This open session, moderated by Tamara Ball, MD, with panel members Lee Hancock of the Dallas Morning news and Robert L. Fine, MD, director of the Office of Clinical Ethics and Palliative Care at the Baylor Health Care System, Dallas, was one of the most moving and inspiring one and one-half hours I’ve ever spent, and that is no exaggeration. The mood was set by a video, made by Dallas Morning News photographer Sonya Hebert, of the last days of patients and their loved ones. The basis for the session was the history of collaboration between the reporter, the photographer, the palliative care physician, and the palliative care nurse Min Patel that became a Pulitzer-nominated 5-part series in the Morning News.
Dr. Fine set the history of his 2004 initiation of palliative care at Baylor in the broader context of the clinical ethics movement that came to the fore after the famous 1970s court battle over removing Karen Ann Quinlan from a respirator; by the early 1990s, he and his colleagues were doing over 100 ethics consults per year. Dr. Fine’s inspiration initially came from members of the clergy-in-training program at Baylor who spent time with the dying persons, helping them and their loved ones with the nonphysical pain that accompanies the end of life. Looking at the number of deaths in his hospital, Dr. Fine saw the need for healthcare workers to provide something beyond quick visits to lessen physical pain. He asked himself how his big-city hospital that has many patients awaiting organ transplants and serves a large indigent population could ever afford a palliative care program. The answer came in the way of an anonymous donor who wrote an $80,000 check to get the program started.
In 2007, Dr. Fine got a call from reporter Lee Hancock in which she proposed a story on the Baylor palliative care program. He described his reaction: “I don’t think so!” Turns out Lee had recently written a story that was less-than-favorable about Baylor. But then he realized that “getting the story out” might be a way to raise money for the program. His team also had some initial hesitancy but then agreed.
A meeting with Lee helped convince Dr. Fine to go forward. She had first-hand experience with the anguish that a family feels watching a loved one suffer: Her youngest brother had developed a mysterious fungal infection in his brain, and after 5 years in and out of the hospital, spent 8 months of his last year of life in the ICU. On her visits, she saw not only how her family struggled with what was happening, but also the nurses’ anguish over their inability to help. Back in Dallas, upon hearing her interest in improving the situation for end-of-life care, people kept pointing her to Dr. Fine.
Lee also had some concerns about the project. The editors of her paper were used to covering violence, crises, and disasters. But even mentioning the topic of being with dying patients and their families made them wince; these stories of “someone like you,” of being with someone who was passing, of being present “within the intimate look at death,” that didn’t come easily. Beyond that, there were possible conflicts between the concerns of Baylor and the Dallas Morning News: Would the hospital place too many constraints on what could be written, what photos could be published? After about 6 months’ negotiation with lawyers from both sides, the agreement was reached. Guidelines and rules were established requiring consent from families for photos and interviews, a separate consent for looking at the medical charts, and consent from any staff members present—among other stipulations safeguarding the interests of all concerned.
You’ve all heard the cliché, “You had to be there.” Nothing better describes the feeling that we attendees were left with at the end of this open session. Heart-wrenching sorrow at watching the videos of those families in their last moments together or facing those moments yet to come. But also, for me, a pride that communication and collaboration between members of the medical profession and a writer and a photographer surely will stimulate a greater emphasis on end-of-life issues, and relieve for more persons “the loneliness of the patient.”
--Mary Wessling
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