John Kelly Letter Published Challenging Pro-Assisted Suicide Column in Times of Trenton

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In the aftermath of the New Jersey Health and Senior Services Committee hearing on assisted suicide, the public debate has continued in the press.  One example is George Amick’s column in favor of legalization.

Amick acknowledged that the opposition includes people with disabilities:

Groups representing Catholics, medical practitioners and people with disabilities were on hand to attack the measure as “assisted suicide” and “an open invitation to patient abuse” that lacks safeguards against the possibility that applicants are depressed or have been misdiagnosed or coerced. Opposition witnesses included individuals with sever disabilities, some in wheelchairs, who testified that they found their lives well worth living.

Amick also reported another interesting point for the disability community, specifically that the bill’s lead sponsor decided to change the name of the bill:

No adjustment is too minor for Burzichelli to consider.

For example, he asked the committee to change the bill’s title from “The Death With Dignity Act” — as Oregon, Washington and Vermont call their laws — to “The Aid in Dying for the Terminally Ill Act.”

“I don’t want to suggest that the only way to have a dignified death is to ingest a prescription,” he explained. “That certainly isn’t the case.”

Not to mention the fact that “aid in dying” and similarly vague terms poll so much better than “assisted suicide.”  Amick’s piece proceeds to carry the proponents’ party line about the bill’s supposed safeguards.

In response, John Kelly’s letter published this weekend sheds light and exposes the profound weaknesses of the bill’s safeguards:

Dangers of assisted suicide bill too many to overlook

George Amick’s column “Bill would allow terminally ill patients to die in humane, dignified manner” (June 9) ignores the many dangers of legalized assisted suicide.

Assisted suicide makes for a deadly mix with our profit-driven healthcare system. With a lethal prescription costing a mere few hundred dollars, assisted suicide will immediately become the cheapest “treatment. ” For example, Oregon Medicaid refused to cover prescribed chemotherapy for Barbara Wagner and Randy Stroup, while offering the cheaper assisted suicide. Such distorted medical decision-making is one reason disability rights groups across the country oppose assisted suicide. Connecticut, Massachusetts and New Hampshire listened to our objections and rejected bills this year.

Assisted suicide endangers people who experience depression. Oregonian Michael Freeland easily received a prescription despite a 43-year history of severe depression and suicide attempts. Freeland’s prescribing doctor later said that he didn’t think a psychological consultation was “necessary.”

If Assemblyman Burzichelli is open to adjustments, he should look to Connecticut, where the legislature listened to disability rights advocates and rejected assisted suicide, then got to work with advocates to craft a pilot program for medical orders for life-sustaining treatment (MOLST). This program, which will protect everyone’s right both to receive and decline medical treatment, passed the Connecticut House unanimously and is now state law.

— John Kelly

Boston

The writer grew up in Middletown Township and is now New England regional director for the national disability rights group Not Dead Yet.

Please support and promote his excellent letter.

Press Release: Disability Advocates From Not Dead Yet and New Jersey Disability Organizations Testify Against Assisted Suicide Bill Despite Short Notice of Committee Hearing

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[Editor’s Note:  The press release below is being distributed through PRWeb in pdf format and is available at http://www.prweb.com/releases/2014/06/prweb11917687.htm.  The PRWeb version also includes the actual testimonies as Word attachments.]

Last Friday was the first that disability advocates learned that a New Jersey assisted suicide bill that they oppose would be heard by the Assembly Health and Senior Services Committee on Thursday, June 5 at 10:00 a.m.

“We just learned of the hearing when it was posted at the end of last week,” said attorney Anne Studholme who testified against the bill last year on behalf of Not Dead Yet.  “I’m aware of at least one physician who wants to testify against the bill but can’t because he’s scheduled for eight hours of surgery starting in the morning.  Short notice doesn’t work for surgeons, and I really question the way this hearing was scheduled.”

Having seen the many witnesses at last year’s hearing, Studholme further noted, “Many organizations with members who are practicing doctors, lawyers, and advocates for disabled people, including people with disabilities that make logistics more time-consuming and difficult, oppose this bill.  As recently as last week, we were being told there would be no action on this bill until at least July, if then, and, more likely, in the fall.”

