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.

Logical, Consistant withTrade-offs Explicated: Let the Comps Begin

Well, if anyone is still looking at this blog occasionally -- think good thoughts for me over the next 48 hours. I just received my two (one qualitative, one quantitative) comprehensive exam questions. I have 48 hours and 32 to 40 pages (16-20 pages per question, double spaced, no smaller than Arial 11 font, one inch margins) to prove I know enough about research and research design to do my own work. I just received the questions. I think they're doable...

If I start going crazy, I might just come back over here for a breather.

School's Out!

Good intentions and all that, I still don't seem to have gotten the hang of this regular blogging thing. But schools out, and I'm done with coursework! Well, almost--I have planned to take one more teaching course in the fall.

But my core coursework is done...all I have ahead of me, before I can officially start on the dissertation phase is...(cue Jaws music)...Comprehensive exams. What is that you're asking? Just an opportunity to show that I've absorbed and synthesized everything I’ve been taught in the past two years. We’ll be getting two questions on Monday, July 23, and will have 48 hours (and a page limit) within which to respond.

In the mean time, my cohort as been attempting to review all of our core coursework, but we have not done as well as we had hoped in terms of formal review. We do have a 4 day ocean-retreat planned for a couple of weeks from now, but I’m still nervous. (And frankly, tired of all the people saying “you’ll do fine,” I think that creates as much anxiety as it attempts to dissipate!)

The up side of all this is that, for a little while at least, my schedule is somewhat opened up for the first time in ages. Yes, I have that studying hanging over me, but no formal writing or reading to do, and I’m only working three days a week….which is two days more than I have been working.

So hopefully, I’ll have more things happening worth posting about (I have a recent experience which I need to get on paper soon), and more time and energy to actually post, not just think about posting.

I’d say “watch this space,” but I don’t want to set myself up.

---

And in different news, I’ve been accepted into the Palliative Care Fellowship at the VA. I’m not sure exactly when it will start, probably in September or October. It’s for nine months, and I’m really, really looking forward to this experience.

Confusion

He has heart failure, diabetes, and dementia.

She has multiple morbidities of her own. She has a history of abandonment (not picking him up after a respite stay – staff finally drive him home).

He has no short term memory (but he “can remember back to when he was in diapers”) and makes multiple calls home. Sometimes he’s accusatory, sometimes he just sounds desperate. Sometimes all he wants to do is say “I love you.”

She can’t take it anymore. Now, he gets one or two calls a day.

He is on hospice, but he’s not really that close to dying (damn those uncertain trajectories!)

Sometimes he thinks she’s dead. Sometimes he thinks (rightly so?) that she’s abandoned him. “After 67 years, I’ll never see her again.”

He was on a high dose of pych meds for his "behavior" at home. He's been being weaned down.

Sometimes he gets angry, sometimes he just sobs.

But give him some attention: a back rub, some comforting words a milkshake made specially for him, and often you can distract him from his pains, physical and mental.

At least for a while.

Procrastination, Conciseness and Celebration

Well I started this blog with great intentions and somehow it got lost in the usual slog of procrastination and coursework.

At this point, I have several partly written pieces that I just haven’t gotten back to. Part of my problem, I realize is that I have a hard time writing short, pithy pieces—succinct has never been my middle name (is that why I have such a hard time spelling it? Thank the goddess for spell-check).

But learning to write tighter and shorter is not only an admirable, but a necessary goal. An F31 (NIH predoctoral training grant) is limited to 10 pages. I think an R03 gives you 20. Many journals have page and/or word limits. And my Hartford application was limited to a 2-page letter and a 3-5 five page “professional development plan.”

---

Which brings me to the third word in my title.

The John A. Hartford foundation through the Hartford Geriatric Nursing Initiative supports the Building Academic Geriatric Nursing Capacity (BAGNC) program, which has, among other things, the BAGNC Predoctoral Scholarship (are you still with me?). If you go to the site, you’ll see that this scholarship is very generous. And very competitive – check out who is on the advisory committee here and the selection committee here. I mean, the directors of NINR, NIA, AACN and GSA? (among others). You don’t get much bigger in terms of Names in Nursing.

So, last year, I applied. And didn’t get funded. This year I applied. And got selected! I am so stoked, amazed, honored, thrilled….you get the idea. The timing is also perfect. Next quarter is my last quarter of coursework. The funding, which will start after this school year, is for two years. That means I have two years to work on my dissertation without financial worries. It also means I have Very Good Incentive to finish in two years.

So, hopefully (if anyone is still with me after my long silence) you’ll be willing to raise a glass with me in celebration.

What’s with the title?

