New Jersey: Disability Advocates Testify Against Assisted Suicide Bill

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Assisted suicide is being promoted once again in New Jersey, going through the Assembly Judiciary meeting. This bill made it through the Assembly twice in previous legislative sessions, but failed to garner enough votes in the NJ Senate. Now, with the election of a new Governor and new members in the Legislature, the supporters of this bill are trying again.

On Monday, March 12, the bill was the subject of a public hearing of the Assembly Judiciary Committee. Disability Rights advocates were on hand to testify against the bill.

Here are the audio link and time markers for the disability witnesses.

http://www.njleg.state.nj.us/media/mp.asp?M=A/2018/AJU/0312-1200PM-M0-1.M4A&S=2018

  • Dawn Parkot and Lindsay Tuman – 1:49:35-1:56:44
  • Kate Blisard 2:38.10-2:41:22
  • Kathryn Carroll 2:53:48-2:57:00
  • Alex Thompson 3:05:54-3:08:13

This bill is virtually identical to the Oregon assisted suicide law, and poses dangers to people with terminal illnesses, as well as people with chronic illnesses and disabilities. Oregon officials have recently written that a person is considered “terminal” under the assisted suicide law if their life depends on any form of treatment or medication and the person does not get that treatment or medication for any reason. This applies whether the person refuses or is denied treatment involuntarily, such as by insurance denial, or for any other reason. State interpretations of Oregon’s law are precedent for other state laws using the same language.

Recent Oregon state reports include the following as qualifying conditions: neurological disease, respiratory disease, heart/circulatory disease, infectious disease, gastrointestinal disease, endocrine/metabolic disease and, in the category labeled “other”, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders.

Click here for a written version of  Dawn Parkot’s testimony.

Click here for a written version of Kate Blisard’s testimony.

In addition to live testimony, NDY President/CEO submitted written testimony. You can read it here.

The Committee voted the bill out for the Assembly to vote on. A setback, but the fight’s far from over. Thanks so much for the disability activists and activists who are engaging in the fight for our lives – in New Jersey and across the country.

YouTube: EZ Breezy Assisted Suicide w/ Bill Peace (and Tipsy Tullivan)

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2010 was a horrible year for friend and NDY board member Bill Peace. Here’s a summary from a post back in 2012:

Back in 2010, our friend, colleague and ally Bill Peace, experienced a long, expensive health crisis when he experienced a stage IV skin breakdown – with a long treatment process that was physically and emotionally grueling by his own accounts.

While Bill was hospitalized – and at one of his lowest points healthwise – he was subjected to a late night visit by a hospitalist.  Laying out a grim set of possible outcomes for Bill’s health crisis, the doctor seemed to be urging Bill to just discontinue antibiotics and let himself be given palliative care to be pain-free until the infection took him.

Some years have passed, and just last month sat down and made a video with YouTuber Tipsy Tullivan – retelling the story and managing to laugh while he does:

Ms. Tullivan is also known as Jillian Weise. According to a short bio I found, she has a multitude of talents – poet, performance artist, disability rights activist, and an Associate Professor at Clemson University. You can find out more about her at her website, jillianweise.com/.

You can read more about Bill on our Board of Directors page.

“End of Life Washington” Promotes Directive to Prevent Feeding Assistance to Those with Dementia

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(The following continues coverage and discussion of an initiative regarding efforts to let dementia patients “refuse” assistance to eat. We discussed this in November 2017. You can check out that blog post here.)

Journalist Mike Bassett has a new online article out in Today’s Geriatric Medicine. It involves the latest initiative from “End of Life Washington” (EOLWA). As mentioned above, it’s been discussed on this blog before.

While disability activists and others in the social justice community have been rallying around the threats to the ADA, Medicaid, Medicare and other vital parts of the social safety net, organizations like EOLWA still see our biggest problem is that it’s allegedly too hard to die. In this case, the allege that too many people with dementia are being fed against their will.

Bassett’s article in Today’s Geriatric Medicine is very good. He includes the voices of reps from EOLWA, Alzheimer’s Association – and me, representing NDY.

As we’ve seen over the past few decades, narrow initiatives like this act as door-openers, in which a narrowly-defined “refusal” of life-sustaining treatment expands over time both in terms of the groups who may exercise this “right” and the level of proof a surrogate needs to “exercise” that right on the behalf of someone who cannot communicate those wishes themselves. What makes this initiative a bold step is that it shifts manual assistance in eating and drinking as a form of medical assistance – a radical difference in framing something that has historically viewed as basic care.

