This article was originally published by the PolitickerNJ on June 26, 2014. John Kelly testified in New Jersey. (NB: John's observations apply equally to euthanasia)
By John Kelly, the regional coordinator for the disability rights group - Not Dead Yet.
No matter how many amendments get added to the New Jersey assisted suicide bill, A2270, whether for a prettier name (out goes"Death With Dignity," in comes "Aid in Dying for the Terminally Ill") or for a changed-then-changed-back-again definition of "terminal illness," the bill is too dangerous.
Similar bills have been submitted all over the Northeast, and they sound good at first - who's against relieving suffering, who opposes personal autonomy? Health and Senior Services committee chair Herb Conaway summed it up before his yes vote, "People have the right to self-determination."
But a closer look reveals the opposite - these bills inevitably and ineradicably compromise personal autonomy. And of the more people learn about these bills, the more they oppose them. New Hampshire, Massachusetts, and Connecticut each rejected assisted suicide bills this session.
A2270, like the other bills, draws on shoddy science to create reckless public health policy. First of all, it is simply not possible to predict accurately when someone will die. When Sen. Ted Kennedy was diagnosed with aggressive brain cancer in 2008, he was given 2-4 months to live. As his widow Victoria wrote in an editorial in 2012, "that prognosis was wrong. Teddy lived 15 more productive months."
In the disability community, everyone knows people who have been labeled "terminal," it's actually a bit of a joke. Morristown's Dawn Teresa Parkot's testified at the hearing on A2270 that doctors predicted she would be "a mindless vegetable ... lucky to survive to age 5." Parkot spoke of her bachelor degrees in computer science and engineering, and said, "Often patients are misdiagnosed and could make an irreversible decision to die based on the wrong information."
In this age of induced austerity, the media is full of calls for healthcare cost containment. Denying treatment is another way that people's autonomy gets compromised. 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 minimal cost of assisted suicide drugs. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making.
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. The prescribing doctor said he didn't think a psychological consult was "necessary." Oregon's statistics for the last four years show that an absurdly low 2% of patients were referred for a psychological evaluation. Experts agree that doctors are not capable of identifying such psychological problems.
Vulnerable elders will be put at risk. Every year in New Jersey, it is estimated that out of 1 Â½ 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 bill enables the introduction of poisonous drugs into abusive situations without even requiring an independent, disinterested witness be present at the dying. This bill takes no notice of how self-interest can motivate family members and caregivers. No investigations take place under these bills, which explains the absurd claim by proponents that there has been not one case of abuse in Oregon.
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 $90,000 into her own account. It took a federal investigation into real estate fraud to expose this abuse. Oregon's assisted suicide program never noticed. The state decided in the end not to even prosecute Sawyer for defrauding Middleton, let alone for the loss of his life. Thomas Middleton's family will never know the circumstances under which he died.
All the talk about autonomy misses the point that everyone makes healthcare decisions in a context of other people. We never stop thinking of other people, and 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!
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, feeling like a burden, and loss of control of bodily functions.
What ever 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.
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.
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 really respect people's self-determination by making sure everyone has the choice and supports to live comfortably at home - not in nursing homes - before offering hastened death. Please think about New Jersey 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.
John B. Kelly grew up in Middletown New Jersey and now lives in Massachusetts, where he is the regional director for Not Dead Yet, the leading disability rights organization against assisted suicide and euthanasia.