A demonstrator against assisted suicide joins a protest outside Parliament in London Sept. 2015. (CNS photo/Stefan Wermuth, Reuters)
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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 is far outpacing younger generations. The Census reports that 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.
Today, 36 percent of adults have some form of disability, according to the Centers for Disease Control. The likelihood of developing a disability increases with age. In fact, 40 percent of people over 65 have a disability.
Longevity trends drive a constant evaluation of how we provide care for aging adults, people with chronic illnesses or disabilities. End of life issues are particularly challenging, especially when society seeks answers in the form of public policy.
Assisted suicide is part of a constellation of end-of-life issues. While some individuals and groups advocate for its legalization as a personal decision, there can be unintended consequences.
Policy makers debating this issue need to consider the impact on certain populations, including people with disabilities. In the 155th 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 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 research concluded that the interests of the few people who would benefit from assisted suicide were "heavily outweighed by the probability that any law, procedures, and standards 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, their position remains unchanged.
The NCD's recently released update of that research reinforced their conclusions.
Nine states and the District of Columbia have legalized assisted suicide. Over the years, restrictions have been loosened. Research has been a challenge as there is a lack of data due to state mandated privacy provisions. Most states do not have measures to investigate mistakes or abuse.
The NCD report also noted a double standard 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. Patients may not receive the protection they need. Some considerations:
-- A misdiagnosis of a terminal disease can cause a frightened patient to choose to end their 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.
-- Financial or emotional pressure can cloud an individual's judgement.
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. We need to make sure that medical providers inform patients about these supports. Medical providers should also receive training in working with people with disabilities as well as understanding the risk factors for suicide in this population.
Here are just a few of the actions that Congress could take now, starting with:
-- Passage of another resolution similar to H.Con.Res.80.
-- Amend the Social Security Act to remove Medicaid's statutory bias toward institutional long-term care rather that long-term services and supports (LTSS) provided for people living in the community.
-- Explore legislative options to provide home and community bases LTSS through Medicare.
A voice for people with disabilities
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. To the extent that end-of-life issues are being addressed through laws and regulations, it is crucial that the needs of people with disabilities are on the table. As guidelines and guardrails are set, and standards established for educating medical providers, 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.
(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.