John Kelly’s Testimony Against New Hampshire End-of-Life Choices Study Commission SB426

March 29, 2016

Chairman Rowe, Vice-Chairman Hagan, Members of the Committee:

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 Second Thoughts Massachusetts: Disability Rights Advocates against Assisted Suicide.

Please reject SB426 because it is riddled with falsehoods. From the words of the commission’s title to its enumerated duties, it’s clear that legalization proponents drafted the bill. It is a stalking horse for the legalization of assisted suicide.

The first falsehood is the phrase “end-of-life.” The committee should know that in current practice, the “end-of-life” is the six-month period following a physician’s terminal diagnosis. Yet 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 to commit suicide.

There are so many examples of people outliving terminal prognoses, from Ted Kennedy living a year longer than predicted to John Norton of Florence, Mass., who testified before the state legislature that when he was diagnosed with ALS, he would have definitely used assisted suicide were it available. Luckily for John, his family, and everyone who has come to know him, assisted suicide wasn’t state policy, his disease process stopped, and – 60 years later! – he’s urging people to reject these bills.

There is no “end-of-life” period that could be enacted in law that would protect innocent people. The falsehood of “end-of-life” means you must reject the bill.

The second falsehood is illusion of “choices,” the other word in the title of the proposed commission. When people cannot get accurate knowledge about their condition, we cannot speak of “choices.” We also cannot speak of “choices”

  • when one out of every 10 people over the age of 60 in New Hampshire is estimated to be abused every year, almost always by adult children and caregivers.
  • When someone in line to inherit your estate can help sign you up, pick up the prescription, and then take action against you with no questions asked.
  • When depressed people with a serious illness who mistakenly think that people will be better off without them get told that “feeling like a burden” is a rational reason to kill yourself.
  • When there is no funded homecare, so families worried about the inheritance feel pressure to “choose” assisted suicide.
  • When the only other “choices” a nursing home.
  • When people with disabilities are already told to our face that we would be better off dead.

I was once able-bodied and had an accident, and since then I’ve received many “better dead than disabled” messages, right to my face and through popular culture. My own father wished that I died in the accident. I was speaking to a reporter recently about assisted suicide and she said that if she ever became paralyzed from the neck down, or had ALS and “they wanted to put a tube in me,” she would want it.

The words in the bill’s title “End-of-Life Choices,” by the way, was the choice of the former Hemlock Society when it tried to make its purpose more palatable to the public. That same organization with the same mission is now known as “Compassion & Choices.” After the 219-66 defeat suffered by the last assisted suicide bill, HB 1325, I’m sure that the former Hemlock Society is behind this bill as well.

Predictably, the first “choice” to be investigated by the commission is “the positive and negative effects of legislation in states that have enacted aid in dying laws.”

The third falsehood in this bill is the phrase “aid in dying,” one of Compassion & Choices’ favorite euphemisms for assisted suicide (“Death with Dignity” is the other). It’s not clear exactly what “aid” means. It could be the prescription that the doctor writes, or it could mean the overdose of barbiturates that the pharmacist dispenses, or it could mean the poisonous concoction that people try to drink – slowly enough to prevent vomiting and quickly enough to prevent falling asleep before the overdose is complete – in the act of suicide.

“Dying” reflects the fiercely maintained belief of proponents that when people are “reasonably expected” to die within six months, they are in the process of actively dying. Leading Massachusetts proponent Dr. Marcia Angell strenuously argues that “make no mistake about it, people are dying.”

The problem is that this is so often and so clearly untrue. Here is yet another reason to reject SB426.

The American Medical Association has a definition for “physician-assisted suicide,” not for “aid in dying.” When the New England Journal of Medicine held a 2013 poll on the issue, the title was simply “Physician-Assisted Suicide.”

One positive, according to proponents, is that there has never been a case of abuse out in Oregon – that’s right, the first state-run program ever without a case of abuse. The only reason that no abuse is discovered is because the reports are designed that way. The only abuses we know of are ones that somehow make it to the media.

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.”

