Intersecting worlds: Bearing Witness

Back in November, I did a very interesting, and personally moving consult. More recently, I had a personal experience that brought that consult back to the foreground, and connected parts of my life in ways I never expected.

Some background here is required (bear with me for a minute)

• March 3rd, 2004: Multnomah County, Oregon starts to issue marriage licenses to same sex couples.
• March 5, 2004: my partner and I join the around the block queue in the rain and get married.
• November, 2004: Measure 36 passes 57% to 43%, amending the Oregon State Constitution to state that “only a marriage between one man and one woman shall be valid or legally recognized as a marriage.”
• April 14, 2005: the Oregon State Supreme Court rules that the licenses issued by Multnomah County to same sex couples are void (i.e. I got “unmarried” by the state).
• May 9, 2007: A new domestic partner bill that was passed by the state legislature is signed into law by the governor, making discrimination based on sexual orientation and gender identification illegal, and instituted domestic partnerships, with almost all the rights and responsibilities of marriage, available to same sex couples. Both laws were to go into effect on January 1, 2008.
• An effort is started to get initiatives on the ballot to overturn both these laws. The initiative efforts fail, however the anti-domestic partnership signature drive is only 96 signatures short.
• Friday, December 28, 2007: an out of state group, the Alliance Defense Fund manages to get a U.S. District judge to put a hold on the domestic partnership law (the argument is that the state’s review process was flawed, disenfranchising citizens who had signed petitions). There will be a hearing on February 1.

So what does this have to do with a consult in November? This consult was with “J.” who has a life-threatening terminal illness with an uncertain trajectory and increased frequency of exacerbations (9 ED visits, 7 hospitalizations since July). While he was “well known to the Palliative Care service,” there was a question of capacity. It being right before Thanksgiving, there was only two of us on that day: the N, the PCT MD and me. N. asked me if I knew how to do a mini-mental status exam (MMSE) and when I said “yes” asked if I would do a screening with this patient, as well as anything else that might be helpful in terms of discussion of goals and education about hospice. N. described the patient as a “talker” and it was pretty clear she didn’t want to get caught up in a long involved conversation. I went, and we wound up talking for three hours! It felt like such a gift to be able to give that time to this person who clearly needed company.

Before I went, N. commented that she thought the patient might be gay. Reading through his notes it was pretty clear to me that he was, but figured I’d just go and let the meeting unfold as it would.

As we were talking, I found out that yes, he was gay, and lived with a very supportive partner. As the conversation continued, I tried to help him with some goals clarification. At first he couldn’t think of anything that he wanted to achieve, and he mostly mourned the loss of function he had experienced. But as we were talking, he did come up with one thing: he wanted to make it to January so that he and his partner of 20+ years could register their relationship. It seemed to be a good thing that he was able to come up with something definite to look forward to.

Fast forward to New Year’s Day. I’m talking to some friends at my annual New Year’s Day open house, and I suddenly think of J. On top of my own sorrow and anger about not being able to register my relationship, I feel an overwhelming sadness at the thought that J might not be able to achieve this goal—all because of a few ugly, hateful people.

On Wednesday, January 2^nd, there was supposed to be several grand celebrations hosted across Oregon by Basic Rights Oregon to celebrate the new laws. These celebrations were turned into candlelight vigils. My partner met me at the one in town. There were the usual speeches by politicos, but at the end there was a short “open mike” for anyone who wanted to talk about how the situation impacted their lives. I decided to talk about J and his plight—how this delay may be more than just a delay for someone like him with a limited time to live. The story was well received, and several people thanked me for sharing it.

A lot of end-of-life care involves bearing witness, and I've done my share of fulfilling this role. A lot of social activism involves speaking up and not being silenced, and I spend a lot of time trying to meet this aim. I’ve been doing EOL care for about 10 years now, been a social activist for over 30 years. This is the first time I have seen those two parts of my life so clearly , and painfully, linked.

Channeling Oscar

You know Oscar? The cat in the nursing home who cuddles up with people who are about to die? I’m starting to feel a bit like him. So far, as part of my fellowship I’ve charted on two people. The first one was clearly actively dying, although I thought it would be a few days before he was gone. After visiting with him and his nurse, and discussing the situation with G., she told me to write up the note and recommendations. Before I could get to it we had our weekly didactic. By the time I got back to my desk, he had passed.

