Tag: Health

Narrative Nursing

Cover of "Narrative Matters: The Power of...
Cover via Amazon

The health policy journal Health Affairs has a feature entitled “Narrative Matters,” which are personal essays in the voice of patients, their families and caregivers with a health policy aspect. Health Affairs has been running these essays for 10 years and is a popular feature, crossing over to news features on NPR and in the New York Times. In 2006, the editors of Narrative Matters published a book collection of 46 of their best essays. The essays included in the book are all very powerful. They range from a former governor writing about the culture clashes between medicine and public policy, to a physician’s struggle to care for his father with dementia. What struck me as I read these essays, as well as the other more recent ones available online, was the fact that very few were by nurses. In the book version, there are two essays written by nurses. They are both by male nurses and deal with their moral distress, burnout, and decision to leave nursing. This is a common problem in nursing, and rates of burnout and exit from nursing are much higher for male than for female nurses. It’s good to have their perspectives on the issues voiced, but was disappointing that those were the only essays by nurses included. Of the 10 essays published in 2010, seven were by physicians, two were by patients, and one was by a nurse practitioner. The nurse practitioner wrote about her decision not to have mammograms and the negative reactions she gets when she voices her decision and rationale. We need more nurses writing these sorts of essays, and having them published in high profile journals such as Health Affairs. Publishing in nursing-specific journals is all well and good, but I don’t think many nurses ever read them, and the general public most certainly does not.

Next quarter I am teaching a graduate level course in health politics and policy and in lieu of a course paper I am having students write (and submit) policy-level nursing narratives for Narrative Matters. So stay tuned to Narrative Matters for (hopefully) some stronger nursing voices.

Truth-tellers and nursing leadership

Truth
Image via Wikipedia

“Tell all the truth but tell it slant–” (Emily Dickenson) I have been re-reading Dickenson’s poem as well as Foucalt’s “Fearless Speech” series of lectures while thinking about the state of truth-telling in nursing leadership. Truth-telling  to me connotes honesty, integrity and courage, which are all essential ingredients of good leadership. Truth-telling in the classical sense involves self-reflection and truth-telling to oneself. There is an art to good truth-telling. I believe that the current nursing leadership in our country has a lot to learn in all of these areas of truth-telling.

First though, just who are nurse leaders? My working definition of “nurse leader” is anyone who is a nurse of some sort who has the power and position, or the power of position to be able to effect change on systems–whether the system is a hospital unit, an entire hospital, some other health-related agency public or private, a public health program, a unit of or an entire school of nursing. Perhaps they are the nurses chosen (by other nurse leaders) to be part of the RWJ Nurse Executive Nurse Fellows Program, or chosen (by other nurse leader/fellows) to be a Fellow of the American Academy of Nursing (FAAN). Do you notice a pattern here at all? The inner circle, the “old girls’ network of nurse leaders chooses who to let into the inner circle. This, of course, is human nature, and nursing is no different in many ways from say, medicine. Except that it is significantly different from medicine in terms of power and prestige–not essential ingredients to truth-telling, but they help in being heard and not being killed in the process.

The Dean of my school of nursing, Marla Salmon, ScD, RN, FAAN recently said that the focus in nurse leadership should not be about increasing the status of nursing as a goal, but rather to have nursing be partners in leading improvements in health care: It’s not just about nursing getting in the door, but it’s what happens when they’re at the table. I like this, but I like thinking about this table not as a sandbox with people (and nurses especially) “playing nice” and not throwing sand in Jimmy’s face–but rather thinking of the table as the Ancient Greek marketplace where truth-telling, open debate and reflection were encouraged.

We do not practice or encourage truth-telling in our profession of nursing. As nurse educators we actively discourage our students from voicing different viewpoints from our own, or from the accepted Cannon of Sacred Nursing. I recently read a document on revising the BSN essentials (e.g.: the most important things we want BSN-prepared RNs to be ‘taught’) and it stated that we should not teach/practice critical thinking “because it is too critical.” And in the practice of nursing it is obvious that nurse leaders shoot the messenger when line staff RNs “speak the truth” about patient safety issues.How is any of this going to change if the existing nurse leaders don’t start modeling more truth-telling in all of it’s ancient connotations?

