David Browning

Senior Research and Development Associate

Center for Applied Ethics (CAE)

How can doctors, nurses, and other health care providers help families cope with an unthinkable loss—a child who's going to die? The field of pediatric palliative care is relatively new. While modern medicine has made strides to improve end-of-life care for adults, very little has been done for dying children and their families.

“We don’t want to believe that children die,” says bereavement expert David Browning. “It’s harder in a culture like ours that is so medically successful that we prevent most children from dying. The technology and efforts to cure are so sophisticated...and children are so precious, we believe they don’t have to die at all. But children do die in this country, routinely—55,000 a year. Culturally, no one wanted to look at the problem of families and the quality of end-of-life care for children.”

EDC founded the Initiative for Pediatric Palliative Care (IPPC) to address that gap in the U.S. health care system by helping physicians, nurses, and other practitioners to better communicate with and assist families with critically ill children—from the time of diagnosis through treatment, hospitalization, during the dying process, grieving, and beyond. David joined EDC in 2002 to develop the national IPPC training curriculum, bringing 25 years as a clinical social worker into the educational realm.

Death is a topic most people avoid. Why did you choose to go into bereavement counseling and education?

My mother died when I was a teenager, so issues around bereavement and loss were always close to me. That's why I pursued it professionally. As a bereavement counselor, sitting with patients going through a loss embedded a lot of stories in my bones. That made me want to be an educator in a way that I'd feel like I'm living up to the moral demands of carrying those stories. I was in a private counseling practice when I learned about the opening at EDC. I was hired as part of a team to develop the IPPC curriculum.

How did the need for training around end-of-life issues for children arise?

IPPC had been in existence for a few years before I came onboard, focusing on research and quality improvement in pediatric palliative care. The educational part of the project, for which I was hired, was envisioned as an online curriculum available free of charge to health care practitioners. What we learned in the pilot phase was that clinicians in health care settings, particularly in hospitals, liked the curriculum content but said, “We need help to know how to do this.” So we found additional funding to do something we hadn't originally planned, which was to take the curriculum around the country in a train-the-trainers model. Our goal is to create empathy between doctors, patients, and families within a health care culture that doesn’t always honor and support that work. We’re empowering practitioners to go back to their institutions and create change.

How is the IPPC training different?

We've had 10 interdisciplinary educational retreats in the last two years where health care professionals and bereaved parents come together to learn. That's IPPC's special uniqueness: On top of a strong curriculum, the two groups—health care practitioners and parents—come together as equal participants. That was a risky approach, but Millie Solomon (EDC vice president and center director) supported our pushing the envelope. Integrating family members into the health care curriculum was controversial, but now no one would question it. Optimal care is rooted in those patient-practitioner relationships and in mutual trust and advocacy. We call it “relational learning.”

Millie also helped us set up a collaboration with the Program to Enhance Relational & Communication Skills (PERCS) at Children's Hospital in Boston. Language and the way medical information is given to families is fundamental to their sense of well-being or lack thereof in certain situations. In a health care culture where busy physicians are under pressure to fit in so many patients, honest conversation is not always supported. The communications segment of the IPPC curriculum was videotaped at Children's Hospital.

What sort of feedback do you get from IPPC participants?

We're getting outstanding feedback. Interestingly—and most people wouldn't expect this—but the most grateful learners are the physicians. For health care practitioners and physicians in particular, there isn't much going on learning-wise for those who work in the difficult area of children with life-threatening illnesses. This is emotionally and spiritually challenging work. There aren't many places where physicians can come together in a safe place and talk openly about their work with each other. Plus we added parents to learn together with them. Because of that, they have very powerful experiences at our retreats. Our goal is to promote a health care culture that not only provides better patient care but supports clinicians who have the tough human job of doing this work. Otherwise they're likely to burn out and go work for Starbucks.

What's the most interesting idea in your field right now?

We're seeing a shift in health care that as technology gets more and more developed, health care professionals are pushed further and further away from the patients. As things get more medicalized and more technology comes to the fore, health care professionals need to be reminded that taking care of patients is a human enterprise that happens in relationships. The quality of relationships is at the core of what they do. We want to help bring those relationships back into focus.

What surprises you most about this work?

What surprises me and keeps me going is the privilege of meeting bereaved parents who are working with and teaching health care practitioners around the country. I'm in awe of their courage. I'm inspired by physicians who are doing their damndest to give good care, year after year after year. It's a rejuvenating reminder that such a level of caring and compassion exists in this flawed health care system. There's a miraculousness in that.

Browning is Director, Initiative for Pediatric Palliative Care, and
Senior Research and Development Associate, Center for Applied Ethics and Professional Practice

Related Links:

Initiative for Pediatric Palliative Care (IPPC)

Program to Enhance Relational & Communication Skills (PERCS)

National Public Radio show spotlighting IPPC (scroll down to “Palliative Care for Children”)