Assisted-suicide measure poses threat to poor and disabled, advocates say
By Evan Lips | October 26, 2015, 19:26 EST
BOSTON — Advocates for people with disabilities spoke out against an assisted-suicide proposal that would let Massachusetts doctors prescribe lethal drugs to the terminally ill.
The State House discussion in advance of a Tuesday hearing on the proposed legislation, organized by state Rep. Denise Provost (D-Somerville), gave John Kelly of Second Thoughts Massachusetts and other activists a forum to voice concerns about potential unintended consequences. If passed, they said, the measure could put at risk people with disabilities as well as members of low-income communities and minority groups.
“I’ve been told to my face, and many people have thought it in my presence, that they’d rather be dead than be suffering like me,” said Kelly, the director of the nonprofit advocacy group that has fought similar proposals in several states on behalf of those with disabilities.
Kelly, who is a wheelchair user and requires what advocates call a “sip-and-puff” tube to survive, is one of several witnesses expected to testify on the bill before the Joint Committee on Public Health.
Monday’s discussion focused partly on the history of physician assisted-suicide in Oregon, which in 1997 became the first state in the nation to legal the practice. Meghan Schrader of a group called ADAPT, a national advocacy organization for those with disabilities, described “systemic privilege,” which she described as “circumstances which the law cannot remediate,” as a major concern.
“Even though proponents put all these protections into the law you simply cannot apply those protections in the real world,” Schrader said. “It doesn’t matter what someone’s intentions are, we need to think about the social impact of this actual policy.”
Schrader talked about Barbara Wagner, a 64-year-old Oregon woman who relied on the state-federal Medicaid program for health insurance. She was diagnosed with lung cancer in 2008 and was denied a $4,000-per month drug prescribed by her doctor that may have extended her life. Instead, Oregon’s Medicaid administrators agreed to pay the $50 it would cost to obtain enough lethal medicine to end her life.
“She had to spend the last few months of her life fighting this systemically induced injustice of not being able to make her own decision because the state was in charge of her medical care,” Schrader said.
Schrader also took issue with Barbara Coombs Lee, director of the Compassion & Choices organization, a national end-of-life advocacy group that supports assisted-suicide proposals such as the one pending here.
“The compassionate choices director basically said Barbara Wagner and her doctor were foolish,” Schrader said. “It’s a very strange conception of justice to suggest that somebody who makes a medical decision, that contradicts what Barbara Coombs Lee thinks is a good idea, is making a foolish decision
“The idea of choice just doesn’t apply in less-privileged cases,” Schrader said.
Finn Gardiner, Boston community coordinator for the Autistic Self Advocacy Network, a nonprofit group, said the proposed law “would have a disproportionate effect on people of color and other more vulnerable populations.”
“Somebody who can afford a high standard insurance plan or is covered by their workplace is probably more likely to get a top-of-the-line cancer treatment as opposed to somebody who is on a state health plan,” Gardiner said.
Brian Shea of M-Power, a mental-health advocacy group in Roxbury, identified “doctor-shopping” as another concern.
“I have not made the best decisions when I’ve been experiencing depression,” Shea said. “What goes on in Oregon and other places is doctor-shopping. Family members can go around looking for a clinician who is more inclined to prescribe lethal doses of medication. If they don’t get the answers they want from one clinician, they can go to another one.”
Kelly pointed out that Compassionate Choices maintains a list of Oregon doctors who have prescribed lethal drugs to patients. He said that elder-abuse issues could also influence outcomes should the Massachusetts proposal become law.
“It gives free licenses to abusers and abusive heirs,” Kelly said. “When that form gets signed, there are no questions asked.”
But assertions that the Bay State proposal will adversely affect the disabled and other vulnerable people go too far, according to Marie Manis, Compassion & Choices’ Massachusetts campaign manager. She pointed to the way Oregon oversees implementation of its law.
“Death with dignity has been authorized in Oregon for the past 18 years with oversight and annual reports by the Oregon Public Health Division,” Maniss said by email in response to questions about the law. “There have been no reported cases of abuse or negative impact on vulnerable populations. In fact, the majority of patients that have used the law have been well-educated, insured and in hospice care.”
Manis also disputed depictions of Wagner’s plight. Manis referred to an ABC News account reporting how the Oregon Health Plan, before denying Wagner’s chemotherapy drug treatment, “paid for thousands of dollars’ worth of chemotherapy, radiation, a special bed and a wheelchair.” Manis also pointed to the limited benefits of the medicine Wagner sought, citing a 2005 New England Journal of Medicine study on Tarceva, the drug Wagner’s doctor had prescribed.
“The article states, ‘the median survival among patients who took Tarceva was 6.7 months compared to 4.7 months for those on placebo,’” Manis quoted from the study.
Tarceva did not meet the state health plan’s standards, Manis said.
“Be sure and attend tomorrow’s hearing as you’ll learn much more from the many people that support having this choice at the end of life,” Manis added.
In 2012, Massachusetts voters narrowly rejected a ballot measure that would have legalized physician-assisted suicide by a 51.9 percent to 48.1 percent vote. The current proposal was introduced in January by state Rep. Louis L. Kafka (D-Stoughton) as House Bill 1991, an “act affirming a terminally ill patient’s right to compassionate aid in dying.”
Kafka told the Lawrence Eagle-Tribune that he introduced the measure with the plight of a constituent, Al Lipkind, in mind. In 2009 Lipkind died after a lengthy battle with brain cancer.
Earlier this month, California became the latest state to make physician-assisted suicide legal, joining Montana, Washington and Vermont along with Oregon.
Tuesday’s public hearing is set to begin at 1 p.m. in State House rooms A-1 and A-2.