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March 29, 2017

Assisted suicide debate raises questions about how we die

Michael Adams, a hospice patient who died in March, believed physician-assisted suicide should be an option for the terminally ill, even though he wasn't seeking it.

Since 1995, when the issue first came to it, the Massachusetts Medical Society (MMS) has opposed legally allowing terminally ill patients to get a prescription to end their lives at a time of their choosing. It’s taken that position each time the issue has come up in the state Legislature, and when it went to voters as a ballot question in 2012.

This year, the group is bringing the question to its members again, surveying doctors across the state to see whether they want to change that position. This follows a lawsuit filed against the Massachusetts Attorney General by a Falmouth cancer patient, who is a physician, and his doctor, for legalized physician-assisted suicide. Attorney General Maura Healey has asked a judge to dismiss the case, saying it should be decided in the Legislature.

“As we looked at it, we discovered it was incredibly complex,” said Dr. James Gessner, president of the MMS.

The group needs to make sure to reach a representative sample, including not just people who have strong feelings one way or the other, but the many physicians who are ambivalent about it.

The survey will ask about terminology as well. Gessner said members need to think hard about verbiage: Some people worry that “physician-assisted suicide” evokes an image of patients with depression or other mental health problems. Others don’t like the phrase “medical aid in dying,” because that could describe services doctors have always provided to ease suffering in patients’ final days.

Gessner said the question is a tricky one for doctors, whose first promise is to do no harm, and who can rarely be sure of how long a patient has left to live or what their quality of life will be at the end.

Yet focusing too much on the specifics of a proposed Massachusetts law—which has been introduced into the Legislature again this year—risks missing the big picture around end-of-life care, Gessner said.

“This is just one little piece that may affect a very small number of people that are near the end of life,” he said.

Patient perspective

Michael Adams, a Pepperell resident who died of terminal cancer in March, was one of those affected people. Adams offered his perspective just days before his death, when he was receiving hospice care at home.

The 69-year-old Adams was happy with the care he was receiving from Framingham-based Brookhaven Hospice, and said people who are facing terminal illness should strongly consider hospice care; it allowed him to live out his final days peacefully, surrounded by family and his beloved dogs. But, noting that he had been able to keep his pain mostly in check and had support from his wife and daughter — both nurses — Adams said people ought to be able to choose physician-assisted death, too.

“We should have that option,” Adams said.

Central Massachusetts health professionals who work with patients near the end of their lives are split on the question of medical aid in dying. But people on all sides of the question agree that the debate points to something bigger: the need for all of us to confront questions about our own deaths.

To Michele Clayborn, director of operations for Brookhaven Hospice, the goal of end-of-life professionals is to help patients reach a natural death without intense suffering.

Clayborn said some people facing unbearable symptoms, repeated hospitalizations, and intense, unpleasant medical interventions may see ending their lives as a better option. To her, though, the kind of death that would be legalized by the proposed state legislation is inhumane—letting people end their lives by swallowing pills, perhaps alone with no support.

In contrast, she said, hospice care can almost always allow terminally ill patients to end their lives in a place of their choosing, with loved ones around them, without symptoms like intense shortness of breath or excruciating pain. In these scenarios, she said, families are often able to share meaningful last moments with their loved one.

“It’s amazing to be witness to, regardless of your faith tradition,” she said.

Suzana Makowski, a hospice and palliative care physician at UMass Memorial Medical Center in Worcester, sees physician-assisted suicide as a matter of individual choice, something she saw up close when her father, whom she described as a “pragmatic” European immigrant, died last year.

When he was diagnosed with pancreatic cancer, Makowski said, he was already living with a pacemaker, and he decided to have it turned off rather than face a slow death from the cancer.

“He was very clear about ‘I love life, but I don’t want to live in a way that for me robs me of my dignity, my integrity, my personhood,’” she said.

Makowski said that in Oregon, which legalized medical aid in dying in 1997, fewer than half the people who receive a prescription for fatal drugs end up using them. She said simply having the option available tends to encourage conversations that don’t happen here.

“What I’ve seen happen now between patients and doctors is patients are sometimes afraid to ask the doctor out of fear that they’re asking them to be complicit in something illegal,” she said.

Growing support

The question of physician-assisted suicide became the subject of national conversation in 2014, when Brittany Maynard, a 29-year-old California woman diagnosed with brain cancer, became a spokeswoman for the issue. She ended up moving to Oregon so she could legally end her own life. The following year, California legalized the process.

Even if the MMS survey finds that physician opinion has shifted within Massachusetts, it’s not clear how the issue will play out in the Legislature. Rep. Anne Gobi (D-Spencer) supports legalizing the process. Her position is part of her pro-choice orientation, she said. But Gobi said she doesn’t know if the Legislature, which has voted down these kinds of laws in the past, will change.

To some opponents of the law, the notion of supporting choice for the terminally ill is complicated by societal judgements. Paul Spooner, executive director of the MetroWest Center for Independent Living in Framingham, said he sees the language of “death with dignity” devaluing people who need help with basic functions like using the bathroom.

He said he worries that the attitude that death might be better than indignity, or being a burden to others, can create a slippery slope. Spooner said he thinks encouraging people to work through the aversion that many have to the idea of declining health as we reach the ends of our lives is crucial.

“It’s fear, it’s loss of dignity,” he said. “We don’t talk enough about death in our current country.”

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