By Diane Coleman
Editor’s note. The following article was written by Diane Coleman, the President and CEO of the disability rights group Not Dead Yet, and published in the New Jersey Star Journal.
Proponents of bills meant to legalize assisted suicide for the terminally ill frequently claim that disability organizations’ opposing views aren’t relevant.
Nevertheless, although people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled.
This is one of many reasons that a perspective from someone who has a disability may offer some insights on this complex issue.
People with disabilities and chronic conditions live on the front lines of the health-care system that serves (and, sadly, often underserves) dying people.
One might view us as the proverbial “canaries in the coal mine” who are alerting others to dangers we see first.
Assisted suicide advocacy organizations paint themselves as “compassionate progressives” fighting for freedom against the “religious right.” That simplistic script ignores inconvenient truths that are all too familiar to disability advocates, such as:
• Predictions that someone will die in six months are often wrong;
• People who want to die usually have treatable depression and/or need better palliative care;
• Pressures to cut health-care costs in the current political climate make this the wrong time to add doctor-prescribed suicide to “treatment” options; and
• Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.
It’s not the proponents’ good intentions but the language and implementation of assisted-suicide laws that lawmakers need to consider.
As one of countless disabled people who have survived a terminal prediction based on a faulty diagnosis, I can’t help but become concerned when the accuracy of a terminal prognosis determines whether someone gets suicide assistance rather than suicide prevention.
The annual Oregon reports, stipulated under that state’s assisted suicide law, themselves show that non-terminal people are getting lethal prescriptions — up to 1,009 days have passed between the request for assisted suicide and death. One of the many things the reports hide is specifically how many lived longer than six months, but we do know that those people were disabled and not terminal when they sought their lethal prescription. We also know that there’s no consequence to the assisting doctors for this or any other mistake in the assisted suicide process.
Proponents also claim that 15 years of data from Oregon show that safeguards to ensure that assisted suicide is voluntary are working.
How would they know? The Oregon reports tell us only what the prescribing doctors indicated were the patients’ reasons for wanting assisted suicide when they checked off one or more of seven reasons on a multiple-choice state government form.
One of the seven reasons, feelings of being a burden on others, was checked in 57 percent of Oregon’s reported assisted suicide cases last year (39 percent over all the reported years).
But there’s no requirement that home care options that could relieve the burden on family caregivers must be disclosed as part of informed consent under the law, much less that these options must be offered or funded.
Although the Oregon reports admit that the state can’t assess compliance with the safeguards, some independent articles find that safeguards failed in individual cases (see, e.g., Hendin and Foley’s “Physician-Assisted Suicide in Oregon: A Medical Perspective,” Michigan Law Review, June 2008).
But the law includes no authority for investigating or enforcing the safeguard provisions, so nothing happens as a result.
Elder abuse is notoriously undetected and under-reported. Sure, some people are safe, but with more than 175,000 estimated reported and unreported elder abuse cases in New Jersey annually, many are not.
The two witnesses who attest to the absence of coercion that the law requires don’t actually have to know the person, and one of them can be an heir. Nothing in the law would stop a family member from suggesting or urging someone to “choose” assisted suicide. Once the lethal drugs are in the home, with no independent witness required, the drugs could be administered with or without consent. Who would know?
When we’re talking about changing public policy that affects the health-care system that we all depend on and the real world of families that are not necessarily all loving and supportive, lawmakers have an obligation to think of everyone, not just those who are safe from the very real risks posed by assisted suicide legislation.
Diane Coleman, J.D., MBA, is president and CEO of Not Dead Yet (notdeadyet.org).