Testimony in Opposition to H 1998, December 17, 2013
John B. Kelly, Boston
I must point out that many of our supporters are unable to be here today because the Commonwealth, cities and towns do not invest the resources to clear the sidewalks and curb cuts they own. Being stuck inside for days on end without relief is another way that disabled and older people get the message that we are not as valuable as other people. If we were as valued, the sidewalks would either be clear or the hearing would be postponed.
Thank you, Chairs Keenan and Sanchez, Members of the Committee. My name is John Kelly and I am the Director of Second Thoughts Massachusetts.
We chose our group name, Second Thoughts, because we found that the more people learned about legalized assisted suicide, the more they opposed it. Last year, one month before the election, polls showed 68% support for Question 2, against only 20% opposition. Proponents predicted that Massachusetts would be viewed once more as a health care trailblazer, this time leading the way in assisting suicides.
In response, we formed a broad-based coalition, as progressive disability rights advocates came together with the Mass Medical Society, the Massachusetts Hospice & Palliative Care Federation, and health policy advocates. Second Thoughts expanded to include the Autistic Self Advocacy Network and MPOWER, along with independent living centers and the Disability Policy Consortium.
Last year, lead proponent Doctor Marcia Angell told WBUR that Question 2 was all about allowing terminally ill people, “to die more peacefully if they find their suffering has become unbearable. It is not a choice between life and death, it’s a choice between the kind of death, it’s a choice of the exact timing and manner of death. Because these patients are dying,” she emphasized.
But the argument collapsed in the face of reality. Voters realized that a terminal diagnosis is guesswork. Everyone seems to know someone who was once terminal. Many people in the disability community have been assigned a terminal diagnosis, some of us our entire lives. It’s actually a joke among us! Moreover, at least one out of six people admitted to a hospice get discharged without dying.
So voters were ready for the message of Victoria Kennedy, whose op-ed in the Cape Cod Times helped seal defeat for Question 2. Vicki revealed that her husband Teddy had been given 2-4 months to live. He was told to wrap up his affairs, to kiss his wife and family goodbye. Yet he lived 15 more productive, meaningful months, casting important votes and seeing inaugurated his choice for president. Vicki said the assisted suicide bill turned Kennedy’s vision of health care for all on its head by asking us to endorse patient suicide — not patient care — as our public policy for dealing with pain and the financial burdens of care at the end of life. We’re better than that. We should expand palliative care, pain management, nursing care and hospice, not trade the dignity and life of a human being for the bottom line.
Voters also learned that the type of suffering Marcia Angell was talking about was not pain, not actual physical pain. Pain is a medical problem that palliative care can solve. As palliative care expert Ira Byock has testified,
If I thought lethal prescriptions were necessary to alleviate suffering, I would support them. In 34 years of practice, I have never abandoned a patient to die in uncontrolled pain and have never needed to hasten a patient’s death. Alleviating suffering is different from eliminating the sufferer. Allowing a person to die gently is importantly different from actively ending the person’s life.
In recognition of this fact, when the New England Journal of Medicine held an online poll earlier this year, it’s invented case was a man with metastatic pancreatic cancer, whose pain was well-controlled. Two thirds of respondents opposed legalization.
No, the suffering being talked about is emotional and social. As Dr. Angell wrote to the Herald last year, “dying sometimes involves great personal indignities, as well as mental distress from the realization that the situation can only grow worse.” In other words, “Death with Dignity” means avoiding the emotional experiences of indignity and mental distress.
Questionnaires filled out by prescribing doctors in Oregon confirm that the driver for assisted suicide is mental distress. More than half of people in Oregon are reported as turning to suicide because of “loss of control of bodily functions,” in other words, incontinence that they could not clean up themselves. Last year, 57% of suicides were reported as turning to suicide because of “burden on family/caregivers.”
We disabled people live with incontinence, I live with incontinence, so must we ask whether we have dignity? We insist that we do, rooted in our 40 years strong independent living movement, proudly enshrined in the Americans With Disabilities Act. So I agree with Vicki Kennedy, this bill is an insult.
The state has absolutely no interest in privileging one moral view of dignity over another, unless it wants to uphold the inherent dignity of all of us. Some people think that dignity is something that can melt away, leaving death the preferred alternative. These people, proponents admit, tend to be wealthier, better educated, and people with a strong preference for control. This is presented as a good thing.
Assisted suicide proponents are overwhelmingly white. 97.6% of program suicides in Oregon have been white, in a state 22% nonwhite. The Pew Research Center found earlier this year that, while whites support assisted assisted suicide 53%-44%, black and Latino voters register 65% opposition. The election map for Question 2 revealed these same trends. We have a public health problem, but it isn’t certain people’s lack of dignity, it’s the turn to suicide as a social solution by a powerful social class. Legalizing assisted suicide would only entrench this suicidal tendency as the preferred social norm.
Reject this bill and the discrimination it promotes.