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When they died, both men were in mid-life and had been suffering from the effects of a paralyzing accident for more than 15 years. David Rivlin won court approval in 1989 to take a sedative and have his life-sustaining ventilator disconnected. Buddy Miley was found in a Detroit hotel in late March with a note referring calls to Dr. Jack Kevorkian.
Both of these men were quadriplegic. Neither was terminally ill. And they just may represent the silent majority of Americans seeking physician-assisted suicide. Their miserable quality of life, stemming from disability, seemed a foregone conclusion. But was it? What if the painful lives they chose to end resulted from inadequate health care and not merely from their disabilities?
"We have to look at how badly we have failed these people," says John D. Banja, PhD, associate professor in the department of rehabilitation medicine at Emory University in Atlanta. Patients who are disabled or chronically ill sometimes seek assisted suicide as an alternative to a life that is "not congruent with dignity in any way," he says.
It is not the disability itself that strips these patients of their dignity but rather a health care environment that denies them access to appropriate care and treatment, Banja says.
Yet few in the public or professional arena seem to care, says Kristi L. Kirschner, MD, director of the program in disability ethics at the Rehabilitation Institute of Chicago. When she has attempted to publish or speak on the connection between chronic disability and assisted suicide, "the response is that this is a special-interest issue" not worth much attention, Kirschner says. She contends, however, there is an enormous correlation between chronic suffering and assisted suicide that largely is being ignored.
If the plight of these patients is not addressed, health care ethics professionals and the U.S. Supreme Court, which is grappling with the issue of assisted suicide, may try to create societal changes without appreciating the full extent of the problem, she says. "We must, in fact, take a special interest in the needs of chronically ill and disabled patients, because they are at the heart of the assisted-suicide debate."
One of the arguments in cases such as Rivlin’s is that the patient should not be forced to live a life not "worth living." "This is akin to saying we should put animals out of their misery when they are injured," Kirschner says. "Instead of helping these patients, we are validating their despair. It is a misinterpretation of the golden rule."
The Washington, DC-based Consortium for Citizens with Disabilities Rights Task Force is a group of more than 100 national organizations representing Americans with disabilities. A consortium representative told a congressional panel in early March that lack of access to attendant care and to medical, mental health, and other support services for persons with disabilities and chronic illnesses is a key issue in the assisted-suicide debate.
"Prohibiting people from using federal funds to end their lives is not enough," says Mark Shaffer, a law student working with the consortium to enact public policy changes and an above-the-knee amputee himself. People with disabilities and chronic illness "need public and private assistance so that they can live their lives," he told the House subcommittee on health and the environment.
Kirschner draws a stark contrast between the access to these kinds of services for Rivlin and for people of greater financial means, such as actor Christopher Reeve, who was injured in a horse riding accident. Reeve has been able to fight his disability with a plethora of resources. Rivlin, who severed his spine in a surfing accident and gradually became ventilator-dependent, could not live in his home because he had no access to home health care or attendant services. He also did not have a wheelchair. Instead, he was confined to a nursing home for three years without visitors before he sought the court order to end his life.
"The court said that David was competent to refuse life-sustaining treatment," says Kirschner. "The real tragedy, however, is that no one gave him the option to live."
The congressional subcommittee of the House Energy and Commerce Committee initiated a full House vote banning federal funding for assisted suicide. The measure was approved 398 to 15 in early April. But Shaffer and other advocates for people with disabilities, including some in Congress, say the government’s obligation goes beyond restricting the use of funds: The government should fund alternatives to assisted suicide.
"Any public policy in the area of physician-assisted suicide should include a proposal to fund mental health services and anti-pain services," said Congressman Fortney "Pete" Stark (D-CA) during the House debate. "If we want to help, why do we not ensure that Americans, regardless of income, have access to quality care, have home health so they can live in their communities rather than institutions?" he asked.
Banja says funds must be made available so patients who have had polio, multiple sclerosis, or a spinal cord injury, for example, will have comprehensive rehabilitation.
"Rehabilitation is a small component of the health care picture, so it is easy to overlook or be apathetic to the need," he says. Patients may require comprehensive management of psychotropic medications, an average of more than 20 rehab visits, and coverage for home health. Currently, many patients do not have access to these services.
The consortium asked Congress to fund services, including mental health services and those necessary for basic daily living, for patients with chronic disability. The coverage would be made available to any patient who has been certified by a health care provider as having an irreversible condition, a degenerative condition, a terminal illness, or intractable pain. Patients also must satisfy a means test and be considered at risk for suicide.
Of the nearly 50 people who have sought Kevorkian’s aid to end their lives, more than half are people with disabilities such as spinal cord injuries or degenerative diseases such as multiple sclerosis. These patients were not terminally ill, and Kevorkian has never argued otherwise. He helped them end their lives, he says, to relieve their suffering.
Yet such patients are rarely suicidal if their needs are met, Kirschner says, adding that health care providers can help the chronically disabled significantly by addressing their mental health status. She challenges ethics committee members to make sure their institutions offer patients treatment for depression. Ideally, the professional who provides treatment will have experience in working with patients with disabilities and understand that depression is not a natural reaction to injury that will go away without clinical intervention, she says.
"Patients often need an adjustment period and even grief counseling. They need time to assess how their life has changed." The patient’s ability to feel more in control and less of a burden to family members can eliminate suicidal tendencies, she says.
Kirschner recommends these four steps to meet patients’ overall needs. She says they are readily achievable in all institutions:
• Make sure patients have access to rehabilitative services. Put them in touch with available resources in the community and search out additional professional services outside the area if none is available locally.
• Develop peer support opportunities. Seek the assistance of independent living centers in providing speakers and peer support for patients who are newly disabled.
• Educate physicians about physical reha- bilitation. Develop educational materials and inservices. Most physicians receive little rehabilitation training in medical school.
• Advocate for public policy changes that will help fund better services for the disabled and chronically ill.
"The ethics community may be consumed by more glamorous issues at the expense of these patients," Banja says. As the health care environment focuses even more on cost containment, he fears that access to services for the disabled will become even more difficult.
"Sometimes in medical ethics the justice issues are the hardest to deal with," Kirschner says. "But this is certainly one that can’t be neglected."