Showing posts with label Marilyn Golden. Show all posts
Showing posts with label Marilyn Golden. Show all posts

Thursday, August 7, 2025

EPC-USA's Broad Coalition Participated in the American Academy of Family Physicians conference.

Colleen E. Barry

The cost to attend medical conferences is prohibitive. Consider donating to the EPC - USA (Donation Link).

The American Academy of Family Physicians (AAFP) FUTURE conference held from July 31 - August 2 in brought together medical students and residents from across the nation with family medicine leaders, residency programs and potential employers for three days of family medicine exploration + celebration." Event. Euthanasia Prevention Coalition (EPC) - USA had an Honor and opportunity to participate in the "AAFPFUTURE" Conference. 

Part of EPC-USAs' goals are to educate the public along with professionals on issues related to euthanasia, assisted suicide and their effect on society. We provided educational materials, discussions. Assisted Suicide is fundamentally incompatible with the physician’s role as healer. EPC-USA recognizes that Doctors are the original opponents of assisted suicide.

EPC-USA was grateful with the many discussions as well as a great amount of basic information given to participants, including resources and follow up material from Dr. Sharon Quick, President of "Physicians for Compassionate Care educational Foundation". Dr. Quick has expressed that: 

“A death request is often a plea for help, but legalizing assisted suicide may allow an option to die to transform into a duty to die.”
EPC-USA was able to educate Medical Students and a broad coalition of doctors, medical professionals and attorneys about people who have experienced the direct threat of assisted suicide against themselves or a family member. EPC-USA shared the history of Disability groups such as Not Dead Yet, Second Thoughts and DREDF (Disability Rights Education & Defense Fund), just to name a few who have been at the fore front to stop assisted suicide. 

A monumental past leader of DREDF, Marilyn Golden stated: 

“If these bills pass, some people’s lives will be ended without their consent, through mistakes and abuse.” “No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”
EPC-USA was able too share the many successes when state coalitions encompassing a broad variety of individuals and groups led their state legislators to understand their concern and opposition to assisted suicide. 

One of EPC-USA’s missions is to combat the growing acceptance of assisted suicide through advocacy and education. The broad variety of individuals and groups includes progressive's as well as conservatives, includes a disability and human justice-based movement to prevent the legalization of assisted suicide and euthanasia and to end these practices where they exist. Assisted suicide cuts to the heart of what kind of society we want to live in.

Discussions with conference participants included physicians explaining that their care of patients, must establish a physician-patient relationship based on mutual trust and respect to be able to render the best care to their patients. Not assisted suicide. 

Many Medical students and residents were very appreciative to see EPC-USA's booth and expressed the concerns that they have with assisted suicide. These medical students expressed their goal of caring for many patients throughout their lives, extending through to their last days of life.

There were residents, medical students and physicians that were surprised to see our booth and expressed confusion. It was a great opportunity for EPC-USA to share basic information, discussion and provide resources from others doctors that have actively taken a stand to help society realize the problems with assisted suicide. These doctors explain that assisted suicide is Not a Therapy or a Solution.

EPC-USA professionals in attendance were so successful that we ran out of educational material and resources including a the story of a doctor working with a patient that qualified for assisted suicide. The doctor knew that the patient was caught up in the hype of the newly passed assisted suicide law in Oregon and was depressed by a new prognosis. The doctor guided the patient out of out the depression. The patient is still alive and well today. EPC-USA also ran out of educational material on a list of coercion and complications cases that is provided by a disability rights group.

Assisted Suicide is not a type of medical treatment. And affects the nature of medical treatment in our society.

Our table at the American Academy of Family Physicians (AAFP) FUTURE conference was an incredible success.

The cost to attend medical conferences is prohibitive. Donate to the Euthanasia Prevention Coalition (EPC) - USA (Donation Link).

Colleen Barry is a nurse and the Chair of the Euthanasia Prevention Coalition (EPC) - USA

Monday, February 27, 2023

Stephen Mendelsohn: Strong opposition to Connecticut Assisted Suicide Bill SB 1076

By Stephen Mendolsohn

Stephen is a leader of the disability rights group, Second Thoughts Connecticut and a member of the EPC-USA board.

Senator Anwar, Rep. McCarthy Vahey, and members of the Public Health Committee:

“If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.” —Marilyn Golden (1954-2021), Senior Policy Analyst at the Disability Rights Education and Defense Fund

I am an autistic adult and one of the leaders of Second Thoughts Connecticut, a coalition of disabled people opposed to the legalization of assisted suicide. I also serve on the board of directors of Euthanasia Prevention Coalition-USA and previously served on the Connecticut MOLST Task Force.

Notwithstanding the attempt to add additional and mostly unworkable “safeguards” from previous iterations of this legislation, SB 1076 is fatally flawed and should be rejected. 

These added safeguards are part of a deliberate bait and switch tactic by proponents to get a bill passed and then come back to amend it to gut these and other safeguards. This was openly acknowledged by J.M. Sorrell, Executive Director of Massachusetts Death with Dignity, who was quoted on a similar bill in his state, saying, “Once you get something passed, you can always work on amendments later.” This incrementalist strategy is also confirmed in Kim Callinan’s testimony for Compassion & Choices, who describes these changes from previous assisted suicide bills as “unnecessary” and claims they “will result in more patients being unable to access the law.”

