When It Shifts: Lessons Learned from a (Not Always Patient) Nurse Turned Patient


For the past year and a half, I’ve been spending time with a friend on hospice. You read that right. To qualify for hospice, prevailing medical opinion must be that a person has only about six months to live. That can be a difficult prognosis for a patient, and a patient’s family and friends, to accept (even a physician may resist acknowledging that it’s time to think about end-of-life care rather than persisting in aggressive treatment). But, paradoxically, accepting that death is a reality can improve both quality and quantity of life. Numerous studies suggest that the earlier a person opts for hospice, the longer they live, and the better the experience they have in their final months. Although there are some excellent hospice facilities in communities across the US, and increasingly around the world, people on hospice may also be able to remain at home, which can further improve both quantity and quality of life.

This has proven true for my friend. Perhaps her career as a nurse allowed her to understand the implications of all the choices she made as a patient—pursuing new treatments when the lung disease she had progressed, then transitioning to hospice when it became clear those new treatments had come too late to slow her illness. She’s remained active as long as she could in whatever way she could. And she’s been able to live her life at home, surrounded by her spouse, her dog, her musical instruments and art, and as many visitors as she could put up with, whenever she wanted to see us. I’ve learned a tremendous amount from sharing this time with her and her spouse, and it’s shaped my thinking, teaching, and writing about illness and the end of life. “When It Shifts,” a short post about an incident early in her time on hospice, just appeared in Oregon Humanities magazine. You can read it here.

What Can Medical Education Learn from the Humanities?

I spent the weekend at the medical school at Stanford University, for MedX, a conference focused on the future of patient-centered medical education. Here’s the description of the workshop I led:

What medicine can learn from humanities: Promoting intellectual and emotional engagement, increasing patient-provider connections, and improving medical student and physician wellness.

Here’s the time slot in which I led it: 11:21 AM – 12:06 PM. Apparently precision medicine depends on precision timekeeping.

Whenever the start or stop time, 45 minutes isn’t very long for workshop participants to develop a deep engagement, and yet . . . of the 30+ people in the session, all but one or two volunteered to share their reflections at least once, most more than once. And these were reflections about the BIG HARD THINGS, like intimacy (emotional and physical) and grief.

We began by discussing the difference between “humanism” and “the humanities” (a topic I’ll save for a separate blog entry). Then participants jotted down and shared their observations of Karl Hofer’s oil painting Frühe Stunde (Early Hour). KarlHofer_Fruhe_Stunde_EarlyHourThen I asked what connections they could make from what we collectively observed about this painting and medical education/the practice of medicine. This gave everyone a chance to reflect on how relationships shape medical care, on what role intimacy plays in healing, on how concepts like foreground/background or light/shadow can serve as metaphors for medicine. Then we moved on to discussing Denise Levertov’s poem Talking to Grief. It was a risk to try to cover two works in such a short session, but I wanted participants to experience how talking about something as different as a painting or a poem could be equally helpful in talking about medicine. We finished by taking time to share thoughts about what impact sessions like this could have for medical students, for practitioners, and for patients and their families.

Two other highlights of the conference for me:
A plenary talk by Erik Brodt, MD about We Are Healers, an organization dedicated to encouraging Native American youth to pursue careers in health care professions. His entire presentation was a reminder of the value of respecting and celebrating different cultures, because he resisted the usual plenary talk format, instead combining story and ritual with a few slides of data points to explain his work and convey its importance.

A breakout session by Loren Pogir and Kate Nitze of the Zen Hospice Project about what support family members need when caring for a loved one who is terminally ill. There are literally millions of Americans in this situation, often with little or no support for an emotionally (and often also physically and financially) challenging time. Despite the “zen” in the title, their organization isn’t religiously based; nevertheless the spiritual importance of what they do was clear from the format as well as the content of the presentation. It was wonderful to learn and reflect with them and my fellow participants.

What Can Vincent Van Gogh Reveal About Atul Gawande?


Vincent Van Gogh didn’t grow old (he died from a bullet wound, probably self-inflicted). But he painted these cottages in the hamlet where he spent the last months of his short life.

This painting hangs in Portland Art Museum, where I’m currently teaching a course on how literature and art shapes our understanding of aging, of illness, and of the end of life. For the first week’s session, we read Atul Gawande’s Being Mortal and shared some of our own experiences of illness and aging, and of caring for people we loved through the end of their lives. And then we turned to Van Gogh, and thought about the image of aging and community he offers here.

While books like Gawande’s make us aware of the emotional as well as the financial cost of extending life with extreme interventions, when we critique contemporary practices we run the risk of romanticizing what old age was like in past eras.

I don’t think Van Gogh gives us a clear answer either way, about whether aging in a small village (without ADA-compliant accessible dwellings!) was always better than what many people face in our medical-intervention oriented culture today. But I loved using this beautiful painting to probe the questions that Gawande also raises.