A Window for Your Home

Perspective

2009-03-25T21:01:00.000-07:00

I did the first interview for my study today. Not a lot to talk about yet--I have to listen to the recoding again, do my summary notes, and then start transcribing.

But one thing my participant said today struck me. Talking about her 100+ year old mother with breast cancer, she told me that they never thought about trying to treat it "at 104, what would be the point? What would be her quality of life?"

How affirming to see not everyone thinks any threat to life needs to be fought tooth and nail, no matter what the context.

From Silence to Voice*

2009-03-21T23:37:00.000-07:00

I am a member of the Institutional Review Board (IRB) at my university. IRBs, also known as independent ethics committees (IECs) or ethical review boards (ERBs) are committees that have been formally designated to approve, monitor, and review biomedical and behavioral research involving humans in order to protect the rights and welfare of the research subjects. While I sometimes gnash my teeth at the IRB when I'm working on my own research, I enjoy being a part of the board and interacting with my colleagues.

The reality is that there is not a lot of nursing presence on the university's IRB. It is mostly physicians, a few others who are involved with the research process, and the requisite community member. Over the two years that I have been on the board, I have contributed...adequately. I do my reviews, I occasionally ask questions or contribute my thoughts to the discussion. But at the last meeting I attended, I felt that I was present as the Voice of Nursing.

Usually, an IRB meeting has the same components -- reviewing and voting on the status of newly submitted studies, continuing reviews for on-going studies, and modification reviews for studies requesting changes. Occasionally, however we have to deal with Protocol Deviations. Protocol Deviations can range, but generally only those that cause harm or have the potential to cause harm are brought to the board. Last week's meeting included a review of a study with two major protocol deviations. The study is situated in the ICU, and utilizes very aggressive diuresising (i.e. giving medications--in this case IV furosemide--that causes one to eliminate fluid). One of the dangers with diuresis is that the process also causes a loss of potassium and can increase the blood sodium levels. Both of these processes are dangerous: potassium makes muscles contract, and either too much or too little can make muscles flaccid. Seeing how the heart is a muscle, this can be very problematic, and lead to icky things like heart arrhythmias. Sodium is involved in the transmission of electrical impulses, and since that's a very important part of brain function, this too can be very dangerous. Low sodium can cause delirium, high sodium, seizures.

This study had very strict protocols for stopping diuresis and beginning electrolyte and/or fluid replacement if the values go out of range. In this case, potassium got low, sodium high, the protocol was stopped....and then the furosemide was, for some inexplicable reason, restarted. By the time the situation was remedied, the subject's potassium was 1.8 (normal is 3.5-4.5) and sodium was 159 (normal is 135-145). When we questioned the study's principal investigator (PI), he said that a resident must have ordered the furosemide restarted, and while he did not speak with the resident, he and his team went back and worked with the ICU nurses, reeducating them regarding the protocol and electrolyte values.

Part of what I was trying to tease out was where was the root of the problem: was it a hospital systems/QA problem or was it an issue with the study? What I wound up addressing in the meeting was what is common knowledge/common practice for nurses.

First of all, electrolyte balance is nursing 101. Keeping track of critical labs like potassium and sodium is as natural to a nurse as breathing. I cannot imagine an ICU nurse not understanding what was going on, and responding accordingly.

But what really got to me, was the implication in the PI's comments that nurses blindly follow orders, whether they make sense or not. ICU nurses in particular work very collaboratively with providers, and are not known for shrinking away from making independent care decisions. Furthermore, any nurse worth her salt will not carry out provider orders that they feel are unsafe--a common response to a physician insisting on something a nurse feels is unsafe is for the nurse to say "fine, if you want them to have X, then you give it to them."

After the PI left, and the board was discussing the case, I felt it was important to raise these points. Not because they had direct bearing on the case in front of us, but because, as the lone nurse in the room, I felt it important that I remind those assembled of the scope of nursing practice, and of our skills and abilities. Even though it painted that specific nurse in a poor light, it felt more important to stand up for nursing as a profession, not as mindless "handmaidens to doctors." I'm not saying that that is how most providers perceive us, but as much as the public doesn't understand what we do, I sometimes get the sense that our colleagues and co-workers don't always get it either.