Some of the new provisions are likely to be immediately challenged in court. The enhanced residency requirement in SB 1076 is at odds with lawsuits filed by Compassion & Choices in Oregon and Vermont claiming that all such residency requirements are unconstitutional. The provision in Section 21 requiring an attending physician to meet every thirty days with a patient who has been prescribed lethal drugs to either certify the patient still qualifies or to dispose of the drugs is either unworkable, unconstitutional, or both. Once a patient receives a lawfully obtained lethal concoction of DDMAPh costing nearly $1000 from a mail-order compound pharmacy, there is no way to control what happens to it. You cannot compel a patient to meet with their doctor, and it would require a search warrant to enter the patient’s private home. Moreover, seizing a lawful prescription without compensating the patient who just forked over a significant amount of money for it would violate the Due Process and Takings Clauses of the Fifth Amendment, which respectively require due process and just compensation before the government seizes someone’s property.

We are in the midst of a serious opioid epidemic, yet we do not authorize searching the private homes of people lawfully prescribed opioids for unused pills and seizing them. Simply put, no safeguard can prevent lethal drugs from being ingested by people who may have originally qualified but no longer do, nor is there any way to prevent misuse by others once lethal drugs are prescribed. In one recent case from Colorado, after the intended patient took a swallow and exclaimed “Man it burns!” (as amitriptyline in the lethal compound burns the throat), a bystander also swallowed the lethal concoction and nearly died before being rescued by EMS personnel.

The mandatory counseling provision can be met my a brief consult with a social worker affiliated with Compassion & Choices for this purpose. If the attending physician is a psychiatrist prescribing for someone whom he/she/they have diagnosed as having “terminal anorexia,” there appears to be nothing in SB 1076 to prevent this psychiatrist from self- referring the patient, as a psychiatrist can qualify for both roles.

As you are probably aware, people with a sole diagnosis of anorexia nervosa have been prescribed and have died from lethal prescriptions in both Colorado and Oregon. This has even led to Compassion & Choices finally admitting to an abuse of the law. Kevin Díaz, C&C’s Chief Legal Advocacy Officer, states on the organization’s website that “This law does not and was never intended to apply to a person whose only diagnosis is anorexia nervosa.” Yet in her testimony for this bill, Kim Callinan appears to state otherwise: “There have been no documented or substantiated incidents of abuse or coercion across the authorized jurisdictions...” Does Ms. Callinan thus approve of assisted suicide for people with a sole diagnosis of anorexia? And can we really believe a single word she says when she makes this astonishing and demonstratively false claim?

The definition of “terminal illness” in Section 1 (21) was tweaked once again, this time to read “physical medical condition.” Nothing here would exclude anorexia nervosa from qualifying, as the main symptom is physical—the patient is emaciated. Indeed, biological psychiatrists have long claimed that “mental illnesses” are “physical medical conditions,” and NAMI asserts that “mental illnesses are physical illnesses.”

Nor would the mandatory counseling requirement exclude people with anorexia from receiving lethal prescriptions, as most would meet the definition of “competent” in Section 1 (4). As psychiatrist Dr. Angela Guarda, director of the Johns Hopkins Eating Disorders Program, has testified elsewhere:

Patients with anorexia appear rational in all ways but one: they lack the capacity to accept the care they most need. Yet they meet the definition of capacity in this [assisted suicide] bill. Instilling hope is crucial for a positive therapeutic stance. How as a physician do I hold this view when I do not know which, if any of my patients are incurable? I oppose this bill because there’s too much room for error. It risks endangering the most vulnerable and the one in five Americans who suffer from a treatable mental condition.
Last year, the definition of “terminal illness” in Section 1 (21) added the words “... if the progression of such condition follows its typical course.” As Cathy Ludlum demonstrated in her powerful l testimony, she qualifies for lethal drugs under this definition. As Fabian Stahle notes, so do people with chronic conditions like insulin-dependent diabetes who reject treatment. So do people who have treatment denied by their insurance company or are otherwise unable to afford it. So do people with anorexia nervosa. Without nutrition, the “typical course” for anorexia is death in under six months. The American Clinicians’ Academy on Medical Aid in Dying (ACAMAID) has a case report in which their “Ethics Consultation Service” stated,
If the patient’s eating disorder treating physician and evaluating psychiatrist agreed that she had a “terminal disease” and retained decision-making capacity, she would meet those requirements of the aid in dying statute in her jurisdiction.
Less than two months ago, ACAMAID’s “Ethics Consultation Service” published another case report, this time on Voluntary Stopping of Eating and Drinking and Medical Aid in Dying, pushing the boundaries of “terminal illness” to its logical extreme. Their members found that “Legally, there is nothing in the letter of the law of any of the U.S. states’ aid in dying bills that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.” They further note that allowing VSED to qualify for lethal prescriptions would “essentially eliminate the criteria of terminal illness to qualify.”

Thus virtually anyone at least 21 years old who is depressed, unhappy, traumatized, or lacks the will to live can qualify as “terminally ill” for a lethal prescription simply by electing to use VSED. It should be noted that some ACAMAID team members were not willing to support this position, arguing that “[e]mbarking on this could imperil the currently existing laws that allow access for terminally ill patients.” It is clear that what matters to ACAMAID, C&C, and the rest of the assisted suicide lobby is how far they can expand the law, whether by amendment or reinterpretation, without encountering pushback.

