February 4, 2014
The Honorable Marjorie Smith
New Hampshire House Judiciary Committee
In Opposition to HB 1325
John B. Kelly
JKelly@NotDeadYet.org
On behalf of Not Dead Yet and Massachusetts Second Thoughts
www.notdeadyet.org www.second-thoughts.org
Chair Smith and Members of the Committee:
Thank you for the opportunity to testify. My name is John Kelly, and I am the New England Regional Director for Not Dead Yet, the national disability rights group that has long opposed euthanasia and assisted suicide. I am also the director of Massachusetts Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide. We were the progressive voice in Massachusetts that defeated the assisted suicide ballot question. Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not. Drawing on those same principles, we supported the ballot question for medical marijuana.
We chose our name Second Thoughts because we find that many people, once they delve below the surface appeal of assisted suicide, have “second thoughts” and oppose it. In Massachusetts a month before the election, 68% of Massachusetts voters supported the ballot question. But upon closer look at the real-world threats the legislation posed, voters had serious “second thoughts.”
These laws draw on shoddy science to create bad public health policy. They enact a government recommendation that doctor-prescribed suicide is sometimes the best treatment. Innocent people who are not terminal and are not making a voluntary and informed choice will lose their lives as a result.
Because as we all know, doctors make mistakes. Under HB 1325, a misdiagnosis becomes deadly. In a 2011 letter to the Boston Globe, Oregonian Jeanette Hall wrote that she voted for “death with dignity” in her state, and when she received a terminal diagnosis, asked for a lethal prescription. “I didn’t want to suffer,” she wrote. Fortunately, she had a doctor who persuaded her to try more treatment. Now, more than 13 years later, she wrote that she is “so happy to be alive.”
We have the example of longtime proponent of universal healthcare, Senator Ted Kennedy, who was diagnosed with aggressive brain cancer in 2008. His widow Victoria described his story in a powerful opinion piece that helped seal defeat for the Massachusetts referendum.
“When my husband was first diagnosed with cancer,” she wrote, “he was told that he had only two to four months to live, that he’d never go back to the U.S. Senate, that he should get his affairs in order, kiss his wife, love his family and get ready to die. But that prognosis was wrong. Teddy lived 15 more productive months.”
Under this bill, someone in New Hampshire receiving a similar diagnosis could be dead in 15 days, based on the tragically mistaken belief that death was imminent. Legalized assisted suicide, Vicki Kennedy wrote, “turns 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.”
In this age of induced austerity, the media is full of stories of the medical expenses of people’s last year of life. As social scientist Thomas Edsall wrote last year in the New York Times, “Throughout the country, often with the active support of state governments, adults of all ages, but especially the elderly, are under mounting pressure to sign cost-saving advanced directives, allowing hospitals and doctors to end intensive procedures at various end-of-life stages.” He includes assisted suicide in the same context. It is not a coincidence that Compassion & Choices’ Barbara Coombs Lee was previously employed as an HMO executive.
In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying coverage for prescribed chemotherapy. The letters noted, however, that the state would cover the $100 cost of suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. This will actually end up constraining choice.
Vulnerable people will be harmed by this bill. Oregonian Michael Freeland easily obtained a lethal prescription for his terminal diagnosis, despite a 43-year history of severe depression, suicide attempts, and paranoia. Fortunately, other doctors and counselors intervened to address his real needs and he died a natural death about two years later. When this story came to light, the prescribing doctor said he didn’t think a psychological consult was “necessary.” Oregon’s statistics for the last four years show that only 2% of patients were referred for a psychological evaluation. Experts agree that most doctors are not capable of identifying such psychological problems.
And if one doctor declines to approve of a prescription, families can simply go “doctor shopping.” So when a consulting psychologist found that Oregonian Kate Cheney lacked the “level of capacity” necessary to weigh her options, and that Kate’s daughter was pushing harder for suicide than she was, the angry daughter got the insurance company to fund a second opinion. The second psychologist had the same concerns, but ruled that Kate was competent anyway. On the day that she got back from a nursing home stay as respite for her family, Kate suggested that she take the lethal overdose. Her family facilitated her death that same day. Choosing between a nursing home and a family who sees you as a burden is not a true choice.
