Statement to the House Health and Government Operations and Judiciary Committees Re: House Bill 1021 – “Death with Dignity”
Friday, March 6, 2015
I write as Director of Public Policy of the Autistic Self Advocacy Network (ASAN) to oppose House Bill 1021, which would permit physician-assisted suicide in Maryland. I also write personally as someone who was born in Maryland and whose grandparents both passed away in Maryland after long illness.
ASAN believes that physician-assisted suicide legislation like HB 1021 discriminates against people who are aging, ill, or disabled. During the course of its advocacy for people with disabilities, we repeatedly encounter attitudes that life with a disability – including not only developmental disability but also disability caused by age or illness – is “undignified” and that people with disabilities cannot live happy lives at home among their loved ones.
The belief that it is better to die than to depend on others for assistance is central to arguments in favor of so-called “death with dignity.” Much of the testimony you hear today will focus on the “indignity” of needing help to eat, move, or take medications. In Oregon, which passed nearly identical legislation, 93% of those who died from physician-assisted suicide in 2013 cited “loss of autonomy,” or disability, as a motivation. Less than 28% cited concerns about pain control. (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/ year16.pdf.)
This harmful mindset perpetuates stigma, isolation, and depression among people with disabilities and can create significant or even fatal barriers to accessing health care and needed services. For example, we have identified pervasive discrimination by hospitals against people with disabilities seeking lifesaving organ transplants, including in Maryland. This discrimination is the target of other pending legislation, HB 1122.
Moreover, although HB 1021 claims to limit its scope to people who have a terminal illness, it has the potential to affect nearly everyone who has a disability or a significant illness (including age-related illnesses). Doctors typically cannot make six-month prognoses with an acceptable level of certainty. The disability community is full of people who have outlived “six-month” prognoses by decades. My friend Kerima Cevik, who has outlived a terminal diagnosis by over 30 years, has sent in her written testimony for you to read. In Oregon, which also limits physician-assisted suicide to those expected to live less than six months, 11 patients who received the lethal medicine in 2012 or 2013 died after ingesting the medicine in 2014, over a year later. There is every reason to believe that legalized physician-assisted suicide in Maryland would shorten the lives of many people by months, years, or decades.
People facing life-threatening diagnoses – especially those expected to cause some level of disability as part of their natural progression – are a highly vulnerable population. It is extremely common for people to feel depressed in the face of progressive disability. Moreover, people with disabilities, including disabilities resulting from age or illness, are also at heightened risk of abuse, isolation, and exploitation.
Instead of addressing these risks, legislation like HB 1021 actively exacerbates them. Neither the Oregon law nor the Maryland bill requires that individuals be provided either accurate information on pain management and long-term supports or referrals to services such as peer counseling and mental health screening. These types of information and referral services are the gold standard in the disability community. In 2013, only two of the 71 Oregonians who died from physician-assisted suicide were even referred for formal psychiatric or psychological evaluation. It is unthinkable that a doctor would respond similarly to nondisabled patients expressing suicidal feelings in the face of serious life stress.
In addition, neither the Oregon law nor the Maryland bill requires any sort of safeguard to ensure that the lethal medications are taken voluntarily after they were prescribed. Given the heightened risk of abuse and neglect among people who rely on others for help with day-to-day tasks, this is simply unacceptable.
People with significant disabilities, including people with life-threatening diagnoses, should not have to die in order to have dignity. Instead, they need access to the things that help them make
the most of their remaining time: quality palliative care, respectful in-home supports, counseling, and assistive technology to maximize autonomy. Let’s focus on aid in living, not “aid in dying.”
Samantha Crane, Director of Public Policy Autistic Self Advocacy Network
2013 H Street NW
Washington, DC 20006