Tessa Marquis has been advocating for legislation that would allow terminally ill people to receive legal access to life-ending medication since 2014, but this year her testimony was different, her anger at legislative inaction more personal. Her mother died five weeks ago.
“She had to starve herself to death,” said Marquis.
“Unfortunately, those are the options people have in the state of Connecticut, currently,” said Rep. Jonathan Steinberg, D-Westport and co-chair of the Public Health Committee, which heard testimony from more than 120 people on Wednesday about whether people with terminal illnesses should receive legal access to medications that would end their lives.
Steinberg and his colleagues hosted a public hearing on the so-called “aid-in-dying” bill. The public hearing lasted all day and appeared poised to continue into Wednesday evening, as only three-quarters of the people on the speaker list had testified by 5 p.m.
Many participants recounted painful memories of watching their loved ones die slow, agonizing deaths. They lamented their inability to ease their suffering and relived their traumatic last memories of family members who had been in extraordinary torment as they took their final breaths.
Tyrone Biniarz recalled his brother Clifford’s death from cancer. Clifford had extensive surgery and experienced extreme pain in the four years before he died.
“It was a several-month, just sort of sliding to death,” said Biniarz. “At the end, he would have opted for something like this, probably, had he had the option.”
Similar legislation has been raised at least 14 times, according to supporters of the measure. It passed out of committee for the first time in last year’s session, the same year a poll was published that showed 75% of Connecticut voters supported the proposal.
Steinberg said this year’s measure is slightly more strict than last year’s.
“We wanted to take away any argument that we’re not being sufficiently rigorous,” he said.
Patients with a terminal illness must submit two written requests to their attending physician, the second submitted at least 15 days after the first. Each written request has to be witnessed by two people who are not immediate family members or entitled to a portion of an estate at the time of a person’s death.
Though there were many deeply personal stories told in support of the bill, there were many people whose experiences and fears led them to oppose it.
Members of the Patients’ Rights Action Fund held a press conference the day before the public hearing to voice their opposition. Cathy Ludlum, the leader of a disability organization called Second Thoughts Connecticut focused on stopping the legalization of aid-in-dying legislation, took issue with the bill’s definition of a terminal illness, defined as an “incurable and irreversible medical condition” that will result in death within six months if “the progression of such condition follows its typical course.”
“I am almost 60 years old, and I have lived this long because I had been vigorously interfering with the typical course of spinal muscular atrophy,” Ludlum said. “But SB 88 says nothing about the impact of treatment on life expectancy.”
Others worried about widening the pool of people eligible for life-ending medication and expanding the medical professionals who can sign off on their requests. They were concerned about fewer safeguards and shorter wait times that could be approved by lawmakers in future legislative sessions.
“Expansion efforts follow legalization,” said John Kelly, director of of Second Thoughts MA: Disability Rights Activists against Assisted Suicide, and New England Regional Director for the national disability rights organization, Not Dead Yet.
In the course of that process, the conversations, the reminiscence, the healing that happens on every level, really is a gift to every person.
Sister Catherine Mary Clarke, Franciscan Home Care and Hospice Care
Then there was the matter of prognosis. Medical professionals are generally good at giving diagnoses but are poor predictors of how much time a person has left to live, said Dr. Brian Callister, a board-certified Internal Medicine/Hospitalist physician in Nevada.
“Once you have those pills in that nightstand, on a dark and gloomy night, you’re feeling like you’re a burden to your family, you’re feeling like you’re just a weight to everyone around you, and you’re depressed; that’s like having a loaded gun in the nightstand,” Callister said. “And once you take those pills, there’s no going back, and you don’t know how much longer you would have had.”
Many disability rights advocates came out against the bill, skeptical of giving the health care system what they see as more power over their lives.
“The question at hand is not whether people can take their own lives — suicide is not illegal,” Ludlum told members of the Public Health Committee Wednesday. “The question is, how many other struggling people will follow their lead, pressured by society and assisted by the health care system, to die?”
Nancy Alisberg, a civil rights lawyer for four decades and former member of the CVH Whiting Task Force, said she was concerned that aid-in-dying would make doctors less motivated to treat situational depression, develop better palliative care and find new ways to help people live independently so they don’t feel death is their only option.
“When doctors operate under the assumption that people with significant disabilities are ‘suffering,’ an early death can begin to look reasonable,” Alisberg said in her written testimony. “If Connecticut physicians are permitted to end lives, people with significant disabilities will be vulnerable because often they don’t want to be a burden on society and are deferential to physicians’ knowledge.”
Proponents of the bill stressed that the measure would only give patients the choice to end their lives.
“There will always be people who, if given the option of aid-in-dying, will choose not to use it. And there will be others who will,” said John Warburg, who identified himself as a Fairfield resident. “I am protected to choose, and they are protected not to choose. It’s not an either/or situation.”
Others spoke in support of the natural process of dying. Sister Catherine Mary Clarke, from Franciscan Home Care and Hospice Care, said she believed that process helps people prepare for death.
“That doesn’t mean it’s not painful to watch someone you love decline, but in the course of that process, the conversations, the reminiscence, the healing that happens on every level, really is a gift to every person,” she said.
But that natural process can still end in agony. Dr. Stuart Steinmen talked about how his mother was diagnosed with cancer in 2019, after which she went into hospice. She was able to say goodbye to many of her loved ones, but one day she couldn’t get out of bed. Too weak to talk, she whimpered in pain. When she had the strength, she would beg her son, a doctor, to help her.
“Palliative care is not terminal care. There comes a point in someone’s illness when palliative care prolongs a slow and painful death,” he said. “I’m a physician, I had a palliative care doctor who would treat her at home. She had IVs, she had everything, and in spite of all that, she suffered like a dog.”
Staff writer Jessica Bravo contributed to this story.