By James T. Brett
Compassionate medical care and end of life considerations are some of the most complex and difficult issues facing families, and society in general. It is a reality that may only intensify against a backdrop of an aging population.
In the United States, the number of older individuals outpaces younger generations. By 2030, one in five Americans will be 65 years old, and the population of those 65 and older is projected to nearly double by 2050 (Census).
Longevity is one trend that drives us to evaluate how we provide care for aging adults and people with chronic illnesses or disabilities. End of life issues are particularly challenging, especially when society seeks answers in public policy.
Assisted suicide is part of a constellation of end-of-life issues. While some advocate for its legalization as a personal decision, there can be unintended consequences to such a development.
In the 115th Congress (2017-2018), a Sense of Congress Resolution (H.Con.Res.80) garnered bipartisan support and expressed awareness that assisted suicide can put vulnerable people at risk of harm.
The National Council on Disability (NCD) is a long-time opponent of assisted suicide laws. In fact, the NCD issued its first report on this issue in 1997, and another in 2005. The agency concluded that the interests of the few people who would benefit from assisted suicide were “heavily outweighed by the probability that any law, procedure, and standard that can be imposed to regulate physician assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities.”
The NCD called on Congress to establish a comprehensive, fully-funded, system of assistive living services for people with disabilities.
Today, that position remains unchanged, and the council’s recently released update of that research reinforced its conclusions.
Nine states and the District of Columbia have legalized assisted suicide, Over the years, restrictions have been loosened. In some cases, there are insufficient measures to investigate mistakes or abuse.
The NCD also reported inequities in suicide prevention efforts. Often, people with disabilities are not referred for mental health treatment when seeking assisted suicide, while people without disabilities do receive these referrals.
The report found that regulatory safeguards are ineffective. Some considerations:
• A misdiagnosis of a terminal disease can cause a frightened patient to choose to end his or her life;
• People with the disability of depression may be more vulnerable;
• Many people with disabilities have been conditioned by society to see asking for help as undignified or burdensome, or that having a disability inherently lowers quality of life.
The report recommends steps to be taken at the federal and state levels to ensure that people with disabilities have a system of assisted services and supports, and that they are informed about these supports by medical providers. In addition, providers should receive training on working with people with disabilities.
Here are some steps that Congress could take now: (a) Pass another resolution similar to H.Con.Res.80. (b) Amend the Social Security Act to remove Medicaid’s statutory bias toward institutional long-term care rather than long-term services and supports (LTSS) provided for people living in the community.
People with disabilities should not consider ending their lives because of a lack of supportive services or because they are working with medical providers who are not required to help patients find alternatives. When policy makers debate legislation around end-of-life issues, it is critical that the needs of people with disabilities are on the table. As guidelines and guardrails are set, and standards established for education and training, people with disabilities need to be part of the equation. They deserve the same level of care, information, services, and support as anyone who does not have a disability.
Note: The National Council on Disability recently submitted its report, “Assisted Suicide Laws and Their Danger to People with Disabilities,” to the White House.
James T. Brett is a member of the National Council on Disability and the former chairman of the president’s Committee for People with Intellectual Disabilities.