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.

 

Federal study finds QALYs restrict access to lifesaving healthcare for people with disabilities

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The National Council on Disability issued the following release on November 6, announcing the latest report in its bioethics series.

Federal study finds certain health care cost-effectiveness measures discriminate, restrict access to lifesaving treatments for people with disabilities

For Immediate Release                                           

WASHINGTON – Today, the National Council on Disability (NCD)—an independent federal agency– released a study examining “Quality-Adjusted Life Years” (QALYs) as a health care cost-effectiveness measure that guides coverage decisions regarding drugs and treatments by private and public health insurers.

As the cost-effectiveness measure gains popularity among prominent nonprofit corporations and professional associations in the U.S., Quality-Adjusted Life Years and the Devaluation of Life with Disability examines the potential of limiting access to lifesaving medications and treatments for people with disabilities and those with chronic illnesses by its use.

The report identifies the use of QALYs by other countries to curb healthcare spending and analyzes whether or not the long opposition to QALYs by the disability community is well-founded based on its impact on access to care.

In its review, NCD found QALYs calculations often rely upon a quantification of the value of a year of life with a disability that is lower than an individual without a disability as a baseline assumption that can correlate with a quality of life assessment, resulting in a denial of care in consideration of cost.

“The perception that people with disabilities do not have a high quality of life is based on old stereotypes from a bygone era,” said NCD Council Member Clyde Terry. “Purely measuring the quality of life based on cost-effective outcomes starts with a premise of counting a person with a disability as less than whole, producing inherently discriminatory outcomes.”

In its study, NCD found sufficient evidence of discriminatory effects of the measure to warrant concern, including: concerns raised by bioethicists, patient rights groups, and disability rights advocates; and the inability of patients to obtain coverage of needed healthcare in countries where QALYs are used frequently. NCD also found that when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, it was found to violate the Americans with Disabilities Act as inherently discriminatory.

Due to the rapidly rising cost of healthcare, spending has become a major concern for healthcare policymakers and public and private insurers. Despite the growing understanding that disability is a normal part of the human experience, negative biases and inaccurate assumptions about the quality of life of a person with a disability persist in the medical context, and these biases can have serious and even deadly consequences when insurers refuse to cover the cost of medicines and treatments based on a cost-benefit analyses that rely upon faulty premises.

Key findings and recommendations from Quality-Adjusted Life Years and the Devaluation of Life with Disability include:

Key Findings:

  • The United States Federal Government does not have a single, comprehensive policy on the use of QALYs. It has considered increasing its utilization of cost-effectiveness research and has also rejected the idea at different points in time, leading to inconsistent policies across federal agencies. Some agencies are banned from using QALYs to make benefits and coverage decisions, while others use it frequently.
  • There has been increasing interest by the U.S. Federal Government in reducing the cost of healthcare by modeling parts of its national health insurance programs after the health care systems of other countries, such as the United Kingdom. Several of these countries utilize QALYs to make benefits and coverage decisions. The coverage denials and loss of access to care faced by people with disabilities in these countries illustrate what might happen if the United States made a similar choice.
  • Cost-effectiveness research (including QALYs) is one of many different types of evidence insurers consider when making their decisions. There is little transparency in insurers’ internal decision-making processes.
  • There are alternatives to the use of QALYs, ranging from well-established methods regularly used by U.S. federal agencies already, such as cost-benefit analysis, to unexplored but promising alternatives such as value frameworks that use patient preferences to determine the value of healthcare treatments.

Key Recommendations:

  • When enacting health reform bills, Congress should avoid creating provisions of any bill that would require the agency with management and oversight responsibilities to cover only the most cost-effective drugs and treatments or to require the agency to impose restrictions on less cost-effective treatments.
  • Congress should pass legislation prohibiting the use of QALYs by Medicaid and Medicare and provide funding to the U.S. Department of Health and Human Services (HHS) for research on best practices on the use of cost-effectiveness to inform benefits and coverage decisions with respect to Medicare and Medicaid. “Best practices” in this case refer to a means of utilizing cost-effectiveness research that facilitates greater access to care, and does not reduce access to care for people with chronic health conditions and disabilities.
  • DOJ and HHS Office of Civil Rights should jointly issue guidance clarifying that the ADA applies to coverage programs that states operate such as Medicaid. Additionally, guidance should clarify that Section 504 of the U.S. Rehabilitation Act and Section 1557 of the Affordable Care Act apply to health insurance programs operated by recipients of federal financial assistance from HHS. The guidance should specifically discuss how these authorities apply to benefits and reimbursement decisions, and that payment decisions should not rely on cost-effectiveness research driven by QALYs.
  • HHS Centers for Medicare and Medicaid Services (CMS) should utilize well-established alternatives, such as Multi-Criteria Decision Analysis, which is a method that better acknowledges the complexity of healthcare coverage decisions, or cost-benefit analysis, when the exact benefits and costs of a drug or treatment are known.