Studholme will testify on behalf of Not Dead Yet, as will John Kelly, the organization’s New England regional director who testified at hearings that resulted in the defeat of similar legislation in New Hampshire, Massachusetts and Connecticut earlier this year.  Kelly will testify by telephone hook up from Boston.

Kelly’s testimony will focus on abuses under the Oregon assisted suicide law.  “Only in the fantasy world of the proponents are all families… happily gathered around the peaceful and willing suicide,” Kelly plans to testify, referencing an estimated 175,000 cases of elder abuse in New Jersey annually.  “The Health and Senior Services Health Committee should not be recommending the introduction of poisonous drugs into abusive situations and then not even require an independent, disinterested witness be present at the dying.”

New Jersey based disability organizations and advocates will also testify against the bill.  Norman Smith will be testifying as President of Progressive Center for Independent Living and also on behalf of Resources for Independent Living and the Alliance Center for Independence.

In his testimony, which will be spoken by a friend due to his speech impairment, Mr. Smith wrote:

“I have had the unfortunate experience of dealing with doctors in emergency rooms. . . .’Better off dead than like that’ is in their eyes.

But then I can see their attitude change as they learn that I’m married, that I have a six-year old son, and that I have a job with responsibilities. . . . These are the same people who will be sitting in judgment on whether to prescribe life-ending drugs based on the word of a caregiver.”

Another disability advocate is Kate Blisard, who plans to testify as a “disability advocate, businesswoman, wife, mother, and grandmother . . . [and] abuse survivor.”  Her testimony states:

“Throughout my 30+ year career I have advocated for a better life for those committed to state institutions and nursing facilities. . . .  They are vulnerable . . . because their disabilities cause them to be dependent on others. . . . The abuse of elders and especially of people with disabilities is an epidemic in the shadows.”

Written testimony was also submitted by Diane Coleman, president and CEO of Not Dead Yet, and Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund.

Press Release: Not Dead Yet and New York Disability Groups File Objections to NY Medicaid Proposal, Alleging It Would Steer People to Choose Death Over Disability to Save Health Dollars

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[Editor’s Note:  I know that this press release is not news to our regular readers, due to our blog on the same subject two days ago.  But we like to put our press release text into the blog so that it is screen reader accessible, since the PRWeb pdf formatted versions are not accessible to everyone.  BTW, I had to go round and round with the PRWeb editorial staff to add explanations and connect the dots, as well as make it clear that we are “only” alleging that the Conversation Project is using a “better dead than disabled” approach in advance care planning conversations.  Not surprisingly, as with all minority communities, bias against our community is harder for others to discern or be concerned about.  The PRWeb version is here.]

On May 28, 2014, Not Dead Yet, the Center for Disability Rights and 11 other New York based disability organizations submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP).  The comment letter called upon New York officials to eliminate one of the proposed projects, which the letter alleges would fund Medicaid providers to save money by steering people to choose death over living with disability.

New York requested public comments because it is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations.  Among the 44 potential programs for grant applicants to consider are three palliative care projects.

One of these projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing hospitalizations.  Advance care planning is a process whereby individuals execute advance directives such as living wills to indicate medical treatments that they want or do not want under various circumstances. For this project to be effective in reducing hospitalizations, the comment letter alleges that people on Medicaid would apparently be encouraged to include in their advance care plan a refusal of life-sustaining treatment that might involve hospitalization.

A recent Pew Research study found that minority populations are more likely than whites to want all possible medical treatment available:

. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain.  [Views on End-of-Life Medical Treatments, November 21, 2013]

The state “Conversation Ready” project is focused on safety net providers and includes the following requirement:

Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]

In order to receive grant funds for reducing hospitalizations and healthcare costs, the comment letter alleges that providers would have to encourage individuals on Medicaid to “choose” death over treatment in their advance care plans. The methods by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.

The comment letter claims that the Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.  The letter quotes several excerpts from the Starter Kit on the Conversation Project website as examples of how living with disability is discussed in a negative way that could lead people to conclude that disability is a fate worse than death and, thus, execute advance directives that reflect that assumption.