There is nothing in this or any other assisted suicide bill that can protect people who are being abused. Every year in New Hampshire, it is estimated that there are over 26,000 reported and unreported cases of elder abuse. No independent, disinterested witness is required when the lethal dosage is taken, which means that the stipulation that someone “must” self-administer the drug is merely a recommendation. These bills take no notice of how self-interest can motivate family members and caregivers. Because of the typical provision in these laws that death certificates list the cause of death as the underlying illness, investigations are foreclosed.
In Oregon, the Associated Press reported last year, “Tami Sawyer also faces charges of criminal mistreatment and theft as a result of a state charge that she stole more than $50,000 after a man who suffered from Lou Gehrig’s disease moved into her home, named her his estate trustee, deeded his home to a trust, and then died by physician-assisted suicide.” Two days after Thomas Middleton died, Sawyer listed the property for sale and deposited the sale money into one of her own accounts. This story came to light, not through any assisted suicide program safeguards, but through suspicious real estate transactions.
Americans place tremendous value on individual, autonomous choice, whereas policy makers must recognize the social realities that affect people’s health and healthcare decision-making. When people become ill and dependent, their desire to live or die is affected by the level of support they receive. Of course this is true!
Oregonian Kathryn Judson wrote of bringing her seriously ill husband to the doctor. “I collapsed in a half-exhausted heap in a chair once I got him into the doctor’s office, relieved that we were going to get badly needed help (or so I thought),” she wrote. “To my surprise and horror, during the exam I overheard the doctor giving my husband a sales pitch for assisted suicide. ‘Think of what it will spare your wife, we need to think of her’ he said, as a clincher.” We are social creatures.
We already see innocent people feeling pressured and pushed towards assisted suicide for the sake of their family. Last year in Oregon, 49% of assisted suicide users were reported as feeling like a burden on family and caregivers.
As proponents themselves admit, and as Oregon’s physician reporting form demonstrates, it is social factors that make up the suffering this bill talks about. Doctors report people choosing suicide because of loss of dignity, loss of autonomy, and loss of control of bodily functions. It is not about pain.
Pain is a medical problem that palliative care can solve. As palliative care expert Dr. Ira Byock, formerly of Mary Hitchcock hospital 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, its invented case was a man with metastatic pancreatic cancer, whose pain was well-controlled. Two thirds of respondents, by the way, opposed legalization.
We disabled people have lives that frequently look like the lives of people requesting assisted suicide, but we reject as bizarre the notion that personal dignity is somehow lost through physical dependence on others, or because we are not continent every hour of every day. We already encounter massive prejudice in the medical care system, which is all too ready to have us die without treatment. I know many people with disabilities living vibrant, active lives contributing to the community who have been encouraged to sign Do Not Resuscitate orders or decline life-saving treatment. Now we are being pressured to sign forms like your Provider Orders for Life-Sustaining Treatment, or POLST.
HB 1325 uses a definition of “terminal condition” that directly threatens the lives of me and many of my disabled friends. Section 13 reads:
“Terminal condition” means an incurable and irreversible condition, for the end stage for which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.
The day this bill goes into effect, thousands of people will be instantly made eligible. For example, my quadriplegia constitutes “an incurable and irreversible condition.” It has “no known treatment,” and likely “will result in premature death.” This bill would authorize a New Hampshire doctor, whom I saw “regularly,” to validate temporary feelings of being a burden as being worse than death. Legalizing assisted suicide sends the wrong message to anyone who depends on caregivers, the message that feeling like a burden is not only an acceptable reason for suicide, but a justification for our health care system to provide the lethal means to end your life. We are not better off dead.
What we disabled people see in legalizing assisted suicide is that some people get suicide prevention, while others get suicide assistance, based on value judgments and prejudice. As Vicki Kennedy wrote, “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.”
Let’s make sure that people have the choice and support to live comfortably at home – not in nursing homes, before offering hastened death. In your deliberations, please think about New Hampshire residents, elders and disabled people who may be vulnerable and without the sort of support and control assisted suicide proponents take for granted, innocent people who will be impacted by this piece of bad social policy. Invidious quality-of-life judgments have no place in social policy.
Thank you very much.
Links to sources:
Thomas B Edsall, “Who Is Poor?” New York Times, March 13, 2013
Elder Abuse Daily, “Elder Abuse Data and Statistics.”
Victoria Reggie Kennedy, “Q2 is simplistic, wrong,” Berkshire Eagle, October 30, 2012