Read this and all of the reports in NCD’s Bioethics and Report Series at https://ncd.gov/publications/2019/bioethics-report-series

About NCD’s Bioethics and Disability Series

NCD’s bioethics and disability report series focuses on how historical and current devaluation of the lives of people with disabilities by the medical community, researchers, and health economists perpetuates unequal access to medical care, including life-saving care. NCD has released the following reports: Organ Transplant Discrimination Against People with Disabilities; The Danger of Assisted Suicide Laws; Genetic Testing and the Rush to Perfection; Quality-Adjusted Life Years and the Devaluation of Life with a Disability; and will release its final report, Medical Futility and Disability Bias on November 20.

About the National Council on Disability

First established as an advisory council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.

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Texas Mother Fights To Save Her 9-Month-Old Baby From Hospital’s Futility Judgment

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Nine month old Tinslee Lewis was scheduled to die today (11/11/19), based on a Fort Worth hospital’s decision to remove her ventilator under the Texas futility law. The nation’s most infamous futility law provides for ten days notice and you’re dead — unless another willing medical provider takes over.

From news video, it does not appear that Tinslee is being declared “brain dead”, or even unconscious. She seems quite responsive. After her story hit the news over the weekend, a Texas court has reportedly granted a temporary restraining order and extension till November 22.

Here’s a news video interviewing Tinslee’s mother:

There’s also information on the Project TX Fragile Kids Facebook page.

The National Council on Disability’s bioethics report on Medical Futility will be issued November 20, 2019.

Meghan Parker Op-Ed Published: Our problem with assisted suicide

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Our problem with assisted suicide: Why disability advocates worry about making it easier for physicians to help New Yorkers die

By Meghan Parker
New York Daily News, October 22, 2019

Proponents of New York’s physician-assisted suicide bill seem perplexed by the strong opposition from disability activists.

But doesn’t the bill only apply to adults who are expected to die within six months so they can control when they die? Isn’t that a basic right that we should all have?

As someone who is blind with a chronic condition, and who has spent years fighting for the rights of people with a range of disabilities, let me explain.

Under assisted-suicide laws, doctors play two critical roles. First, they determine if a person is indeed terminal. Then, they prescribe a drug combination that will cause death.

I am deeply concerned that the fate of thousands of people who struggle with serious health challenges will hinge on medical professionals’ subjective perceptions and the guidance they give. My experience tells me that as a result, we will see patients with the same diagnosis or functional levels who are more or less likely to die based on factors that shouldn’t matter.

Assisted suicide is typically depicted by proponents as a choice for patients who have tried everything. But the legislation doesn’t ensure that assisted suicide is truly a last resort. And proponents ignore the fact that having access to “everything” is a luxury of the few.

No one knows this better than disabled people. Complications from chronic conditions can turn deadly when the appropriate treatment or equipment cannot be promptly obtained. Survival rates for cystic fibrosis vary depending on the type of insurance a person has.

Before we even consider legalizing assisted suicide, we must address healthcare inequities that cause people who want to live with proper care to needlessly become “terminal.” Otherwise, we are effectively relegating people with fewer options to premature death.

More fundamentally, assisted suicide is based on the assumption that life is so burdensome for some individuals that it is reasonable for them to want to die early. To me, this sounds dangerously close to the “better dead than disabled” attitude that people with disabilities have long struggled against.

As Dr. Ira Byock, a specialist in palliative care and a progressive Democrat, has aptly observed, “when doctor-induced death becomes an accepted response to the suffering of dying people, logical extensions grease the slippery slope.”

Proponents insist any law will come with safeguards, but nothing can prevent an errant prognosis or keep a vulnerable person from being subtly coerced. Official reports state that about half the people who have died by assisted suicide in Oregon felt like a burden on others.

Terms like “terminal illness” that seem well-defined are open to varying interpretations. Is a person with muscular dystrophy who may not survive if he gets pneumonia again considered terminal? Indeed, there are many disabling conditions like Parkinson’s disease that may shorten life.

The requirement that two doctors must agree that, in their reasonable medical judgment, a patient will die within six months or less does not mean that their predictions are right. In fact, the data show that some people don’t take their lethal drugs and far outlive their prognosis.

One provision of the bill touted as specifically protecting disabled folks and the elderly may actually do the opposite. This is the prohibition against a person qualifying for aid in dying “solely because of age or disability.” The word “solely” implies that age or disability can be among several factors to be taken into consideration in determining if a patient can be given a lethal prescription. And the reported reasons people have requested assisted suicide in Oregon — loss of autonomy, less able to engage in activities, etc. — indicate that virtually all who die by lethal prescription have been disabled in some way.

Many disability-rights activists oppose passage of New York’s assisted suicide bill because it would put people like us at risk. But our focus is broader than that. We aim for a fair and compassionate community where everyone can get the medical care they need and want, and everyone has enough social support and affirmation that they can live without feeling a duty to die.

Parker is the director of advocacy for the New York Association on Independent Living.