By Claudia Chiappa
Boston University Statehouse Program
BOSTON – Massachusetts is once again considering aid-in-dying bills, proposed legislation which has historically divided the state – and the country.
Two bills introduced in the Statehouse reopened the conversation earlier this year, sparking energetic testimony. Considered by many a morally controversial topic, physician-assisted death remains nonetheless a highly debated issue all over the world.
Several countries worldwide have laws which either fully or partially allow doctors to assist patients with end-of-life options. As of 2021, 10 American states and the District of Columbia have passed legislation allowing some level of doctor-assisted death. This includes two Massachusetts neighbors, Vermont and Maine. New Jersey was the latest state to adopt aid-in-dying legislation in 2019.
These types of laws come with many names: “death with dignity”; “right-to-die”; “aid-in-dying.” And just as their names differ, so does their content. But they are all based on the same principle: sane, consenting adults with terminal conditions should have the option to end their lives.
“We only get one death, each of us,” said Peg Sandeen, Executive Director of Death with Dignity in Portland, Oregon. “And that’s why I believe in making sure that we have the autonomy and a number of decisions to have as much control that we can have at the end of life.”
Oregon’s Death with Dignity Act of 1996 is seen by experts as a blueprint for many of the state laws. The legislation passed narrowly, with 51%, making Oregon the first American state to allow physicians to prescribe aid-in-dying medications.
“It has worked flawlessly,” said Sandeen. “What we’re doing is granting a right to one group of individuals but harming no one else.”
In Massachusetts, 70% of state residents support medical aid-in-dying, according to a 2020 poll conducted by the Boston Globe and Suffolk University. According to the same poll, 74% of those polled said they would want doctors to stop treating them if they had an incurable disease and were in “terrible pain.”
Yet the state Legislature has rejected multiple attempts to introduce “death with dignity” bills over the years.
Over the last two decades, several bills to legalize physician assisted death were introduced. The most recent attempt to bring Massachusetts up to speed with other states was in 2020. Those bills advanced from the Legislature’s Committee on Public Health in May 2020, but ultimately did not pass during the legislative session.
Prior to that, a ballot measure to legalize aid in dying was narrowly defeated at 51% to 49% in the 2012 general election.
In March, two new bills were introduced: H. 2381, sponsored by Rep. James O’Day, D-West Boylston, and Rep. John Mahoney, D-Worcester, and S.1384, sponsored by Sen. Jo Comerford, D-Northampton. This bill is sponsored by 84 members of the Massachusetts Legislature, with 67 House members and 17 senators. A hearing was held virtually Oct. 1 by the Legislature’s Committee on Public Health.
“Those are big numbers,” said Comerford, Senate chair of the committee. “That represents both a cohort of legislators who are tuned in but it also represents a great advocacy community, asking us to pay attention.”
The bill would allow eligible adult Massachusetts residents to receive aid-in-dying medication from a doctor, but only after following a series of steps. Before a patient can request the medication, which must be submitted in writing, they must consult with a physician and a licensed mental health professional. They must also be able to take the aid-in-dying medication themselves.
The process is often lengthy and structured to ensure patients who gain access to the medication have been cleared by several physicians and mental health professionals. They also require the patients to have a prognosis of six months or less to live in order to be eligible and wait periods in between requests.
“There’s nothing cavalier about the work on this bill,” said Comerford.
One of the most recent provisions added to the bill ensures that people who would financially benefit from the death of the patient, such as family members, are prohibited from witnessing the decision. This is only one of the many provisions legislators have woven into the bill in an attempt to ensure patients are protected.
“There’s two big misconceptions,” Comerford said. “One is that people don’t understand the very, very, very, very, very, very, very narrow cohort of people for whom this would be applicable…. And then they also haven’t read the version of the bill I filed and that we’re actually talking about with layers of protections in it.”
While these compromises are well-received by some, other proponents fear that it may reduce its accessibility.
“Medicine is not politics,” Sandeen said. “Medicine is medicine. And so we want to make sure you know, if there’s any sort of compromise that goes on legislatively, that we still have a process that patients can navigate and patients get access.”
A 2020 Gallup poll found that 61% of Americans supported doctor-assisted death for patients living in severe pain with an incurable disease. While over 60% of Americans supported the practice, only 51% of the respondents said they thought it was “morally acceptable.” The poll, which was conducted via phone in May 2020, surveyed a total of 1,028 adults living in all U.S. states and has a margin of sampling error of plus or minus 4%.
