While participating in the AAFP Foundation's Family Medicine Leads Emerging Leader Institute(www.aafpfoundation.org) this year, Joshua Wienczkowski, M.D., created the End of Life Literacy website.(endoflifeliteracy.com)
The first-year resident at East Tennessee State University Family Medicine Residency in Kingsport designed the website as a point-of-care tool to guide medical students and residents step-by-step through end-of-life care discussions.
End of Life Literacy includes the death and dying scenarios and associated discussions that medical students and residents are most likely to encounter in their training. Each of these conversations is outlined by a practicing physicians who regularly deals with the situation described.
The website also offers resources such as handpicked academic and journal articles on death and dying, TED Talks that medical students and residents can stream while on call and books on end-of-life care that physicians have recommended. Additional sections present residents' accounts of how they cope with death and dying, stories of dying patients told by the physicians who cared for them in their final days, and information on how to become certified in end-of-life literacy.
- While participating in the AAFP Foundation's Family Medicine Leads Emerging Leader Institute this year, Joshua Wienczkowski, M.D., created the End of Life Literacy website.
- The website presents the six death and dying discussions that medical students and residents are most likely to encounter in their training.
- The website also offers resources such as handpicked academic and journal articles on death and dying, relevant TED Talks, and books on end-of-life care that physicians have recommended.
For his work, Wienczkowski was recognized by the AAFP Foundation's Family Medicine Leads Emerging Leader Institute as one of three overall best project award winners, taking top honors in the institute's Personal & Practice Leadership track.
Filling a Gap
Wienczkowski said he created End of Life Literacy to fill a gap that was "clearly present" in medical education.
"In medical education, most medical schools and residencies offer very few lectures, courses or rotations on death and dying," he told AAFP News. "There is a standardized approach to reading a chest X-ray, but there currently isn't a standardized approach to teaching death and dying discussions."
Wienczkowski said this project stemmed from his not being prepared to lead discussions on death and dying, which led him to question why he wasn't prepared.
"In medicine, we all deliver a baby and are well-versed in how to bring someone into this world, but I wondered why we don't prepare our best and brightest to help someone leave this world and help them fulfill their own definition of a good death."
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Wienczkowski said his preliminary research showed that if physicians were uncomfortable with death and dying discussions, it was due to a possible combination of three primary reasons:
- they don't know what they don't know, which stems from lack of education;
- they view death as a failure on their part as a physician, which is a medical culture deficiency; and/or
- they are uncomfortable or they fear the topic, which is rooted in both lack of education and a medical culture that has too often treated death as a medical event rather than a complex social and spiritual happening.
During his review of other available death and dying resources, Wienczkowski said he found several options that were complex and not very straightforward, which led him to design End of Life Literacy to be simple and easy to navigate.
He also took into account the most common thread he heard while talking with attendings from all over the country: to simply be present in these incredibly vulnerable moments.
"People only die once," he said. "Families have often spent decades knowing and loving a person leading up to that final moment. To treat death and the act of dying as simply a medical event is to disregard the beauty and impact that person created in the world."
The Scenarios section(endoflifeliteracy.com) of the End of Life Literacy website presents the most common end-of-life care discussions physicians-in-training will have during medical school and residency grouped into the following topic areas:
- Advance Care Planning,
- Terminal Diagnosis,
- Hospice & Palliative,
- Critically Ill,
- Death, and
- Pediatric Deaths
In addition, the website offers family physicians the opportunity to participate by talking about their firsthand experiences in its Death & Coping(endoflifeliteracy.com) and Narrative Medicine(endoflifeliteracy.com) sections.
The Death & Coping section uses powerful stories to remind medical students, family medicine residents and physicians of some key struggles that can accompany the care of dying patients: guilt, shame, fear, anger and the need to talk about what happened, Wienczkowski said.
"Narrative Medicine is about sharing specific stories so the original provider has a cathartic way to process that death, but also for others to learn through their experience," he added.
Wienczkowski is looking for new submissions from practicing residents and physicians detailing how they've been impacted by their patients' deaths.
"What did those deaths mean to you? How did they change you? What did you learn?" he asked.
Family physicians, residents and medical students who are interested in participating can contact Wienczkowski at email@example.com.
Regarding family physicians' ability to use the online resources to certify themselves as End of Life Literate,(endoflifeliteracy.com) Wienczkowski said this process is intended as a first step in standardizing the approach to teaching end-of-life care in medicine.
"Learners are guided through different patient scenarios, read articles (from) both academic and media (sources), watch TED Talks, read books about death and dying, and the experience culminates in writing a Narrative Medicine piece and having an end-of-life care conversation with a patient led by a senior resident or attending," he said.
Takeaways, Next Steps
Wienczkowski said he hopes the End of Life Literacy resource can help reframe a physician's perspective before entering a room to engage in these complex moments.
"A small example is at the end of each scenario, there's a reminder to the learner that says: 'May your words be kind, gestures gentle and compassion at the peak of your emotional capacity as a human when talking with families in these moments,'" he said.
"There's no reason a young physician should feel terrified to enter a room and help guide a patient and their family in death and dying discussions."
Wienczkowski plans to update the website periodically with new articles, videos and Narrative Medicine pieces.
"My vision is for End of Life Literacy to evolve into a platform that is the standard for teaching death and dying in medicine," he said. "I'd like (to see) every medical school, every residency using this powerful tool to guide health care providers in having quality, educated and informed end-of-life care conversations with patients and their families.
"For now, I'm just trying to survive my intern year!" Wienczkowski said.
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