Guest columnist Susie Mosher: Disability activists also oppose aid in dying

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By SUSIE MOSHER

Published: 12-09-2023 11:23 PM

The article “Bill seeks to give terminally ill options” published in the Gazette on Oct. 23 gave a slanted report on the public hearing held at the State House on Oct. 20. From reading the article one would be led to believe opponents of the Medical Aid in Dying (MAiD) bill were solely from religious organizations. Left out of the news were the many voices of disability rights advocates who gave testimony pointing out the problems with medical aid in dying. Listening matters.

People attending the dying of a loved one often find is not a dignified process if “dignity” is defined as painless, functional, unsoiled sheets, and respectful, quick supportive services from medical professionals and insurance companies. Death is often anything but dignified. One nurse who testified said it is often messy.

Life is not a dignified process for many people living day to day with disabilities. Pain, lack of trained medical personnel, misdiagnoses, underpaid caregivers, insurance runarounds, underfunded programs, abuse, and people who make judgments about their quality of life are part of living for many people managing disabilities.

For the aged or those with degenerative or chronic diseases, many people in the final stages of life are suddenly, newly disabled without having lived a life managing a disability. Inadequate resources, the lack of emotional support, the physical challenges, the stresses on relatives and caregivers — all are overwhelming. That part was described in the news article.

Not reported was the testimony from disabled people who warned about the inaccuracy of doctors’ diagnoses, the “guardrails” included in Masschusetts’ proposed legislation that are similar to the ones being violated and eliminated in Canada’s model and other jurisdictions. In Canada, the government has failed to meet the reviews in a timely manner as promised. There is creeping expansion of their original legislation, such as removing the “terminal illness” requirement (2021) and allowing MAiD for mentally ill people in 2024.

Massachusetts’ proposed legislation is very detailed with safeguards designed with care for an end-of-life option. These safeguards are based in a bureaucracy of consultations, documentation, data collection, skilled practitioners, available services, funding, etc. This plan has so many red flags for a law that is meant to end in a “good” death.

We know that, despite good intentions, the state of Massachusetts already has many agencies, policies and programs that are underfunded, not carefully monitored, poorly managed, and understaffed. People with mental illnesses, disabilities, without power, and without a voice are not well served. People with disabilities know how the health care system and our government fails them as they struggle daily to advocate for themselves.

Legislators and news outlets would do well to listen to people who face existential challenges day to day. The disability community is advocating for palliative services, not lethal doses. They have experienced the terrifying slippery slope of “quality of life” assessments by professionals. Their testimony advocates for education and support for caregivers, not assisted suicide.

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Listening matters. Hearing details from the Joint Committee on Public Health can be found online at malegislature.gov/Events/Hearings/Detail/4746.

Susie Mosher lives in Shutesbury.