Public awareness in the hands of hospice
Target clinicians, public for palliative care message
The idea that death is simply a stage of life is a difficult concept to grasp for most people. Even more difficult to understand is ending curative efforts in favor of comfort care. It is the perception of giving up that has denied dying patients the palliative care they deserve. So, it becomes incumbent on health care providers to educate the public and teach an acceptance for care that is aimed at addressing physical and emotional pain in the last few weeks of life.
As health care providers begin looking at ways to promote end-of-life care, one thing that has become plainly evident is that hospices are in the best position to promote palliative care to both the public and to other segments of the health care industry.
In 1997, the Robert Wood Johnson Foundation (RWJF) asked providers around the country to examine end-of-life issues through its $12 million initiative, Excellence in End-of-Life Care.
As providers begin looking at how end-of-life care is being delivered and formulate how to better deliver the palliative care message, hospices are in the forefront, says Lisa Spoden, MS, executive director of the Kentucky Association of Hospices in Pikeville, KY. But hospices will face competition in the future as innovative ways to provide palliative care outside hospice begin to emerge, such as palliative care units in hospitals.
"If we can influence politicians, clinicians, and the public, the result will be better care during the dying process with unique opportunities in various settings. Hospices are the premier way to deal with the dying," Spoden says.
Although hospices are in a position to promote palliative care because that is what they do, their collective voice is muted by the fact that most hospices are small organizations with few resources for public campaigns.
But the efforts by RWJF-funded health care providers, which include hospice providers, to educate both the public and other segments of the health care industry, provide a glimpse at what can be done to promote palliative care and improve end-of-life care.
Kentucky United to Improve End-of-Life Care is one of 15 statewide coalitions being funded by the RWJF initiative. Its approach offers examples of how hospices can inform and educate in order to increase public awareness and ensure that hospice not only grow in use, but also continue to be the premier setting for end-of-life care.
"There is a general lack of knowledge about treating chronic pain," says Cynthia Keeney, RN, executive director of the Center for Nursing and Allied Health Professionals at the Kentucky Hospital Association, which is overseeing the Kentucky project. "Unless you have an informed public, you are not going to change anything."
Its three-year strategy includes identifying problems in end-of-life care and formulating solutions:
• Public forums. The public will be asked to share its experiences, both good and bad. The public testimony will be videotaped so that the coalition can show it to health care providers and raise awareness of problems within end-of life care.
• Pain management guidelines. A task force appointed by the coalition will develop pain management guidelines and develop pain management curriculum to be used in two state medical schools and four nursing programs. The curriculum is designed to help educate a new crop of health care professionals in the value of palliative care.
• Continuing education. The coalition will develop a continuing education program on palliative care and interdisciplinary pain management. This is designed to address working clinicians that were trained in an era when greater emphasis was placed on curative techniques.
• Toll-free help line for clinicians. A help line will be established to encourage telephone consultation for clinicians who are experiencing difficulty managing their patient’s symptoms, such as nausea and pain. A clinician will have access to a palliative care specialist to answer pain management questions.
• Long-term care facility workshops. The coalition will develop educational workshops for residents and staff at long-term care facilities. One workshop will be designed specifically for residents and their families. The resident/family workshop will include an educational program, but more importantly, it will include an open discussion of end-of-life issues. Residents will discuss advance care planning issues and be given assistance in developing a directive for the kind of care they want to receive during the final stage of their life. Participants and their families will be instructed to follow up with their area hospice for additional information.
• Community workshops. In addition to the nursing home workshops, there will also be community workshops targeting a variety of groups. Like the long-term care workshops, the community workshops will also facilitate an open discussion about end-of-life issues and advance care planning.
The above strategies represent elaborate, well-planned efforts to effect public opinion and behavior. If the programs are successful, it will be in large part to the concerted effort of the community of providers that contributed to its implementation.
Yet, for hospices whose resources are limited, the efforts of Kentucky providers and other coalitions in the RWJF initiative provide at least an outline for hospices who want to improve palliative care awareness in their own communities.
To begin, look at the underlying themes in the above strategies — education and dialogue. Then look at the targeted audiences. On the clinical side, there is the next generation of doctors and nurses and the experienced doctors and nurses. In the community, there are the legions of elderly who may be beginning to contemplate their own mortality and their families who want to make sure their loved ones receive the best care possible.
The challenges to raising awareness that the Kentucky coalition faces are not much different from communities around the country. Palliative care suffers from near anonymity among clinicians whose training has focused more on curing disease than treating symptoms and among the public that embraces heroic attempts to overcome illness and disease.
"We need to convince people that palliative care is not giving up," says Keeney. "We need to teach clinicians and the general public that we can treat patients with the same intensity they were given during the curative stage."
Hospices looking to raise awareness about palliative care on a smaller scale should keep in mind these underlying themes and target similar audiences. Approach key targets in their own community in the following ways:
• Physicians. One of the hurdles hospices face in getting physicians to refer patients earlier is the perception that they would be letting go. Hospices need to get across the message that hospice care is still physician directed. Perhaps physicians in a hospice provider’s community are unaware of hospice’s physician-directed interdisciplinary team approach. Hospices need to explain to physicians who have referral potential that the hospice team approach calls for the patient’s physician to take a lead role and work with the hospice medical director, nurses, social workers, counselors or chaplains, and other needed health care professionals.
Unlike those involved in the RWJF initiative, programs designed to reach physicians will be small, even informal. No matter how it is done, Keeney says the program should be structured so that it can be repeated without variation. She suggests hospices start with hospital medical staff meetings to educate physicians about hospice and palliative care. Another educational devise is a newsletter aimed at physicians that explains the principles of hospice care, including the value of palliative care.
The Kentucky project stresses dialogue between physicians and end-of-life care promoters, either through educational efforts such as pain management guidelines or a toll-free hotline. While a single hospice cannot influence the curriculum of a medical school or nursing school, it can influence the habits of the clinicians it works with.
• Community. If the idea behind educating physicians is to improve the number of referrals, then hospices would want to educate the public so it will consider hospice care when it becomes appropriate.
Hospices can accomplish this by visiting various groups within their community, much the same way the Kentucky coalition plans to reach 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.
Keeney also suggests talking to a population that has had little exposure to death and dying — teenagers. Religion classes in churches and schools are ideal platforms for end-of-life discussions, she says.
"Teenagers love end-of-life discussions," Keeney says. "Because teenagers think they are immortal, they aren’t afraid to talk about death, while elderly people living in a nursing home don’t like to talk about it because it can be depressing. Talking with teenagers are some of the most spirited discussions I’ve ever had."
The end result is that teenagers share the discussion with their parents and get them thinking about end-of-life issues and how they want their parents to be treated.
No matter the group, hospice supporters should try to facilitate end-of-life discussions. For instance, the audience should be encouraged to talk about their experiences with the death 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 begin thinking 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.
• Managed care organizations (MCOs). As managed care becomes more prevalent in some markets, contracting with MCOs becomes more important. Like physicians, nurses, and the general public, MCOs need a dose of education as well.
However, the message to MCOs will be slightly different than the two previous audiences. Hospices will want to stress their place and value in the health care continuum, says Spoden.
"Managed care is beginning to embrace hospice," Spoden says. "And MCOs are in position to make sure physicians are keeping palliative care in mind."
Like the Kentucky initiative, the goal of hospices should be to raise awareness in their own communities about palliative care and hospice care in general.
"We need to influence politics, clinicians, and the public, says Spoden. "The result will be the improvement of the dying process."
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