Not Dead Yet has joined many disability organizations in applauding the U.S. Dept. of Health and Human Services (HHS) Office for Civil Rights for proposing critically needed rules to update and amend its Section 504 regulations in the area of healthcare. NDY’s public comment focuses primarily on the Department’s questions concerning medical treatment (Section 84.56), value assessment methods such as QALYs (Section 84.57) and, briefly, home and community based services (Section 84.76). Brief excerpts follow and the whole Comment with references can be viewed HERE.
SECTION 84.56 Medical Treatment
In cases of illness or injury so severe a person needs a respirator and tube feeding, doctors sometimes recommend the withdrawal of such life support when it is still unclear if the person can survive but it is thought survival will bring with it significant residual disabilities. Dr. Joseph Fins, an expert in regaining consciousness after brain injury, has stated, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.” (5) It is also discriminatory. The prohibitions of Section 84.56 must be understood by providers to apply both in cases of existing disabilities and cases where the prognosis includes disability. We hope that 84.56 (b)(1)(iii) and (b) (2) accomplish this, but absolute clarity is essential.
As HHS has indicated in its discussion of the proposed rule, biases about the impact disabilities have on “quality of life” are endemic among medical professionals. One manifestation of these discriminatory attitudes is the failure to treat suicidal depression in people with disabilities, including older individuals, although other people with suicide ideation are routinely offered suicide prevention services.
Moreover, people who have disabilities …have sometimes reported that doctors have openly questioned the value of their continued survival. This type of discrimination has been documented in individual affidavits and underlies a federal lawsuit that two disabled Californians, joined by disability advocacy groups, have brought challenging the California Assisted Suicide Law as unconstitutional and in violation of the Americans with Disabilities Act and Section 504.
In light of the many ways that the healthcare system reflects a view that people with disabilities are worth-less, we recommend that the following be added to the specific prohibitions of Section 84.56 (b)(1):
(iv) the belief that the extra accommodation, expense or time required for treatment related to the individual’s disability is not justified.
[An example] Haleigh Poutre was a young girl who almost lost her life when her court appointed guardian asked the court that she be removed from all life support, including nutrition and hydration, only eight days after she became comatose allegedly resulting from a beating by her stepfather. The request was endorsed by her doctors who deemed her nearly “brain dead.” The court’s decision was slowed down by the objections of her stepfather, but the request was eventually granted. Then the child woke up. Haleigh was adopted by a loving family and is now an adult with residual disabilities who is engaged in the community. The case was inaccurately depicted in the media as an “end-of-life” case. Instead, it was a case of medical bias and an attempt to prematurely withdraw life sustaining care.
We applaud the fact that Section 84.56 seeks to prevent discriminatory medical “steering” while recognizing the right of an individual to refuse to consent to a treatment. The right to refuse treatment is key to personal autonomy and bodily integrity.
It gets tricky though when a surrogate is making irreversible decisions for a person who cannot at that time make them for herself. Sadly, it is not uncommon for Not Dead Yet to receive telephone calls from a hospitalized adult’s relatives who are desperate to prevent the withholding of treatment based on a surrogate’s or provider’s decision that the caller believes is inconsistent with the adult’s expressed wishes.
Other situations involve parental refusal to consent to life saving treatment or even the delivery of food and water to a child with a disability, including a newborn. … There have been cases, for example, where parents have been prohibited from denying medically indicated care to a child for religious reasons. As was argued in the amicus brief filed by disability activists in Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al, “limits on parents’ and guardians’ decision-making authority are no less applicable when the child has a significant disability than when the child has only minor or no disabilities.”
Moreover, an authorized representative’s refusal of nutrition and hydration for an individual shall not be effective if the individual, regardless of competency, indicates it is their choice to receive such nutrition and hydration….
SECTION 84.57 Value Assessment
In our view, QALYs add a false appearance of scientific legitimacy to prevailing social biases and “quality of life” judgments.
The Department is correct in explicitly prohibiting their use….
SECTION 84.76 Integration
We strongly agree with the critical importance of the integration mandate and particularly appreciate the following NPRM statement: “[A] hospital or acute care provider that routinely discharges persons with serious health disabilities into nursing homes due to inadequate discharge planning procedures that fail to assess patients for home-based supportive services and refer them to community-based providers, might be in violation of section 504’s integration mandate, based on discharge practices that result in serious risk of unnecessary placement within an institution or other segregated setting.”
An actual example: Two years ago, after a short hospitalization, hospital staff refused to discharge a Not Dead Yet staff member’s relative to their accessible home, arguing and pressuring him repeatedly to go to a nursing home and threatening to deny home health therapy if he rejected their plan. His only option to avoid an unneeded nursing facility was to discharge home “against medical advice.” Despite these hospital threats, home health assessors came and determined that he was fine at home where he received brief physical therapy and completed his recovery….