*Hat Tip to Bernice Buresh and Suzanne Gordon, authors of From Silence to Voice: What Nurses Know and Must Communicate to the Public

Credibility

2009-03-20T23:59:00.000-07:00

Kim over at Emergiblog had a post recently discussing the relatively new phenomenon in nursing education of the "BS to PhD track." This course of study includes no masters, not even a courtesy masters: one goes straight from earning a BS in nursing to working on a PhD. Kim, a very popular blogger and long-time ED nurse who has gone back to school, took Diana J. Mason, PhD, RN, FAAN, the Editor-in Chief of the American Journal of Nursing to task for her position against this educational approach.

Interestingly, Dr. Mason replied in Kim's comments (I told you Kim was popular!) What she had to say ameliorated most of Kim's concerns, but it managed to make my blood boil.

Nursing is an odd profession/discipline in many ways. It developed from an apprenticeship model, not an academic model. Nursing education has evolved from hospital-based, physician-run programs that "grew their own" (and used the nursing students as menial laborers along the way), to being independent programs and schools within colleges and universities. Graduate programs are very new: the first masters in nursing wasn't available until 1956. The first doctoral level degrees specifically in nursing became available in, I believe, the 1970's.

From these two strands has developed a unique approach to graduate education. In most academic programs, individuals generally go directly from their undergraduate to their graduate education, often times straight through to their PhD. In nursing, the norm has been to get some kind of degree, whether it be diploma, AD, or BS, work for a number of years, then go back for a master's degree, and then, 10 or 20 years later, go back and get a PhD. Some of the accepted wisdom is that there is no way you can understand, never mind teach, nursing without a credible number of years "at the bedside."

Things started to shift in the past 10 years, with schools of nursing trying all kinds of new approaches, most notably "Direct Entry" for advanced clinical programs (aka Nurse Practitioner programs) for people who already had baccalaureate degrees and BS to PhD programs, moving individuals with a BS in Nursing directly into a PhD program.

There has been a great hue and cry against both these practices, because how can someone know anything about nursing, nursing practice, nursing culture, etc. without spending at least a decade doing it? And of course, by "doing it," the implication is that one is in a hospital and providing direct care, despite the fact that, according to the Bureau of Labor Statistics, only 59% of all nursing jobs are in the hospital (including managers, educators, and other non-bedside positions).

The bottom line for both Kim and Diana is that there is no way someone can graduate from a nursing undergraduate program, go directly for a PhD, and be either a competent instructor or a relevant researcher.

I beg to disagree. Furthermore, I'd say that there an awful lot of assertions being made based on assumptions without any empirical evidence.*

I am completing a BS to PhD program. Like a number of the BS to PhD students in my program, I come to nursing as an adult with a wealth of experience that can inform my practice. Just because I am learning a new skill set and knowledge base doesn't mean all my prior experience, education, and abilities are thrown out the window. There's a lot more to nursing than being able to place an IV or read and interpret a rhythm strip. There's interpersonal skills, time management skills, the ability to take in a great amount of information, sort, prioritize, act, respond...these skills are not the purview of nurses alone.

As to my lack of nursing experience, neither myself, nor any of my colleagues in my program have completed it without concurrently working as nurses, at least part-time. Frankly, I'm a little insulted by the implication that anyone smart enough to succeed in a PhD program wouldn't figure that they need to acquire clinical experience along the way. By the time I am finished with my PhD I will have been working as a nurse for 6 years.

As regarding clinically relevant research, I believe that the relevance of ones research is a lot more dependent on ones academic culture than one's work history. My program has always emphasized research which is clinically relevant in general and relevant to nursing in particular. I can't imagine being able to get funding, particularly in these tight money times, without meeting a need and filling a knowledge gap. Furthermore, I have already received feedback from professionals within the fields of end-of-life research, and nursing as well as patients and families that my research focus on family caregivers at end-of-life is filling a gap and a need. This feedback has included some very generous and prestigious funding

As for being a good educator, I am lucky that my program has excellent education offerings, developed under the leadership of highly respected experts on nursing education. I have already started to do some mentored teaching, and I've gotten good feedback from students and faculty about what I bring to teaching and the positive impact I have had in both the classroom and in curriculum development. I will go into my first faculty position a lot better prepared to develop curriculum and provide meaningful educational experiences than a lot of newly-minted PhDs with years of bedside experience. There is an expression "those who can't teach." The reality is that just because you are an expert in a field, doesn't mean you can teach the field's knowledge effectively.

