PBS series shines light on end-of-life issues
PBS series shines light on end-of-life issues
Hospices seek to capitalize on new awareness
It was clearly the single most dramatic public focus on issues of death and dying in recent memory. For four consecutive nights, from Sept. 10-13, Bill Moyers hosted a series on PBS, "On Our Own Terms," which was seen by 19 million viewers.
Highlighted by unusually frank and open discussions, the series embarked on a four-part dialogue:
• Program 1. Living with Dying: the ways in which patients and caregivers are trying to overcome the American culture’s denial of death.
• Program 2. A Different Kind of Care: a report on the evolution of palliative care and its emphasis on patients’ psychological, emotional, and spiritual well-being.
• Program 3. A Death of One’s Own: an exploration of the choices surrounding dying, including physician-assisted suicide, terminal sedation, the withdrawal of nutrients and hydration, and the implications for families, institutions, and communities.
• Program 4. A Time to Change: profiles of crusading individuals who offer palliative care to the working poor and the uninsured.
Building on the impact
Recognizing that public awareness would be raised dramatically by the series, hospice care professionals joined a nationwide mobilization of caregivers, public television, and nonprofit organizations to form local networks and coalitions to sponsor seminars and forums to build upon the impact of the series. "I would say over 250 communities have hosted [such] events," reports Rose Lynn Marra, publicist for Public Affairs Television in New York City.
"There are a number of hospices that have sought to capitalize on the series," notes David M. McGrew, MD, medical director of Hernando Pasco Hospice in Hernando and Pasco counties, FL. "What many hospices did was to set up hotlines and other opportunities for people to contact them. They networked together so that when the calls and inquiries came in, there was some way of dealing with them. Calls were referred as much as possible to local sources to address end-of-life care issues and answers. Beyond the series, people in many other venues seem to be bringing attention to end-of-life care."
Laying the foundation
An industrywide response, such as the one that accompanied the Moyers series, could not possibly have blossomed in full on Sept. 10 without months of planning.
"When Moyers conceived the idea of this series, we were wrapping up an earlier series on addiction and somehow the issue of end of life came up," recalls Angela Thimis, director of communications for The National Hospice and Palliative Care Organization (NHPCO) in Arlington, VA. "I understand that the funding awarded was not just for the series, but also to conduct outreach efforts around it. Before I came on board here there was a meeting in Miami that brought together leaders in hospice care and public TV, which pooled together interested parties that helped with the public relations aspect of the program. The Web site [thirteen.org/onourownterms/] is a perfect example of that."
Thimis points out that the focus of the series was far broader than just hospice care. "One of the outgrowths of this aspect of the series was that somewhere between 200 and 400 end-of-life networks were formed, encompassing public TV, hospice programs, clergy, senior citizens, AARP [American Association of Retired Persons], and anyone else concerned with these issues," she notes.
The NHPCO became actively involved with PBS as a national outreach partner. "We attended meetings and encouraged our members to promote and support the series," Thimis notes. "We reported on it in our newsletter, and developed a tool kit’ for members to help them when series aired. We wanted our members to identify the unique aspects that hospice programming can bring to addressing the challenges laid out in the series."
The NHPCO felt it was critically important to put materials in members’ hands for the town meetings and seminars. Its sister organization, the National Hospice Foundation (NHF), produced three brochures for this purpose:
• Communicating Your End-of-Life Wishes: how to converse with someone about what you need;
• Hospice Care and the Medicare Hospice Benefit: what hospice care is, and how it can be paid for through Medicare;
• Hospice Care: A Consumer’s Guide to Selecting a Hospice Program.
"We felt this would be very valuable for consumers," says Thimis. "Once they learn the basics of what a hospice is, they need to know what other questions to ask, what things to look for in a hospice."
The brochures were distributed in August, both to End-of-Life Steering Committees, and on the NHPCO Web site, www.hospiceinfo.org.
