Emily Titon Testimony against H 5507
Statement to the House Committee on Health, Education & Welfare
Re: House Bill 5507 – “Lila Manfield Sapinsley Compassionate Care Act”
Wednesday, April 8, 2015
OPPOSE
My name is Emily Titon, and I am a Rhode Island resident and disability rights activist from the Autistic Self Advocacy Network. I am testifying on behalf of Not Dead Yet, the national disability rights group that has long opposed euthanasia and assisted suicide. Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not.
H 5507, like all assisted suicide laws, draws on shoddy science to create dangerous public health policy. The bill would establish a government recommendation that doctor-prescribed suicide is sometimes the best medical 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 are not good at predicting when people will die. For example, Massachusetts Senator Ted Kennedy was diagnosed with aggressive brain cancer in 2008, the same kind of cancer that Brittany Maynard had. His widow Victoria described his story in a powerful op-ed, writing:
When my husband was first diagnosed with cancer, 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 Rhode Island receiving a similar diagnosis could be dead in 15 days, based on the tragically mistaken belief that death was imminent.
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 14 years later, she wrote that she is “so happy to be alive.”
In this age of induced austerity, the media is full of calls for healthcare cost containment. So in the state of 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. Can we trust insurance companies to do the cheap thing or the right thing?
Depressed 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 five years show that barely 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 offered to 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 like Kate Cheney. Every year in Rhode Island, it is estimated that out of 200,000 people over age 60, there are more than 20,000 reported and unreported cases of abuse. For every case that is reported, it is estimated that many more cases are not.
“Only four percent of reported elder abuse cases come from the elder person; 96 percent of the reports come from somewhere else,” Maryland family violence prosecutor Debbie Feinstein said. Only in the fantasy world of proponents are all families, including the thousands of abusive and dysfunctional ones, happily gathered around the peaceful and willing suicide.
The House Committee on Health, Education & Welfare should not be recommending the introduction of poisonous drugs into abusive situations and then not even require that an independent, disinterested witness be present at the dying. This bill takes no notice of how self-interest can motivate family members and caregivers. Because assisted suicide bills do not grant state departments of public health investigatory authority and resources, investigations are foreclosed. This explains the absurd and disproven claim by proponents that there has been not one case of abuse in Oregon.
In 2008, Thomas Middleton, a man with ALS (Lou Gehrig’s disease), moved into real estate broker Tami Sawyer’s home after deeding his home to a trust she controlled, then died under the state’s assisted suicide program. The state did not notice that two days later, Sawyer put the estate up for sale and deposited the sale proceeds into companies she controlled. It took an FBI investigation to indict the Ponzi-scheming Sawyer and her husband for rampant fraud and money laundering. State charges against Sawyer for theft and elder financial abuse of Middleton followed a year later, only to be dropped in 2013 after Sawyer pled guilty in federal court. The state never considered the possibility of foul play in Middleton’s death, with any data from 2008 long since destroyed under program guidelines.
Americans place tremendous value on individual, autonomous choice, whereas public health 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 directly impacted 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. In Oregon, 40% of assisted suicide users have been 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, feeling like a burden, and loss of control of bodily functions.
These reasons suggest a meaning of dignity that is fragile and easily lost through disability and dependence on others. The people acting on these views, 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 also overwhelmingly white. 97.1% of program suicides in Oregon have been white, in a state 22% nonwhite. The Pew Research Center found in 2013 that, while nationally whites support assisted suicide 53%-44%, black and Latino voters register 65% opposition. 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. High rates of white suicide are already a social problem.
Whatever else assisted suicide is, it is not about pain.
Pain is a medical problem that palliative care can solve. As renowned palliative care expert Dr. 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 in 2013, its invented case was a man with metastatic pancreatic cancer, with pain 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 and insulting the idea 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 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.
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. We are not better off dead. 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 with supports before offering hastened death. Please continue to think about Rhode Island 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 would be impacted by this piece of bad social policy. Invidious quality-of-life judgments have no place in social policy.
Reject this bill and the discrimination it promotes.
Thank you very much.
Emily Titon
57 Pemberton Ave.
Jamestown RI 02835
Links to Sources, listed in order cited:
Victoria Reggie Kennedy, “Q2 is simplistic, wrong,” Berkshire Eagle, October 30, 2012 http://tinyurl.com/nxh8lg7
Jeanette Hall, “She pushed for legal right to die, and – thankfully – was rebuffed,” letter to Boston Globe, October 4, 2011,
http://tinyurl.com/ny48ql9
YouTube, “Barbara’s Story,” regarding Barbara Wagner denied Tarceva
http://tinyurl.com/ozrxmqp
Physicians for Compassionate Care, “Five Oregonians to Remember.”
http://tinyurl.com/lwzhojb
Oregon Health Authority, “Death With Dignity Act Annual Reports,” Years 15-17.
http://tinyurl.com/lhquczx
Erin Hoover Barnett, “Physician-assisted suicide: A family struggles with the question of whether mom is capable of choosing to die,” The Oregonian, October 17, 1999.
http://tinyurl.com/l9hj3fq
Peck Law Group, “Elder Abuse Data and Statistics, ” January 26, 2013
http://tinyurl.com/n78kvob
Daniel Leaderman, “A Safe Place for Abused Seniors,” Gazette.Net, February 9, 2015.
http://tinyurl.com/nhhn77g
KTVZ.com, “Sawyer Arraigned on State Fraud Charges,” September 7, 2011.
http://tinyurl.com/nzxrcge
Barney Lerten, “State Dropping Tami Sawyer Fraud Case,” KTVZ, October 30, 2013.
http://tinyurl.com/q5rr9oo
Kathryn Judson, “Assisted Suicide? “I was afraid to leave my husband alone again with doctors and nurses,” letter to Hawaii Free Press, February 2011. Fourth letter down the page.
http://tinyurl.com/brhfcre
Pew Research Center, “Views on End-Of-Life Medical Treatments,” November 21, 2013.
http://tinyurl.com/ljrtnsh
Ira Byock, “Vermont: Testimony of Ira Byock, MD to Vermont Senate Committee on Health and Welfare Hearing on End of Life Choices,” January 31, 2013.
http://tinyurl.com/kuolula
James A. Colbert, M.D., et al., “Physician-Assisted Suicide — Polling Results,” New England Journal of Medicine, September 12, 2013.
http://tinyurl.com/p8j4z4x