With the debate over medical aid in dying focused on the coming legislative session and the Supreme Judicial Court, people on both sides of the issue shared their experiences and perspectives.
If he could have, Anthony Baudanza would have moved to Vermont, where medical aid in dying has been legal since 2013, his wife, Amanda, said. But he ran out of time. The man family and friends knew as TJ died of advanced colon cancer in 2015 at the age of 32.
At the end, TJ, a Boston entrepreneur and marketer, “suffered for weeks in excruciating pain,” Amanda said. “I still have nightmares about it.” Nurses gave him the highest legal dose of Dilaudid, a pain reliever more potent than morphine, but it wasn’t enough to help him.
Before he passed away, TJ and Amanda talked about the option of medical aid in dying, which they knew was closed to Massachusetts residents. “I told him this was something I was going to take on,” said Amanda, who now lobbies state lawmakers on the issue. “I don’t want to see anyone else go through what he went through.”
TJ’s memory and legacy remain alive even as Amanda works to fulfill her promise to her husband. Shortly after he was diagnosed with the fatal disease, TJ underwent a cryopreservation procedure to freeze his sperm. And this fall, seven years after his death, Amanda gave birth to their son. The baby boy, now 7 weeks old, is named TJ.
During the COVID-19 pandemic, the Rev. Gloria White-Hammond saw the “visceral distrust” many people of color had for the health care system. The struggle for health equity in Boston and beyond informed her opposition to medical aid in dying. She fears vulnerable people could be more easily be pressured into ending their lives prematurely.
White-Hammond, 72, known to many as Pastor Gloria, is also a retired pediatrician and teaches at Harvard Divinity School. She’s counseled parishioners at the Bethel AME Church in Boston’s Jamaica Plain neighborhood for the past seven years on planning ahead for the end of their lives, including how to talk about the passage with their families.
In that time, she said, “I’ve never had a family or a congregant who’s wanted to end their life prior to a more natural exit.” Drawing on her religious and medical background, she believes that universal palliative care for people with serious illnesses should incorporate spirituality.
“While I understand the impetus behind [medical aid in dying], I definitely have reservations,” White-Hammond said. “If there was better access to palliative care earlier and more comprehensively, I’m not sure that would be on the table. And I worry that people who have been victims of inequities could be encouraged or coached to make those decisions [to hasten death] by a system that doesn’t treat them well.”
Bev Baccelli learned she had multiple sclerosis, a chronic disease of the central nervous system, when she was 27 and the left side of her body went numb. Three decades later, the Mattapoisett resident was diagnosed with multiple myeloma, an incurable blood cancer.
Baccelli, now 73, takes an experimental cocktail of four cancer drugs through a clinical trial at Dana-Farber Cancer Institute in Boston. Despite her health struggles, she continues to ski, hike, swim, and kayak with her wife of 19 years, Liz DiCarlo. “I have about as good a daily life as anyone who has both MS and multiple myeloma,” Baccelli said.
While she remains vibrant, Baccelli, a retired social worker, can envision a day — “it could be six months, or it could be six years,” she said — when she’d like to have the choice of hastening her death if she’s suffering.
“Everybody wants pain to be under control, but sometimes that can’t happen,” even through hospice care, Baccelli said. “It’s important to be able to pass into whatever we pass into peacefully.”
Lawyer, critical-care nurse, and bioethicist MC Sullivan‘s religious convictions form her point of reference on end-of-life issues. Sullivan, the chief health care ethicist for the Roman Catholic Archdiocese of Boston, cites a papal letter from 2020 that decries “the legalization of assisted suicide and voluntary euthanasia in some countries.”
In the letter, Pope Francis laments “a throw-away culture where the victims are the weakest human beings.” Sullivan contends the bills filed in Massachusetts to allow what proponents label medical aid in dying “use linguistics or semantics to normalize assisted suicide by folding it into the language of compassionate end-of-life care.”
Sullivan said many understandably liken medical aid in dying to the bedside care hospice nurses provide. In reality, she said, palliative care “is very different from giving them a fatal dose of medication to put an end to it all,” she said. States that legalize the practice are devaluing life, she said — an ominous precedent at a time when suicide is spiking among youth, adolescents, and young adults.
What’s needed, Sullivan said, is earlier and universal referrals for palliative care, which is about more than pain management. “We want people to have good lives, despite their serious illnesses,” she said. That means helping them “on an emotional basis, on a physical basis, on a psycho-social basis, and, for many, on a spiritual basis.”
Falmouth retiree David Folger, who spent his career as an ocean geologist, began complaining of stomach pains in the fall of 2016. On his birthday in November, he went to the hospital emergency room and, after a battery of tests, was diagnosed with pancreatic cancer. His cancer was inoperable, and Folger died the following year at the age of 85.
His wife, Janet Simons Folger, is grateful for her husband’s long life, their five children, and four grandchildren. He was active till the end, she recalled, and in the last years of his life the couple toured South Africa together and canoed through the backcountry of Canada.
But in his final months, Folger declined rapidly. “He had a great life, but he was on the path to death,” Simons Folger said. “The doctor gave him four to six months, and he got three... He was not a complainer. [But] he would cry out in pain. Nobody should have to go through that.”
Simons Folger has only praise for her husband’s caregivers. “David had great medical care, he had great hospice care, but they could not make the pain go away,” she said. “Some pain can be unrelenting.” She’s now hoping Massachusetts will give others the option her husband never had.
Disability-rights advocate John Kelly, who lives in Boston’s Fenway neighborhood, is director of Second Thoughts Massachusetts, a group opposing what it calls “assisted suicide.” He’s also a quadriplegic who injured his spinal cord in a sledding accident 38 years ago.
Kelly, 64, has testified against medical aid-in-dying legislation and organized a rally against the appeal to legalize it through the Supreme Judicial Court. He condemns a “better dead than disabled” mindset he sees in those distressed about loss of control at the end of their lives.
“Proponents say it’s about pain and suffering,” Kelly said. “But it’s relatively privileged people’s response to their own disability and dependence on others.”
Folks with disabilities often grapple with a lack of access to health care and home care services, he said. “Everyone should receive effective palliative care,” he said. “But we also believe people should be able to stay in their home and have adequate care there. This is really a values discussion masquerading as a medical issue.”
Kelly is also highly skeptical of treating a physician’s six-month prognosis as an exact science.
“People have to remember that doctors are often wrong about predicting when someone will die,” he said.
Robert Weisman can be reached at firstname.lastname@example.org.