The fifth falsehood is that “aid in dying” is not assisted suicide. But when proponents talk about “dying on their own terms” and choosing the “timing, manner, and circumstances” of death, that’s a suicide plan.

Encouraging assisted suicide for some will encourage suicide for all. Suicide contagion is real. According to the Centers for Disease Control, Oregon’s already high suicide rate has increased much more than the national average; from 1999 until 2010, the rate of increase for people age 35-64 was 49% in Oregon versus 28% nationally. Given the motto of Compassion & Choices and other “right-to-die” organizations is “My Life. My Death. My Choice.” this should come as no surprise. It certainly is a negative that bullied teenagers get the message that suicide is an answer to your problems.

Would commission members judge the “end of life concerns” reported by prescribing doctors a positive or negative effect? Proponents draw on personal stories, which often involve pain and fear of pain. Yet as pointed out by Mike Skibbie, policy director for the New Hampshire’s Disability Rights Center, in the New Hampshire Public Radio debate earlier this month, the leading reasons cited in Oregon and Washington all have to do with disability.

The sixth falsehood is that assisted suicide is all about pain and suffering. But the five leading reasons reported by prescribing doctors solely deal with psychosocial distress about disability. First is distress about dependence on other people (“losing autonomy” 92%), second is distress over lost abilities (“less able to engage in activities making life enjoyable” 89%), followed by feelings of shame and perceived/actual loss of social status (“loss of dignity” 79%), distress about needing help with incontinence (“losing control of bodily functions” 50%), and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers” 40%).

Another falsehood is that “choice” belongs only to the individual. It’s a fantasy that other people only want what the individual wants, and completely support whatever the person chooses. Everyone is in relation to their family and loved ones.

If someone’s suicide is seen as an individual and social benefit, of course other people will be suggesting it.

Here is an example of a man told he was a burden. 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). 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.

A belief common among people thinking of suicide, whether “conventional” or assisted, is that their deaths will benefit others. Assisted suicide laws reclassify what should be evidence of impaired judgment as a rational response to disabling, serious illness.

The lives of non-“terminal” disabled people share many traits with people requesting assisted suicide, but we reject as bizarre and dangerous the notion that personal dignity is somehow lost through reliance on others, or because we are not continent every hour of every day. That’s why for 40 years the disability rights movement has insisted on funded programs to provide necessary personal care attendant (PCA) services for all disabled people, including people disabled by their serious illness.

Assisted suicide laws set up a two-tier system, under which some people get suicide prevention services while others get suicide assistance. The difference between the two groups would be based on value judgments about so-called “quality of life.” Many of us already get told, straight to our face and through medical hostility, that we might be better off dead. Legalized assisted suicide makes that prejudice official policy.

That’s why every leading national disability rights group that has taken a position on assisted suicide has come out against it.

There is no way to come up with a better bill through the “thoughtful and deliberative” process envisioned by sponsor Senator Dan Feltes.

This study commission would be well replaced by a commission that would investigate how best to “help older people in New Hampshire live well.” This commission could investigate innovative practices like in-home medical visits, in-home mental health care, fully funded homecare, and the guarantee of effective palliative care, secured through a requirement that all practicing doctors in the state be certified in the field.

New Hampshire could follow the innovative practice of Connecticut, the first state to recognize explicitly that “assisted suicide is actually a form of lethal discrimination against disabled people. Here is the key finding of the Connecticut Suicide Advisory Board (CTSAB):

Until recently, the CTSAB was considering assisted suicide of the terminally ill as a separate issue from suicide prevention. The active disability community in Connecticut, however, has been vocal on the need for suicide prevention services for people with disabilities. There may be unintended consequences of assisted suicide legislation on people with disabilities. [Disabled scholar William] Peace writes that “Many assume that disability is a fate worse than death. So we admire people with a disability who want to die, and we shake our collective heads in confusion when they want to live.”

One of the Board’s most important recommendations is:

  • Do not “assume” suicide is a “rational” response to disability.

Suicide is not a rational response to disability.

Please only establish commissions with honest language. Reject SB426 because it’s dishonest and dangerous. Thank you.