Helping Caregivers With Difficult Conversations

Sometimes in the silences
Originally uploaded by What is in us

Contentious conversations about healthcare. As the healthcare reform debate has heated up in recent months, the acrimony barometer has skyrocketed. That's why I recently read with great interest about the Public Conversations Project. This nonprofit has been facilitating conversations on controversial subjects (think abortion, the Palestinian-Israeli conflict, etc.) for 20 years. On April 7, in partnership with the Harvard School of Public Health, they're offering a free workshop to anyone involved in health care.

The workshop takes place in the Boston area and will cover the "use of carefully crafted questions...ways to encourage deep listening, respectful speaking, genuine curiosity and collaboration." Hmmm...sounds like a workshop a lot of people could benefit from, including a few Senators and Congressman I know.

Improving communication is one important focus of Schwartz Center Rounds, a program now taking place at 186 facilities across the country. Rounds bring together a group of multidisciplinary caregivers to delve into the emotional challenges of patient care. In a profession where the stakes for failed communication are so high, we need more programs like Rounds and the Public Conversations Project.

Making Sense of Suffering Through Poetry

Day 52/365 - Blocking
Originally uploaded by tobi.lowrance

Beth Lown, MD, is a renaissance woman. An internist at Mt. Auburn Hospital in Cambridge, MA, she’s also a teacher, a researcher and a writer, and not only an academic writer, but a poet as well. She started writing poetry in 1977 when she was an intern. I know her well through her work as a board member of the Kenneth B. Schwartz Center and a member of the executive committee. She has been an active ambassador for the Center and compassionate health care in general and was a finalist for the Schwartz Center Compassionate Caregiver Award ® in its inaugural year.

I just found out that her beautiful poem Leylo and the Land Mine won the Annals of Internal Medicine’s best poem of 2009, and was published in the journal last summer. The poem describes a Somalian woman Beth saw in her clinic only once. She never actually saw her patient’s face because she was veiled. The poem is about Beth’s effort to imagine this patient’s experience and to empathize with her suffering.

Beth told me that she writes poetry for many reasons – to make sense of the experience of illness and the role of the physician, and to remember, memorialize and celebrate the lives of her patients and all they have taught her.

Let me know what you think of the poem.

Leylo and the Land Mine *

An ebony leg leaned
against the clinic wall,
snow melting
on its sandal-clad foot.
The rest of her sat
on the exam table,
a thin, dark,
discontinuous girl.
Metal fragments
studded her x-rays,
shining like
a brilliant galaxy.

Above the veil
her eyes scanned mine,
as I wondered how
to understand that moment
when hope exploded
and her toes bloomed
like bloody flowers
in the trees of her distant
Somalian village.

I should ask Beth to contribute to the Schwartz Center’s compassionate tweets. Every Monday through Friday we’re tweeting inspirational quotes about compassion. Sign up for our compassionate tweets @ kschwartzcenter and feel free to contribute.


*Beth Lown, Leylo and the Land Mine. Ann Intern Med July 7, 2009 151:62

A Husband's Anguish About His Wife's Last 10 Days of Life in the Hospital

Nancy Fergusson suffered a painful death from melanoma on January 7 of this year. The cancer had spread throughout her body, eventually reaching its final destination: her brain. Her last 10 days were spent in the hospital, with her treatment culminating in a palliative procedure called Whole Brain Radiation, which was performed to relieve her terrible headaches and nausea. The procedure was harrowing for both her and her husband George and it was stopped after two sessions. George is frank, but understanding, of the ways he believes her caregivers and the system failed them, and documented the last 10 days of Nancy’s life in this moving account.

George reached out to me after participating in Schwartz Center Rounds at Harold Alfond Cancer Care Center in Augusta, Maine. Rounds, as you may know, are offered at 186 healthcare facilities across the country and they’re a sacred space where caregivers from multiple disciplines can process the tough psychosocial issues that come up in their daily work. George was invited to present to the cancer center staff his and Nancy’s experience of care. The hospital prepped staff for his presentation by distributing his story about her death. The piece brings up so many important questions, including:

• When does even palliative treatment become too painful to endure, and how can patients and families be empowered to refuse it?

• When is it time for caregivers to articulate that a patient is going to die imminently? Whose role is it to deliver this news?

• How can caregivers be sure to look beyond the disease and really see the patient, factoring in his/her values, belief system and feelings into the treatment plan?

When George and I spoke recently, he told me that he felt “elated” after presenting at Rounds. “I was on Cloud 9 and I think a lot of people were,” he shared. “I felt that my feelings had been validated and people were truly appreciative of what I had done by going public, sharing my feelings, being open and vulnerable. We talked about not only what had gone wrong, but what had been done right as well. The Rounds gave me an opportunity to say ‘thank you’ to the people who had given so much of themselves caring for us. Everyone came away a winner.”

Let me know if George’s story resonates with you.

Hearing the Patient and Family Voices at Massachusetts Hospitals

By October of this year, every Massachusetts hospital will have a Patient and Family Advisory Council (PFAC) in place. Massachusetts is the only state which mandates these groups.

PFACs are intended to facilitate patient and family participation in “hospital care and decision-making, information sharing, and policy and program development,” according to the Massachusetts Department of Public Health. In other words, the councils are intended to ensure the patient and family voice gets heard by the hospital’s top brass.

Some of the issues that PFACs deal with include:

• Expanding visiting hours
• Improving educational materials for families and patients
• Redesigning forms like discharge medication forms
• Upgrading signage
• Providing input about renovation and new building projects

The Kenneth B. Schwartz Center did a similar pilot project several years ago called

The Patient Voice for Compassionate Care: Schwartz Center Dialogues. The program brought patients and families together with staff from three outpatient practices for a series of facilitated conversations. Each practice has made changes – or is in the process of making changes – based on the dialogues. These changes include providing “customer service training” for caregivers at one practice and creating a support group for diabetics at another. The pilot was very time- and labor-intensive, so we are trying to figure out how to replicate the program in a more viable way.

Do you think these types of patient advisory initiatives are a good idea? Or are they just good PR?