Agenda for improving care shifts to the states
Agenda for improving care shifts to the states
Initiatives aimed at achieving consensus
With its high-profile decision last June to affirm the constitutionality of state bans on physician-assisted suicide, the U.S. Supreme Court returned the controversial issue back to the laboratory of the states. To date, only one state (Oregon) has actually passed a law to legalize assisted suicide.
But the issue of legalization only directly affects a minority of the terminally ill. For a much larger number, issues of improving care at the end of life, such as better pain management, improved communication with health professionals, and enhanced medical decision-making would have a greater impact on the quality of their lives.
A number of state commissions, legislative initiatives, and private groups are now answering the call by trying to pursue the larger issues of improving end-of-life care at the state and regional level. Many of these initiatives have explicitly steered clear of the highly polarized assisted-suicide debate, and focus instead on areas where achieving consensus might come easier.
Hospices in various states have often played important roles in these efforts. But the hospice industry’s continued participation is essential in order to share its experience in successfully managing the care of dying patients. There are also benefits to be gained from increased awareness of hospice care and improved access to hospice services for greater numbers of dying patients.
In Maine, for example, the Coalition for Dialogue on Death and Dying is sponsored by Hospice of Midcoast Maine, a volunteer-intensive nonprofit agency in Brunswick. This project grew out of the hospice’s exploration of ways to increase its outreach to the community. It was funded with a grant from the New York-based Project on Death in America to launch an end-of-life dialogue in 14 central coast communities in Maine, explains coalition director Michael Murphy, PhD.
This community dialogue has been built on interviews with dying patients and their families, focus group sessions in a variety of settings, symposiums and educational events, and other formal efforts to spark community discussion around attitudes and values. The project also is identifying barriers to optimal care and new approaches for overcoming them. "We found the obvious problems, such as inadequate professional education and real isolation and lack of support experienced by dying patients," Murphy says. "We’re now writing a call to action what kinds of things need to be done as well as a Compact for Palliative Care,’" which local health providers will be asked to endorse. "But just the fact of paying attention to these issues makes things happen.
"Hospice can be a major player in the changes that need to be made in the wider community," through counseling, volunteer training, and other forms of community outreach, Murphy says. "Hospice can play a wide role; it’s wide open."
The Robert Wood Johnson Foundation of Princeton, NJ, is planning a new national philanthropic initiative to encourage regional and state end-of-life initiatives, following the lead of the Missoula Demonstration Project, a 15-year dialogue aimed at improving end-of-life care and measuring the results in that closely-knit Montana community. The foundation’s commitment in this area was announced by executive vice president Lewis G. Sandy, MD, at its Last Acts conference in Washington, DC, late last year.
Clarifying issues around treatment of pain
Sandy said the foundation was considering ways to replicate Last Acts’ coalition activities (see Hospice Management Advisor, January 1998, pp. 13-14) at the state and regional level, and to make several million dollars in grants available to underwrite such efforts. The call for proposals had not yet been released at press time, nor were other details forthcoming from the foundation.
The National Conference of State Legislatures (NCSL) also recognized the emergence of this trend at the state level with a panel discussion devoted to "Expanding Options for Care at the End of Life" at its December symposium in Scottsdale, AZ. In the past year, a number of states have considered legislative measures to clarify that prescribing medication to treat pain is not the same as assisted suicide, even if its secondary effect does hasten death. Others have explored issues of chronic pain management or affirmed the right of physicians to prescribe controlled substances for the relief of intractable pain.
At least five states Louisiana, New Jersey, Oregon, Tennessee, and Virginia passed laws aimed at giving pain management issues further study. South Dakota adopted a resolution urging the Board of Regents at the state’s medical school to make hospice care and pain management a part of the medical school curriculum, according to a Dec. 31, 1997, report on assisted suicide and end-of-life issues by Marla Rothouse, Esq., for NCSL’s Health Policy Tracking Service.
State commissions have been established in recent months in Arizona, Hawaii, Illinois, and New York to explore the range of end-of-life issues, often with the involvement of local hospice leaders. The Arizona Governor’s Commission on Aging and the End of Life was convened by Gov. Fife Symington last July, following a hard-hitting local newspaper series on inadequacies in long-term care.
This 12-member commission, including Susan Goldwater, executive director of Phoenix-based Hospice of the Valley, issued its recommendations in early January. One of these recommendations calls on the state’s medical, hospital, and nursing associations to learn more about the care provided by hospices and to "make the education of the public regarding hospice care a priority for their organization(s)."
In Maryland, the Attorney General’s office, in cooperation with the Bioethics Institute at Johns Hopkins University in Baltimore, has launched a Project on Care at the End of Life. Its first step was to solicit an array of perspectives and recommendations on the problems from a cross-section of public and professional sources. An advisory board is now considering over 50 ideas gathered in this way, many of them focused on current state laws in such areas as professional licensing, disciplining, and criminal investigations of health care providers; facility licensure; regulation and reimbursement; Medicaid and insurance regulation; and tort actions.
California explores legislative solutions
In California, Assemblywoman Carole Migden (D-San Francisco), chair of the Assembly Appro priations Committee, last fall appointed a Select Committee on Palliative Care, which she chairs. Hearings were held in November, and more recently committee members’ staff met with representatives from the California State Hospice Association (CSHA) to explore legislative solutions to the problems faced by the terminally ill.
Among the areas being considered are a bill to create a high-level legislative end-of-life task force to research, review, and bring recommendations back to the legislature on barriers to quality care at the end of life, reports CSHA executive director Margaret Clausen, CAE. Another proposal would amend or eliminate the state’s current triplicate narcotic prescribing system, which is viewed as a barrier to physicians prescribing pain medications. CSHA also convened a recent meeting of representatives from the state’s medical, nursing, hospital, home care, and pharmacy associations, among others, to encourage their support on these issues. Public attention to "physician-assisted suicide has really created an opportunity for hospice, and we need to take advantage of it," Clausen says.
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