Of Poems, Hearts, and Hands

hand. (Photo credit: bambola_world)

Last week in my narrative medicine course I had two local authors come to class to read some of their writing and lead class discussions. The first guest speaker was Suzanne Edison, a poet and psychotherapist. She also leads Seattle-area workshops
on therapeutic poetry writing with parents of children with chronic illness, as well as with adolescents with chronic illness—at Seattle Children’s Hospital
and at Odessa Brown Children’s Clinic. Suzanne read poems from her two poetry chapbooks Tattooed With Flowers (2009) and What Cannot Be Swallowed (2012).  In our first class session this quarter we had done a close reading of her powerful poem “Teeter Totter.” Students had questions about some of the metaphors and lines in her poem, so last week they were able to ask Suzanne about them directly. (“Teeter Totter” also appeared in Ars Medica, Fall 2009).

Suzanne led the class in a poetry-writing session that she has developed. First, she asked students to write about a time they had an interpersonal conflict of some sort. Then they went through their prose piece and circled four to five words that stood out to them. Suzanne had them do some other tasks in order to come up with an expanded list of words (a dozen or so). Finally, Suzanne asked them to write a poem (in any form) using all of their words. Several students wanted to share part of or the entire poem they had written, and one student commented on how powerful it was to ‘get it out there.’ Students pointed out that reliving the stressful, difficult interpersonal interactions through the poetry exercise brought on stress responses (sweaty palms or changes in heartbeat and breathing), but that writing the actual poem gave them some distance from it and left them feeling more peaceful. Suzanne explained that the poem is a way to create a container for these powerful memories and emotions. One student wrote of this
as “framing the event in the bubble of a poem.”

I prefaced this poetry-writing exercise by letting the students know that what
they wrote was for their eyes only—that I would not ask them to turn in this
writing to me. Suzanne and I had incorporated the same writing exercise last
fall in my undergraduate community health course, when I did ask students to turn in their poems to me. I got feedback from some students that they found this to be intrusive into their personal lives when they didn’t really know me. Duly noted, and very true since it was a class of 150 students (vs. 40 students in the narrative medicine course). So this time around I set the parameters upfront that they wouldn’t have to share their poems with me. Instead, the first writing prompt I gave them for in-class writing was to share a fragment of their poem, or a key word, and to reflect on what surprised them most about what came out of the poetry exercise. This seemed to work out much better. It probably also helped that this class is specifically on narrative medicine, and students expect to do more creative and personal writing in it than they typically do in a more traditional nursing course.

The second guest author was Mary Oak, author of Heart’s Oratorio: One Woman’s Journey Through Love, Death and Modern Medicine (Goldenstone Press, 2013). (see my previous post/book review “Heart’s Oratorio” from 3-24-13). She read passages from her book and answered student questions. As one of the selections she read was about her stay in the ICU and how disorienting it was, students had questions for her about this. They also asked her what motivated her to write the book and about her development as a writer. Since Mary writes about her genetic heart condition and is a mother, students also asked what the ramifications are for her children, and what that feels like now that’s she’s lived through serious cardiac complications. Much of Mary’s book is set in Seattle and she mentions specific hospitals (Northwest Hospital and University
of Washington Medical Center) and some medical personnel by name. This led to an interesting class discussion on the ethics and legalities of nonfiction medical-related writing. Several students mentioned recent ‘compliance trainings’ they’ve had to go through in their jobs as RNs in Seattle-area hospitals, where the message was that ‘they could never ever write about their work in any context whatsoever!’ They were concerned since they were asked to write about their work for class assignments (like for my course). We reviewed the basic parameters on this for academic writing: 1) no patient identifiers such as name, age, super-rare medical condition, etc.; and, 2) no specific names of providers, hospitals, clinics, care facilities—although I acknowledged this can lead to strange permutations, such as “a large Level-I Trauma Center in the Seattle area” (there is only one Level-1 trauma center in Washington State—in fact within a four state radius—and that would be Harborview Medical Center). And then I briefly discussed various legal and ethical parameters as designated by specific journals, differentiating what I was asking them to write about versus writing for publication. I got on my soapbox briefly to rant about how hospital administrators try hard to intimidate nurses (and others even lower in the food-chain) into not writing about their work—but the intimidation is real and nurses can and do lose their jobs over this stuff—and it is easy for me to rant from the relative security of my tenured academic soapbox.

Back off my soapbox, Mary read them a lovely poem by a nurse poet friend of hers, Lise Kunkel, who works in hospice nursing in New York State. The poem had to do with her hands while caring for a hospice patient. So for my last writing prompt I had students think of a significant patient-nurse interaction they had had and to write it from the perspective of their hands: Tell the story your hands could tell. Since I was really stuck back on my soapbox and hadn’t thought through the specific writing prompts I wanted to use for that class session, this one was completely made-up on the spot. I had no idea what students would do with it until I read through their writing this week.

