Handicapped Rights Activists Condemn Right-to-Die Law
published in the National Catholic Register, 1999
This text is the author's copy and may vary slightly from the publisher's copy.
Proponents of Oregon's eighteen-month-old physician-assisted suicide (PAS) act say that disabled people have nothing to fear from it. According to the law, only patients with terminal illnesses who have six months or less to live would be eligible to obtain a lethal prescription. "For the most part, disabled people wouldn't have access to the law anyway," says Hannah Davidson, director of Oregon Death With Dignity (ODWD).
But to some people with disabilities, the law and those who support it - including those who have taken advantage of it - betray a bias against people with disabilities. Disability activists worry that this bias will translate into reduced care for those with disabilities. Even more frightening, large loopholes in the law give no guarantee that it won't be used to legally kill off those with disabilities who are considered burdensome by their families, doctors, or health care providers.
The Oregon Health Association's first year report on PAS stated, "The choice of physician-assisted suicide was most strongly associated with concerns about loss of autonomy and personal control of bodily functions."
This is highly disturbing to Rick Burger, a disability-rights activist from Portland Oregon, who himself is disabled. People who are disabled live daily with the kind of problems the fifteen suicide victims died to avoid. "We are creating a situation where society is saying we're better off dead than disabled."
Ms. Davidson of ODWD disagrees. "That's not at all the attitude of the doctors or the law." She chuckles. "And there won't be any danger of disabled people being abused by this law, not as long as we have all these advocates out there."
She affirms that most of those who ended their lives wanted to avoid loss of bodily functions. "We knew that it was likely to be the case. These people who used the option had a history of being in control of their lives. This wasn't something new that they thought about when they got ill. This is a lifestyle."
She goes on to say, "Some of our supporters are the most life-loving people I've met and I envy them. These people are truly living their lives. I've gained a lot from knowing them, both the people who support this option and those who have been in the process of thinking about the ending of their lives."
Diane Coleman, president of the Illinois group Not Dead Yet, is not impressed. "What is the indignity that the proponents are trying to avoid? What is it that they fear so much that they would prefer death? It isn't pain. It's disability. Ask them to describe it. They describe incontinence, using a wheelchair, needing help going to the bathroom. These are the indignities they would rather die than face. We find them to be insulting from our point of view. They're saying, 'I don't want to be like you. I'd rather be dead.' If you need assistance -- something the aging and disability community service has been fighting for - that's indignity."
It's also an erroneous idea, she says, that loss of bodily movement means loss of control. "Many people on my staff need assistance - including the ever-feared 'someone to wipe their butt.' But they lead very dignified lives. They need someone to help them to dress, to go to the bathroom. It's like having a gardener or a cook. Yes, it's more intimate. Yes, it takes more skill and understanding to manage those services, but there are centers for independent living like our own that can guide people in how to do that effectively. To equate this with indignity shows a very sad lack of understanding, and fear or contempt for disability."
Ms. Davidson objects, "But these people are terminally ill and are going to die within six months. They aren't learning to live with this. It's the final phase of their life."
This reasoning doesn't persuade Mr. Burger. "If it's not worth living with for six months, it's not worth living with for more than six months. It screams to me that there's definitely a anti-disabled bias to this attitude."
Ms. Davidson also asserts, "We know disabled people who support this option, including people with MS and progressive diseases, some who are quadriplegics. Probably same percentage of people with disabilities support this option as do people in the rest of the population. The percentage is probably really close." She didn't know of any surveys that she could cite to support this figure.
In response, Mr. Burger says, "Many people with disabilities who support this act don't realize what this means. There will be more effects in managed health care as time goes on."
Health care endangered?
Mr. Burger says that he and Not Dead Yet are watching the health care system. He himself benefits from managed health care, "but I'm on Providence health plan, which is managed by the Sisters of Providence, and I'm pretty confident they won't be pressuring me to commit suicide. But not all disabled people are so lucky."
"One thing that frightens me the most is that we are getting approaching a crisis point in our in-home program in Oregon," which enables people with disabilities to live alone or in group homes with live-in attendants. The salaries of these attendants "have not kept pace with the salaries in the fast food business, let alone those in the health professions." The result is a difficulty in retaining staff in the program. Oregon has a reputation for being a leader in access to community-based care. But if the program disappears, "that also, in my opinion, will lead to the slippery slope."
