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….
