On polarizing end-of-life issue, what changes minds?
When he was younger, Sen. Gary Winfield didn’t spend much time thinking about whether people with terminal illnesses should be allowed to end their lives with help from doctors. But if he had, he figures, he would have been against it, influenced by his upbringing in a religious household.
Then he watched his mother die.
It was prolonged and painful. She received care in multiple hospitals, but it didn’t stop the pain. It made her question her fundamental beliefs.
“The pain made her beg to die,” Winfield said.
The experience changed Winfield’s perspective. He is now one of more than a dozen legislators pushing for a measure that would allow doctors to prescribe lethal medication to mentally competent, terminally ill patients who request it.
In the past two years, similar measures have been the subject of intense lobbying and emotional public hearings, but failed to make it even to a committee vote. The issue remains deeply polarizing. Almost everything about it is subject to debate – including whether the proper term is “assisted suicide” or, as advocates prefer, “aid in dying.”
As both sides try to make inroads with legislators, what will ultimately lead to a resolution – either a change in state law or a resounding setback? On an issue many people view based on personal experiences, what changes people’s minds?
The topic brings up both the fundamental question of whether it’s acceptable to help someone hasten death, and more practical questions about how – or whether it’s possible – to design a system that allows some people to get help ending their lives while avoiding any risk of misuse or abuse.
Those on both sides say many conversations with lawmakers now center on the latter.
Supporters often point to Oregon, which has allowed the practice for 17 years. They often frame it in the context of choice, an extension of the choices people are used to having in their medical care throughout life. And they emphasize the stories of people who watched loved ones die in agony or who have a deadly illness and say knowing they could choose how they die would bring peace of mind. They often cite the highly publicized story of Brittany Maynard, a 29-year-old California woman diagnosed with terminal brain cancer who moved to Oregon to end her life legally last year.
Opponents, meanwhile, work on raising doubts, arguing that no system is failsafe, that opening the door to help end people’s lives could leave vulnerable people at risk of harm or feeling pressured to end their lives out of fear of being a burden. Some of the staunchest opponents are people with disabilities who describe being marginalized by the health care system and who fear not being offered enough life-saving treatment.
They’re often arguing, in effect, that what might seem like a compassionate option in one person’s case cannot safely translate to public policy.
Support varies by race, education — and wording
Polls indicate that a majority of people support allowing terminally ill people to receive assistance ending their lives – but the results vary depending on how the questions are worded. In a 2013 Gallup poll, 70 percent of respondents expressed support when asked whether doctors should be allowed to end the life of a terminally ill patient by painless means if the patient and his or her family request it.
But when asked if doctors should be allowed to “assist the patient to commit suicide,” support dropped to 51 percent, while 45 percent of people said no.
And polling suggests significant differences in support based on people’s race, ethnicity and education level. A 2013 Pew Research Center survey – which used the term “assisted suicide” – found that 53 percent of whites approved of it, compared to 32 percent of Hispanics and 29 percent of blacks. Nearly 60 percent of those who had attended at least some college approved of such laws, but only 34 percent of those with a high school education or less did.
Quinnipiac University pollsters asked Connecticut voters earlier this month whether they supported or opposed “allowing doctors to legally prescribe lethal drugs to help terminally ill patients end their own lives.” Sixty-three percent supported it; 31 percent were opposed.
“This is the single most fascinating issue I’ve ever worked on,” said Peter Wolfgang, executive director of the Family Institute of Connecticut, which opposes the proposal. “It doesn’t break down along traditional culture-war lines: Left versus right, religious versus secular, pro-life versus pro-choice. You have to throw all those categories out the window when it comes to this issue.”
What changes minds
Stories are powerful in social movements. It was hearing stories of gay people’s experiences, of people realizing they had friends or family members who were gay, that helped propel support for same-sex marriage, said Sen. Beth Bye, D-West Hartford. The push for abortion rights didn’t have that, she noted.
This movement has stories.
