I called my longtime ob/gyn to see if she takes this new insurance of mine. She does!
Then I called the advice nurse, who, after hearing about my symptoms, told me to go to urgent care or the ED. I walked over to urgent care, a brand-new, pleasant place, and saw two very nice practitioners, and was handed a wad of prescriptions. I walked to Walgreens to have them filled, where my new insurance saved me $131.65! (I paid about $40, instead of $170 or so.)
At home, I went to update my document on cold procedures with this exciting case study and was reminded that there is no drug that will cure a cold, so you may as well treat the symptoms.
It is a superstition of mine that you should do, right around the time the new year starts, what you want there to be a lot of in the coming year. For that reason, I volunteered to work on New Year’s Day in 2018, because I wanted to do a lot of chaplaining in 2018. I was accordingly scheduled to work on both New Year’s Eve, 2018, and New Year’s Day, 2019, but did neither, because I was sick, so I hope 2019 isn’t full of being sick.
After I went to urgent care and took the various things the physician assistant there prescribed—cough syrup with codeine, cough pills, and albuterol via an inhaler—I had a wonderful night’s sleep. From now on, when I get a cold, I plan to go to urgent care right away, since treating cold symptoms may make all the difference when it comes to getting a good night’s sleep.
The fact that this cold lasted for so long made me worry that my immune system must be shot and that cancer is right around the corner, so I was relieved when I finally returned to work and encountered a co-worker who is 20 years younger than I am and who was still trying to get over a similar cold; she said it had lasted way longer than her colds usually do.
An unrelated but perhaps interesting snippet: I did some required online training that day and learned that 25 percent of people who die by suicide were seen in the ER for non-psych reasons in the 12 months prior to their death.
I called the integrative health center to try to find someone else and learned that the person my co-worker liked is still there. She’s a nurse practitioner, not a doctor. At first I was pleased, but then I hesitated. Since I’m getting old, maybe it would be better to have an internal medicine doctor as my PCP. I described my dilemma to the receptionist, who I was sure was going to say, “Don’t know what to tell you, ma’am,” but instead she said that this nurse practitioner is trained in gerontology. Sold!
Next I called my longtime ob/gyn to see if she takes this new insurance of mine. She does!
Then I called the advice nurse, who, after hearing about my symptoms, told me to go to urgent care or the ED. I walked over to urgent care, a brand-new, pleasant place, and saw two very nice practitioners, and was handed a wad of prescriptions. I walked to Walgreens to have them filled, where my new insurance saved me $131.65! (I paid about $40, instead of $170 or so.)
At home, I went to update my document on cold procedures with this exciting case study and was reminded that there is no drug that will cure a cold, so you may as well treat the symptoms.
It is a superstition of mine that you should do, right around the time the new year starts, what you want there to be a lot of in the coming year. For that reason, I volunteered to work on New Year’s Day in 2018, because I wanted to do a lot of chaplaining in 2018. I was accordingly scheduled to work on both New Year’s Eve, 2018, and New Year’s Day, 2019, but did neither, because I was sick, so I hope 2019 isn’t full of being sick.
After I went to urgent care and took the various things the physician assistant there prescribed—cough syrup with codeine, cough pills, and albuterol via an inhaler—I had a wonderful night’s sleep. From now on, when I get a cold, I plan to go to urgent care right away, since treating cold symptoms may make all the difference when it comes to getting a good night’s sleep.
The fact that this cold lasted for so long made me worry that my immune system must be shot and that cancer is right around the corner, so I was relieved when I finally returned to work and encountered a co-worker who is 20 years younger than I am and who was still trying to get over a similar cold; she said it had lasted way longer than her colds usually do.
An unrelated but perhaps interesting snippet: I did some required online training that day and learned that 25 percent of people who die by suicide were seen in the ER for non-psych reasons in the 12 months prior to their death.
Complain and It Shall Be Given to You
And I didn’t even have to complain to my boss. Complaining here and to myself and my friends did the trick. Very good news! First thing in January, my boss, as predicted by me, assigned one of the new full-time chaplains to be a palliative care chaplain in my place. No more getting to call myself a palliative care chaplain at my paying job, and no more attending the weekly palliative care rounds meeting. However, I now have met all the folks who attend that meeting, so that is good.