Then there was last week. It was very exciting, we had a new consult, and G. suggested I “take the lead.” The first time we went to see the patient (delirium over dementia, hospitalized for pneumonia) was not conscious and his daughter had gone for the day, so we had an extensive talk with the (adult) grandson. Mostly we got background on the patient’s living situation, his character and values, and the course of this present illness. On Wednesday I said I wanted to go up and visit with the patient and family, and we agreed it was OK for me to go by myself. This time the daughter was there, and we got more clarification of goals and desires regarding level of treatment. I also consulted with the nurse, who happened to be an old friend of mine, which made it a lot easier. After a while, I went back to our “little tin shed,” discussed with G. what our recommendations should be and worked on the note I’d started the day before. I had even come up with a few recommendations of my own. I left feeling pleased with my progress and competence.

On Thursday, I looked up the patient’s chart from home (I have remote access and our records are almost all electronic) and found out he’d died at 0500 that day!

Made me feel a bit odd, especially since he didn’t appear to even be actively dying. I did notice that our recommendations had been implemented, and I felt like my conversations with the family had been helpful for them and the hospital staff.

If it happens again next week, I don’t know what I’ll think!

Adult Learners

You know how it goes, you’re an adult, you’ve been competent at what you do for umpty-ump years, then you go into a new field/specialty/approach and feel so frustrated at yourself because you’re not competent right off the bat. And if you’re really lucky, you also spend too much time comparing yourself with others.

So I’m three weeks into my palliative care fellowship. Since I’m only working two days a week, that’s six days, or an ooch over one work week. Coming in, G., the nurse practitioner I work with (under?) said “we’ll take it slow, I won’t expect you to start doing consultations until December.” That said, the first day, after seeing a patient she turns to me and says “so, what do you think? What should we do for his symptom?” And I stood there, mind blank, furiously trying to come up with something to say…and feeling like a complete failure.

This happened a few more times, and I either didn't have anything intelligent to say or couple of times I got stuck on something that wasn’t at all what she was looking at—again making me feel like a fool. It was also frustrating that we only had about three new consults over this time period, so I’m not getting a ton of exposure.

And then there’s the personalities and more comparing. This fellowship is interdisciplinary: there are two MDs, a social worker, a psychiatric post-doc, two chaplains and me (who is NOT an NP, and the position is theoretically for NPs). The docs, social worker and I share a room, the chaplains and psychiatrist are someplace else, as are their mentors. Were in the building G (not so fondly) calls the “little tin shack.” It’s a small building below the hospital (walk across an open area and then either take 4 flights of stairs or go into the parking garage and use the elevator). We have no windows (we’re on the downhill side of the building, so I think we’re actually underground). G, W., the social worker and T. the MD’s offices are across the hall from us fellows shared space. When I started, the only person there was one of the medical fellows. She’s rotating out to another setting next week. The social worker hasn’t started yet. So of course, I took the nicest open space. And then I get told I have to move b/c the social work fellow needs to have more access to the phone (there’s two in the room). And the current MD fellow tells the other one (they're overlapping by one week) “You take my space after I’m gone, it’s got all this nice work space, it’s like a command center.” So I feel like “once again the nurse gets the dregs.” Of course it’s not true, it’s reasonable, the MD is full time, I’m sure the social worker is on the phone a lot, but it still leaves me feeling like….less.

Can we talk overachieving, or at least trying to overcompensate? The new MD fellow has questions about the computer system. Hey, I’ve worked in the VA for four years! I can be of help here! And I try too hard, and D., the other MD fellow has to come to J’s aid. More feeling of “odd person out,” and “who do I feel I’m fooling?” Ah impostor syndrome thy name is marachne.