“Probably way more people have a family member who’s really suffered at the end of their lives than did have a family member who’s gay,” said Bye, who supports the legislation.
And, Bye noted, end-of-life issues are not abstract to many lawmakers.
“If you look at the age of people in the legislature, a lot of us have aging parents and lived through some of those challenges with our own parents’ end of life,” she said. “There are stories that are very present with people here, watching people who are terminal.”
Winfield sees commonality with another polarizing issue, capital punishment. He was a major force behind successful efforts to repeal the death penalty, and said the way to make progress on issues like it comes down to having conversations that allow people to understand the perspective of those advocating a change. In this case, he said, that could mean talking about the experiences that shaped his view, watching his mother struggle as she died.
“I think if you can get them to understand, to go back to those moments, to feel those things, you can get them to at least recognize that this might be about something other than what was put up there, where we just wanted to get rid of all the disabled people,” he said. “This might have something to do with the impact that that experience had on us as individuals. It might have something to do with the impact they had on that person who we love.”
“If we can take them to that place, they may not agree with us, but they might be willing to listen,” Winfield, D-New Haven, said. “But again, what you are seeing is not people trying to take people to that place. You’re seeing people trying to battle them with information.”
Winfield said it’s important to address opponents’ concerns about needing safeguards, and said he thinks Connecticut’s proposals have included adequate protections.
This year’s bill would allow a physician to prescribe lethal medication to a patient deemed by two doctors to be mentally competent and to have a terminal illness that is expected to cause death within six months. The patient would have to make two written requests at least 15 days apart, signed by two witnesses who are not related to the patient and who don’t stand to benefit from his or her estate. Doctors must inform the patient about feasible alternatives, including palliative care, the availability of counseling, and the ability to rescind the request. Doctors who believe a patient might have a psychological condition that is causing impaired judgment must refer the patient to counseling to determine if he or she is competent to request what the bill refers to as “aid in dying.” Patients who take the medication would have to administer it themselves.
The proposal does not require any independent witnesses at the person’s death, a concern of opponents.
When conversations turn to the practical questions about how to design a system, it helps enormously that there’s data from Oregon, which has had a “death with dignity” law since 1997, said Tim Appleton, Connecticut campaign director for the group Compassion & Choices, which advocates for similar laws.
As of Feb. 2, 1,327 people had received prescriptions for lethal medications under the Oregon law, and 859 used it to end their lives.
“The great benefit of this issue for us is that this isn’t something brand new that no one’s ever tried before,” Appleton said. “This has been in practice now for 17 years in Oregon and it’s been tested there. And it’s passed that test.”
Trying to raise doubts
When asked what changes people’s minds on the issue, Catherine Ludlum came up with a list of 12 points.
“Different things will resonate with different people,” she said.
In some ways, opponents like Ludlum have a smaller burden: While advocates need to convince enough legislators – and the governor, who has not taken a position on what he calls a complex issue – to change the law, opponents can keep the issue from progressing by sewing doubts in the minds of enough lawmakers.
|Median age: 71|
|Two or more races||3||0.4|
|Less than high school||51||6|
|High school graduate||187||12.9|
|Baccalaureate or higher||392||45.9|
|Chronic lower respiratory disease||38||4.4|
|Less able to engage in activities making life enjoyable||758||88.7|
|Loss of dignity||579||79.3|
|Losing control of bodily functions||428||50.1|
|Burden on family, friends/caregivers||342||40|
|Inadequate pain control or concern about it||211||24.7|
|Financial implications of treatment||27||3.1|
But they often describe themselves as up against a better-funded effort, arguing against people with stories that are both compelling and relatable.
“One of the challenges of our side of the debate is that we need more time with people,” Ludlum said. “The other side can just go and see you and say, ‘Don’t you believe in choice?’ and you say, ‘Sure,’ and that’s the end of the discussion.”
