A state task force working on thorny issues of decision-making and care for dying patients will hear tomorrow from a group which feels all too ignored on such matters: people with disabilities.

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People with mental or physical impairments and those who advocate for them say a history of feeling their lives were devalued by the medical community made them all the more alarmed at a June symposium of the Task Force for Quality at the End of Life in Pennsylvania.

The daylong session attended by government officials, health care professionals and others analyzing end-of-life issues covered such matters as living wills, health care decision-making, hospice and palliative care without acknowledging special problems of people with disabilities, representatives of the latter say. Those concerns include access to equitable care, perceptions by others that disabled people's lives are less valuable, and a lack of self-determination in planning their treatment.

Representatives of Arc of Pennsylvania, Centers for Independent Living and other groups pressed for more involvement in the task force planning, and they will present recommendations to the 56-member task force at its meeting tomorrow. Underlying their concerns is a sense that physicians, relatives and others would decide to end medical treatment of a disabled person more hastily than that person truly would want due to some skewed judgment that their life is lacking in quality.

"People don't see our lives as being as valuable as everybody else's," asserted Sandi Weber, a staff member of the Three Rivers Center for Independent Living who has spina bifida. When ill in hospital beds, "we leak and we drool and we're all those things and we just cost too much, so it's just easier to let life supports go."

The concerns are being raised at a time when national reports and state end-of-life reform advocates have focused on laws and practices enabling terminally ill people to cease painful and intrusive life-preserving treatment, if that's their wish. That issue is all the more visible in the wake of the prolonged and controversial death of Terri Schiavo after family members debated her artificial life support.

The task force report, due in January, and the disability movement's concerns also come as state lawmakers, the Rendell administration and interest groups revisit legislation dealing with end-of-life issues which was vetoed by the governor a year ago.

The measure, sponsored by Sen. Stewart Greenleaf, R-Montgomery, was intended as an overhaul of Pennsylvania's advanced directive statutes covering health care decisions for incapacitated people. Medical groups convinced Gov. Ed Rendell, however, that the bill could make it too hard for family members to cease a dying relative's life support unless the patient specifically authorized a surrogate to do so in a power of attorney document.

Most people neglect to fill out such paperwork, which could immobilize hospitals and long-term-care institutions and require them to keep people alive on ventilators indefinitely, said Dr. Chris Hughes, a St. Clair Hospital intensive care doctor who is the Pennsylvania Medical Society's spokesman on the topic. That would be worse than current practice, he said, in which physicians are guided by families on late-life decisions, even if no law specifically tells them how to do so.

Though they haven't weighed in specifically on any possible adjustments to Mr. Greenleaf's new version of the legislation, which the Rendell administration is expected to propose, activists for both the mentally and physically disabled worry about how their lives' quality is viewed by physicians and relatives.

Dr. Christopher Gorton, an Arc of Pennsylvania board member who was former medical director of the state's Office of Mental Retardation, said he'd heard reluctant physicians wonder aloud, "What are we saving here?" when reviewing the conditions of critically ill patients with retardation.

"That's happened more than once," he said.

It has come up as well, disabled people say, in denial of transplant operations to people with impairments, or more emphasis hospitals might give to having them fill out do-not-resuscitate orders before undergoing medical procedures, when other patients might not be asked.

Among the recommendations disabilities advocates plan to make to the task force, based on a meeting they held three weeks ago, is that hospitals provide a staff member to assist patients, families and physicians on special issues related to disabilities and late-life care decisions. They want better training of health professionals on disabilities issues, and protection that keeps "quality-of-life" perceptions from entering into life-and-death decisions about a disabled person's care.

On the other hand, they want disabled people to have the same rights to make their own life-endangering decisions as other people to avoid certain care.

Dr. Alan Meisel, director of the University of Pittsburgh's Center for Bioethics and Health Law, said the difficulty is recognizing that disabled people must receive better treatment and protection than they sometimes have in the past, while avoiding laws and policies which are detrimental to other patients who want the leeway to end their own lives peacefully.

"Obviously, we don't want to take away treatment from people who want it, but we also don't want to provide treatment to people who feel they lived a full life and feel keeping themselves alive may be a sentence to severe suffering for their remaining weeks or days," Dr. Meisel said. "How you craft a law that accommodates both positions here can be pretty tricky."