“Understandably, people don’t want to lose their abilities due to an accident, illness, or age,” said Diane Coleman, President and CEO of Not Dead Yet.  “Yet disability is a natural part of the human experience and people adapt.”

The letter, joined primarily by organizations run by people with disabilities themselves, as distinguished from family members and service professionals, envisions an alternative approach.  “The role of healthcare professionals should be to provide accurate information and support to help people get past their fears and disability stereotypes,” said Coleman.  “They should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.”

The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled.  This was a major concern for Bruce Darling, President and CEO of the Center for Disability Rights in Rochester, NY.  “New York has agreed to implement the Medicaid Community First Choice Option to ensure that New Yorkers can enjoy their federal right to home and community based services,” according to Darling.  “The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to placement in a nursing facility.”

The comment letter supported the other two proposed palliative care projects and recommended that they be strengthened by adding information and services relating to independent living and the Community First Choice Option and by including representatives from disability and aging advocacy organizations on their advisory committee.

The following additional NY disability organizations that joined in these comments:  New York Association on Independent Living, Center for Independence of the Disabled, New York, Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.

NDY Challenges NYS Medicaid Proposal to Save Money By Steering People to Choose Death Over Living With Disability

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Not Dead Yet, the Center for Disability Rights, and 11 other NY based disability organizations, submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP) on May 28, 2014, alleging that one of the proposed projects would fund Medicaid providers to save money by steering people to choose death over living with disability.  NY is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations, and encouraging applicants to implement three possible palliative care projects along with other projects on various aspects of healthcare.

One of the three palliative care projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing “unnecessary” hospitalizations.  For this to be effective, people on Medicaid would apparently be encouraged to refuse life-sustaining treatment as part of their advance care plan.

A recent Pew Research study found that:

. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain.  [Views on End-of-Life Medical Treatments, November 21, 2013]

The “Conversation Ready” project is focused on safety net providers and includes the following requirement:

Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]

Giving provider networks financial rewards for being successful in this effort allows them to reduce hospitalizations and healthcare costs by encouraging individuals to “choose” death over treatment. The method by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.

The Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.

The website, found at www.theconversationproject.org, reads in part:

You’ll see that this isn’t really about dying—it’s about figuring out how you want to live, till the very end.

“What matters to me is _____.”

Think about the things that are most important to you. What do you value most? What can you not imagine living without?

Understandably, individuals do not want to lose their abilities due to an accident, illness, or age.  Yet disability is a natural part of the human experience and people adapt.  It is unacceptable that a government program will encourage people to choose death over disability to prevent “unnecessary” hospitalization and save money.

The Conversation Project goes even further in specifically eliciting fears of long term disability and translating them into decisions to forego live-saving treatment:

What to talk about:

Are there circumstances that you would consider worse than death? (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)

What kinds of aggressive treatment would you want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube)

When would it be okay to shift from a focus on curative care to a focus on comfort care alone?

There is no indication that the need for such interventions could be either short term or permanent. There is no information on the tens of thousands of disabled individuals who are currently living a fulfilling life while permanently using these devices.

The role of the healthcare professional should be to provide thorough information and support that assists people to adapt to disability. The medical community should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.

The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled.  But what about Olmstead and the New York adopted Community First Choice Option that establish the right to home and community based services under Medicaid?  The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to institutional placement.

Our conclusion and final recommendation was that the “Conversation Ready” Project must be removed from the Toolkit of projects applicants could select due to the: a) transparent effort to steer safety net community members to sign advance directives that decline lifesaving healthcare and b) extreme bias against people living with disabilities.

On the other hand, we supported the other two palliative care projects and made three recommendations to strengthen those programs:

  • Ensure the provision of information and services relating to the Olmstead decision, Money Follows the Person, and the Community First Choice Option to patients and their families.
  • Ensure the provision of independent living information and services to patients and their families.
  • Require the proposed “quality committees” to include representatives from disability and aging advocacy organizations.

The full comment letter is posted on the NDY website under “Public Policy” activities.

