More Testimony From NYC: Jose Hernandez and Sharon Shapiro-Lacks

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Anita Cameron, Jose Hernandez and Julie Farrar seated side-by-side in their wheelchairs.

Here are some more great testimonies shared with the New York Assembly Health Committee on May 3.

Jose Hernandez shared his mother’s story in a powerful and moving letter:

My mother was diagnosed with stage IV ovarian cancer in 1988 when she was just 28 years old in Puerto Rico. They had given her 6 months to live. My mother and my father made the decision to get her to the United States immediately for treatment. . . .

My mother survived 13 years. Yes, there was pain, yes there was depression, however despite all of the pain and depression, there were moments of joy: 13 Thanksgivings, 13 Christmases, 13 New Year’s, close to 39 birthdays (not including hers), and all of the precious memories I have of my mother doing simple things like turning on the Spanish music every Saturday and dancing with the mop while she cleaned the house.

To read Jose’s whole letter and see his family photos, go here (PDF) or here (HTML).

Sharon Shapiro-Lacks testified before the Committee on behalf of Yad HaChazakah-The Jewish Disability Empowerment Center:

We . . . proclaim that doctors and mental health professionals, who are members of the broader society, are too tainted by centuries old fears of disability in order to determine who is rational and who has good reason to die.

We oppose giving the medical establishment, with the input of mental health professionals, the ability to prescribe life-ending drugs months or weeks before one’s projected time of natural death. Their evaluations will be based upon their predominant ableist attitudes about what constitutes “quality of life”. We are opposed to giving insurance companies, Medicare, and Medicaid a convenient way to save on health care and hospice costs. If this bill is passed into law, disabled folks and seniors living on fixed incomes who are sentenced with 6 months or less to live will too easily be granted deadly doses.

To read Sharon’s whole testimony, go here (PDF) or here (HTML).

Anita Cameron and Stephanie Woodward Testify At NY Assisted Suicide Hearing

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AM New York interviewed advocates on both sides of the assisted suicide issue at the all day hearing held in New York City on May 3, 2018. Here are the disability quotes:

Opponents of the bill have expressed concerns for the disabled community and what they say is a tendency for medical professionals to underestimate their will to live. Opponents also say medical professionals assume that the patient would rather die than incur debt.

“Doctors tend to devalue our lives, tend to feel that we don’t have quality of life when we feel that we do,” said Anita Cameron, director of minority outreach for Not Dead Yet, a disability rights group fighting against assisted suicide. Cameron suffers from multiple sclerosis, congenital cerebellar ataxia, and diabetes. She said she knows one of her diseases “is going to take her life” and lives in pain, but can’t see herself ending her own life. “I don’t want to die, I have way too much to live for,” said Cameron.

Another concern is that a doctor’s word on how long a patient has left is often not correct. Multiple people, including Cameron, testified Thursday that their loved ones far outlived their doctor’s expectations.

Jose Hernandez, 38, said his mother lived for 13 years after she was diagnosed with stage IV ovarian cancer in 1988. “There was 13 birthdays, 13 Christmases, 13 Thanksgivings that would have not happened if this medication was available,” said Hernandez. “I wouldn’t have been able to share those precious moments with my mother.”

To read the rest of the article, go here.

We’re hoping to feature more of the excellent disability advocates’ testimonies from the hearing, but for now, we have:

Testimony of Anita Cameron On Behalf of NDY Opposing New York Assisted Suicide Bill A2383A http://notdeadyet.org/testimony-of-anita-cameron-opposing-new-york-assisted-suicide-bill-a2383a

 

 

 

Testimony of Stephanie Woodward On Behalf of ADAPT Opposing New York Assisted Suicide Bill A2383A Stephanie Woodward’s Testimony for ADAPT Opposing NY Assisted Suicide Bills (05/03/18) (PDF Version)

 

 

 

Press Release: Disability Advocates Testify In NYC Against Assisted Suicide Bill

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Not Dead Yet, the Resistance

For Immediate Release             Contacts:  Anita Cameron 720-413-9064
May 3, 2018                                               Diane Coleman 708-420-0539

(New York, NY) Disability rights advocates will testify at a New York Assembly Health Committee hearing today in opposition to a proposed bill (A.2383-A) legalizing doctor assisted suicide. The hearing will be held at 250 Broadway in Manhattan beginning at 11:00 a.m.

