Aid in dying bill framed as question of choice

  • Former NPR talk show host Diane Rehm recounted the story of her late husband, who suffered from Parkinson's disease and died after starving himself for 10 days. Rehm testified in support of aid-in-dying legislation before the Public Health Committee alongside Rep. Dylan Fernandes of Falmouth. SHNS/Sam Doran

State House News Service
Published: 6/26/2019 11:54:25 AM

BOSTON — Massachusetts lawmakers are once again debating the ethical questions around medical aid in dying, and advocates turned out in droves Tuesday to make their voices heard with emotional testimony from both sides of what’s become a perennial public policy issue.

“Everyone must be allowed to make their own choice based on their own beliefs,” said Rep. Louis Kafka of Stoughton, the sponsor of legislation to legalize medical aid in dying.

Seven years after the idea was narrowly defeated during a statewide vote, Kafka has again filed legislation to legalize medical aid in dying – referred to by some as medically assisted suicide or by others as death with dignity. The Joint Committee on Public Health on Tuesday held a public hearing on the legislation, which Kafka said has been updated to address concerns he heard in past years.

“For more than a decade now I have fine-tuned the End of Life Options Act, by listening and exploring the concerns articulated during hearings for previous versions of the bill,” he said.

Kafka was inspired to first file the legislation after a constituent who was dying from stomach cancer, Al, reached out to his office.

“I continue to file the bill because I feel Al and many people like him deserve the choice of how they end their life,” he said. “I don’t know if Al would have in the end have taken advantage of the legislation, but he should have had that option.”

The bill outlines the process of requesting medicine that would aid death. First, the terminally ill patient must bring up the topic with their doctor; it cannot be recommended by the doctor. The patient must also be determined by a second doctor to be terminally ill, and meet with a mental health professional who must confirm that the patient is not seeking the option due to mental health conditions. The patient then must submit a written request, that must be made with two witnesses, one of whom must not be a relative.

Opponents of the bill say that the proposed process will not actually catch patients with mental health problems, calling the measures “laughable.”

Ruthie Poole, president of the board of M-POWER, a grassroots organization for people with lived experience of mental health diagnosis, trauma, and addiction spoke against the legislation. It is unreasonable to expect a therapist to make the decision as to a patient’s mental health after only one visit, Poole said, especially if the patient is suicidal, and would actively wish to deceive the counselor to get approval.

“Personally, as someone who has been very suicidal in the past I can really relate to the desire for a painless, easy way out,” Poole said. “However, depression is treatable and reversible and I’m living proof of that. Suicide is not.”

Passing the legislation would run counter to suicide prevention efforts, she said, calling it a “slap in the face.”

“Any assisted suicide bill will send a message to people, in mental distress old, young, physically ill or not, that suicide is a reasonable answer to life’s problems,” Poole said. “It is not.”

The bill also defines a terminally ill patient as someone who is reasonably expected to not live longer than the next six months, and specifies that a person cannot qualify for aid in dying solely because of age or disability. In addition, if a patient has a legal guardian, they also do not qualify.

Diane Rehm, a radio show host for National Public Radio, spoke about her husband, who passed away from Parkinson’s disease. He had been in hospice but had lost much of his autonomy. Rehm said he asked his physician about options and was told the only way to shorten his suffering was to stop eating, drinking, and taking medication. So he did.

“It took ten long days for him to die,” Rehm said. “I was there with him watching him grimace but knowing that he didn’t want to be stopped on the path he was on. In the end he died a very painful elongated death which I will never ever forget.”

Several states have legalized medical aid in dying, including California, Colorado, Montana, Oregon, Vermont, Washington and Washington, D.C.

Opponents of the bill predicted that if the bill is approved, low-income people, people of color and disabled people would be targeted.

“The end of life options act may sound good with its ideal of person in control choosing when to end their suffering, but in reality for far too many people, it functions like a death penalty,” said John Kelly, the director of Second Thoughts Massachusetts, a disability rights group.

Others echoed Kelly’s concerns.

Kristen Hanson, community relations advocate at the Patients Rights Action Fund, became involved in the issue after her husband, JJ, was diagnosed with terminal brain cancer. Although the first three doctors the couple went to said there was nothing that could be done to treat JJ, they persevered, and he lived for several more years.

JJ became involved with the fight against medical aid in dying after his diagnosis, and Hanson continues his work now. But even though he was opposed to medical aid in dying, he told Hanson that if he had access to the medication early in his diagnosis when he felt like a burden to his family, he might have taken it.

“Assisted suicide laws abandon vulnerable patients like JJ, who can experience depression at any point following their illness,” Hanson said. “Once patients receive the prescription they’re on their own. There’s no requirement for a doctor to follow up on them. Worst still, assisted suicide injects governmental pressure and profit-driven insurance decisions into everyone’s end of life care.”

In 2012, the issue went to the ballot and was defeated with 48.9 percent in favor and 51.1 percent against, although proponents said the ballot question did not have the process that is outlined in the latest version of the bill.

Last session, the bill was sent to study in March 2018, effectively killing it. But proponents also have new hope after the Massachusetts Medical Society changed position on the issue last session. After opposing the option for many years, in December 2017 the society changed its position and adopted a neutral stance.

Signhild Tamm, from Falmouth, who supports the legislation, spoke about her personal experience. She was diagnosed with stage four pancreatic cancer just before her 74th birthday, a “death sentence.” Tamm said she didn’t want to spend the end of her life dealing with hospital visits, complications and side effects, and instead chose to go into hospice care. She said she can only hope that she will have peace and comfort before she dies.

“As I’m speaking to you I can feel the pain, I feel the cancer growing in me, and hurting me, killing me,” Tamm said. “It would be an immense relief if I knew I could choose to end my suffering in consultation with my doctor. If this ultimately becomes law in Massachusetts it will be too late to help me but it is certain to help others like me.”

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