At the October hearing, many who spoke in favor of the bill shared personal stories and reiterated that the bill ultimately boils down to giving people a choice.
“If there’s one thing that binds us all together, it’s our mortality,” Rep. Jake Oliveira D-Ludlow, said during the hearing. “The one thing we all face is end of life. These two bills provide options to the individuals as we face end-of-life options for people with terminal illnesses.”
Having this option is often enough comfort for patients, even if they ultimately decide not to take the medication.
States with aid-in-dying laws are required to publish annual statistical reports about the physicians and the patients. Surprisingly, according to Death with Dignity and these reports, around one-third of the people who obtain the medication ultimately never take it.
“What we’ve learned is that for some people, the medication is simply peace of mind,” Sandeen said. “It’s about having just one more choice when you’re terminally ill, just one more option.”
But while public support and a growing number of legislators seem to overwhelmingly support the bill, the opposition is not scarce either.
John Kelly, director of the disability rights group Second Thoughts Massachusetts and New England Regional Director of Not Dead Yet, said his organizations have been fighting against aid-in-dying bills for years.
“The proponents say that it’s about pain and suffering,” said Kelly. “But it’s almost never about pain. It’s about dignity and control.”
Terminology has been a focal point for many of the discussions surrounding aid-in-dying laws. Sandeen said that terms such as doctor-assisted suicide are often used as tactics to scare the public.
“The opponents’ messaging is all about trying to scare people away from it,” Sandeen said.
But the critics often reject the idea of “death with dignity.”
“The words of dignity, mercy, compassion are used to disguise the taking of one’s life, suicide,” Rep. Alan Silvia, D-Fall River, said during the hearing.
A recurring concern from the opponents is that the choice to end one’s life, while marketed as an individual one, is never truly individual, as people can experience pressures from friends and family. People who seek to end their life, said Kelly, do so because they fear being a burden or because they are upset about losing “dignity and social status.”
Ruthie Poole, president of M-POWER, a statewide organization made up of people with “lived experience of mental health diagnosis, trauma, and addiction,” testified that the bill would disproportionately affect people with mental health.
“Suicide contagion is real,” Poole said. “Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems. It isn’t.”
Kelly, who has been paralyzed below the shoulders since his 20s, said that the prejudice stacked against people with disabilities and social situations are driving these bills. If passed, he said, they would only reinforce the idea that a life as a disabled person is a life not worth living.
“People who have spent their whole life identifying as able, when they become disabled, they use the same prejudice that they applied against others to themselves,” Kelly said. “Because in this country, if you’re disabled, you’re seen as less than.”
Many opponents of the bill argue that the focus should be on providing better end-of-life care, rather than death. In particular, they noted the COVID-19 pandemic highlighted the disproportionate care received by communities of color and the disability community.
Focusing on providing better choices includes providing financial support to the patients, providing home care, and ensuring they do not have to rely on their families at the end of their lives.
“As palliative care experts say, there’s always more that you can do,” Kelly said. “What we think is that palliative care should be improved and everyone should have the same rights to counseling, spiritual guidance, pain relief.”
The fear that patients would choose to end their lives for the wrong reasons is a recurring argument from critics of the bill. Dr. Lachlan Forrow, Senior Fellow at the Harvard Medical School Center for Bioethics, past Chair of the Massachusetts Expert Panel on End of Life Care, and a member of the Coordinating Committee of Dignity Alliance Massachusetts, has spoken extensively about the issue, testifying both in 2019 and 2021.
Forrow said the focus should be on ensuring that patients have reliable access to other end-of-life care options, so that they do not choose to end their lives because it is the “last resort” option. As the bill stands right now, he said, it would be “grossly irresponsible” to pass it.
“While it is true, and unconscionable, that far too many people in our commonwealth today nearing the end-of-life experience uncontrolled pain or other physical and emotional suffering, and far too many experience a profound loss of their human dignity, the idea that the solution to these problems is to assist them in ending their lives is seriously misguided,” Forrow said during his testimony.
But Comerford said the two are not mutually exclusive.
“I truly, with all my heart, believe that our work to provide that option for people who are terminally ill does not in any way obscure or preclude the work to advance health equity for individuals in the disability community or for people of color,” Comerford said. “They are not mutually exclusive. We don’t get one and not the other.”
Comerford said she intends to make the bill a priority during the next legislative session. And while the outcome is hard to predict, the reopening of the years-long moral and ethical conversation is bound to dominate the discussions around the bill in the months to come.