Disability advocates invited by the Health Committee to testify include:

  • Anita Cameron, Director of Minority Outreach, Not Dead Yet
  • Stephanie Woodward, Organizer, ADAPT
  • Sharon Shapiro-Lacks, Executive Director, Yad HaChazakah-The Jewish Disability Empowerment Center Inc.
  • Susan Dooha, Executive Director, Center for Independence of the Disabled-NY

Cameron was among scores of disability rights advocates dragged out of Congressional offices and hearings last summer and arrested in connection with efforts to save healthcare from Republican cuts.

Cameron will testify about her family experiences with terminal prognoses that were vastly incorrect.

“As disabled people know very well, doctors often make mistakes about whether a person is terminal or not. In June, 2009, while living in Washington state, my mother was determined to be in the final stages of Chronic Obstructive Pulmonary Disease and placed in hospice. Two months later, I was told that her body had begun the process of dying. . . Almost nine years later, she is still alive, lives in her own home in the community and is reasonably active.”

Cameron is also deeply concerned about the cost-cutting pressures in healthcare. “Although assisted suicide requests in Oregon are lower among Blacks and people of color, that doesn’t mean that this won’t change in more diverse areas, especially as healthcare support lessens,” she said. “Because of the racist, profit-driven nature of our health care system and the tendency of doctors to devalue the lives of disabled, people of color and the poor, assisted suicide has no place as an option in New York.”

Woodward’s testimony will focus on the critical need for home care for people with advanced illnesses and disabilities so they do not feel like a burden on their families, a common reason for assisted suicide requests, and are not forced into nursing facilities. “New York State will not give us the services and supports we need to live in the community, but will give us assisted suicide and call it a choice,” Woodward said.

Not Dead Yet (notdeadyet.org) is part of the New York Alliance Against Assisted Suicide (nosuicideny.org), an informal association of many diverse organizations committed to preventing the legalization of assisted suicide in the state.

Press Release: NY Disability Advocates Testify Against Assisted Suicide Bill

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Not Dead Yet, the Resistance

For Immediate Release                             Contacts:  Anita Cameron 720-413-9064
April 23, 2018                                                                     Diane Coleman 708-420-0539

(Albany, NY) Disability rights advocates will testify at a New York Assembly Health Committee hearing today in opposition to a proposed bill (A.2383-A) legalizing doctor assisted suicide.

Kathryn Carroll, an attorney and policy analyst with the Center for Disability Rights (cdrnys.org), and Mel Tanzman, executive director of Westchester Disabled on the Move (wdom.org) and Chair of the Health Committee of the New York Association on Independent Living (ilny.org) were invited by the Assembly Health Committee to testify at Monday’s hearing.Not Dead Yet has been invited to testify at the New York City hearing on the bill scheduled on May 3rd.

“The mere suggestion that disability acquired as the result of illness is cause enough to end one’s life is a devaluation of disabled peoples’ lives, and it’s offensive,” says Kathryn Carroll. “Our focus should be on expanding access to services and supports that allow people to live with dignity, rather than assisting their suicide.”

Tanzman agrees. His testimony on behalf of over forty organizations serving New Yorkers with disabilities states, “Fears of becoming disabled and facing functional loss, whether the cause is injury or illness, are often reported by doctors as reasons patients request assisted suicide in states where it is legal. Oregon released data from 2017 which showed that the top three end-of-life concerns cited by Oregon patients requesting suicide pills had nothing to do with physical pain and suffering. These concerns were: decreasing ability to participate in enjoyable activities; loss of autonomy; and loss of dignity. The disability community strongly opposes the belief that requiring the assistance of another individual for activities of daily living, such as dressing, bathing and toileting, is undignified or a legitimate reason for New York State to legalize physician assisted suicide.”

