Perspective

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*

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

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

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

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

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).

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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?

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.