HARTFORD — They came to Hartford in wheelchairs, two strong-willed women whose bodies are failing. Cathy Ludlum opposed an “aid in dying” bill, fearful of a society that may coerce the disabled into suicide. Sara Myers urged passage, asking for the right to face death on her terms, should she so choose.
More than 500 witnesses submitted public-hearing testimony about HB 5326, An Act Concerning Compassionate Aid in Dying for Terminally Ill Patients. But the essence of arguments pro and con could be distilled Monday in the opposing testimonies of Ludlum and Myers.
Both women spoke fiercely about preserving a degree of autonomy in lives circumscribed by illness, one chronic and one terminal. To Ludlum, HB 5326 casts a long, ominous shadow over the disabled community. To Myers, it is a beacon of hope and empowerment, a last weapon against an incurable disease.
Myers, 59, of Kent was diagnosed three years ago with amyotrophic lateral sclerosis, the progressive neurodegenerative disease often referred to as “Lou Gehrig’s Disease.” She said she is unafraid of being coerced to die, nor does she fear being somehow labeled by society as unworthy of further treatment.
What she does fear is surrendering to ALS, dying on its terms, which may mean choking on her own saliva or requiring a ventilator to take a breath. Myers said she doesn’t know how she would face that day, but she at least wants the option of a different end.
“I do not know when, if ever, I will reach the time of ‘enough is enough,’ but just knowing that I had the option to call it quits in a gentle and dignified manner, surrounded by family and friends, would give me enormous peace of mind,” Myers said.
Ludlum, 51, of Manchester has had a neuromuscular disease since childhood that is considered chronic, not terminal. Long an activist, Ludlum sees the bill from the perspective of someone for whom disability has required a lifelong fight for respect and equal rights.
Her fear — one shared by others with disabilities — is that society inevitably will devalue the lives of the disabled if the terminally ill are allowed to obtain prescriptions to end their lives. To Ludlum, the narrowly written bill puts the state on a slippery slope to a more expansive acceptance of suicide or even euthanasia.
“Do you mean to tell me that a person of advanced age will not be considered terminally ill for purposes of this legislation?” Ludlum asked. “Not everyone with a disability has a terminal illness, but pretty much everyone with a terminal illness will be disabled, meaning they will need some assistance, whether it be with bathing, eating, or other personal tasks.”
The bill before the legislature’s Public Health Committee would allow a physician to prescribe, but not administer lethal drugs to a patient diagnosed with an incurable and irreversible medical condition that will, “within reasonable medical judgment, result in death within six months.”
Sponsors say the bill includes a series of safeguards against abuse, including a requirement of two written requests by the patients, approval by two physicians and a psychiatric evaluation if the primary-care physicians suspects depression.
It is modeled after Oregon’s “Death With Dignity Act,” which was passed in 1997.
In the 16 years since it took effect, 1,173 patients have obtained prescriptions to hasten their deaths, and 752 have used them. Over the past five years, an average of 70 patients have died annually using drugs obtained under the law, according to Oregon’s public health officials, who must collect and publish the data every year.
Patients taking their lives under the terms of the Connecticut bill would not be committing suicide under state law, nor would their deaths be recorded as suicides.
Two of Connecticut’s top elected statewide officials, Comptroller Kevin Lembo and Attorney General George Jepsen, testified in favor of the legislation Monday.
“I am here to support this legislation, because I want this choice for me,” said Lembo, the former State Healthcare Advocate and former director of an AIDS support program. “Whether or not I exercise my choice would be decided among me, my family and physician.”
Jepsen, who supported similar legislation while a state Senate leader in the early 1990s, called the bill “a carefully crafted, precise proposal.”
Gov Dannel P. Malloy has expressed skepticism about the measure.
“I don’t think in society we should be viewed as encouraging suicide,” Malloy told reporters Friday. “I would have to understand what the safeguards are with respect to that. A lot of what I’ll say and do in the future about that issue is dependent on the language I’ve been presented.”
James D. McGaughey, the executive director of the Office of Protection and Advocacy for Persons with Disabilities, testified Monday against the bill. He said he found more alarm than comfort in Oregon’s experience, noting that many who used the law seemed motivated by a fear of burdening their families.
“These figures offer cold comfort for people who live with significant disabilities, many of whom live with the daily reality of needing assistance with personal care,” McGaughey said. He said the law seems to suggest that a need for personal assistance translates into “a loss of dignity” and excuse for suicide.
McGaughey said allowing doctors to write prescriptions expressly to end life runs counter to medical tradition, it cloaks suicide with the trappings of medical legitimacy.
“This is a slippery slope,” he said.
Sen Gary Holder-Winfield (D-New Haven) challenged McGaughey about his caution of a slippery slope, noting that Oregon has had 16 years experience with a similar law without expansion.
“I don’t see it your way,” he said.
The hearing began at 10:30 am and continued well after sunset. The audience skewed older, their allegiances advertised by stickers provided by Compassion & Choices, a backer of the legislation, or a coalition in opposition called Second Thoughts Connecticut.
Every three minutes, an egg-timer bell would go off, signaling to witnesses their allotted time was up. But the committee’s co-chair, Sen Terry B. Gerratana (D-New Britain), seemed loath to cut off witnesses who came to share stories of death and dying.
In the audience, Judith Passmore of Middletown engaged in her own private debate with witnesses and legislators opposed to passage, whispering retorts. She wore a sticker and a green wristband, each with the same message: “My life, my death, my choice.”
Every time a legislator would refer to suicide, Passmore whispered, “It’s not suicide.” The bill specifies that deaths resulting from self-administered drugs obtained through the proposed program will not be considered suicides under state law.
Passmore later testified, telling legislators about her dying father’s request to disconnect his feeding tube 40 years ago.
“As much as I wanted to let my father have the peace he desired, I did not,” she said. “He died three weeks later, and I have felt sad about my lack of courage in the ensuing 40 years.”
(This story originally appeared at CTMirror.org, the website of The Connecticut Mirror, an independent, nonprofit news organization covering government, politics, and public policy in the state.)