Not Dead Yet Testimony Opposing Minnesota Assisted Suicide Bill

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[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suicide proposal tabled after emotional hearing (Star Tribune, 3/17/16); Minnesota’s assisted-suicide bill withdrawn after impassioned testimony (Twin Cities Pioneer Press, 3/16/16).]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.

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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

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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

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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.

Message from ASAN: Join in Disability Day of Mourning

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[Editor’s Note:  Not Dead Yet joins the Autistic Self Advocacy Network (ASAN) and other disability organizations across the country in the Day of Mourning.  Below is a message from ASAN about this annual day of remembrance of lives lost.]

Today, March 1st, is the 2016 Disability Day of Mourning – a day for disability communities, organizations, and groups around the country to gather and cherish the memories of those who we have lost to senselessness violence at the hands of those they should have been able to trust most. We gather to recommit ourselves to continue to strive to seek justice for these crimes so as to prevent them from ever occurring again.

In the past five years, over one hundred and eighty people with disabilities have been murdered by their family members.

These acts are horrific enough on their own. But they exist in the context of a larger pattern. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden” of having a disabled person in the family. If the parent stands trial, they are given sympathy and  comparatively lighter sentences, if they are sentenced at all. The victim is disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.

Today, we gather, and speak the names of those taken from us. But in doing so, we do not just mourn. We kindle new hope, of the possibility of a better world, one in which disabled Americans are recognized as equal and disabled blood is not viewed as cheap and easy to spill. We remember our own – and in doing so, strengthen the bonds that make among us a common community, a common identity. These bonds strengthen and enstrengthen each of us, opening up the door to happier days and commemorations ahead. Today, our shared sorrow and mourning make us one.

ASAN asks you to join us today in this year’s vigils to bring awareness to the ongoing tragedy, and to demand equal rights, protection and justice for all citizens.

Ari Ne’eman 
President 
Autistic Self Advocacy Network

Julia Bascom
Deputy Executive Director
Autistic Self Advocacy Network

Current vigil sites and contact information can be found on the ASAN website.

Colorado NDY Board Member Op-Eds Published; Hearings Underway

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Carrie Ann Lucas and Anita Cameron have just had excellent commentaries opposing assisted suicide bills published in Colorado.

Carrie Ann’s op-ed, Legalizing assisted suicide in Colorado would threaten disabled, appeared in the Denver Post on January 25, 2016.  After describing her busy life as an attorney with four children who uses a ventilator full time, she explains the risks these laws pose to countless disabled people like her:

I have a terminal condition — very much like ALS — and if assisted suicide were legal, I would qualify. This legislation directly threatens me, my family and my community. Much like terminally ill patients, we are vulnerable and can see how legalizing assisted suicide puts us at risk. That’s why most disability organizations oppose legalization of assisted suicide.

If I were to become depressed — either situational depression or major depression — and this bill passes, I could go to my doctor and ask for a lethal prescription. Because I have a disability, and because physicians are terrible at evaluating quality of life of people with disabilities, I would likely be given that lethal prescription, rather than be referred for mental health treatment. And if my doctor did not give me the lethal prescription, I could simply doctor shop until I found one who would.

To read Carrie Ann’s entire op-ed, go here.

Anita Cameron’s commentary, I choose to live!, appeared in the January 30th edition of the Pueblo Chieftain.  Anita highlighted a number of concerns about the Colorado bill.  For example,

Unscrupulous family members, caregivers and heirs who would coerce those with prescriptions to fill and take them is only one of the pitfalls of this bill. There is no oversight, no state reporting and no witnesses required at the time of death to say if the medication was taken voluntarily.

She also noted a key Pew Center study reflecting the cultural demographics of support and opposition to a public policy of assisted suicide:

My concern about this bill is also rooted in culture: As a black Latina, I have never understood support for assisted suicide. I thought that it was some odd thing that privileged white people were into.

My thoughts were confirmed when I learned that the Pew Research Center recently found that while 54 percent of whites supported assisted suicide, 65 percent of blacks and Latinos opposed it.

To read Anita’s entire op-ed, go here.

Members of Colorado Not Dead Yet and Colorado ADAPT will be testifying today and tomorrow (Feb. 3 and 4) at hearings being held in the Senate State, Veterans, & Military Affairs Committee and House Judiciary Committee.

Dawn Russell, a state and national leader of ADAPT, plans to testify, in part, as follows, referring to the Colorado Choice Transitions program that helps people move out of nursing facilities and into a real home:

People who are terminally ill are especially vulnerable and at risk. Diagnoses are often wrong and certainly prognosis are wrong.
One of the Colorado Choice Transitions in 2015, is a person with stage 4 breast cancer. She just spent Christmas with her son who was home for the holidays, he attends college in rural New York. She is about to renew her lease for another year.
Other concerns are financial pressure that may exist then the added cost of additional healthcare can push someone to doctor prescribed suicide. Not to mention our profit driven health care system that can easily put that same doctor in a life decision situation along with health insurers.
There are no safeguards for this! … ADAPT’s ask for legislators who support this and those on the fence vote NO. This is deadly legislation with no take backs.