A single family shows what a difference access to palliative care can make

Death is always unpredictable, but that’s especially so for people with chronic and terminal illnesses. On some days, death hovers on the distant horizon, seemingly years or even decades away. Then a lung collapses, or an infection rages, and death looms close.

For my recent California Fellowship reporting project, I wrote a story for The Washington Post about how a twist of fate — or rather, health care policy — can transform what it’s like to live with severe and chronic illness. Mark Hailey and Gordon Surber are brothers-in-law who live next door to one another in rural Northern California. Both men have chronic obstructive pulmonary disease (COPD), a lung disease that gradually whittles away their ability to breathe. Yet only one, Mark, has access to palliative care: a set of comprehensive, at-home services that include pain and symptom management, a social worker, nursing, and spiritual support.

Mark is eligible for palliative care because of a recent California law, SB 1004, which extended the service to some people with MediCal, California’s Medicaid program. As a result, he gets regular teleconference visits with a physician who specializes in pain management and home visits from a nurse, social worker and chaplain. Gordon’s insurance — Medicare and a private plan — does not cover palliative care. When his symptoms worsen, he must be rushed to a hospital in Eureka, hours from home. Recently he was hospitalized for a month due to a severe, life-threatening infection. His wife Judy is constantly scrambling to juggle work, caregiving, and caring for the couple’s three grandchildren.

When I first started working on this story, I thought I would focus on disparities in access to palliative care in nursing homes. After combing through the academic literature and calling dozens of palliative care physicians, nurses and social workers, however, I learned that insurance is one of the biggest drivers of disparity — particularly Medicare, which does not cover palliative care.  I also learned that the Centers for Medicare and Medicaid Services are currently discussing potential expansion of Medicare to cover palliative care, so the timing seemed right to focus on that angle. I wanted to vividly illustrate what palliative care looks like in practice and how it affects people’s lives by contrasting life with and without it.

Early on, I obtained permission to shadow a palliative care doctor and social worker in their rounds at a local hospital, taking off-the-record notes. That was incredibly moving. I witnessed several families forced to confront a family member’s death without the types of preparation and planning a palliative care team can help provide, such as an advanced directive. I also saw how a skilled palliative care team can help people live out their final moments with dignity and comfort. The social worker and physician agreed to ask some of their patients if they’d be willing to talk to me on the record, and two people did express interest. Sadly, however, both died before we could do a follow-up interview.

Next, I went to the University of California at San Francisco and met with a group of family members of people who had died. Some had received palliative care and some hadn’t, and they described how that had affected their loved ones’ quality of life. Several people recommended that I contact a palliative care physician named Dr. Michael Fratkin, so I emailed him. When I asked if he knew of anyone one willing to share their stories, he immediately put me in touch with Judy Surber and Dana Hailey.

I interviewed both women several times by phone. They asked their husbands, Gordon and Mark, if they would be willing to be interviewed, and both agreed. They granted me permission to visit them in their homes on the Hoopa Valley Indian Reservation. Both families were incredibly generous in sharing their stories. They showed me how much palliative care can help not just a person who is sick, but their caregivers — I could have written a much longer story about what Judy is suffering without the support Dana is receiving, but felt I had to narrow the focus, for the purposes of my 2,000-word word limit.

I was happy that my story found some traction and resonated with health policy experts, but by far the most gratifying result was hearing that that Gordon, Judy, Mark and Dana felt accurately and respectfully portrayed by it. I was especially thrilled when Judy texted me to tell me that Gordon was reading my article on a tablet from his hospital bed, and that he thought it was good.

Here are a few of the lessons I took away from this reporting experience:

• Short is OK. When I started out, I was sure that my 2,000-word limit would be woefully inadequate. But the length forced me to focus on one aspect of palliative care — lack of Medicare coverage — that is currently being discussed at a national level.

• Eliminate jargon. Health care is riddled with specialist jargon, sawdust phrases like “integrated care” and “team-based approach” that can be confusing and feel devoid of human meaning. Ask for as many concrete examples as possible to give readers a vivid sense of what those phrases mean. One of the most powerful illustrations of this that I found was a game called “Go Wish,” which a palliative care social worker used to help people prioritize their values and hopes — values like “Being kept clean,” or “Being free of pain,” or “Having human touch.”

• Use the literature. I use PubMed and look for relevant National Academies reports.  I also watch webcasts of National Academies meetings to see who seems like a good interview, and get a balanced range of viewpoints from academia, the clinical setting, and industry. I also canvass relevant foundations and advocacy groups. The California Health Care Foundation has been researching palliative care for years and serendipitously completed a report on disparities in access a couple of months after I started reporting.

• Be sensitive and patient. If you decide to write about people who are sick or dying, be prepared to spend a long time finding people who have the time and interest in talking to you. Then, be prepared for the fact that they may die in the course of your reporting. Don’t push — respect their comfort and their wishes, and their families’ wishes, too.

[Photo by Mercurywoodrose via Wikimedia Commons.]