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For patients facing a terminal diagnosis with six months or less to live, the state Legislature is discussing whether or not those residents should have the ability to end their lives when they choose.
The bill, “An Act Relative to End of Life Options,” would allow, under very specific circumstances, the ability for those that are very sick to obtain a prescription for life-ending medication from a physician.
A process is proposed to be in place to ensure only those who want to use the law for the intended reasons get the medication. They would have to make a request to a physician, and meet certain criteria, including going through a 15-day waiting period, making a written request, and having the request approved by a mental healthcare professional.
They also cannot qualify for medical aid in dying just because of their age or a disability, among other criteria, according to the law.
The idea behind the law isn’t unique to Massachusetts. In fact, neighboring states Vermont and Maine have had such laws since 2013 and 2019, respectively. The oldest medical aid in dying law in the country went into effect in Oregon in the mid-1990s.
The Massachusetts proposed law was reintroduced to the Legislature in February. A hearing was held virtually on Oct. 1 by the Joint Committee on Public Health – where the bill was referred back in March.
A similar proposal was narrowly defeated in Massachusetts in a 2012 ballot question vote, and opinions remain deeply divided, with strong arguments both for and against the proposed law. Here’s a look at each.
In a recent virtual press conference, Peg Sandeen, executive director for Death with Dignity in Portland, Oregon, said that the laws have worked “flawlessly” in each of the states that have them.
“There is no abuse, no coercion, no fraud,” she said.
For those hoping the state will pass the law, it can’t come soon enough.
Lee Marshall, a retired nurse and psychotherapist in Gloucester, has been battling stage 4 metastatic breast cancer since 2018. She was first diagnosed with the disease in 2011 and underwent a mastectomy, and courses of radiation and chemotherapy.
Her care team believed she was cancer free, but then, about three years ago, she learned her cancer had metastasized and she had tumors in her brain, bones, liver, and lungs, she said during the press conference.
Since then, she’s gone through more chemotherapy only to have it cause unwanted side effects – nausea and vomiting, fatigue, cognitive changes, rashes, mouth sores, and lack of appetite, among others, Marshall said.
Her prognosis now is less than a year of survival, and she said she may be going into hospice care “very soon.”
It isn’t that Marshall wants to die, she said.
“I want more time to be silly with my husband, Paul, and my friends,” she said. “I want more time to dance, crack jokes, make pottery, and enjoy walks in nature. I thought I’d live to my 80s, but I probably won’t see 70. I’m terrified of lingering pain that will leave me with no pleasure in life and no option to say, ‘Enough is enough.’”
She pushed for the law to be passed, asking that lawmakers to “listen to terminally ill constituents, to their constituents who have seen a loved one die a needless, painful death, and to have compassion to pass the end of life options”
Michael Martinetti of Lexington has had a rare neuromuscular disease since the 1990s. It’s a disease that will shorten his life, he said during the press conference.
Currently in a power wheelchair, the disease “will eventually incapacitate me.” He also could have further spinal cord and peripheral nerve degeneration, and could get diabetes and heart disease, including cardiac failure and enlargement of his heart. He said those things are already beginning.
The proposed law, he said, protects people with disabilities, like him, from being coerced, noting that having a degenerative or chronic disease, being in a wheelchair, or using a ventilator isn’t enough to qualify if you aren’t also terminally ill.
“The end of my life will be difficult,” he said. “I want the autonomy and freedom to make my own decisions.”
Lawmakers acknowledge that not everyone will want to use this law.
“This bill is not for everyone,” state Rep. Ted Phillips of Sharon, a co-sponsor who drafted an earlier version of the bill, said during the press conference. “We have worked very, very hard over the years to make it very clear in the legislation that there is no ambiguity over who this bill affects, that this decision cannot be made for you, that this decision is yours alone.”
But not everyone in the state is convinced the proposed law would be a good thing if passed, and some think better care is what should be provided to people nearing the end of their lives, rather than medical aid in dying.
Dr. Laura Petrillo, a palliative care physician at Massachusetts General Hospital, notes that the law would “essentially decriminalize” a doctor giving a patient life-ending medication.
She noted that she was practicing in California when the state passed its medical aid in dying law. Those involved with creating the law considered it carefully – Petrillo said she attended many meetings to discuss the law before it was passed there.
“I would say the main reason we took this so seriously is because it’s a dramatic shift in how medicine is practiced, something none of us has ever done, to intentionally end a life,” she said in a virtual press conference arguing against passage of the proposed law. “There’s a lot of misconceptions about what hospice and palliative care are, but we don’t intentionally end lives in our practice, and it profoundly affects everyone involved. It touches on deeply held beliefs and is irreversible.”
Physicians there felt medical aid in dying should be a “last resort” compared to “high quality end-of-life care.”
In the current pandemic-focused world, healthcare systems are stretched thin and “the public perception of science and medicine is more fraught.”
“It’s a really tough time in healthcare speaking from the inside, and many people are hanging on by a thread, and our collective capacity for absorbing more challenges is limited,” she said. “That is why it’s literally the worst possible time for the End of Life Options Act.”
Petrillo also described the inequalities that the pandemic has laid bare.
“The pandemic has also made extremely clear that biases — like ageism, ableism, and racism — are present in every aspect in society, and especially medicine, and affect not only how people feel about their responsibility to each other in a public health sense but they also lead to disparate health outcomes including mortality,” she said.
Petrillo pushed for “better end-of-life care.”
“We’ve made a lot of progress in recent years in increasing communication about end-of-life preferences,” she said. “There’s much more to do to ensure that people have access to high-quality medical care period, but especially end-of-life care, and resources to have care that’s aligned with their goals at the end of life.”
John Kelly, a disability advocate based in Boston who is paralyzed from the shoulders down, also pushed for better end-of-life care, especially at home.
“Massachusetts should instead fully fund home care for everyone so that no one has to rely on unpaid caregivers and face the prospect of a nursing home or [medical aid in dying],” he said. “Massachusetts should provide world-class palliative care. Equality under the law depends on it.”
On behalf of the League of United Latin American Citizens, Maria Rivera Brown said the group doesn’t support medical aid in dying, noting that “we’ve dealt with healthcare disparities for many, many years.”
“We believe that medicine should be about prolonging life, not ending it,” she said. “We feel that they have no right to actually predict when someone is going to die. All patients deserve the best treatment options and recovery care.”
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