All of the ostensible safeguards in SB 1076 are rendered unenforceable and meaningless by the mere “good faith” standard in Sections 14(f) and 19. This “good faith” standard creates an unacceptable carve-out from the prevailing professional standard of care required for all other patients under Section 52-184(c) of the Connecticut General Statutes. As it is virtually impossible to prove that a medical provider did not act in “good faith,” providers granted legal immunity under this statute can use creative interpretations of the law, as ACAMAID has already done, to reinterpret and expand the law without resorting to amending it.

Regarding falsification of the death certificate, Section 9 (6) (b) from the 2013-2021 bills, stating “The person signing the qualified patient's death certificate shall list the underlying terminal illness as the cause of death,” has been removed from SB 1076. In no way does this mean that death certificates will not continue to be falsified. Previous bills demonstrate clear intent to do so, as does last year’s oral testimony from death certificate certifier Shannon E. Stanford, MD, who said that “people are free to write what they want on the death certificate” (on YouTube starting at clip position 5:25:55).

In Oregon, language mandating death certificate falsification is not in statute but is in regulations, and that is certain to be the case in Connecticut. The only way to correct this is to specifically include language similar to Oklahoma’s Death Certificate Accuracy Act, §63-1- 316b. It states in part:

A certifier completing cause of death on a certificate of death who knows that a lethal drug, overdose or other means of assisting suicide within the meaning of Sections 3141.2 through 3141.4 of this title caused or contributed to the death, shall list that means among the chain of events under cause of death or list it in the box that describes how the injury occurred. If such means is in the chain of events under or in the box that describes how the injury occurred, the certifier shall indicate "suicide" as the manner of death. 
A certifier who knowingly omits to list a lethal agent or improperly states manner of death in violation of subsection E of Section 1-317 of this title shall be deemed to have engaged in unprofessional conduct as described in paragraph 8 of Section 509 of Title 59 of the Oklahoma Statutes.

It is deeply disheartening that a bill to require honest death certificates, HB 5486, was not granted a public hearing by this committee. That proposed bill would have enacted similar language here in Connecticut to the aforementioned Oklahoma statute:

That the general statutes be amended to require, upon legalization of any provision allowing the prescribing of medication to a terminally ill patient that the patient may self-administer to bring about death, a medical certifier completing cause of death on a death certificate, who knows that a lethal drug, overdose or other means of assisting suicide caused or contributed to the death, shall list such means among the chain of events under cause of death, and, if such means is in the chain of events, the certifier shall indicate "suicide" as the manner of death.
The actual purpose here is to avoid covering up foul play in a potential murder prosecution, which is the real problem with death certificate falsification as noted by previous testimony from the Division of Criminal Justice.

The “accordance” language in Section 14 (c) and (d) of SB 1076 also mandates falsification of the manner of death. According to the Office of the Chief Medical Examiner, the choices in Connecticut are “homicide,” “suicide,” “accidental,” “natural,” “therapeutic complication,” or “undetermined.” The “accordance” language rules out homicide and suicide as a matter of law. “Accidental,” “therapeutic complication,” and “undetermined” are clearly ruled out, as the manner of death is both intentional and of known cause. Thus as in other states, the death will be deemed “natural,” even if it was unnaturally caused by an intentional overdose of lethal drugs. This would also interfere with a potential murder prosecution.

This “accordance” language would also interfere with our state’s suicide prevention plan, which calls this act suicide and notes the intersection between assisted suicide and suicide prevention, particularly in regard to suicide prevention for disabled people (pp. 57-59).

No amount of change in bill language can change the fact that some people will suffer prolonged and agonizing deaths from the experimental lethal drug cocktails, with some even regaining consciousness only to die of their terminal illness. Medical science cannot guarantee the peaceful death proponents claim. If lethal injections administered for capital punishment have resulted in inhumane deaths, oral ingestion of lethal drug compounds is far more likely to do so. We may put our pets down without their consent and for bad reasons—because they are unwanted or have behavior problems—but at least we do not make them ingest these experimental lethal compounds and make them suffer even more in the process.

No change in language can change the deadly mix between assisted suicide and a broken health care and home care system. As the cheapest “treatment,” assisted suicide diminishes choice, and especially so for people of color, disabled people, and others who have been historically marginalized in our health care system.

No change in language can change the problem of misdiagnosis or the unreliability of terminal prognosis. Jeanette Hall, John Norton, and Rahamim Melamed-Cohen have outlived ostensibly terminal prognoses by decades. All three became staunch opponents of assisted suicide.

No change in language alters the fact that offering suicide prevention to most people while offering suicide assistance (redefined as “aid in dying”) to an ever-widening subset of disabled people is lethal disability discrimination.

The definition of “attending physician” in Section 1 (3) was modified last year, and of “consulting physician” in the current bill, to exclude someone whose practice is “primarily comprised of evaluating, qualifying and prescribing or dispensing” the lethal drugs. This is apparently an attempt at discouraging doctor shopping. It will not work because anyone can just set up a 50-50 practice with half devoted to curative or palliative care and half to assisted suicide. Moreover, the limitation does not appear to be enforceable and there are no sanctions for setting up a practice primarily devoted to assisted suicide. It also does not pertain to the person providing counseling under Section 8 of SB 1076.

The definition of “competent” allows social workers to perform capacity evaluations, and still allows someone else to speak for a patient with a communication disability. Section 3 follows the 2015-2020 and 2022 bills in requiring two written requests and disallowing heirs and other interested parties from being witnesses to the dispensing of the lethal prescription. Nonetheless, an heir can still bring two close friends to be witnesses to a pair of faxed-in requests and allows the examination to occur via telehealth. The attending and consulting physicians may have no idea that the patient is being pressured into dying faster by an abusive heir. Moreover, there is no required independent witness at the time the lethal drugs are ingested. Many people change their minds, yet all “safeguards” end once the prescription is dispensed.