It’s vitally important that anyone who needs assistance to eat, who supports someone with those needs, or loves someone with those needs to keep this issue on your radar. It’s headed your way, sooner or later.

Please go and read the whole article in Today’s Geriatric Medicine. It’s titled Judicious Feeding Options at the End of Life.

Not Dead Yet (USA) Submission Opposing New Zealand End of Life Choice Bill

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[Editor’s note: To read the whole Submission, go here.]

Not Dead Yet, the Resistance

Submission to the New Zealand Parliament’s Justice Committee

re: End of Life Choice Bill

March 5, 2018

Introduction

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Formed by disabled people in 1996, Not Dead Yet helps organize and articulate opposition to these practices in the United States based on secular social justice arguments. Not Dead Yet also demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less. Since our founding, autonomous sister organizations have been formed in a number of other countries, including the United Kingdom, Canada and New Zealand.

This submission concerns the New Zealand Parliament’s End of Life Choice bill. We strongly oppose this bill, which supports assisted suicide and euthanasia, thus proposing to carve older, ill and disabled people out of equal protection of the law. This submission will first examine the social-political context in which this and similar bills arise. Next, we will discuss the evidence from Oregon, the earliest of the five U.S. states and District of Columbia to legalize assisted suicide, focusing on official data that substantiates critics’ concerns. Finally, we will outline specific concerns of the disability community, which have resulted in all major U.S. national disability organizations that have taken a position on the issue deciding to oppose assisted suicide laws.

Regarding the specific provisions of New Zealand’s End of Life Choice bill, we fully endorse the submission of our Canadian sister organization, Toujours Vivant-Not Dead Yet, which provides a section by section analysis of the bill in Part 3 of its submission. We will not repeat that here.

The most horrific reality of this bill is that no disabled person, whether their condition is new or long standing, and no seriously ill person, whether their condition is chronic or terminal, can allow common fears, sadness, depression or despair overtake them, because if they do, the government and medical system will be ready, willing and able to speak the words and check off the boxes required to kill them. This is blatant discrimination at its most deadly, cruel bigotry dressed up to look like compassion when it is really contempt.

Disabled people demand equality under the law. Regardless of our abilities or disabilities, none of us should feel that we have to die to have dignity, that we have to die to be relieved of pain, or that we should die to stop burdening our families or society. The proposed End of Life Choice bill must be rejected.

The Social and Political Context In Which Assisted Suicide and Euthanasia Bills Arise

There are four key social-political factors that are central to the assisted suicide and euthanasia issue, but are too often ignored or downplayed:

  • Healthcare cost cutting
  • Fear of the aging demographic
  • Fear of disability
  • Deceptive political framing

Healthcare Cost Cutting

Never has there been more hand wringing over the growing costs of healthcare than we see today. On a worldwide basis, whether paid by private insurance or government programs, there are worried statements that this growth is not sustainable, all coming from professionals who have healthcare themselves. Meanwhile, those who struggle to get the healthcare they need face the threat of more cuts. In the U.S., this led to repeated protests and arrests of disability activists throughout last summer as conservatives proposed massive life threatening healthcare cuts.[i]

When legislators hear that people are dying in pain, the first thing they should ask is why have they not received the palliative care they need to relieve their pain. In these times, no one need die in pain, even in the rare cases in which sedation is the only method that works.[ii] When legislators hear that people feel like a burden on loved ones, they should ask why sufficient home care supports are not provided to meet their needs.

Instead of ensuring that people receive the healthcare they need, too many legislators are asking why doctors can’t speed patients to an early death. A chapter called “The Unspoken Argument” in a book co-authored by Derek Humphrey, co-founder of the Hemlock Society and long time leader within the World Federation of Right to Die Societies, stated:

“Similar to other social issues, the right-to-die movement has not arisen separate and distinct from other concurrent developments of our time. In attempting to answer the question Why Now?, one must look at the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” Humphrey and Clement (2000) Freedom to Die: people, politics, and the right-to-die movement. (Emphasis added.)

This is an unacceptable basis for public policy decisions.