 

Where have all the nursing professors gone?

Portrait of Florence Nightingale.
Image via Wikipedia

“The Future of Nursing: Leading Change, Advancing Health,” is a weighty tome published/released by the Institute of Medicine and the Robert Wood Johnson Foundation on October 5, 2010, and is written about by Pauline Chen, MD in her NYT article “Nurses’ Role in the Future of Health Care” (Nov 18, 2010). Dr. Chen’s article has been one of the most e-mailed NYT articles since it appeared last week, and at last count it had a total of 91 reader’s comments. It got people’s attention. I find it interesting that in her article, Dr. Chen links to the IOM report ($51 and you can read it), but doesn’t mention that the exact same report is available for free on the RWJ website (also has its own Facebook page). There is a 600 plus page version and a 4 page “Brief Summary” version, both free.

In the 600 page version, Chapter 4 is devoted to nursing education, and among other things, they address “the aging cadre of nursing researchers and educators.” We are dropping like mosquitoes around one of those electrified zapping machines. And there’s no one to replace us. The IOM/RWJ report states there are 5,000-5,500 unfilled nurse educator positions around the US. In my own school of nursing, within three years something close to 70% of our faculty will be 65 or older (disclosure: I’m not even close to being one of those…). Of course, that doesn’t mean they will retire, but that’s another story. That statistic is public information already, as is the fact that many other faculty in major schools of nursing across the country are ‘getting out’ of nursing education–burnt out, put out, or lured out by better opportunities in health care industry of one sort or another. Many of those are people I consider to be the best, brightest, most creative nursing educators we had. The IOM/RWJ report has many excellent recommendations about improving nursing education, but I wonder how they will get done with what’s left of our nursing professor workforce.

Head Banging and Health Care

This past May I quit my clinic job where I had worked for 16 years. It was a community health clinic that I had loved for 14.5 of the 16 years. The last 1.5 years of it were a downward spiral of administrative dysfunction leading to moral distress and burnout for me. Towards the end I felt as if I had a bad case of autism and was banging my head against a wall, the wall being an unresponsive, uncaring safety net system. I had the luxury of being able to afford to quit. I don’t miss the clinic, and I am unsure if I will ever work as a clinician in our health care system again. This is after almost thirty years of continuous work as a family nurse practitioner in various safety net community clinics across the US. I love patient care and do miss that.

 

I was reminded of the head banging metaphor this morning as I continued to try and coordinate sane home health care for my father. His family physician ordered hospice last week. The hospice and home health are within the same agency in his hometown. Hospice called home health to discontinue home health and start hospice. But before hospice could even start, my father’s cardiologist cancelled hospice. The cardiologist had ordered home health after my father’s hospital stay, but now it has been discontinued without him even knowing it. Meanwhile, my father continues to fall at home and his hand wound from an earlier fall is not healing. The home nurses have never even looked at his hand because they don’t have a doctor’s order to look at his hand—only his heart. I am back in Seattle trying to catch up on my job and with my family. The home health and hospice agency staff people call me because my father doesn’t hear well enough to answer his phone when they call him. My head hurts….

 

Life of Its Own/ October 16, 2010

My Dad decided against cardiac surgery. He decided this in the hospital after frank discussions with his cardiologist, who has treated my Dad for 15 years. Dad trusts him. Within two days of taking Dad home from the hospital, the cardiac surgeon had called/talked with him once about surgery, and then he got two additional phone calls from the surgeon’s office confirming follow-up appointments with them. At first Dad interpreted these calls as proof that perhaps he should have surgery after all—that the surgeon’s thought he was a good candidate for heart valve replacement. He admitted to being confused as to what to think. I tried to not show my frustration at the health care system and told him he should go to the appointment if he needed more information. He thought about it through lunch and then told me “I don’t want to open that up again.” He got yet another automated telephone message the next day confirming his cardiac surgery appointment. By that time he had already told at least three of their office staff that he wished to cancel and didn’t want surgery. I explained that the medical system has a life of its own and just won’t take ‘no’ for an answer.