Beyond the failure of any changes to the bill language to protect against mistakes, coercion, and abuse, there is the issue of expansion. We only need to look at what Compassion & Choices and other proponents are saying, and the bills and lawsuits they have been pushing in other states. We can all remember when Compassion & Choices’ president emerita Barbara Coombs Lee came to Hartford in October 2014 declaring support for assisted suicide for people with dementia and cognitive disabilities unable to consent; in her words, “It is an issue for another day but is no less compelling.”

We can also look at recent expansion legislation and court cases being pushed by Compassion & Choices in other states, particularly those in states that already have legalized assisted suicide, including Oregon, Washington, California, Vermont, Hawai‘i, and New Mexico. Bills have provisions that would dramatically shorten and/or waive the mandatory waiting period, allow APRNs and PAs to prescribe lethal drugs, waive the requirement for a second doctor to confirm the ostensibly terminal diagnosis, allow almost anyone who does counseling for a fee to qualify in the rare case that the patient is referred for a mental health evaluation, eliminate residency requirements, allow mail-order delivery of lethal overdoses, and compel objecting providers to refer patients to other providers who will dispense lethal prescriptions.

This last provision, enacted two years ago as California SB 380, is a threat to patient safety, as noted by the example of Jeanette Hall, who sought to die under Oregon’s law but was persuaded by her doctor to accept cancer treatment and is still alive more than 20 years later. Under a “do or refer” regime supported by Compassion & Choices, people like Jeanette Hall would have their lives cut short by years or even decades as ethical doctors will be forbidden to use their professional judgment to encourage their suicide-minded patients to seek lifesaving treatment.

So when Compassion & Choices’ president Kim Callinan testifies about all of the “safeguards” in SB 1076, please remember she and her organization are working diligently to gut these same provisions in the aforementioned states that have already enacted this legislation.

Moreover, once the concept of certain people having a right to assistance with their suicides to end their suffering is codified into law, there is no limiting principle to prevent it from being extended to other disabled people who also may claim to be suffering. If SB 1076 were enacted, further expansion will move into the hands of judges. While we in the disability-rights community view legalizing assisted suicide as a violation of the Americans with Disabilities Act and the disability equal protection clause (Article XXI, amending Article V) of the Connecticut Constitution—people with certain disabilities are thus denied the benefit of suicide prevention services—judges could easily use both of these provisions to require extending the “benefit” of this “end of life option” to other disabled people. The limitations of “six months,” “terminally ill,” “mentally competent,” and “self-administer” in SB 88 all discriminate on the basis of disability. Indeed, back in 1999, former Deputy Attorney General of Oregon David Schuman wrote this response to state senator Neil Bryant regarding the issue of self-administration:

“The Death with Dignity Act does not, on its face and in so many words, discriminate against persons who are unable to self-administer medication. Nonetheless, it would have that effect....It therefore seems logical to conclude that persons who are unable to self-medicate will be denied access to a ‘death with dignity’ in disproportionate numbers. Thus, the Act would be treated by courts as though it explicitly denied the ‘benefit’ of a ‘death with dignity’ to disabled people....”

Indeed, the Connecticut Supreme Court’s ruling in State v. Santiago, striking down a prospective repeal of the death penalty in favor of full repeal, shows how our courts can expand laws beyond the intent of this legislature using equal protection grounds. The same principle is at work with SB 1076, which gives suicide assistance to some while others get suicide prevention, and the arbitrary difference is what disability they have.

So what about the person with ALS who has a six month prognosis, but has lost the ability to self-administer? What about the person with Parkinson’s disease, who will have tremors for years before dying? What about people with communication disabilities who may not be able to make the request on their own? What about Grandma with dementia, or the person with a severe psychiatric disability? Once the door to assisted suicide is pried open, Compassion & Choices will seek to open it further through the courts, going from six months terminal to one year, to perhaps five years; from assisted suicide to euthanasia; and from euthanasia for terminal illness, to chronic illness, to mental suffering. This is how we go down the same road as Canada, which has enacted Bill C-7 to allow euthanasia even for non-physical conditions, which is contemplating extending euthanasia to minors without parental involvement, and where hospitals routinely deny treatment to disabled people while offering euthanasia instead. For Compassion & Choices, these are merely issues for another day, and for them, no less compelling.

Legislators and the public should not be fooled by a privileged lobby that seeks to sell suicide as a solution to their own disability-phobia. We should follow the recommendations of the National Council on Disability’s report, “The Danger of Assisted Suicide Laws,” and reject codifying lethal and systemic disability discrimination into law. 

Wednesday, June 24, 2020

Listen to the disability community on assisted suicide.

The following letter was published by the Hampshire Gazette on June 23, 2020.

Sign the petition: Reject the Massachusetts Assisted Suicide bill (Link).
For years, I assumed the progressive position on assisted suicide was clear. But when I became involved in activism regarding disability rights and justice several years after becoming disabled myself, I learned more about the issue and ended up changing my mind.

Every major disability advocacy organization in the United States that has taken a position on assisted suicide opposes it. There are compelling reasons why, and legislators and the public can learn from listening to disabled voices on this issue.