I know I'm going to make a damn fine teacher and researcher. I know that my students will not be short changed by my not having worked a med-surg floor for 30 years. I know that the knowledge and understanding that I uncover in my research will be useful and relevant to practice, and will move the science forward.

*Some may say what follows is not empirical evidence but anecdotal. Well, as a constructivist, qualitative researcher, I would say it describes a particular reality from which guarded generalizations may be made.

Ethics

2009-03-16T22:33:00.001-07:00

Things are starting to move along in dissertation land. After some small hiccups, I received IRB approval.

The only issue related to my recruitment process: my plan was to work with hospice agency staff: asking them to share my recruiting brochures with potential participants and ask if it is OK for me to contact them. The IRB decided that, while no health care information was being released, the family member would need to sign a form stating that they have given permission for their contact information to be released to me.

Last Thursday, I had my first meeting with hospice staff. It was the RN staff meeting, and three nurses signed up to work with me. Two stated that they had people in mind. Exciting!

This afternoon, I receive a call from D., one of the nurses. She tells me that she has talked with a family member who is willing to talk to me. I ask D. if she got the release signed.

D: No, I didn't see her in person, we just talked on the phone.

Me: Oh, when will you see her next?

D: I won't be out to see the patient again until next Thursday and she may or may not be there.

Thoughts race through my mind: what would it hurt to take the information? Who would know? It won't affect the validity of the data...

And of course, I say the only thing that I can say. I ask if D. will call the family member back and give her my contact info. D states she can't do it now as it is the end of the day. I assure her that I do not want to make more work for her, and any chance she gets in the next few days would be great.

We do so much based on trust: trust that what we say is the truth, that what we say we will do is what we do, and what we say we will not do, we don't do. Our patients trust us to be honest, but compassionate, to not abandon or exploit.

As researchers, most of the time, things are not so life and death, but the value of our work rests in the integrity of our words and actions.

Expectations and Filters

2009-02-28T23:37:00.000-08:00

A large component of the curriculum at my institution is the use of case studies. Some of these are "mega cases" involving an entire family (sometimes with more than one person with health issues). These families show up multiple times over the course of the undergraduate BSN program, as well as in the simulation lab, often as standardized patients. In a mega case analysis, the students analyze the situation, come up with and elaborate on pertinent issues and potential solutions, and prioritize them. They produce a paper which is handed in after a class discussion so that the students can expand their understanding through their classmates' thinking.

The case study for this class involved a 10 y.o. African American child with a history of asthma who has a near drowning event, was under the water for 10 minutes, has been vented (weaning unsuccessful) and comatose (with seizures when moved) for over six months. The family is now facing bringing him home, while not understanding the poor prognosis.

The case is meaty: there are the physiological issues and care needs of the child, the psychosocial issues of the family including mom who is already feeling exhausted and overwhelmed she and her husband have been visiting their son at opposite times of the day daily since the accident)and worry quitting her job to stay home with the child and to cut back on the cost of child care for her other two children, emotional distress of the other two younger children (one of whom witnessed the drowning), financial issues, advance care planning issues, strain between parents and extended family (boating accident was on a trip with uncle), etc.

I graded these papers, and most of them were quite good and thoughtful. During the class discussion, one of the students made the comment "shouldn't someone be realistic with these parents? Can they even manage this child at home? They have a small house, they can't expect the children to share a room with J on a vent! Where are they going to put him?"

The response struck me as blatantly classist, and possibly racist too. Thankfully, another student called the first one on her comments, suggesting that perhaps she was being judgmental. Some good discussion followed, but a short while later the same student made the comment "Would it be appropriate to point out alternatives to bringing J. home, I mean, there are places for children like this, and clearly mom is already beyond her ability to cope." I asked if she meant institutionalization and she went on to describe her cousin who provides foster care for medically fragile children. I was somewhat taken aback by this response, and tried to talk briefly about not projecting our expectations on other people, but working with them where they are, but frankly, I am new at this whole "facilitating classroom discussion" thing and did not feel like I did an adequate job.

I wanted to have a follow-up discussion the next week, but it didn't happen. If I had either been thinking on my feet, or had my "do over" moment, this is what I would've said:

We all bring our personal experience, and filters to any clinical situation. It is important to be aware of the impact that all we bring with us has on how we approach care for our patients and families. We know what we have experienced and observed, and in that context, what works, and what doesn't. We also have all been inculcated with certain beliefs based on our cultural "norms" (i.e. institutionalized classism, racism, sexism, homophobia) that lead us to make assumptions about the people we care for which may not be based in their reality but in the cultural context within which we have been raised.