We per diems are now back to doing what no one else wants to do: 24-hour on-call shifts. In an effort to give me as many hours a week as possible, my boss assigned me two of them per week. This is excellent. I will no longer be covering the ICUs or oncology. (Which also means no more wearying ICU rounds meetings.) Instead I will cover transplant, which has plenty of palliative care patients, so I will continue to learn about palliative care (which, as you know, is the main topic of this blog at the moment), and, best of all, I will be back to working just two days a week at my paying job.
Per the pending change of units, I have been thinking about transplant. I remember from Clinical Pastoral Education that transplant patients can be really sick: they have whatever caused them to need a transplant—heart, liver or kidney problems—plus they are on drugs that help keep their bodies from rejecting the new organ. No doubt the drugs have unpleasant side effects, plus the patient’s immune system is suppressed, so they are vulnerable in that way, on top of being quite ill and just having been through a major surgery.
Furthermore, the patient is probably receiving an organ because someone else has died, so it seems like a complex and challenging situation, including emotionally. I spoke to a patient who had been offered a possible transplant and who had turned it down. He wept as he said, “If I were to get someone else’s heart, would I still be myself?” He literally preferred to risk death than to receive the heart of another person.
I have acquired the book Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match, by Vanessa Grubbs, MD. She spoke at my monthly palliative care class a couple of months ago, and I had also heard her on NPR. (Spoiler alert: she donated a kidney of her own to a patient, and also married him.) I also got When Death Becomes Life: Notes from a Transplant Surgeon, by Joshua D. Mezrich, MD. I heard him on NPR, too. Thanks to the newly instituted weekly Sabbath, I will have time to read these books soon. (I lately read and enjoyed Critical Care: A New Nurse Faces Death, Life, and Everything in Between, by Theresa Brown.)
In the first week of the new year, Tom’s niece had us over for a lovely, simple dinner at her place. We had roasted chicken, roasted potatoes, and spinach. Tom picked up nice olives from Whole Foods as an appetizer.
The next day, I had lunch with one of my former Clinical Pastoral Education supervisors. I brought an entire box of Puffs Plus Lotion with me (the Cadillac of tissues) and coughed my way through our meal at Ladle & Leaf. I told her what I’ve been up to and she said I have done a good job of getting the kinds of experience that will please potential employers. She pointed out that I now have palliative care experience in three different hospital systems.
We per diems are now back to doing what no one else wants to do: 24-hour on-call shifts. In an effort to give me as many hours a week as possible, my boss assigned me two of them per week. This is excellent. I will no longer be covering the ICUs or oncology. (Which also means no more wearying ICU rounds meetings.) Instead I will cover transplant, which has plenty of palliative care patients, so I will continue to learn about palliative care (which, as you know, is the main topic of this blog at the moment), and, best of all, I will be back to working just two days a week at my paying job.
Per the pending change of units, I have been thinking about transplant. I remember from Clinical Pastoral Education that transplant patients can be really sick: they have whatever caused them to need a transplant—heart, liver or kidney problems—plus they are on drugs that help keep their bodies from rejecting the new organ. No doubt the drugs have unpleasant side effects, plus the patient’s immune system is suppressed, so they are vulnerable in that way, on top of being quite ill and just having been through a major surgery.
Furthermore, the patient is probably receiving an organ because someone else has died, so it seems like a complex and challenging situation, including emotionally. I spoke to a patient who had been offered a possible transplant and who had turned it down. He wept as he said, “If I were to get someone else’s heart, would I still be myself?” He literally preferred to risk death than to receive the heart of another person.
I have acquired the book Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match, by Vanessa Grubbs, MD. She spoke at my monthly palliative care class a couple of months ago, and I had also heard her on NPR. (Spoiler alert: she donated a kidney of her own to a patient, and also married him.) I also got When Death Becomes Life: Notes from a Transplant Surgeon, by Joshua D. Mezrich, MD. I heard him on NPR, too. Thanks to the newly instituted weekly Sabbath, I will have time to read these books soon. (I lately read and enjoyed Critical Care: A New Nurse Faces Death, Life, and Everything in Between, by Theresa Brown.)
In the first week of the new year, Tom’s niece had us over for a lovely, simple dinner at her place. We had roasted chicken, roasted potatoes, and spinach. Tom picked up nice olives from Whole Foods as an appetizer.
The next day, I had lunch with one of my former Clinical Pastoral Education supervisors. I brought an entire box of Puffs Plus Lotion with me (the Cadillac of tissues) and coughed my way through our meal at Ladle & Leaf. I told her what I’ve been up to and she said I have done a good job of getting the kinds of experience that will please potential employers. She pointed out that I now have palliative care experience in three different hospital systems.
