The IOM/RWJ “Future of Nursing Report” talks about the fact that the vast majority of current nurses are ‘trained’ and have a mind-set of work as functional doers. “Functional doers” they define as “those who carry out the instructions of others–rather than ‘thoughtful strategists’–those who are informed decision makers and whose independent actions are based on education, evidence, and experience.” (p 5-3) I am reminded of one of my nursing school buddies (who dropped out and has done amazing things in health care without a nursing degree) who gave me a stuffed seal with a white nursing hat perched on (her) head–a ‘trained nurse.’ I still have that seal in my office to remind me of what I don’t want to be–and what I don’t want to model being for nursing students who pass through my life.

(An important aside: The term “functional doers” seems to mainly exist in this “Future of Nursing” report and also in a somewhat scary series of reports by some international group called the “Unicist Confederation” whose logo looks like the Trekkie Starfleet Command logo complete with the words “discovery of new frontiers.”They claim to be experts in “complexity sciences–the evolution of adaptive systems.” Perhaps a Unicist was part of the IOM expert panel?)

But apart from a science fiction “fix,” how can we ‘within’ the profession of nursing stop being a (passive aggressive, whining–my emphasis added) pack/herd/pod of functional doers? I think it is an important question for every nurse to ask him/herself. I’ve asked myself and two things action-oriented come to mind for me–things that are within my power to do/do better. One is that I need to step up my game when it comes to teaching my health policy courses for nursing students, and the second is continuing to speak up/advocate for admission of “non-traditional students “(students on the margin) into our nursing programs. I have taught/been involved with nursing admissions in four different academic institutions–here in the US and internationally–and I have seen the same sorts of things happen in all of them. There is a strong tendency (human nature) to choose people who are like us. In nursing education then it translates to choosing students  who are: 1) female, 2) white, 3) middle class Judeo-Christian background, and 4) docile do-gooder. (OK–in the international setting it was the local/cultural equivalent/different religion and race/ethnicity for that setting.) We want conformists, students who won’t question us in/out of the classroom—we want functional doers. So really, how do we undo nurses as functional doers?

This is the question that ran through my mind as I watched PBS’s Frontline “Facing Death” program about how we die in the US. It was shot almost entirely in Mount Sinai Hospital, Upper Eastside of Manhattan (exceptions were some “talking heads” such as Gerome Groopman, MD, Professor of Medicine at Harvard). It followed the stories of “actively dying” patients/their families/their physicians as they were forced to make difficult end of life decisions. As I mentioned in a previous post, this Frontline episode included only one nurse in the entire hour segment, and she happened to be a patient’s daughter. There were shadowy figures around patient beds–many with their faces erased digitally–and most with any name badges tucked into pockets. There were two apparent nurses (their backs only) in an opening scene. They are drawing curtains around an ICU bed, blocking the camera’s view of a patient being taken off of a ventilator and allowed to die. Some of these “supporting figures”  had to be nurses, but none were interviewed. Hospice and palliative care “outside of the hospital” was briefly mentioned in the care of several patients. Almost all of that care is provided by nurses, but none were shown or interviewed.

The one nurse in “Facing Death” was at least a powerful nurse: Nadge Vimet, RN, younger daughter of an 86 year old woman with advanced dementia and needing a ventilator. The most riveting scenes in the episode involved Nadge at odds with her (I’m assuming older) sister, a physician, Sherley Schwartz. They disagreed about the care decisions for their mother: whether or not to put her through surgery for a trach (breathing tube in through the neck). Nadge was adamant that they shouldn’t “out of compassion for her.” Her sister the physician was equally adamant that they should do everything possible: “I don’t want to be responsible for her death.” They put it to a family vote and Nadge was outvoted, so her mother had surgery for the trach. “Facing Death” ends with a scene of her mother alone in a hospital room overlooking Central Park. She has been unconscious and on a ventilator for the past year. The voice-overs discuss the “broken survivors of intensive care” and this as a failure of our health care system.

But really–where are the nurses in this? In the hospital they spend more time with the patients than doctors do. Nurses often provide “translation” services for patients and families. Translation from doctor’s medical jargon to more understandable “lay” language. Nurses often are witness to the sheer terror or physical pain that hospital patients have–generally worst in the middle of the night.

That is the title of an e-mail that my father sent to me today. He was asking me to look up information on the new Pfizer drug Inspira and the new implantable defibrillator/combo from Medtronics, both of which were announced at the recent American Heart Association meeting in Chicago. My father had an advertisement/news pop-up on his computer about them with the headline “Breakthrough for Congestive Heart Failure Patients” and he wanted to know if they would work for him. The short answer, of course, is no, although I reminded him that he could always ask his cardiologist about them, and I said a softer ‘no’ than that.

