John Kelly: Not Dead Yet and Second Thoughts make strong showing at Rhode Island hearing

assisted suicide, Autistic Self-Advocacy Network, depression, elder abuse, Our News & Commentary Blog, Rhode Island, Second Thoughts, Second Thoughts Connecticut, , , ,

Chair gives “Not Dead Yet” an “A” for best name of the evening

Disability rights advocates from Rhode Island, Connecticut, and Massachusetts testified on March 24 before the House Health Education and Welfare Committee that it should have “second thoughts” about assisted suicide bill HB 7659. We pitted the harsh realities of assisted suicide laws against the falsehood-packed PR strategy of Compassion & Choices (C & C).

Rhode Island autistic advocate Emily Titon spoke on behalf of Not Dead Yet, Stephen Mendelsohn testified on behalf of Second Thoughts Connecticut, while John Kelly presented on behalf of both Not Dead Yet and Second Thoughts Massachusetts.  The hearing video is available online and these testimonies begin approximately at minute markers 35 and 49.  Written testimony was submitted by Not Dead Yet president and CEO Diane Coleman and Cathy Ludlum of Second Thoughts Connecticut.

At the start of the hearing, Chair Joseph McNamara announced the bill would be sent to study, which he said would keep the bill alive with the possibility of being amended. The reality is that the bill is almost certainly dead, although it could technically be brought forward at any time.

Emily testified that the bill would immediately endanger people experiencing depression, citing the example of Oregonian Michael Freeland, who despite a 43 year history of suicide attempts and depression, easily got a prescription for the lethal drugs.

Against the C & C strategy of presenting personal stories of pain and agony, Emily testified that “What ever else assisted suicide is, it is not about pain. Pain is a medical problem that palliative care can solve.”

The kind of suffering this bill talks about is social and psychological. Doctors report people choosing suicide because of loss of dignity, loss of autonomy, feeling like a burden, and loss of control of bodily functions.

Emily cited the realities of elder abuse, which affects over 20,000 Rhode Islanders over the age of 60. “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.”

Stephen Mendelsohn told the committee that “we have crushed these bills in at least nine states this year and the past three years in Connecticut without a single committee vote. “

Stephen said that Connecticut is the first state to recognize explicitly that “assisted suicide is actually a form of lethal discrimination against disabled people.” He read a 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.”

Thanks to Second Thoughts Connecticut, one of the Board’s most important recommendations was:

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

This simple recommendation collapses the house of assisted suicide cards so carefully constructed by the PR machine at Compassion & Choices. C & C has figured that if they terrify enough people of dying in agonizing pain, they may be able to pass the program they wanted all along. And once they establish the goodness of the treatment known as “aid in dying,” they can go about expanding eligibility, step by incremental step. As Not Dead Yet research analyst Stephen Drake has said, once something is defined as a benefit, it can only be extended.

Stephen Mendelsohn catalogs the recent efforts:

Leaders of Compassion & Choices and other “right-to-die” organizations have publicly stated their intent to come back later to expand beyond “six months,” “terminally ill,” and “mentally competent.” At a gathering in Hartford, Connecticut in October 2014, Compassion & Choices president Barbara Coombs Lee declared her support for assisted suicide for people with dementia and cognitive disabilities unable to consent.  CT News Junkie quoted her saying, “It is an issue for another day but is no less compelling.”  Dr. Marcia Angell, leading proponent of the defeated 2012 Massachusetts’ assisted suicide ballot question, wrote in The New York Review of Books that she now favors euthanasia as well as assisted suicide. Last year, Oregon debated legislation (HB 3337) with six co-sponsors that would have extended eligibility for assisted suicide from a six month prognosis to one year.

My testimony started with the fundamental, irrefutable truth of assisted suicide. “This bill is so dangerous because it will cause innocent people, through mistakes and abuse, to lose their lives because doctors are so often wrong about diagnosis and there are so many Rhode Island elders that are abused.” I ridiculed C & C’s promotion of assisted suicide as providing “choice.”

We cannot speak meaningfully about choice when thousands of people graduate from hospice every year. They outlive their six-month diagnosis and what for them is the best possible outcome – graduating from hospice – under this bill, becomes the worst sort of tragedy, in that people will lose their lives when they had months, years, or decades to live.

It seems that everyone knows someone who has been diagnosed terminal and lived longer. Does anyone in this room really think that doctors are infallible?

I said that there could be no choice when one out of every 10 Rhode Island elders are estimated to be abused, when there is no guaranteed funded homecare, so a family has to weigh the inheritance versus care of a family member, and not when the leading reasons cited in Oregon all have to do with disability.

Chair McNamara then started a line of inquiry about our name “Not Dead Yet,”

“Your organization, Not Dead Yet, interesting name.” He was enjoying himself.