[i] “Arresting Disabled Bodies,” New Republic, Sept. 28, 2017, https://newrepublic.com/article/145072/arresting-disabled-bodies; “Dozens arrested after disability advocates protest at McConnell’s office,” CNN, June 22, 2017, https://www.cnn.com/2017/06/22/politics/protests-mitch-mcconnell-office-health-care-bill/index.html; “If You Celebrated the Health Care Vote Last Week, You Should Probably Thank a Disability Activist,” Elle, Aug. 1, 2017, https://www.elle.com/culture/career-politics/news/a47075/disability-activist-health-care/?src=social-email

[ii] “Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments,” Mayo Clinic Proceedings, Oct. 2010, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947968/

Not Dead Yet Testimony Opposing Hawaii Assisted Suicide Bill HB 2739

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Not Dead Yet, the Resistance

TESTIMONY OF

DIANE COLEMAN, JD, PRESIDENT/CEO OF NOT DEAD YET

OPPOSING HAWAII HB 2739

Judiciary and Health and Human Services Committees

Submitted February 26, 2018

I am a severely disabled woman, and head up the national disability group, Not Dead Yet, which has members in Hawaii. I’ve spent a lifetime advocating for the rights of disabled people, young and old, to control our own lives and not have our choices dictated by doctors and other professionals. So you might wonder why I oppose a bill that is widely portrayed as giving people choice and control over their own death.

But who actually has choice and control under assisted suicide laws?  Anyone could ask their doctor for assisted suicide, but the law gives the authority to doctors to determine who is eligible. More importantly, the purported “safeguards” to prevent mistake, coercion and abuse are empty window dressing, with little substance or effect.

One of the most frequently repeated claims by proponents of assisted suicide laws is that there is “no evidence or data” to support any claim that these laws are subject to abuse, and that there has not been “a single documented case of abuse or misuse” in Oregon during the 18 reported years. These claims are demonstrably false.

Regarding documented cases, please refer to a compilation of individual cases and source materials pulled together by the Disability Rights Education and Defense Fund entitled Oregon and Washington State Abuses and Complications.[1] For an in-depth analysis of several cases by Dr. Herbert Hendin and Dr. Kathleen Foley, please read Physician-Assisted Suicide in Oregon: A Medical Perspective.[2]

Moreover, revisions to last year’s bill in the 2018 bill do nothing to address the fundamental deficiencies identified below.

The focus of the discussion below is the Oregon Health Division data.[3] These reports are based on forms filed with the state by the physicians who prescribe lethal doses and the pharmacies that dispense the drugs. As the early state reports admitted:

“As best we could determine, all participating physicians complied with the provisions of the Act. . . . Under reporting and noncompliance is thus difficult to assess because of possible repercussions for noncompliant physicians reporting to the division.”

Further emphasizing the serious limits on state oversight under the assisted suicide law, Oregon authorities also issued a release in 2005 clarifying that they have No authority to investigate Death with Dignity case.[4]

Nevertheless, contrary to popular belief and despite these extreme limitations, the Oregon state reports substantiate some of the problems and concerns raised by opponents of assisted suicide bills.

Non-Terminal Disabled Individuals Are Receiving Lethal Prescriptions In Oregon

The Oregon Health Division assisted suicide reports show that non-terminal people receive lethal prescriptions every year except the first.

The prescribing physicians’ reports to the state include the time between the request for assisted suicide and death for each person. However, the online state reports do not reveal how many people outlived the 180-day prediction. Instead, the reports give that year’s median and range of the number of days between the request for a lethal prescription and death. This is on page 11 of the 2017 annual report.[5] In 2017, at least one person lived 603 days; across all years, the longest reported duration between the request for assisted suicide and death was 1009 days. In every year except the first year, the reported upper range is significantly longer than 180 days.

The definition of “terminal” in the statute only requires that the doctor predict that the person will die within six months. There is no requirement that the doctor consider the likely impact of medical treatment in terms of survival, since people have the right to refuse treatment. Unfortunately, while terminal predictions of some conditions, such as some cancers, are fairly well established, this is far less true six months out, as the bill provides, rather than one or two months before death, and is even less true for other diseases. Add the fact that many conditions will or may become terminal if certain medications or routine treatments are discontinued – e.g. insulin, blood thinners, pacemaker, CPAP – and “terminal” becomes a very murky concept. Recent published emails from the Oregon Public Health Department have confirmed that a person who becomes terminal because they do not receive treatment for any reason, including lack of insurance coverage, would qualify for assisted suicide under the Oregon law.[6]

The state reports that non-cancer conditions found eligible for assisted suicide has grown over the years, to include: neurological disease, respiratory disease, heart/circulatory disease, infectious disease, gastrointestinal disease, endocrine/metabolic disease and, in the category labeled “other”, arthritis, arteritis, sclerosis, stenosis, kidney failure, and musculoskeletal systems disorders (pages 10-11).

In addition, it should be noted that the attending physician who determines terminal status and prescribes lethal drugs is not required to be an expert in the disease condition involved, nor is there any information about physician specialties in the state reports.

