John Kelly’s Full Written Testimony In Opposition to New Jersey Assisted Suicide Bill

NJ Assembly Appropriations Committee
In Opposition to A2451, “Aid in Dying for the Terminally Ill Act”
John B. Kelly            SecondThoughtsKelly@Gmail.com

October 6, 2016

Chair Burzichelli, Vice Chair Lagana, Members of the Committee:

My name is John Kelly, and I grew up in Middletown. Now I am the director of Second Thoughts Massachusetts: People with Disabilities Opposing the Legalization of Assisted Suicide. We were the progressive voice in Massachusetts that helped defeat the assisted suicide ballot question in 2012. Our opposition is based in universal principles of social justice that apply to everyone, whether disabled or not. We urge you to reject this bill because of the real-world threats it poses.

A2451, like all assisted suicide laws, draws on shoddy science to create dangerous public health policy. The bill would establish a government recommendation that physician-assisted 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.

When it comes to life and death, there is no such thing as “reasonable medical certainty.” Of the millions of misdiagnoses every year, many are terminal misdiagnoses. We know this because of the thousands of people who “graduate” from hospice each year. The Medicare hospice benefit limits eligibility to people “reasonably expected” by a doctor to live less than six months, but the six-month terminal window is arbitrary, having more to do with congressional cost concerns than any clinical basis.

Assisted suicide advocates took what was essentially a bureaucratic criterion and made it the linchpin of their new medical “treatment,” state-approved barbiturate poisoning. Assisted suicide laws turn the best outcome under hospice – proving you weren’t terminal after all – into the worst possible end for people who might live months, years, or decades longer, but are instead persuaded (or coerced) under threat of agonizing death or tarnished legacy to commit suicide.

In Massachusetts we had the example of longtime proponent of universal healthcare, Senator Ted Kennedy, diagnosed in 2008 with an aggressive brain cancer. His widow Victoria described his story in a powerful opinion piece that helped seal defeat for the Massachusetts referendum. She wrote:

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 New Jersey 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 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 did, however, offer to cover the negligible cost of assisted 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.

One week after the California assisted suicide bill passed, seriously ill Stephanie Packer received a letter from her insurer denying coverage for a recommended chemotherapy treatment. When she called the insurer, she was told that her co-pay for assisted suicide would be $1.20. We cannot trust insurers to do the right thing rather than the cheapest 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.” Last year in Oregon, only 4% 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 some of the same concerns, but ruled that Kate was competent. Then a third consultant – the insurer’s bioethicist – met with Kate and pronounced her competent. On the day that Kate got back from a nursing home stay as respite for her family, she 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 like Kate Cheney. Every year in New Jersey, it is estimated that out of 1 ½ million people over age 60, there are 175,000 reported and unreported cases of abuse. Only in the fantasy world of the proponents are all families, including the thousands of abusive and dysfunctional ones, happily gathered around the peaceful and willing suicide.

The Appropriations Committee should not be recommending the introduction of poisonous drugs into abusive situations and then not even require an independent, disinterested witness be present at the dying. The bill shouts out the phrase “self-administer” 21 times, yet defines “self-administer” as the simple act of (willful or not) “ingesting” (Section 3). This bill takes no notice of how self-interest can motivate family members and caregivers. This explains the absurd claim by proponents that there has been not one case of abuse in Oregon.

For example, Wendy Melcher died after being given massive doses of barbiturate suppositories by two nurses, one of whom was having an affair with Wendy’s partner. The nurses claimed that Melcher had requested assisted suicide, but there was no doctor’s prescription, Wendy did not self-administer, and the nurses never reported her death to the Oregon Department of Health as an assisted suicide.

Yet instead of referring the nurses to authorities for criminal charges, the state nursing board secretly suspended one nurse’s license for 30 days and placed the other on two years “probation.” It took a reporter’s phone call years later to inform Melcher’s devastated family that she had been killed. It seems that the very existence of the assisted suicide law turned evidence of a serious crime into an excusable mistake. The Portland Tribune editorialized, “If nurses — or anyone else — are willing to go outside the law, then all the protections built into the Death With Dignity Act are for naught.”

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, 48% 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, 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% of program suicides in Oregon have been white, in a state 22% nonwhite. A Pew Research Center found that, while whites support assisted suicide 53%-44%, black and Latino voters register 65% opposition. The election map for Question 2 in Massachusetts revealed the 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. High rates of white suicide are already a social problem. The Pew Research Center also found, contrary to polls quoted by Compassion & Choices, that overall, Americans oppose legalized physician-assisted suicide 49%-47%.

What ever else assisted suicide is, it is not about pain. In the Oregon reports under “End-Of-Life Concerns,” “inadequate pain control or concern about it” trails five other indicators at 25% of cases. 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 a few years ago, 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 the notion that personal dignity is somehow lost through physical dependence on others. 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.

A2451 uses a definition of “terminal disease” that directly threatens the lives of many disabled and chronically ill people.

“Terminally ill” means that the patient is in the terminal stage of an irreversibly fatal illness, disease, or condition with a prognosis, based upon reasonable medical certainty, of a life expectancy of six months or less.

As in other assisted suicide bills, the definition omits the crucial phrase “with or without treatment.” Diabetes and multiple sclerosis are now being listed as the cause of death in Oregon, but these diseases are not “irreversibly fatal.” The day this bill takes effect, thousands of us can become terminal by simply declining life-sustaining medication or treatment. People will be discouraged from trying treatment.

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. She wrote that she is “so happy to be alive.”   She is now been alive 17 years after her misdiagnosis.

Legalized assisted suicide sends the message to everyone in society that suicide is a solution for personal distress. It’s impossible for a state to promote suicide prevention and suicide at the same time. Legalized assisted suicide means 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 a quick death. Instead of promoting assisted suicide, the legislature should make palliative care a requirement in medical school and should require every licensed doctor in the state to be competent in palliation.

Please reject this dangerous bill.

Links to Sources:

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://www.nejm.org/doi/full/10.1056/NEJMclde1310667

Jeanette Hall, “She pushed for legal right to die, and – thankfully – was rebuffed,” letter to Boston Globe, October 4, 2011,

http://tinyurl.com/ny48ql9

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

Victoria Reggie Kennedy, “Q2 is simplistic, wrong,” Berkshire Eagle, October 30, 2012 http://tinyurl.com/nxh8lg7

Oregon Health Authority, “Death With Dignity Act Annual Reports,” Year 18.

http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf

Peck Law Group, “Elder Abuse Data and Statistics, ” January 26, 2013

http://tinyurl.com/n78kvob

Pew Research Center, “Views on End-Of-Life Medical Treatments,” November 21, 2013.

http://tinyurl.com/ljrtnsh

Overall, “47% approve and 49% disapprove of laws that would allow a physician to prescribe lethal doses of drugs that a terminally ill patient could use to commit suicide.” http://www.pewforum.org/files/2013/11/end-of-life-overview-4.png

Physicians for Compassionate Care, “Five Oregonians to Remember.”

http://www.pccef.org/articles/art60.htm

Portland Tribune, “Another Case for Nursing Reform.” July 9, 2007

http://portlandtribune.com/component/content/article?id=89126

YouTube, “Barbara’s Story,” regarding Barbara Wagner denied Tarceva

 

YouTube, “Compassion & Choices DENIED,” regarding Stephanie Packer denied prescribed chemotherapy.

 

YouTube, “How to Die in Oregon – Meet Randy Stroup,” regarding Randy Stroup denied prescribed treatment. https://www.youtube.com/watch?v=5_WtvktyxkA