“It’s from Monty Python and the Holy Grail,” I called out.

“I love it!,” he roared. “That’s great. That’s great.”

“Bring out your dead.” “But I’m not dead yet.” (I repeated the key lines from the movie scene, in which a man pushes a wheelbarrow through a medieval town during the Black Death, calling “Bring out your dead. Bring out your dead.”)

“Beautiful. Very creative.” McNamara was beaming. “You get an A for the best name of the evening, so far.”

DREDF and NDY Weigh In Against Proposed CA “1-800-KILL_ME” Hotline

assisted suicide, california, dredf, elder abuse, Marilyn Golden, Our News & Commentary Blog, Patients Rights Action Fund, suicide prevention, , ,

[Editor’s Note:  Thanks to the Patients Rights Action Fund for the brilliant “1-800-KILL_ME” label.  It says it all.]

A lead sponsor of the California assisted suicide law has proposed to take the state sponsored program to a whole new level, urging legislators to fund a dedicated phone line to promote – eh, respond to questions about – the assisted suicide process.

Marilyn Golden, Senior Policy Analyst at the Disability Rights Education & Defense Fund, wrote the following pointed introduction to the problems in the proposed bill:

The Disability Rights Education & Defense Fund (DREDF), a national law and policy center on disability civil rights, opposes SB 1002, The End of Life Option Act Dedicated Telephone Number.

This bill is an expansion of the assisted suicide law even before it goes into effect. It’s a way to promote usage of the assisted suicide law. Last year the authors and proponents said this was a private matter solely between doctor and patient. Now the state would play a role in the law’s promotion.

There is no way to limit callers to people who are terminally ill, which is the distinction made in the End of Life Options Act. Anyone could call, including people who are depressed, and people eager to end the life of a family member. Will the state go beyond providing information about the End of Life Options Act? Will it make any referrals? If it refers callers to Compassion & Choices, why not Final Exit Network, which actively assists people to kill themselves without the involvement of a doctor? If the state refers people anywhere, it should be to crisis hotlines, because, again, anyone could be calling, not only people eligible under the Act.

How will state staff respond when a caller says:

  • “My doctor won’t prescribe lethal drugs to me because she says I don’t qualify. Can you tell me who will?”
  • “I am depressed and want to kill myself; what should I do?” Will the state refer the person to a crisis hotline? It should.
  • “I believe my father is being coerced to utilize the End of Life Options Act.” What will the state do? Note that there is no investigative mechanism available to refer callers to. Will it refer callers to law enforcement?
  • “How can I get medicine for pain?” How will the state respond?

To read the whole letter, go here.

NDY picked up the charge, further connecting the dots concerning the dangers of such a hotline and the impossibility of reconciling it with the state’s existing duties to protect its residents:

The push to create this phone line only serves to emphasize how impossible it is to reconcile the new law with the state’s longstanding duties to prevent suicide and enforce laws prohibiting homicide.

There is no way to limit callers to people who are terminally ill, the target population of the End of Life Options Act. Anyone could call, including people who would formerly have been referred to a suicide prevention hotline, or people who want to learn exactly how to get away with ending the life of a family member. The law’s assisted suicide request form, whatever it may be called, provides the perfect alibi, with no further oversight once the lethal drugs are in the home. Any description of the actual provisions of the law that is given by state workers will clarify to the greedy heir of a senior with assets just how easy it would be to use the law’s recipe for abuse and get away with homicide. After all, the victim of any coercion in getting the form signed “to give them peace of mind” will not be around to testify after the drugs are mixed into their food.

To read the whole NDY letter, go here.

Not Dead Yet Testimony Opposing Minnesota Assisted Suicide Bill

aid in dying, assisted suicide, Minnesota, Not Dead Yet, Our News & Commentary Blog, Testimony, ,

[Editor’s Note:  Following the hearing, the bill was tabled until next year.  The following news coverage quoted disability advocates:   Doctor-assisted suicide proposal tabled after emotional hearing (Star Tribune, 3/17/16); Minnesota’s assisted-suicide bill withdrawn after impassioned testimony (Twin Cities Pioneer Press, 3/16/16).]

Today, Wednesday, March 16, the Minnesota Senate Health, Human Services, and Housing Committee held a hearing on SF 1880, a proposed bill to legalize assisted suicide.

As usual, proponents hinge their arguments on the claim that the Oregon experience proves that the law is safe.  They never mention the deficiently minimal reporting and non-existent investigation or oversight under the Oregon law.  They definitely never mention the cases of abuse that have come to light through mainstream press and professional journals, which are detailed with references here.

There was strong turn out of people opposed to the bill, including from the disability community.  Kathy Ware and her son Kylen attended with “Not Dead Yet” signs.

