Below in italics is the testimony of Sarah Launderville, the executive director of the Vermont Center for Independent Living, a statewide organization that advocates for the right of people with disabilities to receive the help they need to live in their own homes. Its website is http://www.vcil.org.
According to Launderville, the members of VCIL, in opposing assisted suicide, “…join with eleven nationally prominent disability organizations and the Vermont Coalition for Disability Rights…” True Dignity will post Vermont Coalition for Disability Rights’ testimony as soon as we get it.
Testimony for Joint Hearing on End of Life bill
House Human Services & House Judiciary Committee
Thursday, April 11, 2013
Sarah Launderville, Executive Director, VCIL
Good afternoon. My name is Sarah Launderville and I am the Executive Director of the Vermont Center for Independent Living (VCIL). VCIL is a statewide nonprofit organization of people with disabilities working together for dignity, independence and civil rights. We were founded in 1979. I want to thank the committee for taking our testimony today.
For years, VCIL has remained in opposition of the legalizing of physician prescribed suicide.
In addition to our opposition, we join with eleven nationally prominent disability organizations and the Vermont Coalition for Disability Rights (VCDR) who you heard from yesterday. I am passing out a list of the national disability rights groups opposed to legislation promoting assisted suicide.
The VCIL Board of Directors recently reviewed our stance and still has the same policy concerns with legislation that allows a Doctor to prescribe medication to end someone’s life.
Before I describe the concerns we have with the legislation specifically, I want to talk about how legislation around assisted suicide is directly related to people with disabilities.
According to the Americans with Disabilities Act as passed in 1990 and the ADA Amendment Act of 2008 the term “disability” means, with respect to an individual
(A) A physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment, or
(C) Being regarded as having such an impairment
Major Life Activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, speaking, thinking and breathing.
Another major life activity includes the operation of a major bodily function and those include but are not limited to: functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, and circulatory.
People who are given a life expectancy of six months or less to live are generally people with disabilities or soon will be.
VCIL is not here today to represent all people with disabilities. Obviously, we know that there are people with disabilities who want an individual choice to end their own life. We also know and hear from people who do not want to see assisted suicide legislation passed. We remain opposed to physician assisted suicide, and we feel that S.77 is a better starting point than that of an Oregon Style bill.
In the Oregon Style bill we remain concerned that:
Reporting requirements are not strong enough: We know that Doctors are required to report all lethal doses that are prescribed and we believe there should be consequences for Doctors who do not report.
When collecting data more questions need to be asked: If we were to move forward with legislation, I hope that Vermont will ask questions that will allow us as a state to evaluate the outcomes of the legislation. For example, interviewing patients before their death as to why they are seeking a prescription, interviewing family members after someone takes a lethal dose, and if a Doctor has refused to prescribe a lethal dose, how come? All these details will allow for stronger evaluation.
We need a provision to investigate abuse:
We are asking that you think about the unintended consequences of this legislation and not create policy that can harm vulnerable adults. Our Adult Protective Services system is not the appropriate place to go to for investigating abuses of a system in which doctors are prescribing a lethal dose of medication. There needs to be a better understanding and stronger connection to protecting people from the abuses that may happen by creating public policy allowing Doctors to prescribe medication with the intent to end a life.
Independent, detailed research and collection of data is needed which will allow us to monitor and assess the appropriateness of treatment and allow our state systems to identify priorities and where resources should go to ensure a better healthcare system and supports and services.
This legislation changes the role of a Doctor .
Mistakes can be made when declaring that an individual has six months or less to live. We have heard from people over and over about how they were told they had a life expectancy of six months or less to live and they have gone onto live rich and full lives.
Society often treats those of us with disabilities different than those without disabilities:
I have heard supporters of the bill say that this is really an individual’s choice and people who do not want to end their life do not have too.
I believe that this issue is complex and the way people with disabilities are treated by a larger society makes it so that it is not just about individual choice.
People with disabilities are often treated differently than people without disabilities when it comes to accessing healthcare and our communities. Someone who lives on Social Security benefits and depends on the government for supports such as personal care, housing, and transportation has a very different life experience than someone who is able to access education, housing, healthcare and their local drugstore.
There are differences and it is important to acknowledge and see that these differences may create unintended consequences for legislation that allows a Doctor to prescribe a lethal dose of medication.
We have heard that intractable pain seems to be the primary reason for enacting an assisted suicide law. According to the report Oregon’s Death with Dignity Act—2012 Oregon Doctors report the top five reasons reported for using a lethal prescription are disability related and include:
- Loss of autonomy
- Less able to engage in activities
- Loss of dignity
- Loss of control of bodily functions
- Feeling of being a burden
These are barriers people with disabilities who have less or more than six months to live experience. Loss of autonomy or loss of independence is what the independent living movement fights against. People did not and some still do not have access to living in the community on their own terms.
We want for people to live independently and we work very hard to ensure that services and supports are available for people who want to continue to live independently.
When there is a shortage of supports such as personal care services, access to equipment and home access modifications so that people can continue to live with autonomy, and we focus on suicide as a medical option while stripping access to these other services– we should expect people to fear that they will experience a loss of autonomy.
When the legislature heard loud and clear that pain is a serious issue, you worked to develop a Palliative Care bill. I hope as we look at the other system issues we have to ensure that everyone has equal access to services and opportunities.
We need to put an emphasis on things that will allow people to continue to live with autonomy, allow equal access to engage in activities and access to personal care services.
These issues and others that are raised as to reasons people seek a prescription to end their life should be worked on to ensure that all Vermonters have equal access to fully participating in their own lives instead of only offering a solution for death.
One last thing about autonomy, Independence is not whether you need assistance with personal care or help using the toilet. It is not medical. Independence is not in your limbs— it’s here (in your heart).
In closing, I want to thank you all for listening and taking VCIL’s testimony today. I thank you for your understanding that this bill is a bill related to those of us who live with disabilities and our families and I thank you for consideration.