Before my conversation with my father today I had been planning to post a blog update with some positive news about an aspect of the health care system that seemed to finally be working for my father. I suppose a part of it still is: the home health agency he had established after his hospitalization (and which got bureaucratically stopped by a hospice blip–see previous post) was restarted and they outfitted him with a home vital sign monitoring system. It measures his blood pressure, heart rate, weight, and oxygen level and transmits the data to his primary care doctor every morning. He is happy about this as it gives him a level of control over his situation. That part is working. Unfortunately, he informed me today that he has seen a total of four different nurses from the home health agency in the past two weeks and that each one of them announces “this is our last visit, Medicare won’t pay for it” and none of them seem to be aware that the other nurses have been out to see him. This is the best home health agency available in his hometown. He laughs about it but admits it doesn’t make him very confident that they will provide any better home hospice care than my mother received (also a previous post topic).

Last night I watched PBS’s recent Frontline episode “Facing Death.” While overall it is well-done, and I have already pre-ordered the DVD to use in my upcoming health policy course, it is woefully incomplete on several important counts. For one thing it shows nothing of what a “good death” can look like and only peripherally mentions hospice or palliative care. Also–and this is obviously important to me–is that there is only one nurse portrayed in the entire episode, and she is the daughter of a dying patient. There were some blurred out faces of “help” in the hospital scenes, so I suppose some of them are the nurses… I have much more to say about this Frontline episode, but that will be a future post.

Two years ago today my mother died at home with me embracing her. I recently learned that as recently as a generation ago, midwives in England helped people die at home. Although I am not a midwife, the experience of being with my mother as she died was similar to those I’ve had in helping mothers birth their children. That part of it was powerful and even beautiful, but the health care system part failed all of us. My mother was in a hospice program at the time: a hospice program that was abysmal. My father was her primary caregiver and the hospice nurse had failed to explain to him pain and hallucination control. The hospice ‘comfort kit’ with liquid morphine for pain and Haldol for agitation sat sealed at the back of their refrigerator until I arrived five days before she died. As both a hospital and home health nurse, I had been with people before as they died. This, of course, was different since it was my mother. After she had taken what I thought was her last breath (it is hard to tell sometimes), I called hospice to have them send someone to declare death so I could call the funeral home. The person answering at the hospice (unfortunately a large for-profit hospice company) told me they didn’t do that (this was during regular ‘business hours’ and not some after-hours answering service). I told them I could not be expected to declare my own mother dead and they’d better send someone. I discovered after that experience that it is not easy to find out how to file an official complaint about hospice care. I think they make it difficult on purpose and hospice care is largely unregulated in this country.

On this anniversary of my mother’s death, I am hoping that hospice care is better this time around for my father—and for me. We are going with a different, smaller and not-for-profit hospice program in hopes they are of better quality. The hospice intake nurse came to meet with my father and me last week to do an assessment. It is unclear whether or not he qualifies for hospice yet as he is not oxygen-dependent. Seems there are fairly rigid Medicare rules about who qualifies for hospice with the primary diagnosis of heart failure. The nurse said he may have to wait until he has been in and out of the hospital a few more times (oh—that makes a lot of sense!). They have calls into my father’s family doctor and cardiologist to ‘get more information’ to decide if he qualifies for care. It has been a week and the doctors haven’t called them back. It is a fulltime job just trying to get little pieces of the health care system to talk to each other, and I am a health care insider. I think about Joan Didion’s The Year of Magical Thinking, which I found and read at my parent’s house last week (excellent book, somewhat similar in spirit to Terry Tempest William’s Refuge). For Didion, the magical thinking was holding on to her dead husband’s shoes, thinking he would need them when he came back. For me, the magical thinking is that our health care system will start working better, if not in my father’s lifetime, at least in mine.

I’m sitting in a red velvet pew in my father‘s church. It is cold as a morgue in here. As Pachalbel is played on the huge organ in the back of the church, I notice my father’s hand shaking as he holds the open hymnal. He starts hospice tomorrow, or at least they are coming to his home to do an intake assessment. Today we have a Halloween party at his house–a living wake as he calls it, but I can tell he is looking forward to seeing a lot of old friends again.

Two days ago when he found out about hospice, he fired me. At dinnertime he went on a hunger strike and the leftover Chinese food on his plate congealed and went cold. He refused to talk to me for awhile, except to tell me “I’ve never felt so out of control in my life.” Then he felt better and ate his food.