CdrxP0mW0AIDIVo

NDY submitted written testimony by email to each committee member.  Among other things, we offered the following information:

. . . The prescribing doctor’s also fill out a final report after the death, among other things stating the reasons for the request for assisted suicide.  Among the top five reasons given are feelings of being a “burden on others” (41%) or feeling a “loss of autonomy” (92%) or “loss of dignity” (78%).  These are not about pain from a terminal disease, but are psychological and social issues that cry out for meaningful supports and genuine care.  Yet the assisted suicide law does not even require disclosures about consumer controlled home care options to address feelings of loss of autonomy or being a burden, much less require that those services be provided.

*** Still, some might say, didn’t the person initiate the request for assisted suicide?  Didn’t they have to self-administer the lethal dose?

Most people who have been reported to use assisted suicide in Oregon age 65-84, in a society where one in ten elders are abused according to federal figures.  The abusers are usually family members.  About half the people reported to use assisted suicide in Oregon did not have a health provider present at the time of death.  With no independent witness required, there is no evidence that they self-administered the lethal drugs, or even that they consented at the time of death.  These bills have to be considered in light of the sad reality that not all seriously ill people have loving family.  Assisted suicide laws grant blanket immunity and effectively foreclose investigation of wrongdoing.

Moreover, as a person who has been disabled all of my life, I’ve learned that some of the health care that I’ve needed will not be covered by the available forms of insurance, because it won’t cure me and it “costs too much”, things that would have helped me maintain more physical function longer or reduced the help I needed from family. This is a common experience in the disability community. The idea of mixing a cost-cutting “treatment” such as assisted suicide into a cost-conscious health care system that’s poorly designed to meet a seriously ill patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill.  When push comes to shove over the health care needs of a disabled Minnesota resident, whose corner will the doctor be in?  These realities undermine the image of “choice” that is being sold by assisted suicide advocates.

To read the complete testimony, go here.

Two Disability Advocates Speak at NY Press Conference Opposing Assisted Suicide Bills

assisted suicide, cdr, center for disability rights, media bias, New York, NY Alliance Against Assisted Suicide, Our News & Commentary Blog, , ,

The New York Alliance Against Assisted Suicide held a press conference on Tuesday, March 8, to discuss “Why New York Progressives Should Oppose Assisted Suicide.”  The NY Alliance media advisory listed the scheduled speakers and described the event as follows:

JJ Hanson, President, Patients’ Rights Action Fund
Michael Burgess, Spokesperson, NY Alliance Against Assisted Suicide
Meghan Schoeffling, Policy Analyst, NY Association on Independent Living
Beth Mahar, Director of Member Services, Hospice & Palliative Care Association of NYS
Adam Prizio, Manager of Government Affairs, Center for Disability Rights

Albany, NY – On Tuesday, March 8, 2016 at 1:00 PM, in the LCA Press Room, Room 130 of the LOB, the New York Alliance Against Assisted Suicide will lay out the progressive case against physician-assisted suicide.

Speakers will include a terminal brain cancer patient and representatives from the disability, aging, and hospice communities. They will outline numerous concerns with the legislative proposals (S.5814-A/A.5261-C and S.3685/A.2129-A), including:

  • Risks of coercion and abuse of elderly and vulnerable populations
  • Discrimination against people with disabilities
  • Possibility of misdiagnoses
  • The role of depression and hopelessness
  • Fracturing of doctor-patient relationship
  • Suicide contagion
  • Absence of safeguards and lack of accountability
  • Need to promote “aid-in-living”: hospice and palliative care

The New York Alliance Against Assisted Suicide is an alliance of disability rights, healthcare, civil rights, faith-based and patient advocacy organizations dedicated to preventing the legalization of assisted suicide in New York.

The Albany Times Union covered this press conference about opposition to bills establishing a state sponsored program of suicide facilitated by medical providers, leading with a good title – Physician-Assisted Suicide Faces Pushback– and using some quotes as well as describing some arguments against the bills pending in New York.

Inexplicably, however, the Times Union completely omitted two speakers, Meghan Schoeffling and Adam Prizio, who represented state disability groups – the NY Association on Independent Living (NYAIL) and Center for Disability Rights (CDR), respectively. Neither of these speakers were quoted, nor were they or their organizations even mentioned in the Times Union article.  Online photos featured people with obvious disabilities, but the article otherwise ignored them.

And it’s not that the article ran out of space.  The Times Union spent three paragraphs talking about a recent visit by an out-of-state proponent of legalizing assisted suicide.  They even found space to mention someone in the room who didn’t speak:  “Though no religious leaders spoke at Tuesday’s press conference, the Rev. Jason McGuire — executive director of New Yorker’s Family Research and New Yorkers for Constitutional Freedoms — was in attendance.”