Assisted suicide laws make it a legal and normal medical procedure that physicians may prescribe and health insurance may cover for terminally ill people. The biggest problem with legalized, normalized assisted suicide is how it interacts with the structural ableism that harms disabled people, and disproportionately harms those who are multiply marginalized. Misdiagnosis of illnesses as terminal is common.

In Oregon, a model state for assisted suicide, both private and government insurance plans have been documented denying cancer treatment while offering assisted suicide as an alternative.

Data collected from Oregon also shows that pain is not close to being in the top five reasons for assisted suicide. “Loss of dignity” and “feelings of being a burden” both rank far higher, issues which should be addressed by improving support services and creating a culture that values disabled lives, not by a prescription for suicide.

Over 70% of disabled people report experiencing abuse during their lifetimes. Prosecution and conviction are less common when the victim of abuse is disabled. In Oregon, there have been numerous egregious cases of caregiver abuse-involved assisted suicide that resulted in no prosecution, perhaps most notoriously the killing of trans woman Wendy Melcher.

To quote Marilyn Golden of the Disability Rights Education & Defense Fund, “If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome, which can never be undone.”

Please ask your legislators to take time to listen to disabled voices on assisted suicide and to vote against H.4782 / S.2745.

Jonah Carlson
Northampton

Tuesday, September 24, 2019

Webinar: Disability Rights Opposition to Assisted Suicide laws.

Announcing!
Webinar: Disability Rights Opposition
To Assisted Suicide Laws
Wednesday, October 30, 2019, 
3:00-4:30 pm Eastern Time
What Will You Gain By Attending:
  • Familiarity with the key issues, arguments and common questions
  • Materials that explain, detail, and document individual cases of assisted suicide problems and abuses
  • Understanding what disability has to do with assisted suicide
Speakers:
  • Anita Cameron, Director of Minority Outreach, Not Dead Yet
  • Diane Coleman, President/CEO, Not Dead Yet
  • Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund
  • John Kelly, Director, Second Thoughts Massachusetts
Topics Include:
  • What is Assisted Suicide?
  • What’s disability got to do with it?
  • Deadly mix between assisted suicide & pressures to cut healthcare costs
  • Elder and disability abuse; effects on other constituencies
  • Palliative care and palliative sedation can address pain
  • Failure of so-called “safeguards”
  • Minimal data and fatally flawed oversight, no investigation of abuse
  • Suicide contagion
  • What’s happening in Canada and other countries?
  • Take action!
For More Information: mgolden@dredf.org

Wednesday, June 13, 2018

California can right the wrong of assisted suicide

The following article was published as an opinion column by The Press Enterprise on June 12, 2018

By Marilyn Golden - Senior policy analyst, Disability Rights Education and Defense Fund.

Marilyn Golden
California made a mistake by legalizing assisted suicide, but now it has a chance to correct its error. California’s assisted suicide law was overturned by Judge Daniel Ottolia because the legislative process was not properly followed. If Judge Ottolia’s ruling stands, it will be a great protection for people with terminal illness, economic disadvantage, and especially people with disabilities.

But California Attorney General Xavier Becerra is appealing Judge Ottolia’s ruling in an effort to once again make assisted suicide legal in California. It is disappointing to see the person responsible for upholding the rule of law and the state’s constitution, defending an illegally passed law. No matter the procedural problem this court decision is based upon, disability rights advocates are opposed to assisted suicide laws because they have harmful impacts on people with disabilities.

Sign our petition: Say NO to assisted suicide in California. (Link).

Contrary to much of the rhetoric surrounding this debate, pain is not the top reason cited in most cases of assisted suicide. The California law is virtually the same as Oregon’s, the first assisted suicide law in the U.S. According to a recent report by the Oregon Public Health Division, the top five reasons for requesting suicide drugs by the patients were:
  • “Losing autonomy” (89.5 percent)
  • “Less able to engage in activities making life enjoyable” (89.5 percent)
  • “Loss of dignity” (65.4 percent)
  • “Losing control of bodily functions” (36.8 percent)
  • “Burden on family, friends/caregivers” (48.9 percent)
Each of these concerns describe what people with disabilities experience on a daily basis. These numbers strongly suggest that it is disability, or fear of disability, behind most assisted suicides under Oregon’s so-called model law. Further, this speaks volumes about our society and how it is terrified of living with a disability or caring for someone who lives with a disability.

Also alarming is that people experiencing depression may not be protected from obtaining lethal drugs. This occurred, for example, to Oregonian Michael Freeland. He had a 43-year history of depression and suicide attempts. Yet when Freeland saw a doctor about arranging an assisted suicide, the physician said he didn’t think that a psychiatric consultation was “necessary.” But the law’s supporters frequently insist that as a key safeguard, depressed people are ineligible for assisted suicide. If Oregon’s safeguards are claimed to be so thorough, how did Michael Freeland receive lethal drugs?

Like in other states where assisted suicide is legal, the “safeguards” built into California’s law are hollow. If a person fails to qualify for assisted suicide by one doctor’s evaluation, that person or their family, as in the case of Portland, Oregon, resident Kate Cheney, can shop for a doctor who will give them the lethal dose, over and over again if necessary.

As a disability rights advocate, there is no doubt in my mind that assisted suicide will have a profound negative impact on public insurance coverage of expensive medical treatment. This has also happened in Oregon, including to cancer patient Barbara Wagner, whose insurer denied coverage for a particular prescribed chemotherapy regimen. However, she was instead offered drugs that would have killed her by assisted suicide. Do we really think insurance companies will do the right thing, or the cheap thing?