Going into Wednesday this week, I was feeling…mixed. On the one hand, I was thinking that maybe I could start “driving” a consult sooner than originally planned. I had, at G.’s urging, started to chime in when we were talking to patients. I’d asked a few good questions. On the other hand, I didn’t sleep hardly at all Tuesday night, so I was feeling pretty thick headed, and quite panicked when G suggests that I do the next new consult. Early in the day we went to visit a patient who had been given Very Bad News that came out of nowhere: it's an old story: the patient had symptoms for a while, thoght it was something else (old back injury, indigestion), comes in and finds out hes got widely metastasized cancer -- they don't even know what the primary is. Besides the shock, he was also pretty hostile because he’d had bad experiences with the VA in the past. The first thing we did was get his pain under control. Then it was time to wean him of the PCA and back onto oral meds so that he could go home, but he was skeptical that it would be as efficacious. G. was ready to roll with his desire and give him a Fentanyl patch if he didn’t want to go the oral route, but when we came up to visit on Tuesday he said that no, he trusted her (maybe not the rest of the docs or the system, but she had proved herself as accessible and an ally), and was willing to give it a try. On Wednesday we went back to check in with him before going home. I did what was perhaps the most speaking up to date: gave my “pain is easier to keep on top of rather than playing catch-up” speech, suggested he might want to take some breakthrough pain mediation before starting home (about a three hour drive away). As we were leaving the room, he says to me “excuse me, what was your name?” I tell him and he says “I just wanted to say thank you to you too.” That comment so made my day (I'm useful! I'm helpful! I have half a clue!)

At the end of the day, I go over to talk with G. about my progress. She says, “you’re doing great, you’re a lot further along than I thought you’d be at this point, you chime in appropriately and have good insight. And you’re a good fit with the rest of the team, which is one of the most important things." Finishes up by reaffirming that next week's plan is for me to take the lead on the consults.*

Nothing like outside affirmation to make one feel like a competent human being.

*We wound up not getting any new patients that day.

Days of Awe-- and Remembering

Yesterday was Yom Kippur, the most solemn of the Jewish high holy days. I spent the day at the synagogue, fasting, singing, in prayer and meditation. One of the central features of the services during Yom Kippur (there are 7 starting the night before: Kol Nidre, Shacharit, Musaf, Avodah, Minchah, Yizkor and Neilah) is the kaddish, a very special and central prayer. There are several kinds of kaddish, but the one that is full of emotion and meaning for many is the mourner's kaddish (which interestingly, says nothing about death). The prayer is part of every service, whether Shabbat, weekday, or holiday. In many synagogues the traditions that only mourners--those who have a loved one who died within the year, or on the anniversary of their death--stand during the mourner's kaddish. (In many Reform synagogues everyone stands for the kaddish, the idea being that we as a community take responsibility for saying kaddish for the Jews who died in pogroms, the holocaust and other genocides who have no family to say kaddish for them).

The first time the mourner's kaddish was recited, I stood for the prayer. As this was a Reconstructionist congregation, not everyone stood. Afterwards, I mentioned to a friend that I was saying kaddish for the people who I had helped in their passage from life to death in the past year at work. My friend asked "oh, were any of them Jewish?" I replied "no, not as far as I knew."

Contemplating my impulse, I realized I returned to the idea that had had been planted from my days in Reform synagogues--that it is our responsibility to say kaddish for those who have no one to say it for them. While most of my patients are not Jewish, at this most contemplative time it felt right to remember and honor the memories of feel people who have passed through my hands and my heart, especially those who had no families: who came in off the streets, or out of the woods, who lost their families to illness, or death, or because of their history, past behavior, or mental status, who lost contact or become estranged from those who once, or still cared for them...who, for whatever reason, were alone. While not part of my Jewish community, they are part of another community of caring and I did not want their memory to pass unmarked.

Are You a Nurse?

Back in December, my mother was having knee replacement surgery. Six months prior she had had her other knee replaced, and there had been complications: delirium, probably from dangerously low sodium. Her surgeon was going to discharge her despite the obvious mentation changes and had to be practically bullied into running blood tests to check her electrolytes.

So after the second knee surgery, when the hospitalist (with residents in tow) came to check on her, I started to advocate strongly for what I felt was a necessary level of care. About five sentences in, he turns to me and says "are you a nurse?" At first I felt a little defensive (I was afraid he was perceiving me as a meddling relative), however when I said "yes," his response was to say "OK, then I'll explain things in more technical terms, and you can explain to your mother."

Last night, a family member called in asking about their relative. I didn't know the patient very well, they had been admitted while I was off, but I was looking through the notes trying to garner more information, and as we were talking the caller started to ask more technical questions, as well as explain things about the patient that was not clear (or downright wrong) in the chart. Almost unbidden from my mouth came the words "are you a nurse?"

Pause.

"Well yeah."

"OK, then I'll go into detail about what this report states."

Nothing like having the shoe on the other foot to gain better understanding of how we humans behave.