The Only Certifiers of Non-Coercion And Capability Need Not Know the Person

Four people are required to certify that the person is not being coerced to sign the assisted suicide request form, and appears capable: the prescribing doctor, second-opinion doctor, and two witnesses.

In most cases over the years, the prescribing doctor is a doctor referred by assisted suicide proponent organizations. (See, M. Golden, Why Assisted Suicide Must Not Be Legalized,[7] section on “Doctor Shopping” and related citations). The Oregon state reports say that the median duration of the physician patient relationship was 10 weeks in 2017, and 13 weeks over all years (page 11). Thus, lack of coercion is not usually determined by a physician with a longstanding relationship with the patient. This is significant in light of well-documented elder abuse-identification and reporting problems among professionals in a society where an estimated one in ten elders is abused, mostly by family and caregivers. (Lachs, et al., New England Journal of Medicine, Elder Abuse.[8])

The witnesses on the request form[9] need not know the person either. One of them may be an heir (which would not be acceptable for witnessing a property will), but neither of them need actually know the person (the form says that if the person is not known to the witness, then the witness can confirm identity by checking the person’s ID).

So neither doctors nor witnesses need know the person well enough to certify that they are not being coerced.

No Evidence of Consent or Self-Administration At Time of Death

In about half the reported cases, the Oregon Health Division reports also state that no health care provider was present at the time of ingestion of the lethal drugs or at the time of death. Footnote six clarifies:

“A procedure revision was made mid‐year in 2010 to standardize reporting on the follow‐up questionnaire.  The new procedure accepts information about time of death and circumstances surrounding death only when the physician or another health care provider is present at the time of death.  This resulted in a larger number of unknowns beginning in 2010.”

While the only specific example mentioned is the “time of death,” other “circumstances surrounding death” include whether the lethal dose was self-administered and consensual at the time of death. Therefore, although “self administration” is touted as one of the key “safeguards”, in about half the cases, there is no evidence of consent or self-administration at the time of ingestion of the lethal drugs. If the drugs were, in some cases, administered by others without consent, no one would know. The request form constitutes a virtual blanket of legal immunity covering all participants in the process.

Moreover, the addition of a form that is supposed to be signed by the patient, with no witness, within 48 hours of the administration of the lethal drugs does not add meaningful protection from involuntary administration by another person in the absence of an independent witness to the act. This form is just another bit of window dressing.

Pain Is Not the Issue, Unaddressed Disability Concerns Are

The top five reasons doctors give for their patients’ assisted suicide requests are not pain or fear of future pain, but psychological issues that are all-too-familiar to the disability community: “loss of autonomy” (91%), “less able to engage in activities” (90%), “loss of dignity” (76%), “losing control of bodily functions” (46%), and “burden on others” (44%) (page 10).

These reasons for requesting assisted suicide pertain to disability and indicate that over 90% of the reported individuals, possibly as many as 100%, are disabled.

Three of these reasons (loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home long-term care services, but no disclosures about or provision of such services is required. Some of the reported reasons are clearly psycho-social and could be addressed by disability-competent professional and peer counselors, but this is not required either. Moreover, only 4.9% of patients who request assisted suicide were referred for a psychiatric or psychological evaluation, despite studies showing the prevalence of depression in such patients.

Basically, the law operates as though the reasons don’t matter, and nothing need be done to address them.

Conclusion

The Oregon assisted suicide data demonstrates that people who were not actually terminal received lethal prescriptions in all 20 reported years except the first, and that there is little or no substantive protection against coercion and abuse. Moreover, reasons for requesting assisted suicide that sound like a “cry for help” with disability-related concerns are apparently ignored. Thus, the data substantiates problems with the implementation of assisted suicide laws and validates the concern that the risks of mistake, coercion and abuse are too great. Well-informed legislators on both sides of the aisle should vote against assisted suicide bill.

Please vote NO on HB 2739.

[1] https://dredf.org/wp-content/uploads/2015/04/Revised-OR-WA-Abuses.pdf

[2] https://dredf.org/wp-content/uploads/2012/08/Hendin-Foley-Michigan-Law-Review.pdf

[3]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf

[4] https://dredf.org/wp-content/uploads/2012/08/Oregon-DHS.pdf

[5]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf

[6] https://www.washingtontimes.com/news/2018/jan/11/diabetics-eligible-physician-assisted-suicide-oreg/

[7] https://dredf.org/public-policy/assisted-suicide/why-assisted-suicide-must-not-be-legalized/

[8] http://www.nejm.org/doi/full/10.1056/NEJMra1404688

[9]http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/pt-req.pdf