By Not Dead Yet
The National Council on Disability (NCD) has issued the second in a series of reports on Bioethics and Disability.
NCD’s release on the report today [Wednesday] focuses on “a federal examination of the country’s assisted suicide laws and their effect on people with disabilities, finding the laws’ safeguards are ineffective and oversight of abuses and mistakes is absent.”
The Disability Rights Education & Defense Fund (DREDF), which worked in partnership with NCD on the series of reports, summarizes this groundbreaking work:
Despite the growing consensus that disability is a normal part of the human experience, the lives of people with disabilities are routinely devalued in medical decision-making. Negative biases and inaccurate assumptions about disabled people persist. In medical situations, these biases can have serious and even deadly consequences.
Beginning on September 25, the National Council on Disability (NCD) is releasing a series of reports on bioethics and disability. The five reports were developed through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF), which appreciates and acknowledges the valued work of our partners, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law and Not Dead Yet, in creating the series.
Each report examines the status and future of how a variety of key issue areas – including organ donation, assisted suicide laws, genetic testing, systems such as Quality Adjusted Life Years, and assumptions about medical futility – are developing due to technological and scientific advances as well as legal changes and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis is used to examine each topic. Each report includes findings and makes recommendations to lawmakers and policymakers that we hope will ensure that the lives of people with disabilities are valued on an equal and nondiscriminatory basis with all others.
Not Dead Yet specifically consulted on the topics of organ donation, assisted suicide and medical futility.
NCD’s release on today’s assisted suicide report includes the following details, and an example of a seriously mistaken cancer prognosis personally experienced by the NCD Chairman, Neil Romano:
Despite the belief that pain relief is the primary motivation for seeking assisted suicide, in Assisted Suicide Laws and their Danger to People with Disabilities, NCD found that the most prevalent reasons offered by someone requesting assisted suicide are directly related to unmet service and support needs, which NCD urges policy makers respond to through legislative changes and funding.
“Assisted suicide laws are premised on the notion of additional choice for people at the end of their lives, however in practice, they often remove choices when the low-cost option is ending one’s life versus providing treatments to lengthen it or services and supports to improve it,” said NCD Chairman Neil Romano.
Closely examining the experience in Oregon, where the practice has been legal for 20 years, NCD found that the list of conditions eligible for assisted suicide has expanded considerably over time, including many disabilities that, when properly treated, do not result in death, including arthritis, diabetes, and kidney failure.
Assisted Suicide Laws and their Danger to People with Disabilities also notes suicide contagion in states where assisted suicide is legal, as well as a loosening of existing safeguards both in states with legalized assisted suicide and states considering bills to legalize.
In the report, NCD details limitations of purported safeguards of assisted suicide laws, finding:
- Insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths;
- Misdiagnoses of terminal disease can cause frightened patients to hasten their deaths;
- Though fear and depression often drive requests for assisted suicide, referral for psychological evaluation is extremely rare prior to doctors writing lethal prescriptions;
- Financial and emotional pressures can distort patient choice;
- Patients may “doctor shop” limitlessly to find a physician who will obtain a colleague’s concurrence and prescribe a lethal dose
“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” said Mr. Romano. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.”
NCD concludes its research with recommendations, including highlighting the need for:
- Federal research on disability-related risk factors in suicide prevention, as well as on people with disabilities who request assisted suicide and euthanasia;
- Federal regulation requiring non-discrimination in suicide prevention services; and
- Greater federal investment in long-term services and supports.
The NCD report is online at The Danger of Assisted Suicide Laws. The release dates for the other reports in the series are here, with links to the full reports as they become available.