Coleman, Burger, and other people living with disabilities worry about threats by the Oregon health care system to eliminate or severely limit the services available to the elderly and disabled. Like other euthanasia opponents, Ms. Coleman sees a strong conflict of interest in the state offering to pay to end someone's life. Many disabled and elderly people benefit from the state's health plan, which now covers PAS.
Although the state requires doctors to tell their patients about all their options when discussing suicide with them, "But guess what? They won't pay for them," Ms. Coleman says. "For instance, the state won't pay for something like community and home based service, which can make their lives much easier. But chances are they will pay for suicide."
Ms. Coleman says the real issue for many dying and disabled people is being a financial burden to their families. Again, home and community based services can offer a viable solution. "If families have to absorb all the costs, it does become prohibitive."
These kind of services are something that the elderly and disabled communities have been fighting for for a long time. But she says the euthanasia movement isn't interested in providing these kind of options for people. She cites a privately-published book by Derek Humphrey - one that was given out only to those who support the Hemlock Foundation, in which Humphrey states that one in three people going into nursing home would prefer to be dead "so we should allow that, and then a cost saving measure would be in place."
Like others, Ms. Colman finds the Oregon law to be poorly written with too many loopholes for abuses. "The so-called safeguards in this law need to be examined for the empty and meaningless provisions that they are. The fact that these things were developed by lawyers means that the safeguards are designed not to work. The only safeguard is the immunity to participants in the killing. Everything else is simply designed to confuse the typical individual reader, member of the public, legislature."
But Ms. Davidson thinks it would be very hard to abuse this law. "There are safeguards - You have to get two doctors to risk their professions and testify that the patient is not under some kind of duress from the family to end her life. The physicians who participate in this talk to the families. They would have to make sure that the patient wasn't being pressured. You'd have to get two witnesses to say she wasn't being pressured. You'd have to get a minimum of four people - two doctors and two witnesses -- to lie and have two requests plus a request in writing from the patient herself. If you're going to kill your wife for her money, there are easier ways to do it."
When asked how physicians would be "risking their professions," she explains, "They'd have to say they believe that all of the safeguards have been met. They would be lying and risking their reputation."
Again, Ms. Coleman is not impressed. She says the law assures participating doctors that they are covered by a "good faith standard of mental culpability." In other words, "If they believe in good faith that they have complied with terms of the law, then they are safe. You can't prove they can't believe they didn't comply."
"There are no enforcement provisions whatsoever. It's virtually impossible for someone to be prosecuted under this law." That doesn't send a comforting message to people with disabilities, she says. Ms. Davidson of ODWD did not respond to this, except to say she thought such a situation was unlikely to occur.
Dr. William Toffler, an Oregon physician and member of Physicians for Compassionate Care, doesn't think that disabled people are paranoid to be worried by this law. He said that evidence in national and international cases shows that disabled people are more clearly pressured to end their lives, especially if that option is available. There is no space on the suicide report forms that Oregon physicians are asked to file with the state to check and cross check data like this. "To think that Oregon is immune from these realities is a remarkable leap of faith."
And Ms. Coleman points out the vocal scorn that some euthanasia proponents have for disabled people. "Janet Good and Kevorkian speak with words that are full of contempt. For instance, Kevorkian has said on occasion, 'I'll respond to my critics after they have strapped themselves into a wheelchair for 72 hours and had to use a catheter ….' To us, these words are no different than racial slurs."
Speaking of Kevorkian's jailing, she said, "This time, we were there and called for the equal protection of the law and we got it." But it's not so certain that the disabled will fare as well against Kevorkians in Oregon, given the climate.
She says, "The euthanasia movement is proposing that people be treated differently because of their health. That's discrimination. Deadly discrimination. You can't undo this kind of discrimination. Once you've killed someone, you can't reverse what you've done."
Doman writes from Front Royal, VA. The national office of Not Dead Yet can be reached at Progress Center for Independent Living, 7521 Madison Street, Forest Park, IL 60130, phone 708-209-1500 or at www.notdeadyet.org.
copyright Regina Doman, 1999. This document is available for republishing only after the author's permission has been obtained. Click the top button for an email link to the author.