Thirty years ago, I was diagnosed with Friedreich’s ataxia, an incurable neuromuscular, and often life-shortening, disease, which will eventually incapacitate me. Since 1990, I have lost the ability to walk and I now use a wheelchair. Friedreich’s ataxia causes various forms of heart disease, including heart enlargement and cardiac failure.
As a result, the end of my life could involve great suffering. It’s why I have supported the bipartisan Massachusetts End of Life Options Act since it was originally introduced, in 2011. It would give me the option to peacefully end my suffering if it becomes intolerable as I near death.
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The coronavirus pandemic has tragically highlighted the fragility of life and the importance of a compassionate death. It’s critically important — especially in times of uncertainty — that we’re able to direct how we want our final days to unfold, by having the authority to decide our end-of-life care options based on our personal values and beliefs.
Massachusetts lawmakers can enact this legislation to ensure that mentally capable terminally ill adults with six months or less to live have the option to die peacefully. There are 88 bill cosponsors in the House and Senate, nearly half of the 200 members of the Legislature.
If this bill becomes law and my condition becomes terminal, I don’t know if I would use this end-of-life care option. But I do know that I want the right to make that decision.
Most Massachusetts voters agree. According to a 2013 statewide poll by Compassion and Choices, 70 percent of voters — including 75 percent of those with a disability and 64 percent of Catholic voters — support medical aid in dying. In addition, the Massachusetts Medical Society dropped its opposition to medical aid in dying and adopted a neutral position after a 2017 survey showed its members supported this end-of-life care option by a 2-1 margin.
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Supporters of the End of Life Options Act include the ACLU of Massachusetts, Amherst Town Meeting, the Boston Ethical Society, the Cambridge City Council, the Falmouth Board of Selectmen, Fenway Health/AIDS Action, Greater Boston Humanists, the Lexington Board of Selectmen, the National Association of Social Workers Massachusetts, the Northampton City Council, and the Provincetown Board of Selectmen.
Medical aid in dying has been authorized in Washington, D.C., and nine states, starting more than two decades ago with Oregon in 1997, and including our neighboring states of Vermont in 2013 and Maine in 2019, without one documented case of misuse.
For example, Disability Rights Oregon confirmed in a letter last year that it “has never . . . received a complaint that a person with disabilities was coerced or being coerced to make use of the [Oregon Death with Dignity] Act.”
In addition, a Journal of Medical Ethics report about the Oregon law concluded: “Rates of assisted dying in Oregon . . . showed no evidence of heightened risk for the elderly, women, the uninsured . . . people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”
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After nine years of debate on this issue, the Massachusetts Legislature should listen to residents and enact the End of Life Options Act into law.
Michael Martignetti lives in Lexington with his wife and two teenage sons.