One of the reasons it took me so long to start a blog (beyond my usual ability to procrastinate like no one’s business) is that I was having a hard time coming up with a name. I didn’t want it to be too cutesy, but I also didn’t want it to be too boring, and I wanted it to say something about who I am and what is important to me. I wanted something that made the nursing and hospice connection.

So, an explanation: Dame Cicely Saunders is commonly considered the “mother of modern hospice.” She has a long and fascinating history, more of which you can read about in many places including here. One of the seminal stories about Saunders his how she was inspired to start a hospice after meeting a survivor of the Warsaw Ghetto David Tasma, who she cared for as he was dying of cancer, in loneliness and anguish. He bequeathed her 500 pounds and said he’d “be a window in your home.” Her conversations with him, and her determination to relieve his pain – not just physical but emotional and psychic was the impetus to her working to create the modern hospice movement.

So I liked the story, and it make a title that was both apt and a bit cryptic. But more than that, I think it reflects one of the most amazing parts of what it means to be with people when they are dying—it is such an intimate time, such an honor to be allowed into someone’s life. And ultimately, the gifts you get from being a witness to this last chapter of their life is beyond measure.

Hello World!

Well, probably at this point there is no “world” out there for me, as I have no readers. I am not yet sure who, if anyone in my personal/professional/academic life I will let know about this little project— My plan is to remain anonymous and use a pseudonym (although if any of my friends do find me, they’ll know who I am, as I’ve been using the name for quite a while now).

So, where to start: perhaps with why I decided to have a blog. I’ve been toying with the idea on and off for several years now, but always found myself too overwhelmed with other things—and other ways of procrastinating. I think the tipping point (besides finally coming up with a name I liked) was the realization that there are times that my responses on other people’s blogs are so long that I might as well be writing my own! Of course, since then I have posted at least one more long response and still haven’t gotten this one started. I think I’ll just crib my post and make that my second post here (stay tuned!)

So why have I been thinking about blogging? I think for the same reason that many do—I think there are things that happen in my life and in the world around me that I want to comment on and share. I have become an avid reader of nursing blogs, and as well as blogs feminist, political, academic and few miscellaneous (Blog roll to be completed as soon as I can). I realize that I have stories that others may find interesting or entertaining, and, as final justification, I realize that this can be a form of self-reflection, which, as both a health-care provider and a student are Good Things to Do. I will also confess that Kim over at Emergiblog has been an influence—she is such a cheerleader for people to pick up the habit, and she finally got me to take the bait. We may have different politics and, at times perspectives but I admire her energy enthusiasm, passion, and writing.

Oh, one other reason to do this: one of the fine arts of grad school is devising wonderful ways to procrastinate doing all the things you Really Should Be Doing. This seemed like a quite elegant time sink.

OK, so that’s a bit about Why, now, perhaps a bit about Who.

For starters, I am an RN. More specifically I am a hospice nurse. I am also a middle-aged woman, who has only been a nurse for the past 3 years. Clearly, this is not my first career. I have, in the past and among other things, been a Sign Language Interpreter (specializing in health care interpreting), a conference planner (for a company that made OR scheduling software, and an office manger for, among other places, a complimentary health clinic. It seems I circled this field of health for a long time. Sometimes I wish I’d figured out what I really love sooner, but ah well that’s life.

As I say in my profile, I work for a Large Federal Health System in the U.S. Where I live there is the acute hospital, the clinics, and the long-term care (LTC) facility. The LTC is where I work. It has three units: a skilled care unit, a rehab unit, and a hospice/palliative care unit. My heart is in the hospice/palliative care unit, but, because I work such sporadic hours because of school, I am often over in the skilled care side. I love our patients—mostly men, many with a wide plethora of chronic illnesses as well as mental health and substance issues. Comes with the territory. War, and it’s aftermath is truly hell. I will likely tell stories about work (including why I became a hospice nurse) as time moves on, but I can’t include everything in this first post, now can I?

I am also a doctoral student with a focus on family caregivers of persons at end of life (EOL). At this time, it looks like my dissertation will be a follow-up study of one that I have been a research assistant on, looking at hospice care in Assisted Living Facilities. (ALFs). I will finish my course work in June, and then take my comprehensive exam, and, providing I successfully pass it, start working on my dissertation.

These two topics (work and school) occupy most of my time and energy, and will probably be the source of much of my posts, however I must add that I also have a lovely partner, S. also known as The Basement Troll, as she spends most of her time in her office in the basement. We have another person living with us, an old, dear friend, Ms. Evil Boots, also known in the blogosphere as Magpie. Then there are the 5 cats – only two are mine, but they all run the house pretty much.

So, that’s more than enough of an intro. I am not known for being succinct, so it’s not surprising I’ve gone on for so long. Hopefully not too boring. Stay tuned for more engaging material down the road.