Deactivating ICDs

Here's an ethical question for you:

When is it appropriate to deactivate an ICD (implanted cardioverter-defibrilator)? To give some background: an ICD is a device that is surgically placed in the chest of a person who are at risk of sudden cardiac death due to ventricular fibrillation. Unlike a pacemaker, which uses electrical impulses to control the heart rate, the ICD "shocks" the heart when detecting an abnormal rhythm--just like the paddles used externally. From what I hear and read, the shock is a pretty nasty thing, and can cause pain, anxiety and a loss of consciousness. The issue here, is that when someone is close to death, their heart rhythm can go wacky, resulting in repeated shocks being delivered by the ICD. Turning off an ICD is not a simple matter: it is a process that requires specific skills and equipment. Theoretically, one can deactivate (temporarily) an ICD with the use of a magnet, but it is a stopgap measure--it needs to be taped to the patient's chest to keep it deactivated, and, I've read that sometimes the magnets don't work.

We currently have a patient, end-stage cancer, who also has an ICD. It has been discussed with him at least twice, and he has declined to have his ICD turned off. The problem, is that the other day, he got up unassisted (he's pretty weak) and was shocked by his ICD, causing him to blackout. Since then he has been anxious and afraid to sleep: afraid that he'll be shocked in his sleep. On Friday night, I managed to reduce his anxiety by providing him with an anti-anxiolytic and pain medicine. When I was back on Sunday afternoon, and heard in report that he was again, not sleeping and anxious, I decided to go down and talk over his options. Options seemed pretty limited: continuing to provide support and comfort via medication, conversation and presence, and, as far as I could see, also included offering to tape that big ol' donut shaped magnet onto him. The issues with the latter are multiple:

1. He is confused, and I'm not sure about his decision-making ability
2. He is fairly withdrawn, and when I attempt to talk with him he pretty much shuts me out
3. What are the ethics here? How confused is without capacity to make appropriate decisions? What are the ethics of doing a stop-gap measure that may, or may not work?

Luckily, I did not have to face this question head-on: the patient did sleep most of my shift, and I knew that the next day was Monday, when more services (including the most awesome social worker and the patient's provider) were available to discuss and revisit the matter. I did leave a note, as requested by the physician indicating his distress and concern. I know the folks I work with--they will continue to talk with the patient about the issue.

But what if he had been more awake and I less busy with another patient who was needing one-on-one care monitoring for delirium? What about the next time we have a patient in this situation? What if he/she clearly does not have decisional capacity, and, like is so often the case, has family members who disagree on the appropriate course?

This problem is not going to go away. Rather, it is most likely to come up more often as time wears on.

---

I did a quick lit search and found that:

1. Deactivating ICDs is in general considered ethical if it is the patient's desire, or the desire of the patient's surrogate.
2. The most discussed aspect of deactivating ICDs in the articles I read was the lack of discussion about this issue with patients before it becomes critical with a decision needed now (as in the patient is unconscious, dying and receiving repeated shocks). Sounds like so many of the end-of-life discussions that should, and don't happen (or happen too late).
3. Christian Sinclair over at Pallimed has contributed to articles in health care journals about this subject at least twice. And in a bit of synchronicity, Pallimed has a new post up about heart failure and implantable devices.
   

Results

This morning, at 9:00 it would have been three weeks.

Three weeks and two days since we got the email with our questions.

Two days which involved approximately 40 of the 48 hours alloted being spent in front of the computer.

48 hours which passed with no time to re-read what I wrote, never mind edit it.

48 hours and 15 minutes after I received the questions, I sent 36 pages back. Because of computer wonkiness (whatever possessed me to download a new copy of Acrobat Reader in the middle of such a time?), I was 15 minutes beyond the deadline (it was OK, they accepted it).

I've never written 36 pages in two days before.

I have also not read what I wrote in the ensuing three weeks.

This morning, I started to obsessively check my email for results.

At 2:00 this afternoon, I got my answer.

I passed!!!!!!!!!

Oh, there's still plenty of trials and tribulations ahead of me: proposal defense, orals, IRB submission, dissertation defense, applying for post-docs...

But I will never have to pass comprehensive exams again.

I will not have to worry about feeling like I disappointed my adviser and my department chair.

Makes me feel downright smart...maybe a bit of that particular "impostor syndrome" has been decreased.

Go me.