DREDF Testimony, Senate Judiciary Committee 4-7-2015 re SB 128
Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund (DREDF)
Introduction
I am Marilyn Golden, Senior Policy Analyst with the Disability Rights Education & Defense Fund, a leading national law and policy center on disability civil rights.
There are many very serious problems with SB 128 of a Judiciary nature. I’ll address four categories:
• Safeguards
• Oversight
• How these lead to abuses
• And, opposition by the disability community
First, the supposed ”safeguards” in this bill are grossly insufficient to protect anyone from harm, for at least these reasons:
1. “6 months to live”is intended to keep everyone else safe. But in fact, misdiagnosis and incorrect prognosis of terminal illness, common in medicine, has deadly consequences if AS is legal.
Jeanette Hall, diagnosed with cancer and given six months to a year to live, sought to die under Oregon’s law. Her doctor persuaded her to fight for her life, and she is alive and well nearly 15 years later, and grateful to be. Had she taken lethal drugs, her life would have ended without 15 years that she treasures.
John Norton was diagnosed with ALS at age 18 and given 3-5 years to live. Six years later, the progression of his disease suddenly stopped and he is alive at age 77, with a wife, children, and retired from a successful career. He stated that if assisted suicide had been legal at the time, he would have used it, but is so happy to be alive.
2. Doctor-shopping gets around any of the hollow safeguards in this bill.
Doctor-shopping is when, if you ask for lethal drugs and your doctor says “No, you don’t qualify,” you or your family shops for another doctor who will say “yes.” That’s what happened to Kate Cheney, age 85. Although a psychiatrist concluded that she had dementia and was being pressured by her daughter, she later died after taking another doctor’s suicide prescription.
It’s important to know that Compassion & Choices, known earlier as the Hemlock Society, facilitates the overwhelming majority of reported Oregon deaths in some way. They can refer you to a doctor if yours says no.
3. Outside pressures, often from family, whether financial or emotional, which distort patient choice, can also get around any safeguard. Let’s look at just one aspect of this, economic factors. Two examples:
FIRST, of economic pressure: Linda Fleming. First to use the WA state law, Fleming was divorced, had had financial problems, had been unable to work due to a disability, and was forced to declare bankruptcy. Yet the Director of Compassion & Choices of Washington said that her situation presented “none of the red flags” that might have given his group pause in supporting her request for death. And somehow, proponents tell us that financial pressures have never played a role.
SECOND, financial abuse: Thomas Middleton was diagnosed with ALS, moved into the home of Tami Sawyer, and died by assisted suicide later that very month. Thomas Middleton had named Tami Sawyer his estate trustee and put his home in her trust. Two days after he died, Sawyer listed the property and deposited $90,000 into her own account. It took a federal investigation into real estate fraud to expose this abuse. Tami Sawyer was indicted for first-degree criminal mistreatment and first-degree aggravated theft, partly over mistreatment of Thomas Middleton. But the Oregon agency responsible for the assisted suicide law never even noticed.
4. Danger for people with depression & other “mental illness”
Undiagnosed depression underlies nearly all requests for assisted suicide, and for that reason, poses extraordinary danger to people with mental illness and depression.
Suicide requests from people with terminal illness, like all suicide requests, are usually based on fear and undiagnosed depression. Doctors need to recognize that, because most of the time, the depression can be treated. But where assisted suicide is legalized, it remains undiagnosed, and the only treatment is a lethal prescription.
Michael Freeland, for example had a 43-year history of acute depression and suicide attempts, but received lethal drugs in Oregon. Yet, when finally provided high-quality medical and social services, his desire for assisted suicide vanished.
But doctors often unable to diagnose depression, and when psychiatric assessments happen, they are usually “pro forma,” because a doctor who thinks her patient should receive lethal drugs can herself “shop” for a psychologist or psychiatrist who will make a finding consistent with her view.
5. Good faith. The bill protects anyone from any civil or criminal liability if they act in, quote, “good faith.” It is virtually impossible to disprove an allegation of one’s own good faith, making all other safeguards effectively unenforceable.
Even more alarming, for all other medical procedures, practitioners are liable under a much stronger standard, that of negligence. But, even if negligent, practitioners of assisted suicide will not be found violating the law, as long as they practice in good faith.
Second, the Oregon model on which this bill is based, is characterized by a lack of oversight & monitoring; and by secrecy, not transparency
We actually don’t know what’s happening under the Oregon law. The minimal published statistical data, derived from asking prescribing doctors a few questions, looks fine on the surface. But this data does not reflect what’s actually happening.
It’s not what the data shows – it’s what the data fails to show. There is no investigation for abuse. The data shows no abuses because the system is set up not to find them. Oregon readily admits they have no funding nor authority to investigate anything. SB 128 is the same.
One example of the lack of transparency under SB 128, doctors are required to falsify death certificates, by having to state as the cause of death the underlying illness rather than the lethal prescription—even if the person takes the lethal drugs during a week or month when they have no symptoms of their disease! This hides the ball, making accurate data impossible to collect.
Also, the law lacks teeth. Doctors who fail to report giving a lethal prescription, face no penalty.
The State does not talk to doctors who denied a request to prescribe lethal drugs, to find out why; nor to families, to track what is really happening.
No form of non-compliance is monitored. The State has neither resources nor even the authority to investigate violations, which is acknowledged in Oregon’s reports.
Most egregious, the State has acknowledged that after each annual report is published, the underlying data is destroyed, so no outside party can conduct objective research.