What we have to keep in mind, is that our patients/families experiences can be very different from our own or what society says is right and normal, and we need to assess their needs and how to meet those needs from what they find important, and what they believe they are capable of - not what we think they can do. That doesn't mean we just abandon them to their decisions, but we support their decisions and vision as much as we can rather than trying to supplant it with our own.

I want share an example of professional expectations and family reality:

There was a woman, lets call her Rhonda, who had been the main caregiver for her parents for many years. Five years prior, Rhonda had insisted they move from the other end of the state to near her after one too many all night drives down to their home after a fall. Rhonda found them an apartment, visited regularly, helped them with their shopping and banking and such. As they declined Rhonda took over their medication management, stopped by twice a day, and when they became too frail for independent living, helped them move into an assisted living facility, where she continued to visit at least once a day and speak to the on the phone several times a day. While it was her father who had more prior health problems, it was actually her mother who was first enrolled in hospice, followed within a few months with her father also being enrolled in hospice. When their needs became too much for the assisted living, they were moved into an adult foster care home.

After a while, Rhonda decided she wasn't satisfied with the care her parents were receiving or some of the care decisions that were being made regarding them. She decided to bring her parents home to care for them herself for their "last days" ... which actually lasted almost a month.

A first the hospice team were aghast at the idea -- a single woman living in a tiny townhouse (her small living room would barely be able to hold the two hospital bed and attendant equipment): how could she possibly manage two bedbound, dying people safely and sanely? Reluctantly, they went along with Rhonda's decision. In the end, they were humbled and impressed by what she was able to do for her parents.

Rhonda didn't do it perfectly: the night before her mother died, her father insisted on getting up, fell and broke probably a rib and his collar bone. Rhonda got scared and overwhelmed at times. (But hospice was there when she needed them to help manage crises).

Her dad was holding her mom's hand when her mom died. And both Rhonda and her daughter were present for both their deaths.

What Rhonda said about this experience:

She was grateful that the last thing her mom heard was that she was loved, and it was ok to go. Same for when her dad died.

When her father died, Rhonda was holding his head and her daughter were holding his hand.

“I Know couldn’t have done this any other way than this – they died comfortably, in a home setting and together – none of this would’ve been possible in any of the long-term care settings they’d been in before."

"I feel privileged that I was in a situation where could do it."

The phrases I hear over and over from families is that caregiving is the hardest thing that they have ever done, and the best thing they have ever done: they feel grateful they were able to do this for someone they loved.

I often say we ask so much of our families regarding providing primary care. But how much do we also celebrate their strengths and abilities to do so much more than we can imagine possible?

How to Teach, What to Teach

2009-02-11T17:48:00.000-08:00

What I have been doing, besides more and futher iterations of my first three chapters, has been some teaching and presenting. I am the TA in one of the core courses in the undergrad nursing program. The course I am working with is called “Chronic Illness II and End of Life.” I’ve done a couple of presentations, have contributed comments as part of the team of teachers (there are 2 peds, 2 gero, and 2 psych faculty who share didactic and clinical duties), and will be grading a major paper.

It’s being great, and I’m learning a lot in a mentored environment. It also reinforces my belief that I will enjoy teaching (although you are welcome to check back with me in a year or so when I’m doing it on my own).

The other exciting teacher-related activity is that I have been asked to write part of the curriculum for a course: this course is a summer intensive for AP nurses that will give them a certificate in geriatrics. There are few GNP programs anymore, and this was seen as a way of providing gero content and training to individual who have (or are getting their FNP or ANP.

I’ve been asked to do a module on end-of-life care. The idea is to give some background, some reading material, and a couple of different activities to choose from, including, possibly a case study.
I am going through my major palliative care text books, and the ELNEC gero curriculum. One possible activity is to have them do an advance care planning session with a client (the whole “what is your understanding of your current health situation, what is your functional level, what are your goals, what are your values, what are your resources, etc.”)
My question, if there is anyone still out there reading this who has an end-of-life framework is: if you had to create a module on end-of-life care for advance practice nurses, that shouldn’t take more than a few hours to complete, would you include?

