More than most people, Sara Myers has a sense of how she might die. She has ALS, a disease that takes away the ability to move until, eventually, the diaphragm stops working.

“You basically are smothered to death,” she said.

Myers wants an alternative. She’s not ready to take her life, but she wants it to be a legal option, if only for her peace of mind.

It would mean not having to spend time thinking about how she would end her life if she couldn’t legally have help, that she’d be able to do it surrounded by loved ones, not alone. It might ease the worries that keep her up at night.

“If you’re used to doing things for yourself and you’re an independent person, to have your work taken away from you, to have every parcel of your dignity stripped from you is pretty horrifying,” she said.

Myers, who is 58 and uses a walker, came to the state Capitol complex Wednesday to testify for a proposal that would allow doctors to prescribe lethal medication to a patient who is competent and terminally ill, with less than six months to live.

“Having the ability to make that choice goes a long way to letting you be calm today and to live your life more fully and enjoy it now,” said Myers,  whose condition is often referred to as Lou Gehrig’s Disease.

But where Myers and others with terminal illness see a potential source of comfort and choice, Cathy Ludlum and other people with disabilities see something that could make them vulnerable, with fewer choices.

“Right now I have the choice to continue living my life the way I want to,” said Ludlum, who has a neuromuscular disease that has taken away her ability to move. “[The bill] opens the door to a different kind of future, a future in which my life may be thought of as too expensive or too burdensome on the society.”

The issue — supporters call it aid-in-dying, opponents call it assisted suicide — falls along a stark dividing line. Supporters see it as a matter of compassion, individual choice, and a way to avoid suffering. Opponents see in it the potential for abuse, for people to be pressured into dying rather than being a burden, and for certain lives to be devalued.

Whatever you call it, it’s legal in only three states. Oregon and Washington have “death with dignity” laws, both passed by voters through ballot initiatives. And Montana’s Supreme Court ruled that state law did not prohibit assisted suicide.

The issue has not fared well in state legislatures, and is considered unlikely to pass in Connecticut this year, although Wednesday’s public hearing marked the furthest along a bill on the subject has made it. Previous efforts, most recently in 2009, failed before reaching a hearing.

In 2009, supporters asked a court to declare that state law didn’t prohibit doctors from prescribing lethal doses of medication to mentally competent terminally ill patients who sought it. But Superior Court Judge Julia Aurigemma ruled against them, leading supporters to turn back to a legislative strategy.

On Wednesday, some spoke of seeing loved ones whose lives were prolonged in ways that seemed cruel, with pain and little quality of life.

“Health care is so good that it really makes it so that we live too long. We live into the pain to a greater extent,” said the Rev. Douglas Peary, who said he watched his father, two sisters and wife die in agony or drugged out of consciousness. “We treat our pets better than we do our people, and I think it’s very, very critical that we give people the right, too.”

Cathy Ludlum

Cathy Ludlum

But people with disabilities say they’re often at risk of not being given enough medical care, that doctors might misinterpret their disabilities as terminal illnesses and not give them the same life-saving options others would get.

James McGaughey, executive director of the state Office of Protection and Advocacy for Persons with Disabilities, said his office has represented people in cases where others were seeking to have medical care withheld or “do not resuscitate” orders placed in their charts because they were wrongly deemed terminal.

“Some of those folks are alive today, 20 years after those hearings, and that happens a lot in the disability world,” he said.

He and others warned that the proposal could increase the vulnerability of people with disabilities or disadvantages, making it easier for them to end their lives instead of receiving counseling against suicide.

“At what point does an option become a duty, an option to die become a duty to die? Because after all, you’re costing your family money, you’re costing your relatives a lot of time and hassle, and maybe you’re costing society something too by hanging around,” McGaughey said.

Stephen L. Mikochik, a professor at Temple University’s Beasley School of Law, warned during a press conference that the bill lacked important safeguards, such as requiring a waiting period between getting a terminal diagnosis and being given a lethal dose of medication. It would also allow an heir who would benefit from a person’s death to attest to that person’s competency, he said, although the bill would require at least one person who is not an heir or relative to do so as well.

“The possibility for elder abuse is enormous,” he said.

Rep. Betsy Ritter, D-Waterford, who testified for the bill, pointed to Oregon, where the law was passed in 1997. That state’s health department has found no cases of coercion, abuse or misuse of the law, she said.

Peary, who is president of the Unitarian Universalist Society of Meriden, said he understood the views of people concerned about the bill.

“I’m sure that there’s far more people that don’t want to die, and they don’t have to,” he said. “We’re not trying to do anything to them. We want them to have every choice that they want.”

But that also means giving people who are dying choices, he said.

When his father was dying of cancer, Peary said, he looked like a concentration camp victim. He was heavily drugged. “And he came to and was almost pleading for somebody to help him die.”

“And I know that when my time comes, if I’m in that state, I don’t want to be drugged unconscious,” he said. “That’s no life. I happen to have a little bit of claustrophobia, and I don’t like the idea of being paralyzed and not being able to do anything.”

Follow Mirror health reporter Arielle Levin Becker on Twitter @ariellelb.

Arielle Levin Becker covered health care for The Connecticut Mirror. She previously worked for The Hartford Courant, most recently as its health reporter, and has also covered small towns, courts and education in Connecticut and New Jersey. She was a finalist in 2009 for the prestigious Livingston Award for Young Journalists, a recipient of a Knight Science Journalism Fellowship and the third-place winner in 2013 for an in-depth piece on caregivers from the National Association of Health Journalists. She is a 2004 graduate of Yale University.

Leave a comment