Assisted suicide is practiced in Oregon and Washington in secret and without oversight.
Third, abuse.
In this lax context I described, any abuses that come to light must be just the tip of the iceberg.
The proponents state flatly there have been no abuses. I’ve already described the problems involving Michael Freeland, Kate Cheney, Linda Fleming, and Thomas Middleton.
Let’s look at Wendy Melcher. Melcher died in August 2005 after two Oregon nurses gave her drug overdoses, claiming Melcher had requested assisted suicide, but they administered the drugs without her doctor’s knowledge in clear violation of Oregon’s law. But no criminal charges have been filed, perhaps because of the good faith standard.
A big risk is that, once a patient requests and obtains lethal drugs, the request can function as an alibi if s/he changes her mind and later becomes the victim of abuse, no matter how many weeks or months later, with no independent witness required at the death. Without witnesses, the patient’s control over the “time, place and manner” of his or her death, isn’t guaranteed.
Fourth, there is considerable opposition by the disability rights community to this bill. Many state organizations, and every prominent national group that’s ever expressed an opinion, is against it.
One reason is potential abuse around communication.
The bill makes it possible for someone else to speak for the patient if they are familiar with the person’s manner of communicating. This is extremely frightening to somebody with a significant speech disability that makes it hard for others to understand what they say.
The history of abuse of people with disabilities shows how guardians often act against our interests. An abusive caregiver can misrepresent our oral and even our written wishes. In an assisted suicide context, the consequence can be deadly.
Conclusion
Assisted suicide is bad medicine for California. Please oppose this risky, reckless bill.
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Sources (in order cited):
Jeanette Hall, King City, Oregon, Letter to the Editor, The Boston Globe, “She pushed for legal right to die, and – thankfully – was rebuffed,” October 4, 2011, available at http://articles.boston.com/2011-10-04/bostonglobe/30243525_1_suicide-doctor-ballot-initiative (accessed March 23, 2015).
Mass Against Assisted Suicide, “John Norton: A Cautionary Tale”: www.massagainstassistedsuicide.org/2012/09/john-norton-cautionary-tale.html
Stephen Mendelsohn, Testimony in strong opposition to HB 7015, An Act Concerning Aid in Dying for Terminally Ill Patients, Connecticut, March 18, 2015.
Erin Barnett, A family struggle: Is Mom capable of choosing to die? Oregonian, Oct. 17, 1999.
Transcript of tape of Peter Goodwin, Oregon, January 11, 2003, Presentation at 13th National Hemlock Society Biennial Conference, “Charting a New Course, Building on a Solid Foundation, Imagining a Brighter Future for America’s Terminally Ill,” January 9 – 12, 2003, Bahia Resort Hotel, San Diego, California.
Compassion in Dying of Oregon, Summary of Hastened Deaths, data attached to Compassion in Dying (now called Compassion and Choices) of Oregon’s IRS Form 990 for 2003.
Dr. Elizabeth Goy of Oregon Health and Science University (OHSU) is an Assistant Professor in the Department of Psychiatry, School of Medicine, OHSU and has worked with Dr. Linda Ganzini in surveys dealing with Oregon’s law. In 2004, members of the British House of Lords traveled to Oregon seeking information regarding Oregon’s assisted-suicide law for use in their deliberations about a similar proposal that was under consideration in Parliament. They held closed-door hearings on December 9 and 10, 2004 and published the proceedings on April 4, 2005. House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill, Assisted Dying for the Terminally Ill Bill [HL] Vol. II: Evidence (London: The Stationery Office Limited, 2005), p. 291, Question 768, available at: www.publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86ii.pdf (accessed March 10, 2015).
Kenneth R. Stevens, Jr. MD, former Chairman of Radiation Oncology at Oregon Health & Science University, The Proportion of Oregon Assisted Suicides by Compassion & Choices Organization.
Stevens, Concentration of Oregon’s Assisted Suicide Prescriptions & Deaths
from a Small Number of Prescribing Physicians.
First Death for Washington Assisted-Suicide Law, New York Times, 5/23/2009, www.nytimes.com/2009/05/23/us/23suicide.html?_r=0 (accessed March 10, 2015).
Sawyer Arraigned on State Fraud Charges, KTVZ.com, Sept. 7, 2011. hwww.ktvz.com/news/Sawyer-Arraigned-on-State-Fraud-Charges/619440 (accessed March 23, 2015).
Dr. Greg Hamilton, Testimony to the Select Committee on the Assisted Dying for the Terminally Ill Bill, December 10, 2004, http://www.pccef.org/articles/art32HouseOfLords.htm.
California SB 128, Section 443.12. (a).
California SB 128, Section 443.7. (b).
California SB 128.
Pressure Increases on Suspected Nurses – Alleged Players in Assisted Suicide May Be Prosecuted; Others, Too, Portland Tribune, September 7, 2007.
Another case for nursing reform, Editorial, Portland Tribune, July 10, 2007, accessed March 15, 2015, http://portlandtribune.com/component/content/article?id=89126.
Margaret Dore, Elder law attorney, in writings such as “What Do We Advise Our Clients?,” King County Bar Association, May 2009 Bar Bulletin, available at http://dredf.org/assisted_suicide/What-Do-We-Advise-Our-Clients.pdf.
Dawn Parkot’s letter, December 17, 2014: www.second-thoughts.org/main.legislative_efforts.dawn_parkot_letter_to_nj_senate