Judge Ottolia’s ruling has provided a golden opportunity for California to reassess its stance on assisted suicide and expand access to palliative care and in-home and community-based personal care services. Lack of access to services is a pervasive problem for the disability community. However, allowing assisted suicide to be reinstated in California would undermine efforts to fix this problem, by allowing the cheaper, easier option of hastening one’s death as the only alternative to which everyone has equal access.

Suicide is not medical care, and we should not treat it as such. We urge California to seize this opportunity to help people with terminal illness, with economic disadvantage, and with disabilities by accepting Judge Ottolia’s ruling and rejecting the assisted suicide law. California should provide vulnerable people with authentic help, not this dangerous so-called medical treatment.

Marilyn Golden is a senior policy analyst with the Disability Rights Education and Defense Fund.

Tuesday, June 12, 2018

Disability Advocates Concerned as AMA Refers Assisted Suicide Policy for More Study

For Immediate Release: June 11, 2018

Contacts:
Diane Coleman 708-420-0539
Marilyn Golden 510-549-9339

Disability rights advocates led by Not Dead Yet are concerned with the American Medical Association’s decision today to continue studying the issue of physician assisted suicide. While the AMA’s longstanding policy against assisted suicide still stands, a simple affirmation of the policy was defeated in a 46-53% vote.

The current AMA policy states, in essential part:

“[P]ermitting physicians to engage in assisted suicide would ultimately cause more harm than good.

“Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
Two years ago, some AMA members raised the possibility of taking a neutral stance on the issue, and the matter was referred to the AMA’s Council on Ethical and Judicial Affairs. After two years of study, the Council recommended that the AMA maintain its policy opposing assisted suicide, but this recommendation was not accepted and the matter was referred back for further study.
“We had hoped that the AMA would follow the Council’s lead and affirm current policy once and for all,” said Diane Coleman, president and CEO of Not Dead Yet, a national disability organization. “Assisted suicide proponents have repeatedly tried to make this a culture war issue, ignoring the strong opposition of the AMA and other medical organizations, as well as numerous national disability organizations. But we’ll keep fighting for this critical protection for patients.”
The top three concerns raised by disability advocates in opposing assisted suicide bills have been:
  • If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Will insurers do the right thing, or the cheap thing? 
  • Elder abuse, and abuse of people with disabilities, are a rising problem. Where assisted suicide is legal, an heir (someone who stands to inherit from the patient) or abusive caregiver may 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? 
  • Diagnoses of terminal illness are often wrong, leading people to give up on treatment and lose good years of their lives, and endangering people with disabilities, people with chronic illness, and other people misdiagnosed as terminally ill.
Coleman has analyzed the Oregon state assisted suicide data and found that it substantiates a number of their concerns. This information was included in Not Dead Yet’s second of two formal submissions to the AMA Council on Ethical and Judicial Affairs.
“If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse,” said Marilyn Golden, senior policy analyst with the Disability Rights Education and Defense Fund. “No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.”

Thursday, September 28, 2017

Members Introduce Bipartisan Resolution on the Dangers of Legalizing Assisted Suicide

For Immediate Release - September 27, 2017
Contact Hailey Sadler (202) 225-3164

Full text of the resolution is available here.

WASHINGTON, D.C. – Today, Rep. Brad Wenstrup (R-OH), along with Rep. Lou Correa (D-CA), Rep. Andy Harris, M.D. (R-MD), Rep. Juan Vargas (D-CA), Rep. Darin LaHood (R-IL), Rep. James Langevin (D-RI), Rep. Ralph Abraham, M.D. (R-LA), Rep. Daniel Lipinski (D-IL), Rep. Keith Rothfus (R-PA), and Rep. Tom Suozzi (D-NY) introduced H. Con. Res. 80, expressing the sense of Congress that legalizing physician-assisted suicide puts the most vulnerable of our society at risk of deadly harm and undermines the integrity of America’s healthcare system. They issued the following joint statement:
“Protecting the vulnerable and providing quality care for all patients are cornerstones of any good healthcare system. Included in that is providing comfort and care for those facing the heart-wrenching challenges of dealing with a potentially terminal illness. In some cases, this commitment to fighting for the best care – even in the face of the most deadly diseases – can result in new and innovative cures, offering the chance of recovery for both the patient and for others suffering in the future. In other cases, it is simply a question of offering end-of-life comfort and support.

Physician-assisted suicide, however, does the opposite. It undermines a key safeguard that protects our nation’s most vulnerable citizens, including the elderly, people with disabilities, and people experiencing psychiatric diagnoses. Americans deserve better.

We will continue to defend every human being’s inherent dignity, and work to ensure patients facing the end of their lives have access to the best quality and most comprehensive medical care possible, including palliative, in-home, or hospice care, tailored to their individual needs. When governments support, encourage, or facilitate suicide – whether assisted by physicians or others – we devalue our fellow citizens, our fellow human beings. That should not be who we are."

Full text of the resolution is available here.

