United Spinal Assn. Helped Fight A Futility Judgment And Won!

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The hospital may not have called it a “futility judgment” when they pushed Chris Dunn to go into hospice as an alternative to spinal cord injury rehabilitation, but it’s hard to see it any other way.

Here’s an extended excerpt from United Spinal Association’s New Mobility article “Refusing To Die: The Chris Dunn Story“:

By all accounts, Chris had a complicated situation. Using a ventilator alone limited the number of rehab facilities willing to consider him, but his injury had also left him mostly blind and necessitated the installation of a pacemaker and feeding tube.

“Carol [Dunn’s mother] felt like he had originally been denied from some rehabs because of his medical condition –because he had a lot going on,” says Wierbicky. “She thought they’d be able to revisit things and get him into rehab when he was more stable.”

When Carol kept getting rejected and hospital staff and administrators started suggesting alternatives and that she consider hospice, she grew frustrated.

“People kept shutting the door without even trying, without even giving us a chance,” she says. “That’s unacceptable to me.”

Wierbicky agreed. “It’s always shocking to me when we see cases where that doesn’t happen,” she says. “It became clear to me through this case that people living in rural states that don’t have dedicated spinal cord injury programs and those who are on ventilators are in an especially vulnerable position … all she ever wanted was for him to be evaluated by people who understand his condition. That seems like a very reasonable goal.”

“I’m not a fighter, but I never felt like I had a choice,” says Carol. “It wasn’t right and I wasn’t going to let it just sit.”

Working together, Carol and the United Spinal Resource Center team took the fight to get Chris into rehab to the next level. They enlisted Disability Rights Maine, state legislators and federal representatives and turned over every stone trying to find a suitable facility. They held weekly phone calls with hospital staff and MaineCare, the state’s Medicaid program.

Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. “There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’” says Carol. “I mean, what’s a mother to do with that?”

Thanks to the relentless team effort and Carol’s fortitude, by early April, Shepherd Center in Atlanta was reemerging as a possible destination for Chris. Carol had looked into Shepherd earlier and been told it wasn’t an option because of Chris’s insurance, but after much wrangling they came to an agreement.

To read the whole article with photos and find out what happened, go here.

And to learn more about how futility judgments and policies endanger people with disabilities, check out the National Council on Disability bioethics series report, Medical Futility and Disability Bias.

Happy Holidays From Not Dead Yet!

Annual Report, Our News & Commentary Blog

People sometimes wonder if the subjects Not Dead Yet deals with every day get us down. But the reality is that you lift us up – every time you share the message that we are NOT “better dead than disabled,” every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are. A short NDY Annual Report is below. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.

If you are still looking to make a year end donation, please consider Not Dead Yet by going here. Wishing you love, peace and justice in the new year!

 

Photo of four lighted red candles with gold glitter, resting on an evergreen bed with a red bow and a poinsettia flower with gold glitter.
Photo of four lighted red candles with gold glitter, resting on an evergreen bed with a red bow and a poinsettia flower with gold glitter.

Not Dead Yet Annual Report of Activities: October 2018 – September 2019

The Center for Disability Rights (CDR) continued to extend support and sponsorship to Not Dead Yet (NDY), a national disability rights group headquartered in Rochester since 2008.

Publications: During the reporting year, NDY published 54 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 70,740 views of the website during the reporting year, and NDY posted 162 Facebook entries and 257 tweets. NDY posted five videos on Not Dead Yet’s You Tube channel.

Media: National NDY issued ten press releases. NDY staff, board and activists authored twelve op-eds published in mainstream outlets. NDY staff posted at least 14 online comments and one letter to the editor was published. NDY staff, board and advocates were interviewed for 8 radio and 11 TV broadcasts. There were at least 41 print or online articles that mentioned NDY, including Associated Press, New York Times, Politico, Huffington Post and Forbes.

Systems Advocacy: NDY staff and advocates pursued a number of key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.

  • Assisted Suicide: NDY opposed legalization of assisted suicide through training, community organizing and legislative testimony in 13 states. Out of 22 assisted suicide bills introduced in 2019 or carried over from 2018, only the New Jersey and Maine bills, and one Oregon amendment bill, passed. Disability advocates were credited in mainstream press with playing a significant role in preventing passage of these bills in many states.
  • National Council on Disability (NCD) Bioethics Project: NDY’s CEO Diane Coleman served as a consultant regarding assisted suicide, futility policies, and discriminatory organ transplant policies pertaining to organ procurement.
  • “Futility” Cases: NDY was contacted and assisted in efforts to save the lives of three disabled individuals whose health care providers or family planned to withdraw life sustaining healthcare.
  • Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. This included NDY issuing a public statement.
  • Advance Care Planning: NDY continued to challenge the bias against living with significant disability that is increasingly evident in the professional training and public education materials of prominent advance care planning programs. Among other activities, on November 15, NDY responded to the NY Dept. of Health Advance Care Planning Request for Information.
  • Non-Discrimination in Healthcare: NDY worked with DREDF to spearhead communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.