Representatives of Not Dead Yet, Second Thoughts Massachusetts and other people with disabilities testified in opposition to a proposed bill to legalize assisted suicide at a hearing held on October 20th before the Joint Committee on Public Health of the Massachusetts legislature. Witnesses were given only two minutes each for oral testimony and could also submit written testimony.
A number of disability advocates and activists testified powerfully and some spoke about their personal experiences of discrimination in the healthcare system. Below are timestamps from the captioned hearing recording in order of appearance. A hyperlink on the witnesses’ names will also take you to their written testimony if available.
John Kelly, who represented Second Thoughts Massachusetts, was called to speak but given insufficient time to open his Zoom microphone and the Committee chair did not respond to his (raised hand) request to be heard. In fact, despite promises made during the hearing to re-call people who missed their first call, the Chair did not invite registered witnesses a second time and the hearing was closed over an hour earlier than scheduled. The testimony John would have provided is HERE.
The federal Department of Health and Human Services (HHS) is proposing important and beneficial new regulations under Section 504 to clarify how the law prohibits healthcare discrimination based on disability. The notice of proposed regulations from the federal government is full of examples of disability discrimination by healthcare providers. For example, based on a report from the National Council on Disability, the notice states:
In its report, Medical Futility and Disability Bias, NCD discusses the example of Terrie Lincoln who, at age 19, was in an automobile accident that severed her spinal cord and caused her to become quadriplegic. The report describes that when Terrie “was in the hospital just following her accident, Terrie’s doctors repeatedly tried to influence her family to `pull the plug,’ stating that Terrie was a `vegetable’ and, even if she were to regain consciousness, would have no quality of life.” When Terrie did regain consciousness, she was pressured by her doctors to forego additional medical treatment that would extend her life due to judgments that life with the disability of quadriplegia was not worth living. This would be a violation of the proposed regulation….Terrie persisted, later coming off the ventilator, earning degrees in social work and public administration, and becoming a disability rights advocate and mother.
The notice requests public comments on the proposed regulations and includes specific questions concerning examples of healthcare discrimination. Public comments can be submitted HERE.
One of the topic areas and questions is:
84.56(c)(1) Professional Judgment in Treatment…
Medical Treatment Question 3: The Department seeks comment, including from health care professionals and people with disabilities, on the examples described in this section, whether additional examples are needed, and on the appropriate balance between prohibiting discriminatory conduct and ensuring legitimate professional judgments.
A very helpful explanation of the proposed rule and how to submit a public comment or personal story of healthcare discrimination is provided by the Autistic Self Advocacy Network HERE.
(10/20/23, Boston, MA) Nationally renowned disability activist Anita Cameron testified at a hearing this morning before the Joint Committee on Public Health of the Massachusetts legislature in opposition to a proposed bill to legalize assisted suicide. Witnesses were given only two minutes each. This is her testimony:
Testimony against H. 2246/S. 1331 End of Life Options Act
I’m Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to medical discrimination, healthcare rationing, euthanasia and assisted suicide.
I am here in opposition to H. 2246/S. 1331, the End of Life Options Act
I live with intractable pain. I have multiple disabilities. Two are degenerative. One will take my life. One of my conditions, though chronic, can become terminal if I lose access to treatment.
These laws are dangerous because though they are supposed to be for people with six months or less to live, doctors are often wrong about a terminal diagnosis. My mother, while living in Washington state, was determined to terminal and was placed in hospice. She didn’t die, but lived almost 12 years!
This law will put sick people, seniors and disabled people, especially, at risk due to the view of doctors that we have a lower quality of life, therefore leading them to devalue our lives. Now add race and racial disparities in healthcare to this. Blacks, in particular, receive inferior health care compared to whites in the areas of cardiac care, diabetes, cancer and pain management.
What’s especially dangerous is that in states where it’s legal, if you lose access to healthcare, turning your chronic condition into a terminal one, you can request assisted suicide. It’ll be cheaper to kill you than to care for you.
As long as disability discrimination and racial disparities in healthcare exist, assisted suicide laws have no place in Massachusetts.
Lonnie VanHook is also one of the plaintiffs in this case which was brought under the Americans with Disabilities Act to overturn this law as a deadly form of discrimination. Everyone who dies by assisted suicide is disabled, even if they don’t think of their impairments that way. Moreover, data shows that disability issues are their reasons for requesting assisted suicide. Making assisted suicide part of the healthcare system is a danger to us all.
Please watch Lonnie tell his story and consider signing the petition supporting his case.
