— Connecticut does not allow medical aid in dying, so Lynda Bluestein sued Vermont to take advantage of that state’s law. Now, legislators may make the practice more broadly available.
by Lola Fadulu
Thanksgiving is typically a joyous time for the Bluestein family. Their Bridgeport, Conn., home is filled with laughter, music and even a cooking competition. But last fall, the mood was somber.
“I think next year will be the year that Grandma will die,” Lynda Bluestein, 75, recalled telling her husband, children and grandchildren as they gathered in the living room.
Ms. Bluestein’s 16-year-old twin granddaughters asked if she was scared.
“I’m just happy that I don’t have to suffer endlessly,” she replied.
Ms. Bluestein, who was diagnosed with late-stage fallopian tube cancer, said that if chemotherapy stopped working, she intended to make use of a Vermont law that allows certain people to seek and self-administer a lethal dose of medication to hasten their death. The law limits the option to Vermont residents — and Ms. Bluestein was willing to move there, if need be — but this month the state waived the residency requirement for her, part of the settlement of a lawsuit in which she had argued the restriction was unconstitutional.
Now, Vermont lawmakers are considering scrapping the residency requirement altogether, making the practice more broadly available.
The debate over the proposal has parallels to the issue of abortion, in which access to the procedure now differs greatly from state to state in the wake of the 2022 Supreme Court ruling that overturned the right to abortion nationwide.
“To my knowledge, other than what is happening right now with abortion, there are no other medical procedures that are limited to people on the basis of their residency,” said Amitai Heller, a senior staff attorney with Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. The group helped file the lawsuit on Ms. Bluestein’s behalf.
“It’s just unfair, and it doesn’t really make sense to restrict some sort of medical practice just based on ZIP code or residency,” Mr. Heller said.
Vermont is one of 11 jurisdictions, including Washington, D.C., where certain patients with a terminal illness can seek a lethal dose of medication as they near the end of their lives. Oregon is the only jurisdiction without a residency requirement, after officials there agreed in a 2022 settlement not to enforce the one in its law.
Connecticut, where Ms. Bluestein lives, is not among the states where medical aid in dying is legal. Bills have been introduced repeatedly, starting in 1994, and have failed each time, most recently in 2022. That is when Ms. Bluestein looked to Vermont.
“I thought, I can’t wait any longer for Connecticut to get its act together,” she said.
(Legislation to legalize medical aid in dying has been introduced regularly in New York since 2016 but has failed to pass. New Jersey has had such a law since 2019.)
In the Vermont General Assembly, the bill that would remove the residency requirement passed the House in February and is awaiting action in the Senate.
“We had heard from advocates and our health department that this aid in dying is a medical health care,” said Representative Golrang Garofano, who is known as Rey and is a sponsor of the bill. “There’s no other restrictions around residency requirements for other types of health care.”
Oregon was the first state to pass a medical aid in dying law; it took effect in 1997. Its residency requirement was included to “neutralize the myth that terminally ill people would flock to Oregon to use its medical aid-in-dying law,” said Barbara Coombs Lee, a co-author of the measure. The requirement was also meant to ensure that the law would be “tightly controlled and limited to test safety and effectiveness.”
Vermont modeled its law after Oregon’s, said Ann Pugh, a former lawmaker who worked on the legislation. Ms. Pugh said she now supports the effort to drop the residency requirement. “When someone comes to Vermont, they follow the rules of Vermont, they follow the laws of Vermont, they get the care, they get the services, and this should be no different,” she said.
But opponents do not consider the practice medical care.
“This isn’t a medical treatment,” said Jennifer Popik, the director of the National Right to Life Committee’s Robert Powell Center for Medical Ethics, which opposes such laws. “This is a medical professional abandoning their patient and giving them the tools to end their life.”
Detractors include the Catholic Church and disability rights groups, which worry that physicians and insurance companies may steer people with disabilities toward life-ending measures. Instead, those groups tend to favor improving palliative care, which is focused on easing the symptoms and side effects of disease and treatment.
Brian Kane, a senior director of ethics at the Catholic Health Association, said he was concerned about states’ expansion of access to the practice by dropping residency requirements. “Rather than trying to address the needs of vulnerable people, we offer them the possibility of killing themselves,” he said.
Anita Cameron, a disability rights activist, said that if patients reach the point where they would rather die than live in pain, their doctors are not properly managing their treatment. She said she feared that if the practice became more widespread, it would come to reflect the inequities in the broader health care system.
“There’s just no place for it, especially when we have such a long history of racial disparities in health care and disability discrimination in health care,” Ms. Cameron said.
But proponents of the practice say there are safeguards in the laws to prevent abuse. In Vermont, for example, patients must be 18 or older with a terminal condition and a prognosis of six months or less to live. They must be able to self-administer the medication and be capable of making their own health care decisions.
In Vermont, 173 patients participated in the “Patient Choice at End of Life” process between May 2013 and December 2022, according to the Vermont Department of Health. Many of those patients had cancer, and others had amyotrophic lateral sclerosis, or A.L.S.; neurodegenerative conditions; and other diagnoses.
Dr. Diana Barnard, a physician in Vermont who filed the residency lawsuit jointly with Ms. Bluestein, said she spends significant time with terminally ill patients discussing which options might be best for them.
“This really is all about patients,” Dr. Barnard said. “It’s about patients who are wanting to live, wanting desperately to live, but having to accept that they are living with an illness that is going to end their life.”
Dr. Barnard said her patients want a say in what happens at the end of their lives. They are thinking deeply through a number of ways to be physically and emotionally comfortable during their last days.
Dr. Barnard has patients from New York whom she sees regularly and said it had been difficult to tell them they were ineligible for medical aid in dying because they didn’t live in Vermont.
“It seemed unjust and unfair,” she said.
Ms. Bluestein hopes that the Vermont residency requirement will soon be lifted. She said she was glad she would not be “at cancer’s mercy” and could instead make her “own decisions about when I have had just about all I intend to take from this latest cancer.”
The practice had been at the forefront of Ms. Bluestein’s mind decades before she got sick. Her husband, a physician, had done advocacy work with Compassion & Choices over the years.
Ms. Bluestein thought deeply about the option when her mother died. In the weeks before her death, her mother had a full course of chemotherapy and was fatigued. She didn’t even want Ms. Bluestein or her brother to visit.
“We had no time with her at the end of her life,” Ms. Bluestein said. “I don’t want my children, who are now 45 and 47 years old, to have those memories of me at the very end.”
Ms. Bluestein’s diagnosis of late-stage fallopian tube cancer in March 2021 was her third bout with cancer. She had been diagnosed with breast cancer in 2018 and had a double mastectomy. As she recovered, she was diagnosed with malignant melanoma.
For now, Ms. Bluestein is undergoing chemotherapy, and it appears to be working. If that changes, she is likely to end the treatment, which will quickly make her eligible for hospice. And that is when she is likely to request the lethal dose of medication.
In the meantime, she has been curating 50 years of photographs and putting them into boxes. She hopes to spend her final day, whenever it is, with her family sifting through the photos — ones of her children playing T-ball and soccer and of the family’s many trips to Disneyland — peacefully trading memories.
Complete Article ↪HERE↩!