Nonpartisan patients’ rights and disability rights advocacy organizations across the country have spoken out in strong support of this bipartisan resolution, including:

Patients Rights Action Fund:

“Many do not realize that people battling terminal illness, people with disabilities and others are inadvertently targeted by the legalization of assisted suicide. I am grateful to Congressmen Correa, Vargas, Wenstrup and all of the other cosponsors for introducing this Sense of Congress resolution,” said J.J. Hanson, President and a terminal brain cancer patient. “This bill brings attention to this important issue and takes a big step toward protecting me and so many others from a death-too-soon.”
National Council on Independent Living: 
“Our society places a high value on physical appearance and ability, and stigmatizes significant disability. It's no surprise that those of us who grew up able-bodied and then became disabled might initially see disability as a huge loss of one’s former dreams and physical abilities,” said Kelly Buckland, Executive Director. “When someone is first hit with this, they may feel they’d be better off dead. As one struggles to get basic needs met, some people feel worn down. If assisted suicide had been legal in the past, even if it were supposedly only for those with “terminal” conditions, I might not be here today. I’m grateful that assisted suicide was not legal back then, and I'm committed to keeping it that way. This is an important reason why the National Council on Independent Living opposes assisted suicide laws. NCIL is a leader in the disability rights movement, our political struggle for equal rights. And, among other things, equal rights include equal suicide prevention.”
Disability Rights Education & Defense Fund (DREDF): 
“Where assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be undone,” said Marilyn Golden, Senior Policy Analyst. “The so-called safeguards are very weak, and the lack of oversight hides these dangers from public view. Moreover, assisted suicide laws are a prescription for elder abuse and abuse of people with disabilities. Supporters of assisted suicide say such laws won’t affect disabled people—but they will, whether or not they realize it. But there is a legal alternative: anyone dying in discomfort may legally receive palliative sedation. Under these circumstances, assisted suicide is not real choice, but a phony form of freedom.”
ADAPT: 
“Disabled people and seniors who need assistance with everyday tasks like dressing and bathing want the choice to get those services at home and to have control over how they’re delivered. We do not want to be forced into a nursing facility, nor forced to live in poverty to qualify. Unfortunately, that choice is not a reality for most of us. In states that have legalized assisted suicide, Oregon data shows, over a third of those who request assistance to die do so because of “feelings of being a burden” and over 90% cite “loss of autonomy” as a factor,” said Stephanie Woodward, Director of Advocacy. “If the only alternative to death is poverty and segregation in nursing facilities, assisted suicide is not a “choice.” Society is failing to ensure access to consumer controlled long-term services. The last thing we need in this time of draconian budget cuts in Medicaid is the legalization of assisted suicide laws, because the untimely deaths of disabled Americans can easily be seen as a cost saving answer.
Not Dead Yet: 
"As a national, secular, social justice organization, Not Dead Yet strongly supports this bipartisan effort to speak truth to the many myths about legalized assisted suicide," said Diane Coleman, President/CEO. "As Americans with disabilities, we are on the front lines of the nation's health care system that often devalues old, ill, and disabled people. So we are grateful for this Sense of Congress that explains the dangers of mistake, coercion, and abuse under a public policy of assisted suicide."
Physicians for Compassionate Care Education Fund: 
"Empowering doctors to assist patients in killing themselves has led to an inevitable erosion of trust in the motives of doctors, health care institutions, and insurers. This has been detrimental to patients, degraded the quality of medical care, and compromised the integrity of medical profession wherever assisted suicide has been legalized,” Dr. William F. Toffler, National Director. “The solution to suffering is not to end the life of the sufferer; rather society's focus at the end of life should be to alleviate suffering by improving access to hospice and palliative care whenever it is needed."
The Euthanasia Prevention Coalition supports H. Con. Res. 80 and we hope that the resolution will open the doors to a new awareness of how assisted suicide laws are designed to protect doctors who prescribe lethal drugs to their patients and eliminate, not provide choice. Link to the official Text - H. Con. Res. 80.

Tuesday, May 30, 2017

Disability activists rally against assisted suicide at NY court of appeals

Press Release
For Immediate Release:

May 30, 2017
Contacts:
Diane Coleman 708-420-0539 dcoleman@notdeadyet.org
Adam Prizio 518-320-7100 (office) 603-518-4910 (cell) aprizio@cdrnys.org


Disability rights activists from across the state will rally as the New York Court of Appeals hears oral arguments Tuesday afternoon, May 30th in the Myers v. Schneiderman assisted suicide case.

Not Dead Yet led the filing of a Disability Rights friend-of-the-court brief in the Court of Appeals in support of the New York State Attorney General, and earlier rulings in the case by the Supreme Court and Appellate Division, both of which dismissed a case seeking to legalize physician assisted suicide.

Joining in the Not Dead Yet brief were ten other national and New York state disability rights organizations: ADAPT, the Autistic Self Advocacy Network, the Center for Disability Rights, the Disability Rights Center, the Disability Rights Education & Defense Fund (DREDF), the National Council on Independent Living, the New York Association on Independent Living, Regional Center for Independent Living and United Spinal Association, collectively referred to as the “Disability Rights Amici.”

New York attorney Adam Prizio handled the filing on behalf of the disability organizations. “Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s unlawful discrimination,” said Prizio. “It’s a problem that certain people are being told that others not only agree with their suicide, which is bad enough, but will even help them carry it out. It’s a deadly form of discrimination and, as our brief says, it violates the Americans with Disabilities Act.”

Marilyn Golden, senior policy analyst with DREDF, summarizes concerns about a government authorized, medically administered public policy of assisted suicide as follows: 
“If assisted suicide is legalized, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”
Disability advocates are often criticized by assisted suicide proponents who claim that assisted suicide is only for the terminally ill, not people with disabilities. Activists will distribute information which refutes that claim based on data from Oregon, where it is legal.

