National effort seeks to change attitudes, beliefs on how we die
You can join efforts to reform the course of dying
The research is over; the platitudes are superfluous. It is time for action. After years of advance directives, do-not-resuscitate orders, patient discussion forums, and even ethics committee consultations, the simple fact remains that millions of our mothers, fathers, grandparents, and children die in a way that belies the way they lived.
Now a group of more than 70 professional organizations spearheaded by the Robert Wood Johnson Foundation is urgently calling for major efforts to systematically change the course of dying.
"This is not just [something we are talking about for] a moment. It is a specific call to action," says Steven A. Schroeder, MD, president of the Princeton, NJ-based foundation and a practicing physician and medical school faculty member. "This is the biggest thing that the AMA has done in the last 50 years," Lonnie R. Bristow, MD, past president of the American Medical Association told a congressional panel in early March.
The foundation is sponsoring three separate programs involving end-of-life care called "Last Acts." It is a multidisciplinary and multifaceted approach that aims to change the attitudes and cultural beliefs of both the health care field and the public at large.
Besides Last Acts, other programs include a train-the-trainers effort aimed at physicians, residents, and medical students, and a new national program office for grant funding on end-of-life care. (Watch the next issue of Medical Ethics Advisor for more information on these programs.)
"It is important to have a coordinated, national effort to keep attention focused on the key areas needing change," explains Colleen Scanlon, RN, JD, director of the Center for Ethics and Human Rights at the American Nurses Association in Washington, DC. Scanlon is co-chairing one of six Last Acts task forces that will work on developing initiatives in the key areas.
These task forces include the following:
• Palliative care.
This task force will focus on education about palliative care as it currently exists and ways to improve and implement it more widely. Specific initiatives will include the following measures:
Require medical residents and nursing students to complete a rotation through a hospice.
Work with textbook editors to completely revise standard textbooks for physician, nursing, and other health care professional training. Ideally, revised textbooks will include chapters on the natural culmination of life; about death as a completion of medical care, not a failure; about hands-on communication with patients and family members; and about how to help patients and families with a host of psychosocial, spiritual, and cultural needs.
Major medical schools across the country will convene in Philadelphia in mid-May to discuss incorporating these changes into medical school curriculum and residency training programs, says Kathleen M. Foley, MD, co-chief of pain and palliative care services at Memorial Sloan-Kettering Cancer Center in New York City.
"Data suggest that physicians are inadequately trained to assess and manage the multifactorial symptoms commonly associated with terminal illness," says Foley, who directs the Project on Death in America, another multifaceted program aimed at changing our cultural view of death. The average physician’s lack of training in the care of the dying is evident in practice, she contends.
• Financing.
This task force will look at payment issues involving end-of-life services. Specifically, the goal is to make these changes:
Public and private health insurers must reimburse providers adequately for palliative care and counseling for dying patients in all health care settings.
Managed care organizations must include palliative care and hospice services in their plans without capitating the amount provided for patients.
Employers must seek out insurers and managed care organizations that cover these services.
Managers must develop formal mechanisms for defining palliative care services to facilitate reimbursement.
• Families.
This task force will focus on the needs of families, including the elderly and their adult caregivers, children, providers of elder services, and others.
• Workplace.
This task force will address the needs and concerns of employers through which the majority of health care benefits are provided.
• Service providers.
This task force will examine institutional (hospital, intensive care unit, nursing home, and home health) cultures and policies that affect care at the end of life. The group will identify both barriers to improving care of the dying as well as successful practices.
• Provider education.
This task force will focus on strengthening provider education by emphasizing that special skills are required to treat dying patients. Goals for this group, working in collaboration with the palliative care task force and other groups including professional organizations, will include:
Establishingf standards of palliative care for all health care professionals, including medicine, nursing, social work, and pastoral care.
Making pain management and other symptom control measures an integral part of the patient discharge process.
Instituting a system to assess and strengthen health care professionals’ communication skills during their clinical training.
A primary, overlapping goal of Last Acts is to create a movement toward palliative care. But what exactly is that? "When we say palliative care, we are not simply talking about pain and symptom management and ethical practice," Ira M. Byock, MD, president of the American Academy of Hospice and Palliative Medicine tells MEA.
"A fundamental tenet of palliative medicine is that dying is a part of living and that in the dying process there is the capacity to find a positive experience," says Byock.
Defining the essentials
Byock is a member of the Last Acts palliative care task force. It has had several preliminary discussions and Byock says he hopes the first priority of the task force will be to reinforce and define palliative care.
"We always assume that the quality of life of a terminally ill patient is poor," he asserts. "It is an interesting assumption but one that has [been] shown to be inaccurate," he notes.
Only when the medical system moves away from a problem-solving approach will its professionals understand the meaning of good palliative medicine, says Byock.
Scanlon, a co-convener of the palliative care task force, maintains that nurses may be the key to finding this essential ingredient. Nurses are the mainstay of good care for dying patients and often feel powerless to help patients and families deal with the social and emotional impact of an illness or disease process, she contends.
"One of the biggest changes we have to make is assuring that the kind of care these patients need and deserve is paid for," says Scanlon. "But it is the nursing profession that can start defining the key question of what kind of care we want," she says. "Nurses must begin to state what are the musts, the nice-to-dos, and the non-negotiables. After we determine what patients have a right to demand, then we should help them demand payment for it."
Scanlon says nurses know the value of the interdisciplinary team model of care. She urges nurses throughout the country to join other health care professionals in determining the standards of good palliative care. Nurses can become involved in the palliative care task force initiatives as well as other initiatives.
Ethics committee members can join in these efforts in a variety of ways. On a basic level, you can engage patients and family members, as well as other health care professionals, in an open dialogue. (See suggestions for getting involved, below.)
A major goal of Last Acts is to raise public awareness about the problem. "The American public needs this discussion but we need to give them permission to have it," says Foley. "The last act of life is death. We all need to recognize and deal with that basic fact. The topic of death and dying needs to be a public discourse, not a purely medical discussion."
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