Light at the End of the Tunnel?

2009-02-11T17:35:00.000-08:00

Despite no action, I do think about this blog. As I said in my last post, I have no clinical practice now, so there's not a lot of direct end-of-life news in my life at this moment.

I did pass my proposal defense and am an official "PhD Candidate" (my institution does not subscribe to using that silly/nifty Ph(c) designation).

Despite that major milestone back in October, I have been struggling with major rewrites that were required before I moved forward with the study...and are still a work in progress.

That said, I have been able to submit my study to the Institutional Review Board, or IRB (those folks who decide if you have built enough protection of human subjects into your study).

Now I am in waiting mode: waiting to hear from the analyst if they have any questions, waiting to hear if I will have to go through the full board review process or, as I expect get an "expedited review" meaning that it will be reviewed by one of the IRB co-chairs (a much quicker process). Then waiting to be told what needs to be fixed or clarified from that process.

Besides all the normal issues around waiting for someone else to do something, I have another issue. I plan to recruit my participants through area hospices. I am starting by working with one hospice, who has agreed to be involved. However, they have been acquired by another, larger medical institution, who may take over operations as early as June. When that happens, all bets are off. I may have to go though their internal IRB, which means another delay, and possibly a lot of money, as I don't think they would waive the fees as is the case at my home institution.

So I wait, and hope.

The Daughter from California

2008-09-24T20:28:00.000-07:00

I know, once again I have let this poor blog languish. Not a lot of excuses, although I now have no clinical practice as I am full-time dissertating, and I could probably supply lots of exciting stories about writing my first three chapters (not). If you're wondering, I do have a proposal defense date of of October 14, so if you want to throw positive "think on your feet" energy to me that day, go for it!

MIA, and now I have the temerity to come back with a political post. Well, as others have said, it's my blog and I can write about what I want to -- and hey, I can even tie it back to end-of-life issues!

I have to confess, ever since the DNC I have been a election campaign junkie. The last few days have been nuts in so many ways, but today's announcement by John McCain that he was suspending his campaign just put me over the top, and also led to a sudden "analogy flash."

It was pointed out that McCain's going back to Washington would achieve....nothing. The points of a bill to be presented to the full Congress and Senate are hammered out in committee -- in this case, the Senate Banking Committee, chaired by Christopher Dodd and the House Financial Services Committee chaired by Barney Frank.

If Bush hadn't invited McCain and Obama to to the 10 a.m. meeting tomorrow, he'd be standing around w/his finger up his nose for the most part.

So, to the analogy part, and what McCain's actions reminded me of:

In hospice and palliative care, we talk about "the daughter from New York" (or, if you're from the east coast, "the son from California") I've also heard it called the "White Knight Syndrome." This involves a family member, usually estranged, certainly not engaged with the critical health issues that may have been unfolding for months ore even years and that other people have been coping with as best they can. This individual comes swooping in at the 11th hour, second guessing everyone, claiming the high moral ground and basically mucking up all the hard work and collaborative effort that has happened up until then between the health care professionals and the involved, concerned, engaged family members.

It's never pretty, and the 11th hour "savior" never comes off looking good.

U. Utah Phillips -- Rest In...Struggle?

2008-05-26T11:27:00.001-07:00

OK, I know I haven't posted in a long, long, time, and many things have happened in the mean time. I've thought about it, really I have.
What has prompted me to post, however was hearing the sad news that Bruce "U. Utah" Phillips died Friday evening of heart failure.
You can read more about this amazing songwriter, tall tale teller, union organizer, and general friend of the working man here and here as well as some obits around and about. Sadly, the story doesn't seem to have been picked up many places yet.
This being a blog about end of life, I found this quote particularly interesting:

"he made a conscious choice not to seek out a heart transplant that might have prolonged his life; not simply because he couldn't afford it and had no health insurance, but in part because of quality of life issues."

I started to say "rest in peace" but that doesn't seem to be Utah's style. Work, struggle, love, laugh, sing, tell stories, but never, never fall into complacency. I hope he's having a great time where all old radicals and fokies go--hanging with Woody Guthrie, and Kate Wolf, and Dave Van Ronk, Joe Hill, Mother Jones, and all the others who won't stop singing and speaking for what they think is right.

