27 Apr Ask Alice May 2022

ASK ALICE

This Month’s Topic: The Individuals-with-Disabilities Community and Act 39

Dear Alice,

I have heard that the disabilities community does not support Medical Assistance in Dying Acts like Vermont’s Act 39, and that some advocates for those with disabilities may actually find these Acts offensive.  I try to avoid supporting things that offend any historically challenged demographic, but I just don’t understand this one.  Can you explain why the disabilities community would have a problem with a competent adult on the cusp of death taking control of the timing, setting, and manner of their death?     

             Thanks, 

                   Just Trying to Understand

Dear Just Trying,

What a great question!

I recently saw a video panel discussion addressing this very subject.  It was sponsored by Compassion and Choices, a wonderful organization dedicated to improving care at the end of life, expanding end-of-life options, and empowering everyone to chart their own end-of-life journey.  The panel was comprised of three individuals who were both advocates for the disabled and strong supporters of Medical Assistance in Dying legislation; and they, along with the Compassion and Choices moderator, explained how and why the supposed dichotomy between disability rights and end-of-life rights is a false one.

The moderator began by noting that like so many communities, the individuals-with-disabilities community is quite diverse in many ways, including their opinions on this subject.  Indeed, she referred to some polls indicating that two out of three individuals with disabilities actually support Medical Aid in Dying legislation.    Nonetheless, it is true that the leadership of a number of disability rights organizations have taken a position against it.  So why is that?

From the discussion, it appears that there are two primary lines of concern.

First, there is the fear that individuals with disabilities will be pressured or coerced to use this option by insurers, providers, families, or the government.  Oregon has allowed Medical Aid in Dying for twenty-five years, however, and data from that state and others with similar laws shows absolutely no evidence of this happening.  Indeed, many of the critics who raised this concern twenty-five years ago have since acknowledged that their concern was unfounded.  And the absence of evidence of pressure or coercion makes sense, because the legislation itself has very strict limitations and protections to ensure it is not misused.  Most pertinent in this context, the law requires that two independent clinicians evaluate the patient and determine that they have a terminal condition or illness that will result in their death within 6 months – a requirement that most individuals with disabilities would not be able to meet, at least not based on their disability alone.  Additionally, these laws have very specific and detailed informed consent requirements; and many of them, including Vermont’s Act 39, contain waiting periods.  The law requires that two independent clinicians evaluate the patient’s decision-making capability and discuss with them all alternative options for alleviating their suffering.  Many if not most of these patients will already be in hospice care, but if not, the patient may be referred to hospice –  and hospice provides another layer of oversight to prevent any pressure or coercion.  

Secondly, critics have voiced concerns that Medical Aid in Dying laws devalue people living with disabilities by implying that disability causes a poor quality of life;  by implying that disability is undignified; and by sanctioning having a disability or feeling like a burden as a legitimate reason to die. In large part, this concern is based on testimony from legislative witnesses supporting the laws getting up and describing their suffering, including descriptions of things they are unable to do as the result of their deterioration from their terminal disease – things that individuals with disabilities learn to adapt to and live with all the time. As one of the panelists pointed out, however, these critics are missing the big, crucial difference between having a disability caused or accompanied by a terminal condition and having a disability that is not.  And on a more practical, material level, another panelist, an ethicist, suggested that if Medical Aid in Dying laws reflect or result in devaluation of individuals with disabilities, one would expect states with such laws to have other policies, laws, and regulations reflecting such a devaluation.   But this is not the case.  To the contrary, these same states that have Medical Aid in Dying laws are among the states that spend the most on health care and other programs beneficial to individuals with disabilities.  And those expenditures have continued to increase since the Medical Aid in Dying laws were passed.

After considering these issues, I have decided to continue supporting Medical Aid in Dying despite the position of some leaders of some disability rights organizations.  Indeed, I’m inclined to agree with those who have called the position of these leaders patronizing, because it assumes individuals with disabilities are vulnerable to coercion and unable to make their own choices.   To the extent disability rights organizations’ leaders take this position, they may end up depriving their members of this end-of-life option should those members find themselves with a terminal condition.  Instead, as the panelists suggested, perhaps disability rights organizations should not take a position on this issue of personal choice, but instead let their individual members decide for themselves. 

Hope this helps.

Best wishes,   Alice   

Please contact Ruth Nangeroni, Taking Steps Brattleboro Coordinator, 802-257-0775, ext. 101, or ruth.nangeroni@brattleborohospice.org, for information about Advance Care Planning.

Till next month, folks.  Please send your questions to Alice via info@brattleborohospice.org.