NDY also filed 5 public comments on various policy issues and signed on to 16 policy letters and position statements sponsored by other organizations.

Conference, Workshop & Other Training Presentations: Not Dead Yet staff, board and advocates provided 14 training presentations in person or through Skype or webinars.

Collaboration and Networking: Throughout the year, NDY continued to serve on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, and CDR’s Public Policy Committee.

Financial:

NDY operates under the fiscal sponsorship of the Center for Disability Rights (CDR). CDR’s fiscal year is the calendar year. Below are NDY’s revenue and expenses for 2018.

Revenue

Contributions $203,596

Expenses

Salaries $141,949

Fringe $30,885

Travel $2,267

Staff Development $174

Supplies, Postage, Materials $881

Memberships, Subscriptions $2,675

Communications, Website $461

Consultants, Contractual Services $25,220

Miscellaneous $525

Total Expenses $205,037

Net Rev/Exp ($1,441)

Year End Fund Balance $266,614

Disability Activist Anita Cameron To Speak At Congressional Briefing On Assisted Suicide

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Not Dead Yet, the Resistance

Bipartisan Resolution Opposing Assisted Suicide Laws Reintroduced

 

Anita Cameron, director of minority outreach for Not Dead Yet, will speak at a Congressional briefing to be held Thursday, December 12, 2019 in Room 2168 of the Rayburn House Office Building.

 

The briefing is cosponsored by the National Council on Disability (NCD), Congressman Lou Correa (D-CA) and Congressman Brad Wenstrup (R-OH). This briefing will explore the findings and recommendations of a recent federal study of the country’s assisted suicide laws and their effect on access to health care and other dangers for people with disabilities.

 

The briefing coincides with this week’s reintroduction of a bipartisan House resolution, “Expressing the sense of the Congress that assisted suicide (sometimes referred to using other terms) puts everyone, including those most vulnerable, at risk of deadly harm.” Representative Correa is the lead sponsor, joined by Representative Wenstrup, and additional original cosponsors are Rep. James Langevin (D-RI), Rep. Andy Harris, M.D. (R-MD), Rep. Daniel Lipinski (D-IL), Rep. Darin LaHood (R-IL), Rep. Collin Peterson (D-MN), Rep. Ralph Abraham, M.D. (R-LA), Rep. Chris Smith (R-NJ), Rep. Ann Wagner (R-MO), and Rep. Matt Cartwright (D-PA).

 

Cameron has often spoken of the risks posed to people of color if assisted suicide becomes normalized in our healthcare system. “Due to racial disparities, Blacks and people of color receive inferior healthcare compared to Whites, especially in cardiac care, diabetes and pain management. Blacks are diagnosed with cancer at much later stages and the prognosis is worse,” Cameron says. “With so much documented healthcare injustice, we should not grant the system a greater license to kill.”

 

NDY’s president and CEO, Diane Coleman, also provided a statement in support of the resolution: “As a national, secular, social justice organization, Not Dead Yet strongly supports this bipartisan effort to speak truth to counter the many myths about legalized assisted suicide. As Americans with disabilities, we are on the front lines of the nation’s health care system that too often devalues old, ill, and disabled people. We are deeply concerned that profits are being prioritized over human needs. 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.”

 

Additional national disability organizations issuing statements this week supporting the resolution include ADAPT, Disability Rights Education & Defense Fund and the National Council on Independent Living.

 

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Please Think Of Not Dead Yet On Giving Tuesday

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December 3rd is Giving Tuesday and we know there are many organizations worthy of your support. Please consider giving to Not Dead Yet this week. We work in countless ways to oppose society’s crushing discrimination in healthcare and the relentless assault of “better dead than disabled” messages. But we need you to make this work possible. Please go to NDY’s DONATE page to find out how to add your support.

Here is a short summary of NDY’s work during the Oct 2018 – Sep 2019 year.

Publications: During the reporting year, NDY published 54 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment, and family/caregiver homicides of persons with disabilities. NDY posted 162 Facebook entries and 257 tweets. NDY posted five videos on Not Dead Yet’s You Tube channel.

Media: National NDY issued ten press releases. NDY staff, board and activists authored twelve op-eds published in mainstream outlets. NDY staff, board and advocates were interviewed for 8 radio and 11 TV broadcasts. There were at least 41 print or online articles that mentioned NDY, including Associated Press, New York Times, Politico, Huffington Post and Forbes.

Systems Advocacy: NDY staff and advocates pursued a number of key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.