The brief also expresses concerns about the context of health care cost-cutting in which assisted suicide is being advocated. “Elders and people with disabilities too often face economic or other pressures to get out of the way,” said Diane Coleman, president/CEO of Not Dead Yet. 
“If assisted suicide becomes an accepted practice, coverage may be denied for more expensive healthcare, as we’ve already seen in Oregon and California. What is being promoted as a ‘right to die’ could very quickly become an expectation, even a duty to die in this climate.”

Sunday, November 27, 2016

Iowa newspaper uncovers abuse of assisted suicide laws and pressure to extend it to lethal injection (euthanasia).

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

The Des Moines Register newspaper published an in-depth examination of the practice of assisted suicide in Oregon and Washington State and uncovered significant problems. They learned that the data is incomplete, that there missing reports (under-reporting) and that the laws are not effectively monitored.

They also found that the assisted suicide lobby wants to extend assisted suicide laws to permit euthanasia or lethal injection.


Des Moines Register columnist, Kyle Munson, and investigative reporter, Jason Clayworth examine the practice of assisted suicide in America by analyzing the data and interviewing leaders from both sides of the assisted suicide debate. Their report was published on November 25, 2016.


The report states that Betsy Davis, who died by assisted suicide in California, received assistance in administering the lethal dose bringing into question the meaning of the term "self-administer." According to the report:
So when it came time to end her life under a new California law for the terminally ill, her caregivers propped her up and held the cup as she drank a fatal mix of prescription drugs. 
But physical assistance in taking the toxic medications is illegal, multiple experts contend. The report then examines the meaning of "self-administer." 
Kelly and Okray, Betsy's caregiver, were left with a lingering question: Is there an easier way to do this? 
Kelly said she also was troubled by the legal gray area: Had they violated the "self-administer" clause of California's law? 
The law defines “self-administer" as the “physical act of administering and ingesting the aid-in-dying drug to bring about his or her own death.”

"That doesn't mean they couldn't hold a cup that a person is drinking out of," said Matt Whitaker, state director in California of the organization, which supports assisted-suicide laws. "That would be fine."
Jennifer Holm
Jennifer Holm, who lobbies for assisted suicide in Iowa, stated that concerns with the definition of "self-administer" would be solved by legalizing euthanasia (lethal injection). According to the report:

Holm has been one of Iowa’s most outspoken advocates for assisted suicide. She says the data tell her that doctors should be allowed not only to prescribe the lethal drugs but to administer them as well, to help avoid complications.
The report not only uncovers problems with the definition of "self-administer" it also uncovers problems with the practice of assisted suicide laws. The report states:
Marilyn Golden (disability leader)
“Assisted suicide is nearly untraceable. There is minimal reporting and tracking,” said Marilyn Golden, a senior policy analyst for the Disability Rights Education & Defense Fund in California. “It almost appears as if the practice of assisted suicide has deliberately been made secretive, all with the claim of patient confidentiality.” 
Among the 1,642 documented assisted suicides in Oregon and Washington since the states began reporting statistics in 1998 and 2009, respectively, the Register found: 
  • COMPLICATIONS: At least 38 people (about 2.5 percent) experienced complications as they were dying, including regurgitation of the fatal medicine, seizures or waking up after taking the medication. 
  • INCOMPLETE RECORDS: At least 478 deaths occurred without record of key details, such as whether complications occurred. At least 203 people have died without a record of whether the deaths were from ingesting medication or from natural causes. 
  • PROLONGED DEATHS: In 2009, a person in Oregon took more than four days to die after taking the lethal medication. Of the two states, Washington had the most complete data. For deaths where time was recorded, 17 percent took 91 or more minutes. In Oregon, the median time before death in 2015 was 25 minutes.
  • NO DATA: Two of the states where assisted suicide is an option — Vermont and Montana — do not track deaths at all. Data from California and Colorado, the most recent states to legalize assisted suicide, is not yet available.
The Des Moines Register report uncovers similar abuses and problems with assisted suicide in Oregon and Washington State as reported by the Euthanasia Prevention Coalition.

Tuesday, October 4, 2016

Oregon State Assisted Suicide Reports Substantiate Critics’ Concerns

The following article was written by Diane Coleman, a lawyer and President of the disability rights group - Not Dead Yet, and published on the Not Dead Yet website on October 4, 2016.

O
Diane Coleman
ne 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 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. 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.

The focus of the discussion below is the Oregon Health Division data. 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.

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 Prescription In Oregon

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

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 7 of the 2015 annual report. In 2015, at least one person lived 517 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.

The state report’s footnote about “other” conditions found eligible for assisted suicide has grown over the years, to include:
“. . . benign and uncertain neoplasms, other respiratory diseases, diseases of the nervous system (including multiple sclerosis, Parkinson’s disease and Huntington’s disease), musculoskeletal and connective tissue diseases, cerebrovascular disease, other vascular diseases, diabetes mellitus, gastrointestinal diseases, and liver disease.”
Overall in 2015, 7%, or 68 individuals, had conditions classified as “other”. 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, the prescribing doctor is a doctor referred by assisted suicide proponent organizations. (See, M. Golden,Why Assisted Suicide Must Not Be Legalized, section on “Doctor Shopping” and related citations). The Oregon state reports say that the median duration of the physician patient relationship is 12 weeks. 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.)

The witnesses on the request form 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.

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” (92%), “less able to engage in activities” (90%), “loss of dignity” (79%), “losing control of bodily functions” (48%), and “burden on others” (41%).

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 5.3% 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 18 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 bills.