Supreme Court decision is only the first step to better care for the dying
Need for improvement admitted; now progress is demanded
When the U.S. Supreme Court handed down its landmark decision on physician-assisted suicide in late June, it signaled much more than the end of a long debate. Rather, the decision represented the beginning of many multidisciplinary and multiprovider efforts to change how people die, say experts who care for the dying.
"We should be glad that the focus can now shift, as it should, to what we can do to help patients and their families," says Ira M. Byock, MD, president of the Gainesville, FL-based American Academy of Hospice and Palliative Medicine.
Rather than advocating a "right to die," Byock says ethics committee members and other health care professionals must "establish a practical right to dying in relative physical comfort" for all patients. "Don’t feel a sense of success because the court upheld the ban on assisted suicide. This will only create another diversion from doing what we need to do address the root causes of this current crisis," he says. Actively work on resolving the crisis in care in your own institution, he challenges. (See suggestions for ethics committees, p. 87.)
In Oregon, where the ballot initiative that passed in 1994 allowing physician-assisted suicide will be recast to the voters this November, the debate and the daily routine at health care institutions hardly are affected by the court ruling, says Susan W. Tolle, MD, director of the Center for Ethics in Healthcare at Oregon Health Sciences University in Portland.
"There is a tremendous pressure in our institution and in this state to change end-of-life care," she explains. "The Supreme Court ruling is not something you hear much about here. The focus, and the pressure, comes from the people in the community. They are dissatisfied with the way dying occurs."
Larry Plutko, system director of theology and ethics for the Seattle-based Providence Health Care System and chairman of Supportive Care of the Dying: A Coalition for Compassionate Care, based in Portland, says, "Most programs and services for those facing life-threatening illness are based on health care providers’ assumptions not the experience of the people involved."
The coalition, comprising six Catholic health care systems nationwide, recently concluded a national study of patient and family attitudes about the dying experience.
"Our findings were, to say the least, quite sobering," says Alicia Super, RN, project coordinator for Supportive Care of the Dying and a pain control specialist at Providence Hospital in Portland. "Individuals and family members led us to conclude that there is a wide gap between the way care should be provided and the way it really is.
"The attention to care of the dying highlighted by the Supreme Court case should serve as a real opportunity for us as care providers," Super says. "We must find a way to develop expertise in caring for the dying patient and show the public and our patients that we can become experts at this."
The Supreme Court ruling was handed down during the national meeting of the Academy of Hospice and Palliative Medicine in Chicago. Byock says the Academy members reacted to the decision by further strengthening their commitment to education and certification. Since the organization began offering certification in palliative medicine just one year ago, more than 200 physicians nationwide have applied and become certified, he says.
Other efforts to change the culture of dying are under way across the country and should serve as models for other institutions, these experts say. (For examples, see Medical Ethics Advisor, July 1996, p. 80; October 1996, pp. 113 and 116; and May 1997, p. 54.)
Bioethics professionals must keep up the pressure for quality comfort care, says Tolle. These experts predict the legislative pressure is far from over. There will be attempts in states to pass assisted suicide measures, they say.
Tolle speculates that the Supreme Court ruling might have a negative effect that is, weaken the pressure to change the current culture. "I worry that when the pressure is off, will the power of what we are seeing now be diminished? Will we [those who are advocating improved care of the dying] have less of an impact?" she asks. Although she remains optimistic, she understands the political culture that plays a pivotal role in the debate.
After the Oregon legislature discussed the universal access for hospice bill, it approved putting Measure 16 back on the ballot in November. "All of a sudden there was less of a sense of urgency for hospice access," she says. Bill 2700 granting hospice access died in the legislature when it ended its 1997 session in early July. A discussion on funding the universal access bill has been frozen since the ballot measure vote, she says.
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