The Conversation Project provides an example of how common fears and prejudices about life with disability are used to steer people to decline healthcare and choose death, but it’s far from the only example.  Those who push these ideas and approaches are usually well meaning, but are ill informed about disability in all the typical ways.  Nevertheless, when New York Medicaid officials openly link this objectionable practice to saving money, we can’t be silent.  In fact, more disability advocates are needed to challenge this anti-disability approach to advance care planning across the country.  We’ve been excluded from “the conversation” for far too long.

P.S.  Thanks to the NY disability organizations that joined in these comments:  Center for Disability Rights, New York Association on Independent Living, Center for Independence of the Disabled, New York,  Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.

 

 

 

 

Press Release: Not Dead Yet, Autistic Self Advocacy Network and 12 Other Disability Groups File Friend-of-Court Brief in Wisconsin Case Alleging Medical Care Withheld Due to Disability

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[Editor’s Note:  For a pdf formatted version of this press release, and link to the friend-of-the-court brief in Word format, go here.]

On Friday May 23, the Autistic Self Advocacy Network, Not Dead Yet, and 12 other disability rights organizations filed an amicus brief in a case challenging the University of Wisconsin Hospital Center’s alleged practice of counseling families of people with developmental disabilities to withhold care for treatable but potentially life-threatening medical conditions, such as pneumonia. (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No. 2014 AP 135, Wisconsin Court of Appeals, District IV.)

According to the amended complaint (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No 09-CV-2340, filed January 8, 2010, Wis. Circuit Court of Dane County), one thirteen-year-old child died of pneumonia and one adult was denied care after University of Wisconsin Hospital physicians advised families to withdraw antibiotics, nutrition, and hydration. When the child’s regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day.

In both cases, Disability Rights Wisconsin claimed, doctors allegedly based their determinations on their patients’ supposedly low quality of life as individuals with disabilities, and acted without the approval of the hospital ethics committee.

“We need the court to recognize that people with disabilities shouldn’t be refused care simply because a doctor doesn’t think their lives are worth living,” said ASAN’s Director of Public Policy, Samantha Crane, who authored the brief. “Often, this sort of judgment serves as cover for discriminatory denials of care.”

ASAN’s amicus brief was authored in collaboration with Not Dead Yet, a disability rights organization that advocates against legalization of assisted suicide, euthanasia, and non-voluntary denial of lifesaving treatment for people with disabilities, The brief argues that UWHC’s policies are emblematic of pervasive, nationwide medical discrimination against people with disabilities and that legal protections are necessary to protect vulnerable individuals from deadly denials of care.

“The concern that many of us with lifelong severe disabilities have is that children with disabilities are not receiving the same legal protection as nondisabled children,” said Diane Coleman, Not Dead Yet’s President and CEO. “A disabled child with parents who prefer to withhold medical care that would save the child, or who succumb to pressure from hospital doctors to withhold care, should not be permitted to deprive their child of a future just because the parents and doctor harbor common prejudices against life with disability.”

The trial court initially dismissed Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitutions of either Wisconsin or the United States, leading to this appeal.

Under Wisconsin law, parents of nondisabled children are required to provide medical care when necessary to save the child’s life. In 2013, the Wisconsin Supreme Court upheld the homicide convictions of parents who had failed to seek medical attention for their child, who died of untreated diabetes. (Wisconsin v. Neumann, 832 N.W.2d 560 (Wis. 2013).)

UWHC Ethics Committee Chair Norman Fost, who is also a defendant in the lawsuit, has taken multiple controversial positions on the rights of children with disabilities, including his defense of the use of electric shocks to modify the behavior of children and adults with disabilities and his support of the “Ashley Treatment,” which involves removing the reproductive organs and artificially stunting the growth of children with developmental disabilities. (See Douglas Diekema & Norman Fost (2010), Ashley Revisited: A Response to the Critics, American Journal of Bioethics 10(1):30-44;  Transcript, U.S. Food and Drugs Administration, Neurological Devices Panel (April 24, 2014).)

ADAPT, American Association of People with Disabilities, American Council of the Blind, Association for Autistic Community, Association of Programs for Rural Independent Living, Autism Women’s Network, National Association of the Deaf, National Council on Independent Living, National Disability Rights Network, Quality Trust for Individuals With Disabilities, United Spinal Association, and the Wisconsin Board for People With Developmental Disabilities also joined the amicus brief.