Wow—just wow! That prompt worked, as nurses most definitely identify and
communicate with their hands. Some students wrote from the perspective of their hands: the punishing abuse from the frequent application of hand sanitizer; the uncertainty of where to place their hands during certain patient-nurse or healthcare team interactions; the patient assessment of skin warmth or clamminess or bulges where there shouldn’t be bulges—and, as one student stated, providing “a loving touch, not a medical touch.”

Addendum: I received an e-mail from hospice nurse Lise Kunkel with a link to one of her published poems, “Reading Aloud to Dad (for Jiggs)” in Oncology Times, 3-10-09, vol 31(5),p. 34. She also told me the name of the poem that Mary Oak read to my class last week: “The Hands of a Hospice Nurse.” She uses some of her poems in trainings she does for hospice volunteers through the Care for the Dying Cooperative in NY State. Lucky volunteers and lucky patients….

Ethnomed Local/Global Resource

Harborview Hospital on First Hill seen from Pi...
Harborview Hospital on First Hill seen from Pioneer Square neighborhood, Seattle, Washington, USA. (Photo credit: Wikipedia)

Harborview is the large King County hospital located on “Pill Hill” in the middle of Seattle. It is the only Level 1 Trauma Center for all of Washington, Alaska, Montana and Idaho. Harborview’s specific mission is to care for the county’s most vulnerable patients. As such, it forms the most visible part of the health care safety net for the Seattle area. I am always a bit awed by the scope of what they do, and have been able to see some of that firsthand this summer—from the high-tech trauma ICU to the low-tech/high touch Daryel /Somali Women’s Wellness Project.

A useful Harborview resource I highly recommend is Ethnomed. Ethnomed is Harborview Medical Center‘s ethnic medicine website. The main purpose of Ethnomed is to help busy health care providers integrate cultural information into their clinical practice. While Ethnomed’s focus is on the main refugee and immigrant population groups currently coming to and residing in Seattle/King County, there is also general cross-cultural information that would be useful in any area. There are links to specific cultures, to different clinical topics, and links to printable patient education handouts in different languages including Spanish. On the main page there’s a link to sign-up for Ethnomed’s electronic newsletter.


Nothing About Me Without Me

An electronic medical record example
Image via Wikipedia

Donald Berwick, recent Administrator of the Centers for Medicare and Medicaid Services, and past President of the Institute for Healthcare Improvement, has some opinions on patient-centered care. One of his maxims for patient-centered care is: nothing about me without me—addressing transparency and patient participation in care. In one of his speeches, “Escape Fire: Lessons for the Future of Health Care” (Commonwealth Fund, 2002), he rails against the difficulties patients have in having access to their own medical information.

Isn’t it ironic that giving patients access to their own medical charts is considered a radical idea? So radical in fact that the Robert Wood Johnson Foundation—that pioneering, cutting edge organization—is funding research on the feasibility and effectiveness of giving patients access to their own medical records. A one-year pilot project called “OpenNotes” was conducted at three hospitals: Harborview Medical Center in Seattle, Beth Israel Deaconess Medical Center in Boston, and the Geisinger Health system in Pennsylvania. Results from the baseline survey data were reported in the Annals of Internal Medicine (12-20-11). Not surprisingly, patients were overwhelmingly (>90%) supportive of the idea of having access to their doctor’s medical notes, saying it would help them remember important health information. In contrast, the majority of the 173 doctors completing baseline surveys expressed reservations over the OpenNote idea. The doctor’s concerns included: 1) worrying/confusing patients with medical chart information, 2) doctors would be less candid in what they charted about patients, 3) it would take up more of their time in having to answer patient questions raised by access to their charts, 4) it could increase the number of lawsuits, and, 5) personal medical information could end up on Facebook.  The yearlong pilot has ended and OpenNote researchers are now analyzing data to see how patients and doctors who participated in the project felt about it. They are also evaluating how often patients accessed their medical charts, how often they shared them with family/other providers, and how often they corrected errors the doctors had made in the charts.

As Carol Ostrom points out in her recent article on the OpenNote project, doctors may need to change some of their charting habits in terms of labeling patients. (“Patients eager to see doctor’s notes; physicians, not so much” Seattle Times, 12-25-11). She includes calling patients SOBs and charting on their BS (bowel signs). I’m not sure I’ve ever read a medical chart where someone called a patient a SOB, but I last worked in a clinic that had ‘slovenly’ as a standard term in a menu for describing patients. My colleagues and I had a debate, with some saying slovenly was a perfectly acceptable term for patients—similar to unkempt or disheveled. I maintained it was much more insulting because it implied a slur on moral character as well as physical appearance. And then there’s the still used FLK (funny looking kid) in pediatrics, used for describing a baby or toddler ‘just doesn’t look quite right and might have a genetic or other disorder but who hasn’t been diagnosed yet.’ Supposedly some pediatricians have been known to use FLP (funny looking parent) in children’s charts—I suppose by way of saying the FLK is genetic in a FLF (funny looking family) sort of way. I don’t think these terms would go over well in OpenNote.