Analogies

2008-02-14T17:39:00.000-08:00

Analogies can be great for creating an image that is within a person’s experience and/or worldview. One of the first analogies I was struck by was in a family conference in the ICU. The patient was a older gentleman with multiple chronic illnesses and history of hospitalizations. He walked into the ED, but now he was in the unit intubated, sedated, monitored: how did he get sicker in the hospital? And the classic hope-filled statement: “he’s a fighter, he’s pulled through before.” The intensivist used the analogy of a building that a bomb goes off inside of: from the outside it looks fine, but inside it’s been badly damaged. Listening, I saw at least some of the family member’s become less angry and defensive, more open to talk and hear what was being shared.

One of my favorite analogies is when people try and get a sense of “how long” someone has. If they are old enough I ask if they have any children. I then use the analogy of pregnancy and birth: that you know it’s coming, and you probably think you have an idea of how it’s going to be, but ultimately it is something that we do not have control over in terms of timing or how it unfolds. It seems to be helpful, maybe just to remind people that they can live with uncertainty, no matter how uncomfortable it is.

This week I came up with a new analogy and I’m rather pleased with it. E and I were explaining about switching him from IV analgesic to a transdermal Fentanyl patch. We talked about the advantages of having a steady state of opiate in his system rather than the up and down with prn dosing, but he was concerned because, if I understand him correctly, he wouldn’t know that it was working if he didn’t feel that immediate effect from IV push (not a rush exactly, but something that lets you know you’ve gotten medication). Finally I said “it’s like a soaker hose” and that seemed to make a connection.

Language is so powerful and so full of layers of meaning, but it can also delight.

Communication

2008-01-24T14:17:00.000-08:00

I actually have a nice, juicy, post on palliative sedation I've been working on, but I keep getting bogged down and distracted by things like, work, and writing my first chapter. In the mean time, I'm trying to get better at the short pithy posts.

Recent conversation during a "toxicity check" (assessment of patients ability to continue to receive chemotherapy):

NP: "If something should happen and you were unable to make your own decisions, who would you want to speak for you?"

Patient: "My wife."

NP: "And she knows what you would want? What kind of decisions you would make?"

Patient: "Oh yeah."

Patient's wife: "Oh no I don't!"*

Unfortunately, this is more the norm than the exception. I remember at the annual hospice conference last year there was a presentation of study that involved health care proxies, and the majority of the participants didn't even know they'd been named as the medical durable power of attorney until their loved one was incapacitated and they were being asked to make decisions! (apologies for not being able to cite the study or the presentation, all I can remember is that it was presented by R. Sean Morrison -- if anyone knows the study I'm talking about, please let me know!)

Think of this as a wake-up call: if you have strong thoughts about what kind of care you'd want in a life-threatening situation (and if you don't, you should start thinking about it), talk to the people people who would be making decisions for you if you can't speak for yourself. You owe it to yourself, and to them.

*I can't help but wonder if this sparked a conversation between them about this. I sure hope it did, but I'm not confident that's the case. As it wasn't my visit (I was observing E.) I didn't pursue it.

Change of Shift

2008-01-24T14:08:00.000-08:00

Yes indeed, it's time for another Change of Shift, the nursing blog carnival. Bad spider, not writing enough and therefore didn't send in a submission, but Beth at Pixel RN has put together yet another good read.

How I Got Here

2008-01-13T17:06:00.001-08:00

Over at Nursing Voices is a thread where people are describing things they like to do that other people find distasteful. I posted about enjoying providing postmortem care—removing all lines, washing the body, tiding the room…generally preparing the diseased to be seen by their family/loved ones.

There is a very specific reason I appreciate providing this particular service to patients and their families, and it ties very directly to why I became an RN.

I moved to my present location in 1995. Didn’t know anyone here but my cousin L, who I stayed with. Her partner J was involved with Our House, a place that was for people with “end-stage AIDS,” particularly those with no place to live or people to take care of them. People got to “end stage” pretty fast in those days: the first of the antiretrovirals, the protease inhibitors, were just starting to be used, the “cocktail” or more accurately Highly active antiretroviral therapy (HAART) was still at least a year off. The facility didn’t call itself a hospice because they didn’t want to deal with the Medicaid regulations, but in reality that was what it was. It was/is an amazing place – at that time the facility had 10 rooms and over 300 volunteers, nursing staff who worked for a lot less than they could make elsewhere, and the ability to get amazing donations (such as the custom made table for 20 that a local funiture maker made for them).