Disability advocates also experience the real life impact of cost-cutting pressures in healthcare. “You cannot argue that there is not an economic incentive—on the part of insurance companies or families and caregivers—to contemplate or even encourage someone committing assisted suicide,” Carroll stated. “As long these external influences exist, the promise of a choice to end one’s life is a lie.”

The disability organizations testifying against the bill are part of the New York Alliance Against Assisted Suicide (nosuicideny.org), an informal association of many diverse organizations committed to preventing the legalization of assisted suicide in the state.

Kathryn Carroll’s testimony for CDR is online in PDF and HTML formats.

Mel Tanzman’s testimony for NYAIL is online in PDF and HTML formats.

Testimony of Mel Tanzman on Behalf of NY Assn. on Independent Living Opposing Assisted Suicide Bill A2383A

Our News & Commentary Blog

April 20, 2018

Testimony to the New York State Assembly Health Committee on the Death with Dignity Act

Hello and thank you for the opportunity to testify here today. The New York Association on Independent Living (NYAIL) is strongly opposed to A.2383A, known as the Medical Aid in Dying Act, which would legalize physician assisted suicide in New York State.

A major concern for people with disabilities is that assisted suicide reinforces negative perceptions about being disabled and the idea our lives are not worth living. Fears of becoming disabled and facing functional loss, whether the cause is injury or illness, are often reported by doctors as reasons patients request assisted suicide in states where it is legal. Oregon released data from 2017 which showed that the top three end-of-life concerns cited by Oregon patients requesting suicide pills had nothing to do with physical pain and suffering. These concerns were: decreasing ability to participate in enjoyable activities; loss of autonomy; and loss of dignity1. The disability community strongly opposes the belief that requiring the assistance of another individual for activities of daily living, such as dressing, bathing and toileting, is undignified or a legitimate reason for New York State to legalize physician assisted suicide.

Most people become disabled toward the end of their life. The disability community understands that becoming disabled and losing the ability to do things like walk, dress or go to the bathroom independently is very difficult and causes depression. Yet, this law does not have adequate safe guards to ensure people are not seeking this option due to depression or other concerns which can be addressed. Though frequently insist that as a key safeguard, depressed people are ineligible, psychological supporters of the proposed legislation screenings are not required, leaving it to a physician to determine whether someone requires a psychological evaluation.

In Oregon, Michael Freeland was a 64 year old man with a 43-year medical history of acute depression and suicide attempts2. Yet, the doctor he consulted with when seeking assisted suicide medication said he didn’t think that a psychiatric consultation was “necessary.” In fact, Oregon’s statistics for the years 2011 – 2014 show that each year, only 3% of patients (or fewer) were referred for psychological evaluation or counseling before receiving their prescriptions for lethal drugs. The proposed Medical Aid in Dying Act only mandates an attending physician refer the patient for a mental health screening if they lack the capacity to make the decision.

If you are still wondering why the disability community is so opposed to legalizing physician assisted suicide, consider the reports that came out of Oregon in January. Oregon state officials have confirmed that people with chronic conditions like Diabetes are eligible for physician assisted suicide if they stop treatment3. According to Craig New, a Research Analyst for the Oregon Health Authority, who studies the Death with Dignity Act “The law is best seen as a permissive law, and states only that patients must have a terminal illness with six months or less to live. It does not compel patients to have exhausted all treatment options first, or to continue current treatment. It is up to the patient and doctor to discuss disease and treatment options. But if the patient decides they don’t want treatment, that is their choice.” New goes onto say that if a patient can’t afford treatment, then they can be considered terminal under the law as well. Diabetes and many other chronic diseases can be treated and allow people to live long lives. This interpretation creates a serious danger for people with disabilities and chronic conditions. Oregon’s law allows people with disabilities who could otherwise seek treatment to kill themselves with the help of a doctor. There are no safeguards in the proposed legislation to ensure this is not permitted in New York.