In contrast, coverage by WNYT Channel 13 fairly represented the disability opponents, who were visibly the most prominent group present:  ‘Death with Dignity’ opponents argue for better end-of-life care.

It’s difficult to avoid the conclusion that the Times Union drank assisted suicide proponents’ Kool-Aid, framing the issue as a dispute between “compassionate progressives and the religious right.”  It’s a false depiction, and disability rights advocates don’t fit that story line.  In fact, Albany politicians well know that NYAIL and CDR consistently advocate to protect Medicaid and shift its long term care dollars from institutional to home and community based services to ensure the freedoms of seniors and people with disabilities from being victimized by corporate nursing home greed.  Adam Prizio’s statement expressed some of these struggles:

Assisted suicide advocacy comes from a place of great privilege, although proponents may not think so. It comes from a place where the law only ever works as intended. From a place where families are always safe; where caregivers always have the best interest of the family member at heart; a place where people do not have to fight for their right to live a full and independent life in the community. It comes from a place that can afford to discount the financial reality that assisted suicide will be cheaper than treatment, even cheaper than palliative care.

These advocates have held countless non-violent disability civil rights protests in the capital and no one would confuse them with the religious right.  To read all of Adam Prizio’s statement, go here.

There’s no excuse for the Times Union’s exclusion of disability advocates from coverage of this press conference on why progressives should reject proposals to legalize assisted suicide.  Legislators and voters deserve the whole story, not the thinly veiled bias we saw this week.

 

 

Assisted suicide bills that have failed in 2016

aid in dying, assisted suicide, legislation, Maryland, Our News & Commentary Blog

The Patients Rights Action Fund (PRAF) just sent out a very helpful summary of the failures of assisted suicide bills in 2016 so far.  Quoting from the PRAF press release:

Overview of where assisted suicide bill have been rejected so far in 2016:

Maryland – This week assisted suicide proponents withdrew legislation noting to the Associated Press, “it became clear the measure did not have enough votes…” The bill author further mentioned that it is unlikely a new bill will be reintroduced next year due to the strong opposition.  The Maryland Senate includes 35 Democrats and only 12 Republicans, and the House of Delegates holds 98 Democrats and 43 Republicans.

New Jersey – Following an aggressive two-year campaign effort by assisted suicide supporters, S382 was shelved. Democratic Senator Peter Barnes noted publicly, “There was never a groundswell of support for this bill.”

Iowa – After a brief February debate and opposition testimony from cancer survivors and others, this bill failed to move through a Senate sub-committee.

Colorado – A bill that would have legalized assisted suicide in Colorado failed in a Senate committee last month.   A few weeks later, the Colorado Assembly failed to take up the bill because there were not enough votes to pass it.   In addition, the Colorado Title Board voted not to advance a ballot measure to legalize assisted suicide and euthanasia. This bill and proposed ballot measure were strongly opposed by a coalition that included doctors, patients and disability rights advocates.

Utah – Following testimony, a bill to legalize assisted suicide was unanimously sent back to the Rules Committee, killing the bill for the remainder of the year.

Arizona – Similar to previous attempts to pass assisted suicide legislation, a new bill once again failed to get the support needed to pass the Senate’s Health and Human Services Committee.

We also know that there was an informational hearing on assisted suicide held today in Iowa, and that some disability advocates testified in opposition to bills that would legalize such a public policy.

To read the entire PRAF release, go here.

News media also reported that a Nebraska assisted suicide bill was tied in committee, though it could still possibly move this year.  Ironically (from our viewpoint), the Star Herald article was entitled Nebraska senator says aid-in-dying bill not dead yet.

Kathy Hoell submitted testimony on behalf of Not Dead Yet in Nebraska, based on her compelling personal story:

I had a Brain Injury a number of years ago, I was paralyzed from the neck down and was dependent on a ventilator for an extended period of time. At that time my family was not given much hope that I would survive. I realize there have been advances in medical care since then. But not to the extent many think. Over the past couple of years, I developed some pulmonary and cardiac issues that the doctors were sure would have been the end of me. Well they were wrong again. I am now back at work and leading my life as I did before. I had what the medical professionals considered a terminal condition both times that would have made me eligible for the assisted suicide bill that is under consideration. . . . . At any time during my journey what could have happened if I had become depressed? LB 1056 would establish a government sponsored program of assisted suicide facilitated by doctors.

To read Kathy Hoell’s entire testimony, go here.

Despite proponents’ claims of the inevitability of a public policy of assisted suicide, a strong alliance of disability advocates and other opponents of these bills have proven them wrong over 150 times in past years and continue to do so in 2016.