Ludlum is one of the most vocal opponents of the proposal, a position rooted in her experiences. She uses a wheelchair and has extremely limited mobility because of a neuromuscular disease. She speaks of facing discrimination and inaccurate assumptions by medical providers – including a time when she was in the hospital and overheard the staff talking about her as if she led a tragic life in an institution (in fact, she lives in her own home and runs a consulting business). To her, it reinforced the risk that health care workers’ misconceptions about people with severe disabilities could lead them to offer less aggressive lifesaving options, or to assume patients with feeding tubes or ventilators don’t want to live that way.
The arguments she uses when trying to raise doubts largely center on potential unintended consequences of allowing people to receive help ending their lives and the difficulty of providing adequate safeguards.
Among them: Dire prognoses can be incorrect. If a limited bill passes, what if there are efforts to expand it, such as allowing people with dementia to receive help dying?
Ludlum pointed to studies that indicate as many as one in 10 seniors are victims of elder abuse. “If you’re introducing a deadly prescription into that family situation, where no one is going to be there to see what happens, you don’t know what happened,” she said.
She’s wary that the combination of tight funds for health care and social services and an inexpensive, quick way to die could push some people toward ending their lives.
And she noted that in Oregon, pain is not the major concern people cite when choosing to end their lives under that state’s law. Instead, the most common reasons are what she calls “all of these disability kind of fears.”
More than 90 percent of those who took the lethal medication cited losing autonomy; nearly as many cited being less able to engage in activities making life enjoyable, and nearly 80 percent cited loss of dignity. Forty percent cited concerns about being a burden on others. Just under 25 percent cited inadequate pain control or concerns about it.
Ludlum acknowledged that many people advocating for the law have been through terrible things, but she says there are alternatives: improving palliative care and support systems, and helping people deal with their fear of disability.
“I’m just not convinced that death is the answer to all of this,” she said.
While advocates say Oregon’s record shows a system can be workable and safe, opponents have cited cases they say involved questionable circumstances, including an 85-year-old woman with terminal cancer whose initial request for lethal medication was denied because of questions about her capacity to make the decision, but who ultimately received a prescription and died, according to The Oregonian newspaper.
And Ludlum worries that allowing people with terminal illnesses to end their lives could reinforce discrimination against people with disabilities, creating a system in which some people who consider suicide receive counseling to prevent it and others receive assistance dying – a distinction that she said could be shaped by people’s perceptions about disabilities.
“People say, ‘It’ll be fine; there’ll be safeguards,’ but how do you safeguard for all the things I’ve listed here, and possibly write it in a way that would make it completely foolproof and have people still want to use it?” she said.
Like Winfield, Stephen Mendelsohn, the research analyst and social media coordinator for Second Thoughts Connecticut, which opposes the bill, sees an analogy to the death penalty, but in a different way: some people support the concept, but don’t believe it can work in practice.
“There are people who believe that the ultimate crime deserves this ultimate punishment, yet have serious problems with the likelihood that an innocent person will be executed, with racial and socioeconomic disparities, with the cost of prosecuting capital cases through the entire appeals process, and other issues, and thus oppose the death penalty in practice,” he said.
Many people initially say yes when asked if they support allowing terminally ill people to receive help ending their lives, Wolfgang said, but that can change.
“Our experience is that most people say yes, until they learn more about it,” he said.
Many people inaccurately believe the issue is about not keeping people alive through extraordinary measures against their will – which is not the case, Wolfgang said. He frames it as licensing doctors to prescribe suicide as a treatment, and then granting legal immunity to those who help.
Advocates for the bill say the concerns raised by opponents haven’t come to pass in Oregon, and say it’s possible to design a system with appropriate protections.
When people raise more fundamental doubts about the issue, Appleton, who lobbies for the bill, tries to reframe it into a matter of individual choice.
“If it boils down to a fundamental disagreement about this issue, I respect that choice,” he said. “We just ask that our choices are respected as well.”
The legislature’s Judiciary Committee is holding a public hearing on the proposal Wednesday.
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