NYAIL is also concerned about the deadly mix between our profit-driven health care system and legalizing assisted suicide, which will be the cheapest so-called treatment. Direct coercion is not even necessary. If insurers deny, or even merely delay, expensive live-saving treatment, the person will be steered toward assisted suicide. Take Barbara Wagner and Randy Stroup: two Oregon residents who had cancer. Both Wagner and Stroup were prescribed treatments, but their health plans denied the prescribed treatment, offering physician assisted suicide as an alternative 4 . What happened to these patients underscores the danger of legalizing assisted suicide in the context of our broken U.S. health care system.

Proponents of physician assisted suicide often argue that this option is necessary to prevent suffering at the end of life. This is not the case as there are alternative options to prevent suffering. It is already legal in New York for individuals to refuse life-sustaining treatment at any time, and to create an advance directive to cease treatment under any circumstance they choose if they are no longer able to make and communicate decisions. Palliative care is available and can provide pain relief to ensure a person is not in pain, even in those rare cases in which total palliative sedation is required. Unfortunately, medical schools do not mandate their students learn about end of life options and so may not be educating their patients on all their options. New York should invest in educating the community about these options and focus on promoting and expanding palliative care so that it is an available option to anyone facing a painful illness. What happened to these patients underscores the danger of legalizing assisted suicide in the context of our broken U.S. health care system.

People vastly prefer to live and die in their homes, as opposed to a hospital. Unfortunately, hospice is not always an available option for people facing terminal illness, and is severely underutilized in New York State, which is 48 among the states in using hospice services. There are barriers for people who live in assisted living facilities from getting hospice services. There are also barriers to people receiving home care once on hospice. The State should focus on addressing these barriers rather than on legalizing physician assisted suicide.

Finally, the disability community is deeply concerned about coercion and abuse. The proposed legislation is based on the laws in Washington and Oregon, which have proven to have ineffectual safeguards against abuse. One upsetting example from Oregon is Kate Chaney, an 85-year-old woman with dementia who died by assisted suicide 5. She first approached her physician, who would not prescribe her the lethal prescription. She then went to a second doctor, who ordered a psychiatric evaluation, which found that Cheney lacked “the very high level of capacity required to weigh options about assisted suicide.” Cheney’s request was denied, and it has been reported that her daughter “became angry.” A second evaluation was then done with another psychologist, who insisted on doing the evaluation with Chaney alone. Disturbingly, the psychologist deemed Cheney competent while still noting that her “choices may be influenced by her family’s wishes and her daughter, Erika, may be somewhat coercive.” Cheney soon took the drugs and died, but only after spending a week in a nursing home. This is a very disturbing example of doctor shopping and the lack of safe guards in place in Oregon.

A.2383/S.3151A does not prevent a coercive family member or caregiver from doctor shopping with the individual to find a physician who will provide the fatal drug, such as in the case of Kate Chaney. There is nothing in the proposed legislation that would prevent an abusive caregiver or family member from steering the individual toward physician assisted suicide, witnessing the request form, picking up the lethal dose, and even administering the drug. Because no independent witness is required at the death, there is no assurance of self- administration or even consent.

For all of the reasons above, we strongly urge the Assembly’s Health Committee not to pass this dangerous legislation.

Respectfully submitted,

Mel Tanzman
Executive Director of Westchester Disabled on the Move NYAIL Board Member and Health Committee Chair

1 Oregon Death With Dignity Act: 2015 Data Summary

2 Gregory Hamilton, M.D. and Catherine Hamilton, M.A., Competing Paradigms of Responding to Assisted-Suicide Requests in Oregon: Case Report, presented at the American Psychiatric Association Annual Meeting, New York, New York, May 6, 2004.

3 Bradford Richardson, Diabetics eligible for physician-assisted suicide in Oregon, state officials say, The Washington Times, January 11, 2018.

4 Kenneth R. Stevens, Jr., M.D., Oregon Rationing Cancer Treatment But Offering Assisted Suicide to Cancer Patients—Paying to Die But Not to Live, Physicians for Compassionate Care Educational Foundation, June 6, 2008, (accessed July 9, 2009).

5 DHS news release, “No authority to investigate Death with Dignity case, DHS says,” March 4, 2005.