Testimony of Sharon Shapiro-Lacks for the Jewish Disability Empowerment Center

NYS Assembly Hearing – May 3, 2018
Medical Aid in Dying Bill # A02383A

The “Medical Aid in Dying” bill, if passed into law, will bestow power to physicians and the medical establishment to use their understanding of “quality of life” in order to determine who among those deemed “terminally ill” have good reason to end their lives.

We at Yad HaChazakah-The Jewish Disability Empowerment Center proclaim that doctors and mental health professionals, who are members of the broader society, are too tainted by centuries old fears of disability in order to determine who is rational and who has good reason to die.

We oppose giving the medical establishment, with the input of mental health professionals, the ability to prescribe life-ending drugs months or weeks before one’s projected time of natural death. Their evaluations will be based upon their predominant ableist attitudes about what constitutes “quality of life”. We are opposed to giving insurance companies, Medicare, and Medicaid a convenient way to save on health care and hospice costs. If this bill is passed into law, disabled folks and seniors living on fixed incomes who are sentenced with 6 months or less to live will too easily be granted deadly doses.

People with disabilities can lead happy and productive lives using wheelchairs, ventilators, and personal care assistance. However, it is generally erroneously assumed that once someone loses bodily functions, life is no longer worth living. People with disabilities experience this prejudice every day. We are frequently told in many ways, “You’re amazing; I could never live like that.”

Medical providers are subject to the same prejudicial assumption about disability and are likely to agree to help a terminally ill person, who they deem “rational”, to kill themselves weeks or months before the predicted time-frame of death due to a diagnosed terminal condition. In the end, the medical establishment, insurance companies, Medicare and Medicaid will be the ultimate gatekeepers over who lives or dies based upon their attitudes towards becoming disabled and concerns for cost.

An estimated time of death that spans months or even weeks is a red herring and can be very inaccurate. We need to handle the real issues – relieving pain and discomfort; adjusting to changes in appearance and function; addressing fear of being a burden to others; relieving stress on families; and helping one to decide how to live out one’s remaining time. Stephen Hawking is a shining example of someone who was given a 2- year medical death sentence, and who, with the right support, technology, and medical attention, defied medical predictions, lived until age 76 and left a scientific legacy for generations to come.

With the proper provision of pain and discomfort relief, medication or procedures, long term care options, hospice care, living and mobility aids, lifestyle adjustments, activities, counseling, and family respite care, we can help people to live meaningful lives until the final hours. We need to work on advocating for and securing these supports; not place death as a medical tool into doctors’ hands.

Sharon Shapiro-Lacks
Executive Director
Yad HaChazakah – The Jewish Disability Empowerment Center