The Hospital/ Monday October 11th, 2010

Surviving the hospital: Yesterday I brought my Dad home from the hospital. He insisted on opening doors for me and for others as we found our way to the parking garage. He was disappointed he didn’t have surgery. In the 2.5 days he was an inpatient at the teaching hospital he was seen by a total of four doctors, two nurse practitioners and one physician’s assistant all at different times and mostly asking us what the other providers had said (not quizzing us–they really didn’t know). It was confusing for my Dad who kept getting his hopes up that they could do cardiac surgery and fix him up. I was his health care agent and tried to be his advocate. It was exhausting to help him wade through it all. I realized just how messy these “breakpoint conversations” are for everyone and how our health care system really is not set up to help facilitate them. For instance, in a hospital there really is very little in the way of real patient privacy. My Dad had a shared room with a cloth curtain between the beds, which were three feet apart. Without really wanting this information, I now know all of the roommate’s medical conditions and major family situations. He knows ours. I was uncomfortable having the difficult patient/family/provider conversations we were having knowing that Dad’s roomate and his wife were listening. I know it changed what I felt like I could say and ask. At the climax of the main conversation with Dad’s cardiologist (when he was telling Dad his heart was like the engine in an old car–unreliable except to run around town perhaps), the roomate’s colostomy bag exploded and his breathing/forced air machine started beeping loudly. Somehow the conversation continued even though no one could breathe or hear anything. I understand that exploding colostomy bags happen and things hit the fan and you can’t control situations, but this was on a ‘regular’ medical floor and not in intensive care. Surely clever engineers/designers can come up with solutions to the space and privacy issues in hospital rooms, even if they have to be shared rooms. My Dad was ambulatory and the doctor could have taken us to a private consult room somewhere for this sort of conversation and I am sure that would have made it easier for everyone. I was going to suggest it at the time but realized there were no such rooms. I pushed for home nursing care for my Dad and that starts tomorrow–it can segue into hospice/supportive care when the time comes. I had to ask for patient education materials before we were discharged and there really is no clear plan for follow-up with anyone. The home health nurse comes tomorrow and I am hoping that he or she can help pull things together better than they have been so far.

A Practical Man and Modern Medicine/ Sunday September 26th, 2010

My father hiking a year ago in the Cascades

Today on the phone, my 87-year-old father asked me to be his patient advocate. He is facing tough health care decisions over the condition of his heart, and is scheduled for surgery in a week. He is a practical man, bright, charming, and articulate, with no cognitive deficits that I can detect. He told me where his Living Will and Advanced Directives are, where he wants his body donated for medical research, and what to do when his CD matures (he’ll be in surgery) so that he can roll it over to a money market account. He says he needs access to the money for his after-hospital care, in case he survives surgery. I am thinking about the health policy issues within all of this: 1) heart failure accounts for the largest portion of Medicare expenditures, 2) none of his doctors have talked with him about what all is involved with this surgery, or what quality and quantity of life he can hope for afterward, and 3) home care provided by family members is not well supported (financially and otherwise) in our country. As his daughter and as a family member embedded in the health care system, what do I do with this information?

Perhaps there is a story here for possible future submission to Health Affair’s Narrative Matters (http://www.healthaffairs.org/NM.php). (Note: if you are interested in health policy and narrative and don’t know about this already, it is a wonderful non-technical resource). I even look up the submission guidelines. Coping comes in strange forms for someone like me who has always been a compulsive writer. I take some comfort in having read today that Roald Dahl did something similar when his favorite daughter Olivia died of complications from measles. He supposedly wrote out a very dispassionate account of the events surrounding her death. He wrote this in a school notebook and stored it in a desk drawer in his writer’s hut. (I do realize the important difference here between public and private musings, a topic for a future blog entry). Maybe this is a heavy topic to start out a blog on. But it is real and it is in line with the sorts of things I want to deal with in Medical Margins: the intersection of story/narrative and health care, and of people and topics that are marginalized. My Dad agrees to have parts of his story told here. As I said, he is a practical man.