I moved not having a job lined up, just knowing I needed to get back to the west coast. I didn’t know anyone other than L & J, and decided to volunteer at Our House. Like most people who commit to a specific shift, I started out working in the kitchen. But shortly after I started to work, a new resident, S, came in who was deaf. I had been a sign language interpreter, and they asked me to spend time with S, and act as an informal interpreter when I was there (they hired working professionals for important things, but for the day-to-day communication, it was nice to have someone around who could facilitate communication). This got me out of the kitchen and a lot more involved with the residents, in particular S.

One of the philosophies of Our House was that no one should die alone. There was a list of volunteers who: 1) were willing to sit vigil; 2) wanted to be informed when someone was actively dying; 3) wanted to be informed when someone had died. I was on the list to sit with S when he became active. I stayed with him his last day and night. One of the odder things was that I sang to him – probably at least partly prompted by the fact that he would regularly talk about how when he died he would go to heaven and he would be able to walk again (he had progressive peripheral neuropathy/paresis) and he would be able to hear. I was with him when he died, helped to provide postmortem care, and was part of the procession to the van when the mortuary came to pick him up. As I continued to volunteer at Our House, I become a member of the “Personal Care Team,” basically someone who has CNA level training and could provide direct care to the residents. I continued to provide care, sit vigil, and provide what comfort and support as I could.

Fast forward to 1999. My father is diagnosed with acute myelogenous leukemia. He decides, despite the fact that he is 83 and has a very poor prognosis, to try an experimental chemotherapy. It does not go well, he is quickly hospitalized, becomes delirious, and begins to decline. No one thinks he is going to live very long. I am now managing a CAM clinic and can only go down to see him on weekends. When I am there, I stay in the hospital with him at night. Six weeks after diagnosis, he dies—his symptoms (especially pain) not well controlled, and having received what I see as indifferent care. I am there when he passes. I put on the call light, the nurse comes in, I tell her I think he has died. She checks a pulse and then disappears. Never says a word to me. A while later a doctor comes by and pronounces his death. Again, never says more than ten words to me. I call my mom and sibs to let them know what has happened. I try to get the nurse to take out the lines before my family shows up, and all she does is disconnect the IV. I bully her into giving me some washcloths and a clean gown so that I can make him as presentable as possible before the others arrive.

I am also furious. From my experiences at Our House, I know what a good death looks like. (The Institute of Medicine describes a good death as one “free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' families' wishes; and reasonably consistent with clinical, cultural, and ethical standards”), and I know my father didn’t have one. It takes me another two years, but I finally realize that what I want to do is be a nurse, and work with those at end of life: do what I can to help as many people as possible have as good a death as possible.

One final note to this story. When I was finishing up my nursing undergraduate work, my final rotation was in the ICU. One of the patients came in with a subarachnoid bleed. After a while, when it was clear that he would not regain consciousness, the decision was made to withdraw life support. I helped with the process and the titration of pain medication to make sure that he was comfortable, and after he passed I asked his nurse (not my preceptor) if I could help with the postmortem care. It felt like I was somehow paying forward for the treatment my father had received.

Change of Shift is Up!

2008-01-10T20:08:00.000-08:00

Change of Shift, the nursing blog carnival is up at Nursing Jobs.org. Lots of good pieces to read, including one of mine. And to those of you who came here via CoS, welcome!

Intersecting worlds: Bearing Witness

2008-01-05T15:41:00.000-08:00

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

2007-10-20T16:47:00.000-07:00

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

2007-10-04T16:58:00.000-07:00

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

2007-09-23T20:49:00.000-07:00

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?

2007-08-31T11:18:00.000-07:00

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

2007-08-26T17:14:00.000-07:00

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:

He is confused, and I'm not sure about his decision-making ability
He is fairly withdrawn, and when I attempt to talk with him he pretty much shuts me out
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:

Deactivating ICDs is in general considered ethical if it is the patient's desire, or the desire of the patient's surrogate.
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).
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

2007-08-15T22:56:00.000-07:00

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

2007-07-23T09:22:00.000-07:00

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!

2007-06-25T10:38:00.000-07:00

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

2007-03-27T12:03:00.000-07:00

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

2007-03-26T11:59:00.000-07:00

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?

2007-01-21T22:04:00.000-08:00

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!

2007-01-21T21:34:00.000-08:00

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.