Thursday, June 5, 2014

Disability rights leaders speak out against New Jersey assisted suicide bill.

The New Jersey Health and Senior Services Committee had a hearing on assisted suicide Bill A 2270 on June 5, 2014. 

The following two are the letters from Disability Right leaders: Diane Coleman, President of Not Dead Yet and Marilyn Golden, Policy Analyst for the Disability Rights Education & Defense Fund (DREDF)
Dear Health and Senior Services Committee Members:

Diane Coleman
Not Dead Yet is a national disability rights group with members in New Jersey. On behalf of our members, I write to say that we are extremely concerned about A2270, the bill to legalize assisted-suicide, and urge you to oppose it.

Leading proponents of bills to legalize assisted suicide for the terminally ill often claim that the views of disability organizations aren’t relevant. While it’s true that people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled. This is one of many reasons that our perspective may shed some light on this complex issue.

People with disabilities and chronic conditions live on the front lines of the health care system that serves (and too often underserves) dying people. One might view us as the proverbial “canaries in the coal mine” who are alerting others to dangers we see first.

Assisted suicide supporters paint themselves as “compassionate progressives” fighting for freedom against the “religious right.” It’s a simple message, and it goes down well, if you ignore inconvenient truths, such as:

● Predictions that someone will die in six months are often wrong;
● People who want to die usually have treatable depression and/or need better palliative care;
● Pressures to cut health care costs in the current fiscal climate make this the wrong time to add doctor prescribed suicide to the options;
● Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.
It’s not the proponents’ good intentions but the language and implementation of assisted suicide laws that legislators need to consider.

As one of countless disabled people who’s survived a mistaken terminal prediction, I can’t help but become concerned when the accuracy of a terminal prognosis determines whether someone gets suicide assistance rather than suicide prevention.

The Oregon Reports themselves show that non terminal people are getting lethal prescriptions – up to 1009 days have passed between the request for a lethal prescription and death. One of the many things the Reports hide is specifically how many lived longer than six months, but we do know that there’s no consequence to the assisting doctors for this or any other mistake in the assisted suicide process.

Proponents also claim that 15 years of data from Oregon show that safeguards to ensure that it's voluntary are working. How would they know? The Oregon Reports only tell us what the prescribing doctors indicated were the patients’ reasons for wanting assisted suicide by checking off one or more of seven reasons on a multiple choice state government form.

One of the reasons is feelings of being a burden on others, checked in 49% of the cases last year. But there’s no corresponding requirement that home care options be disclosed as part of informed consent under the law, much less that they be offered or funded.

Although the Oregon Reports admit that the state can’t assess compliance with the safeguards, some independent articles find that safeguards failed in individual cases (see, e.g., Hendin & Foley, MDs, “Physician-Assisted Suicide in Oregon: A Medical Perspective”, Michigan Law Review, June 2008. But the law includes no authority for investigation or enforcement, so nothing happens as a result.

It has been estimated that there are over 175,000 reported and unreported cases of elder abuse annually in New Jersey. Statistically, 90% of elder abusers are a family member or trusted other. Similarly, people with disabilities are up to four times more likely to be abused than their same-age nondisabled peers. In Oregon and Washington, legal assisted suicide has opened new paths of abuse against persons who may qualify to use these laws. One of the most obvious problems is a complete lack of oversight when the lethal drug is administered. If an abuser were to administer the drug without the person’s consent, who would know?

It is simply naive to suggest that assisted suicide can be added to the array of medical treatment options, without taking into account the harsh realities of elder abuse and the related potential for coercion.

We urge you to vote against A2270.

Diane Coleman, JD, MBA
President/CEO Not Dead Yet
497 State Street Rochester, NY 14608

TO: Chairman Conaway and the members of the Assembly Health Committee

Dear Chairman Conaway and the members of the Assembly Health Committee:

Marilyn Golden
The Disability Rights Education and Defense Fund, a foremost national law and policy center on the civil rights of people with disabilities, urges your strong opposition to A2270, the bill that would legalize assisted suicide in New Jersey. Many disability rights organizations as well as the Medical Society of New Jersey and the American Medical Association believe that there are deep systemic problems that make the legalization of assisted suicide bad public policy.

This bill is too dangerous. For example, it is a prescription for elder abuse. An heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug—no witnesses are required at the death, so who would know?

Legalized assisted suicide would be a deadly mix with our broken, profit-driven health care system, in which financial pressures already play far too great a role. Direct coercion is not even necessary. If insurers deny, or even merely delay, approval of expensive, life-giving treatments that patients need, patients will, in effect, be steered toward doctor-prescribed suicide, if it is legal.

For example, in 2008, patients Barbara Wagner and Randy Stroup, Oregonians with cancer, were both informed by the Oregon Health Plan that the Plan would not pay for their chemotherapy, but would pay for their assisted suicide. Though called a free choice, for these patients, assisted suicide was a phony form of freedom.

The purported safeguards are very weak, and there are many ways to get around them. Diagnoses are too often wrong, leading people to give up on treatment and lose good years of their lives. If one doctor says “no,” people can, and do, "doctor shop" multiple times until they find a "yes." Nothing in the bill will protect patients when there are family pressures, whether financial or emotional, which distort patient choice. And no psychological counseling is required, putting depressed people in danger.

The bill’s proposed scheme includes no real enforcement, investigation authority, or oversight.

The movement for legalization of assisted suicide is driven by anecdotes of people who suffer in the period before death. However, for anyone who is dying in significant discomfort, it is currently legal in New Jersey and every other U.S. state to receive palliative sedation, wherein the dying person is sedated so their discomfort is relieved. Thus, there is already a legal recourse to avoid a painful death that does not raise the serious dangers of legalizing assisted suicide.

Because the dangers so outweigh any benefit, this bill is bad medicine for New Jersey. Your opposition is essential.

Respectfully yours,

Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund (DREDF)
210 - 3075 Adeline St., Berkeley CA 94703

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