Just Sabbath the Second
Late in December, at palliative care rounds at County Hospital, I asked if a member of the palliative care team is ever the one to, for instance, tell a patient of her diagnosis. Attending physician Amy said that the palliative care team should coordinate with the primary team in regard to giving the patient bad news, so that all are in the loop and as a courtesy. It’s also important, she said, for medical residents to learn this skill. (Doctors not on the palliative care team.)
We visited a patient who had been confused the day before, with the goal of determining if he wanted to stay in the hospital for treatment of his serious medical condition (longer life) or go home with hospice (better quality of life but maybe not as long). This visit was a good example of why it can be helpful to make a team visit to a patient.
The attending described the choices in a way that seemed clear to me, but the patient, who had been direct in expressing that he didn’t want to linger in the hospital, said he didn’t understand what she was getting at. After she tried a second and third time to explain the options, the social worker said to the patient, “You want us to be direct with you, right?”
“Right!” said the patient.
“If you stay in the hospital, you will live longer. If you go home, you will die sooner.” The patient finally understood (and said he would prefer to stay in the hospital, in that case).
I had a nice Christmas in Sacramento with Tom’s family, including a fabulous Christmas Eve feast at Paul and Eva’s. Christmas itself was quiet. Tom watched TV, Ann rested, and I read academic articles about palliative care, specifically the management of pain, as one does. In the afternoon, we went to Robin’s house and sat around chatting and snacking. I ate way, way too much cheese, and next thing I knew, I was sick, and on the last day of the year, had to take my first day off work due to illness in 15 months.
It was kind of a nice day: I lay in bed and started Lee Childs’ first Jack Reacher novel, Killing Floor. Things had seemed difficult since adding the two additional work shifts per week. It felt like I never had an unscheduled minute. If one has to feel lousy and be coughing up green stuff just to be able to lie in bed and read a novel, something is wrong. Whoever had been making my schedule had been doing it in an inconsiderate manner. That person, of course, was me.
I had three days off every single week at that point—why wasn’t even one of them relaxing? I decided to establish a real weekly day off: the Sabbath (which does not have to be the same day every week). Suitable Sabbath activities: reading for pleasure, seeing a friend or talking to same on the phone, sleeping, posting to this very blog, cooking (like an actual colorful, fragrant pot of soup, not just the chopping of vegetables and rinsing of greens I do every week), getting a massage.
We visited a patient who had been confused the day before, with the goal of determining if he wanted to stay in the hospital for treatment of his serious medical condition (longer life) or go home with hospice (better quality of life but maybe not as long). This visit was a good example of why it can be helpful to make a team visit to a patient.
The attending described the choices in a way that seemed clear to me, but the patient, who had been direct in expressing that he didn’t want to linger in the hospital, said he didn’t understand what she was getting at. After she tried a second and third time to explain the options, the social worker said to the patient, “You want us to be direct with you, right?”
“Right!” said the patient.
“If you stay in the hospital, you will live longer. If you go home, you will die sooner.” The patient finally understood (and said he would prefer to stay in the hospital, in that case).
I had a nice Christmas in Sacramento with Tom’s family, including a fabulous Christmas Eve feast at Paul and Eva’s. Christmas itself was quiet. Tom watched TV, Ann rested, and I read academic articles about palliative care, specifically the management of pain, as one does. In the afternoon, we went to Robin’s house and sat around chatting and snacking. I ate way, way too much cheese, and next thing I knew, I was sick, and on the last day of the year, had to take my first day off work due to illness in 15 months.
It was kind of a nice day: I lay in bed and started Lee Childs’ first Jack Reacher novel, Killing Floor. Things had seemed difficult since adding the two additional work shifts per week. It felt like I never had an unscheduled minute. If one has to feel lousy and be coughing up green stuff just to be able to lie in bed and read a novel, something is wrong. Whoever had been making my schedule had been doing it in an inconsiderate manner. That person, of course, was me.
I had three days off every single week at that point—why wasn’t even one of them relaxing? I decided to establish a real weekly day off: the Sabbath (which does not have to be the same day every week). Suitable Sabbath activities: reading for pleasure, seeing a friend or talking to same on the phone, sleeping, posting to this very blog, cooking (like an actual colorful, fragrant pot of soup, not just the chopping of vegetables and rinsing of greens I do every week), getting a massage.
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