We sang “A Mighty Fortress” and my father needed help holding the big blue hymnal. His right hand is bandaged from a recent fall. A week ago I took my father to see his family doctor whose office is in a cornfield on the edge of the Cold Harbor Civil War battlefield. My father has gone to that same office for the past 50 years, and has had at least 2 doctors there retire on him. He’s had this younger doctor for the past 10 or so years.

While we waited in the exam room I went over four questions with my father–more detailed questions for his Living Will. He readily knew his answers to 3 out of 4 of the questions, but the one on restarting his heart if it stopped stumped him. He asked me for my opinion and I felt uncomfortable, so I advised him to talk with his doctor about that. After his doctor has checked his hand wound, I reminded my father about the resuscitation question. His doctor first told my father that he was “way ahead of most people in thinking about these questions and planning it out.” Then he said, “I’ve known you long enough that I know your answer to that question is ‘no.'”  I’m not sure how I feel about that conversation and how it went. I probably wouldn’t have been so directive and forceful with any of my patients, but at the same time my father did appreciate his frankness.

I am resting comfortably in my room, the morning after the final session of the three day intensive Narrative Medicine Conference here at Columbia University (101 version—there is an advanced version but not until 2012). I miss my groupies—my small group groupies. It was as if we did a sort of group therapy all weekend. I got to know them and they were a diverse group—from Paris and London and Canada and California. Some of us West Coasters plan to get together in San Francisco in about a month to do a post-Narrative Medicine letdown processing and check-in time. One of our West Coast group has been to Burning Man and that’s what they do, so why not?

A convert to Narrative Medicine I am not. I remain skeptical of its lofty claims to be able to humanize medicine. Nevertheless, there is a lot within it—and many of its leaders—that and who I like. The best session of the conference for me was the last. The title of the session was “Actionable Narratives: From the Clinical to the Political” by Marsha Hurst, PhD. Marsha is a political scientist by training and also has a long history with patient education and advocacy work. Hers was the first talk to include more critical reflection on the pitfalls and misuses of narrative medicine. She talked about how the deluge of personal narratives within all the media serves to dilute the power of story. She also pointed out how personal narratives that fit within a certain mold (generally redemptive, cheerful/upbeat) are used in politics and public policy—so that there really is only a single, simplified and sanitized story that gets heard. The content of Marsha’s talk yesterday was what I had really hoped I’d get more of in this conference, but perhaps that is what they include in their advanced Narrative Medicine conference.

My head is full of Ivy-league egg-headed (but a touchy-feely version of egg-headed, maybe soft boiled egg-headed) thoughts. I do have the post-partum narrative medicine blues. (Notice narrative medicine returns to un-capitalized as it should be). I am in NYC, so the perfect antidote is to go to SOHO and go shoe shopping.

I am writing from and about the Holy Land of Narrative Medicine. Yesterday I began a three day intensive workshop in Narrative Medicine with Rita Charon, MD and her colleagues at the College of Physicians and Surgeons, Columbia University. Narrative medicine, for the uninitiated, is the practice of health care within narrative competence. A good quality patient-provider interaction is one of telling stories. The patient tells the story of his or her illness or health need, and the provider has the ability to listen to and validate the patient’s story, as well as to be self-reflective about the patient-provider relationship—the story of the health care experience. Authors/books that are within the ‘new genre’ of narrative medicine include Abraham Verghese’s My Own Country: A Doctor’s Story of a Town and Its People In the Age of AIDS Rachel Remen’s Kitchen Table Wisdom: Stories That Heal,Theresa Brown’s Critical Care: A New Nurse Faces Death, Life, and Everything In Between and, Atul Gawande’s The Checklist Manifesto: How to Get Things Right.

I like the approach of narrative medicine, and my own book that I am writing, Catching Homelessness, falls in the genre of narrative medicine. I also like Rita Charon and her colleagues here who teach within their new Narrative Medicine graduate program. They all seem like nice and humble people. I am also skeptical, and wonder if narrative medicine isn’t taking itself a bit too seriously—as if it will cure all the ills of our health care system. As I sat through the various workshops, lectures, participant sharings of why they had come—many from all over the world-including from Paris and somewhere in Argentina (there are 40 of us disciples) —I couldn’t help but wonder at the strange cult-like atmosphere of it all. People said they had “found themselves,” “stumbled upon narrative medicine and now I’m happy—just happy,” among other things, and there was a reverential attitude towards Rita especially as if she were the high priestess of this new cult. When she gives a talk, Rita seems fond of repeating “Do you see?” while leaning on the lectern, or stepping back with hands folded in prayer. She obviously is passionate about this stuff. I have two more days of this workshop to be converted.