Journey’s End continues to promote EOL care
Project educates public, providers
Selling the notion of palliative care to the public, including health care providers, may result in increased awareness about end-of-life care. That’s the hope, at least. Certainly, it’s been no easy task given how little end-of-life training physicians and nurses receive in school and post-graduation, coupled with a death-fearing culture that is reluctant to talk about dying until it’s too late for the patient to realize the full benefit of hospice care.
In 1999, The Robert Wood Johnson Foundation handed out $12 million in grants to state coalitions that endeavored to improve end-of-life care. Since then, Hospice Management Advisor has followed the progress of one of the grantees, Journey’s End, a coalition of Kentucky providers that has spent more than two years trying to raise public and provider awareness about palliative and end-of-life care. Journey’s End received $375,000 to implement programs that would help improve end-of-life care in 1999 and is in its last year of RWJ’s Community-State Partnership to Improve End-of-Life Care.
Like other state coalitions, what is learned from Kentucky’s community-specific approaches will stand as a proving ground for theories about improving end-of-life care that had gone untested for years.
"We believe it’s been working," says Jennifer Scharfenberger, MPA, project coordinator for Journey’s End. "Our shining success has been EPEC [Education for Physicians on End of Life Care]; we’ve trained more people than we actually planned for."
Journey’s End’s had originally planned to use EPEC, a program developed by the American Medical Association, to train 120 people by this point in their program; however, they’ve trained 144 physicians, nurses, and social workers in all. The real success will only become apparent over time as these EPEC-trained providers, who have agreed to train others, pass along their knowledge to their colleagues in various settings, such as grand rounds and inservices.
EPEC represents only a portion of the coalition’s strategy, which includes:
• Public forums. At the start of the program, a series of public forums were held in which people were asked to share their experiences with end-of-life care, both good and bad. The public testimony was videotaped so the coalition could show consumer testimonies to health care providers in hopes of highlighting problems patients and families face and inspiring providers to make necessary changes.
"We saw every possible scenario imaginable," says Scharfenberger. "People told about loved ones who experienced a good death, where they got to hold their hands or sing to them as their loved ones passed away; and there were others who were frustrated."
Forums provided catharsis for participants
In addition to the forums’ value in showing providers the good and bad sides of end-of-life care, they also provided a cathartic experience for many of those who participated. "What we did not realize was the service we gave those people," Scharfenberger says. "Many of them stayed after the forum was over to share their experiences."
In educating physicians about the problems in end-of-life care, hospices hope to increase the number of referrals. And by simultaneously affecting public attitudes regarding end-of-life care, hospices are betting consumers will act to change physician behavior as well.
Experts say hospices can accomplish this by visiting various groups within their community, in much the same way the Kentucky coalition has reached out to the public. Hospice leaders should identify groups in their community that would benefit from a presentation about hospice, such as nursing homes, community centers for the elderly, or local chapters of the American Association of Retired Persons.
No matter the group, hospice supporters should try to facilitate end-of-life discussions. For instance, audience members should be encouraged to talk about their experiences with the deaths of friends and relatives and their impression of how clinicians treated them. This not only gets the audience to think about issues they haven’t considered, but it also give providers a glimpse of the public’s impression of end-of-life care.
As people begin to contemplate end-of-life care, hospices should encourage the audience to think about advanced care planning and offer further assistance in establishing a statement for how they want to be treated in the last few weeks of their lives.
Providers can use toll-free help line
• Resource network. Journey’s End developed a variety of resources where providers and the public can go for information. The network included a toll-free help line for physicians and nurses. Providers are encouraged to seek telephone consultation when they are having difficulty managing a patient’s symptoms, such as nausea and pain.
In addition, Journey’s End launched its own web site, published a quarterly newsletter, and listed a directory of EPEC trainers and palliative care experts.
• Long-term-care facility workshops. Journey’s End developed educational workshops for residents and staff at long-term care facilities. One workshop was designed specifically for residents and their families. The resident/family workshop included an educational program where topics such as advance care planning were discussed.
This year, Journey’s End rolled out a long-term-care facility pilot program in five facilities in which the facilities integrate specific pain management policies and procedures. For example, each facility will be required to measure pain as routinely as it measures other vital signs, such as blood pressure. To track progress, each facility will have to submit 10 randomly selected charts for audit per quarter.
The breadth and scope of the Kentucky program is a function of the coalition’s commitment to the project, says Scharfenberger. The model itself may have as much to do with the success of the program as the information that was disseminated. Journey’s End utilized its coalition members to disseminate information, allowing the program to avoid excessive marketing costs. For example, upcoming EPEC programs were promoted in newsletters produced by medical associations, hospices, and others.
Coalition members trained more than 5,000 people in end-of-life care through their own programs, which reached both clinicians and the public. "I can’t say that this is the best model, because it’s the only one I know," Scharfenberger says. "I can say that it has been an effective model. Our coalition is so diverse that we have had a wide range of help from members."
The challenges faced by the Kentucky coalition are similar to challenges faced by providers around the country. Palliative care still suffers from near-invisibility among clinicians whose training has focused more on curing disease than treating symptoms and among a public that embraces heroic attempts to overcome illness and disease.
Scharfenberger says Journey’s End’s approach is making headway in the battle to increase awareness, but admits there are other avenues for her project and others to explore. The most obvious of them all, she says, is focusing more on the general public in the hope that public pressure can lead to changes in how clinicians, policy-makers, and payers approach end-of-life care.
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