  • Assisted Suicide: NDY opposed legalization of assisted suicide through training, community organizing and legislative testimony in 13 states. Out of 22 assisted suicide bills introduced in 2019 or carried over from 2018, only the New Jersey and Maine bills, and one Oregon amendment bill, passed. Disability advocates were credited in mainstream press with playing a significant role in preventing passage of these bills in many states.
  • National Council on Disability (NCD) Bioethics Project: NDY’s CEO Diane Coleman served as a consultant regarding assisted suicide, futility policies, and discriminatory organ transplant policies pertaining to organ procurement.
  • “Futility” Cases: NDY was contacted and assisted in efforts which succeeded in protecting the lives of three disabled individuals whose health care providers or family planned to withdraw life sustaining healthcare.
  • Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup, challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. This included NDY issuing a public statement and press release opposing the use of QALYs.
  • Advance Care Planning: NDY continued to challenge the bias against living with significant disability that is increasingly evident in the professional training and public education materials of prominent advance care planning programs. Among other activities, on November 15, NDY responded to the NY Dept. of Health Advance Care Planning Request for Information.
  • Non-Discrimination in Healthcare: NDY worked with DREDF to spearhead communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.

NDY also filed 5 public comments on various policy issues and signed on to 16 policy letters and position statements.

Conference, Workshop & Other Training Presentations: Not Dead Yet staff, board and advocates provided 14 training and conference presentations in person or through Skype or webinars.

Collaboration and Networking: Throughout the year, NDY continued to serve on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, and CDR’s Public Policy Committee.

Disability Advocates Kathy Ware, RN and John Kelly Respond to MN Access Press Article

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Access Press in Minnesota recently carried two excellent articles by disability advocates written in response to an earlier article  by Marianne Turnbull, who is seriously ill with ovarian cancer, in support of an assisted suicide bill.

Kathy Ware is an RN and parent of an adult son with disabilities. Here’s an excerpt from her article:

The [National] Council on Disability came out with a report on October 9 about the dangers of assisted suicide laws for people with disabilities. The council clearly opposes medical assisted suicide in this extensive report. There are many national disability rights groups that oppose prescribing suicide including but not limited to ADAPT, American Association of People with Disabilities, Autistic Self Advocacy Network, Disability Rights Education & Defense Fund, National Council on Independent Living, TASH and Arc of the United States.

My 25-year-old son Kylen and I also testified at the recent Minnesota hearing on prescribed suicide. Kylen has quadriplegic cerebral palsy, profound cognitive disabilities, intractable epilepsy, chronic pain, and multiple other medical disabilities. I have been a registered nurse for 20 years. I have been a disability rights activist for 25 years. I am vehemently opposed to doctor and nurse-prescribed suicide.

The End of Life Options Act was based on “Death with Dignity” in Oregon. These are the top five reasons people ask their doctors to help them commit suicide: loss of autonomy, being unable to participate in activities that make life enjoyable, loss of dignity, loss of bodily functions and becoming a burden on family and friends and caregivers. The statistics kept for more than 20 years proves fear of pain or inadequate pain control is not mentioned in the top five reasons.

The top five rationale are descriptions of my son and other Minnesotans with disabilities. Able-bodied people cannot tolerate the prospect of becoming a person with a disability and developing dependencies on another person. They are so appalled at the loss of “dignity” this dependency brings that suicide is preferable to disability. It goes like this, “I would rather die right now by a prescription for suicide than to lose all dignity and turn into one of those people with disabilities for six months or less.” Doctor and nurse-prescribed suicide for these rationale supports the doctrine of better off dead than disabled. The assisted suicide bills devalue the life of my son and his peers.

To read Kathy Ware’s article in full, go here.

John Kelly’s article further explains:

Assisted suicide looks good when considered from a sympathetic individual like Marianne, but looking at the larger picture, it becomes clear that assisted suicide is too dangerous.

Assisted suicide inevitably takes the lives of non-dying people: 12 to 15 percent of “terminal” people admitted to hospice outlive their six-month prognosis, sometimes by years and decades. Actress Valerie Harper, who died last month, was given mere months to live 6 ½ years ago.

Doctors make mistakes!

Assisted suicide proponents like Marianne frame the issue as one of autonomy and personal choice, but in our vastly unequal society, choice is terribly constrained.

For example, more than half of Oregon program deaths in 2018 were reported by their doctors to “feel like a burden” on family and caregivers. In the absence of funded home care for all, it’s hardly a choice when the alternative to being a burden is either impoverishment and a nursing home, or assisted suicide. . . .

Adding assisted suicide to our broken, discriminatory health system makes for a deadly mix. As the cheapest “treatment” for serious illness, assisted suicide fattens insurers’ profits and crowds out more expensive treatment.

In Nevada, Dr. Brian Callister has reported that two of his patients were denied an often curative but costly therapy. Medical directors of the health insurance companies told him that they would only cover hospice and assisted suicide. . . .

To read John Kelly’s article in full, go here.