End-of-life series educates both readers and reporter Date: 06/22/18
By Luanne Rife
Two emails landed in my inbox about hospice houses. One was from a woman living in Roanoke who was hoping to elicit community support to build a hospice house in time for her to die.
She had faced death once before and discovered her family and friends were not capable of caring for her, nor could she bear to return to a nursing home where she endured substandard care.
Roanoke, Christine Slade wrote, needed a house, not another program, “where people can die in peace and dignity. A beautiful, clean, well-staffed loving place where the dying can die and the grieving can grieve.”
The other email was from a group in Blacksburg, a college town about 30 miles away, that had been working for nearly a decade to create such a place. They expected soon to receive a donation of land and begin a fundraising campaign.
I knew very little about hospice houses as there are few of them in Virginia. I began by looking into why that is. Though vague complaints of “regulations” were voiced, I found Virginia’s do not differ much from two of its neighbors – North Carolina and West Virginia – where hospice houses are common. Hospice houses are money losers, but elsewhere people raise funds to support their communities’ hospice houses.
The barrier would not be found in state codes or budgets, but in the culture. Hospice agencies shared data that people living in the Roanoke and New River valleys were reluctant even to use their services in their own homes. Those who did usually waited until the last days or weeks and were interested solely in managing pain.
I could not write about hospice houses without first helping readers to become familiar with hospice services.
Rather than simply have doctors talking about end-of-life choices of their patients, I wanted to show how even highly educated medical people wrestle with those same decisions in their own family.
I asked the medical children of a prominent surgeon to talk about their angst as they made decisions about the care their father received in his last month, and about how they approached their mother’s end of life quite differently.
I followed another family, for a few months as the 102-year-old patriarch patient remained in his home as his children took turns caring for him. They were able to bring to the story an understanding of what hospice services could and could not do for their father and for them.
Meanwhile, Christine welcomed me to observe her journey as cancer weakened her body and she searched for a place to die. I stayed with her through the end.
I also continued during these months to interview health professionals, patients, families and ministers. I visited a hospice house and interviewed families who had used ones in other states. Finding people to talk with was not difficult. I tend to over-report, so the challenge was culling so many touching stories. This was particularly difficult since people were sharing their most intimate moments. I let all know their candor was helping to tell the stories even if much of what they said was omitted or condensed.
I learned about the No One Dies Alone program at a local hospital. Volunteers take turns sitting with patients who for various reasons are dying alone. I was able to talk with several of the volunteers about why they do it, with nurses about what it means for them to know someone is with their patients, and attend training sessions for potential volunteers. I was unable to gain permission to observe the program in action.
The stories were published in September and October, and were updated when people died. Our online team made a landing page to keep the stories together, and hosted a calendar for community events on the topic. Coincidentally, Roanoke Valley Reads fall book selection was Paul Kalanithi’s When Breath Becomes Air.
I failed to understand going into these stories the emotional impact they would have on me. Once Christine entered a nursing home, I continued to visit with her several times a week. I swapped the “journalist” role for one of “friend,” making sure she had what she needed to die as comfortably as possible.
I continued covering my beat while working on this series, so when it became emotionally taxing I’d search out a lighter story, such as one about a vet school study to put fat cats on diets.
While on vacation I received a call from a friend of one of the hospice workers I interviewed. He spent most of his days befriending the dying. He had killed himself.
By December, the year-long immersion on the topic had left me drained. I was assigned to write one of our “Whatever happened to” year-end stories. I braced myself. It was then that I reconnected with the family of the 102-year-old hospice patient and learned how impactful their story had been in the city’s African-American community that is reluctant to use hospice care. I also heard the stories prompted people to volunteer for hospice agencies and that health care providers were using the stories to have better conversations with their patients.
We plan to publish one more story that will provide practical information on preparing for death. The timing has been delayed as we are attempting to schedule a forum immediately after publication in which attorneys, physicians and others are on hand to answer questions.
Luanne Rife (@LuanneRife) writes for The Roanoke Times about the businesses, policies, discoveries and inventions that affect the health of people living in southwestern Virginia.