The tool kits also included a series of recommended "talking points" for the local meetings. "Depending on the coalition and how active it was, some had series leading up to the Moyers program, as well as during and after," says Thimis. "They included seminars, town halls, and so forth."
After the program aired each night, the NHPCO "blast-faxed" messages of the day to its members and the media to reinforce the earlier messages. "We also wanted to make sure that a uniformly consistent message went out about hospice care," Thimis explains.
Taking it to the local level
The local coalitions also sought to get a head start on enhancing awareness, reports Claire Tehan, MA, vice president of TrinityCare Hospice in Los Angeles. "The first thing we did was really push our local public station this summer to pull interested people together in L.A. Without that push, they would just have run the series," she says. "Hospitals, community groups, other hospice providers, and a couple of nursing homes got in touch with each other to see what was going on. That gave us a good jumpstart; KCET [a local public television station] did not pick up that momentum. The providers did their own thing — which is not unusual."
TrinityCare Hospice held four community forums, one private forum — a board member invited a large group of people to his home — and one at a senior life care community. "A couple of good things came out of these forums," Tehan observes. "One community forum was held in Malibu, which is geographically isolated from L.A., and those who attended were very interested in end-of-life care. We have scheduled a follow-up meeting for November to explore our options, since we serve that area. This is a very well-educated, well-organized group of people who want more for their community. As result of some of the other community forums, a number of local hospitals have picked up the interest and will be sponsoring some ongoing lectures."
The community forums attracted a good mix of consumers and professionals. Tehan spoke with three interested consumers herself. "In all three cases, they were people who potentially needed hospice," she recalls. "In one case I talked with a woman with particularly advanced amyotrophic lateral sclerosis. She and her husband were definitely in need of support and guidance, and received much help at the forum. They had been struggling alone."
In almost all instances there were people at the forums who were or would be in need of hospice, Tehan notes. The forums also reminded her of just how difficult it is for most people to wrestle with the topic. "They resist looking it square in the eye," Tehan says. " Many women in the house meeting said their husbands didn’t want to deal with it, didn’t want to come. The need to avoid it is very strong."
But all of the people who attended the forums "came away with a lot of information, feeling better, and knowing where to go for help," says Tehan.
Benefits are clear
Participants in this wide-ranging awareness effort are already reaping the benefits. "We have four different sites that serve Los Angeles County," says Tehan, "and in the week that followed the series, our volunteer director says we received eight phone calls; that just doesn’t happen. The fact that eight people found their way here saying, I want to get involved’ is very significant. I suspect other programs have had a similar response."
McGrew admits he has not seen evidence that Moyer’s program has been effective, but he has little doubt that it will be — particularly in society at large. "Hopefully, hospices will indirectly benefit, but communities will directly benefit by having a greater understanding of the issues and become engaged with them. We have a death-denying society, so anything that will help people face it is a positive move.
"I know large numbers of people viewed the series," he continues. "I certainly hope that made a difference, but my only concern is we were preaching to the choir. We’ve got to get past the choir in order to get change."
Despite the possibility that the program may not have reached those who need it most, the Moyers series was an incredible opportunity, says Thimis. For the first time people were given a center-stage forum to discuss a difficult topic. "They opened the door; it was a true launching pad for people to talk about hospice care, to start thinking and looking at it," Thimis adds. "With people holding forums the night of the shows or a couple of nights later, we were able use them as an opportunity to educate."
Follow-ups still are taking place, she says. The NHPCO continues to encourage its members to use the brochures produced in conjunction with the program and hold seminars. The NHPCO recently presented the Hospice Month Quilt at the White House, and used the event to promote October as a community education month among its members.
The NHF Web site has become very popular since the series; there have been more than 3,500 hits since Sept. 11. Thimis reports that almost 600 downloads of the consumer guide, 500 of the Medicare hospice benefit brochure, and about 500 of the communicating brochure. The education effort spurred on by the Moyers program is just the beginning of an ongoing effort, Thimis says. "This isn’t just a one-shot deal," she asserts. "We have to use every opportunity and every forum to go out there and educate people."
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