Background:
The Department of Health and Human Services recently allowed a comment period for organizations and individuals to share their thoughts on proposed changes to Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities. There are many proposed changes to the rule, but the two most significant changes are that Medicare Part B will formally be considered federal financial assistance under the ACA, and that language will be added to prohibit discrimination on the basis of gender identity and sexuality. You can view a more in-depth summary of the proposed changes here.
Our Public Comment:
Not Dead Yet is a grassroots disability organization that opposes assisted suicide and euthanasia as deadly forms of discrimination against disabled and chronically ill people. We are pleased to see the proposed amendments to Rule 1557, which will have a tangible, positive impact on disabled people in healthcare settings. As you continue in the rulemaking process, we ask that you consider the following barriers to equitable healthcare for disabled people, particularly discrimination related to clinical algorithms in healthcare decision making, organ transplantation and suicide prevention.
Quality of Life Assumptions and the Use of Clinical Algorithms
Involuntary withdrawal of life-sustaining medical treatment (LSMT) is a practice that has prematurely ended the lives of disabled and chronically ill people without the consent of patients or their surrogate decision makers. It is difficult to fully discern who is most at risk of involuntary treatment withdrawal since the data we have available is primarily from cases that went to court, and families of deceased people without the resources to pursue legal action are not a part of this data. The available data shows that older adults, especially those with chronic conditions, comprise a significant number of these cases [1]. BIPOC patients are also at higher risk of having LSMT withdrawn because, at least in part due to healthcare disparities, they are more likely to develop health conditions that necessitate the use of LSMT [2].
When a patient or their surrogate objects to a futility judgment, it’s important to examine the power dynamics at play. Because doctors have more institutional power than patients or their families do, it is vital that they prescribe care that embodies a combination of medical best practice and respect for the wishes of the patient and, if appropriate, surrogate decision makers. The use of clinical algorithms that are based on the notion that having a disability inherently reduces one’s quality of life biases care provision in a way that deprioritizes disabled people [3]. This quite literally has life-or-death consequences in decisions about the withdrawal of LSMT, as well as in situations where Crisis Standards of Care are employed.
A key example is the use of the Sequential Organ Failure Assessment (SOFA) throughout the COVID-19 pandemic as a way to determine who would receive care during shortages. As our colleagues at DREDF have pointed out, myriad factors related to communication disabilities and chronic illness could cause someone to receive a lower SOFA score, putting them at risk of being denied care during a shortage [4]. QALYs are another algorithm based on false assumptions about the quality of life among disabled people. We oppose the use of these discriminatory algorithms and support a more patient-centered approach that considers the needs and desires of patients, as well as more consideration of the perspectives of others who have undergone treatments that are the subject of these discussions.
Discrimination in the Organ Transplantation Process
There is a history of discrimination against disabled people who wish to receive organ transplants. Though organ donation is facilitated through a national program, each health center has its own policies and procedures on referring candidates for transplant. In a 2019 report, the National Council on Disability found that “the assumption that people with disabilities will not be able to comply with postoperative care has caused disability to be considered a contraindication to organ transplant at many transplant centers.”[5] This results in disabled people being denied transplant not because of current or reasonably foreseeable health problems, but because of the ableist idea that disabled people cannot follow instructions as well as nondisabled people. While some people may need more support in following postoperative procedures, this should not be the deciding factor in organ transplant candidacy evaluations.
Standardized nondiscrimination policies for transplant candidates, such as those introduced in the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235), should be integrated into the policies and procedures that healthcare centers create to comply with Rule 1557.
Discrimination in Suicide Prevention Care
When a disabled person presents with suicidal behavior, their desire to end their life may be validated or even encouraged by medical professionals in places where assisted suicide is legal, especially if they have a serious or advanced chronic condition [6]. Assisted suicide, also referred to as medical aid in dying (MAiD), is death by lethal drugs requested by a person and prescribed by a medical professional. A person can die by assisted suicide if they feel that the physical pain and/or emotional struggles of living with a serious illness or disability are too much to live through. If their doctor agrees with this concern, the doctor can write a prescription for a medication that will kill the person quickly.
Both assisted and unassisted suicide produce the same result: the intentional death of a person. One of the dangerous distinctions between assisted and unassisted suicide is that the former is deemed a rational response to illness or disability while the latter is usually seen for the tragedy it is. Therefore, when a disabled patient expresses suicidality, it is seen as rational. This puts disabled people at risk.
If a person meets the criteria for pursuing assisted suicide, they are disabled, whether they identify that way or not. One of the first steps in the process is that the doctor who prescribes lethal drugs determines “that the patient is capable and not suffering from a psychiatric or psychological disorder or depression causing impaired judgment.” Based on reports about people who died by assisted suicide in Oregon, in only 3% of cases was this determination made by a psychological professional [7].
“Impaired judgment” is clearly a subjective criterion. If the doctor or professional evaluating the patient holds true the ableist notions pervasive in our society– that disabled people are suffering, are burdens, that our care needs or society’s failure to meet those needs make us unable to live meaningful or acceptable lives, that our conditions are humiliating – then when a patient gives those reasons for wanting to die, the typical doctor or professional will not consider that as evidence of “impaired judgment.” They will write suicidality off as a logical response to being disabled.
Even when disabled people seek out healthcare for reasons unrelated to mental health, the American Psychiatric Association recommends that the patient should potentially undergo a suicide assessment [8]. They cite “functional impairments, pain, disfigurement, increased dependence on others, and decreases in sight and hearing” as risk factors for suicide. This is not a wholly unfounded assumption – a 2018 survey of more than 430,000 US adults found that respondents with disabilities were over 3 times more likely to experience “frequent mental distress” than respondents without disabilities [9].These studies problematically draw a surface-level correlation between having a disability and being suicidal, when in reality, the barriers disabled people face as a result of living in an ableist society often cause more emotional distress than the disability itself [10]. It is understandable that hospitals would see this data and want to perform a suicide assessment on disabled patients as a preventative measure since this population is much more likely to struggle with “mental distress.” However, there is a difference between using data trends to inform care decisions and reinforcing the assumption that disabled people must want to die because our lives are tragic and difficult, an assumption rooted in ableism.
Conclusion
Not Dead Yet recommends that the requisite nondiscrimination training outlined in the proposed Rule changes include specific education on disability cultural competency and anti-ableism, using materials and expertise from leading disability justice organizations such as the American Association for People with Disabilities, the National Council on Disability, the Autistic Self Advocacy Network and others.
The proposed amendments to Rule 1557 can lay the foundation for a healthcare system that affirms the inherent value of all human lives and focuses on protecting vulnerable populations from discriminatory practices. Not Dead Yet strongly recommends that organizational policies and procedures to comply with Rule 1557 include training from disabled-led organizations on healthcare disparities and disability justice, cultural competency and accessibility best practices.
Citations
[1]: Pope, T. (2022). Thaddeus Mason Pope. Thaddeuspope.com. Retrieved 3 October 2022, from https://www.thaddeuspope.com/medicalfutility/futilitycases.html.
[2]: Bazargan, M., & Bazargan-Hejazi, S. (2020). Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. American Journal Of Hospice And Palliative Medicine®, 38(6), 688-718. https://doi.org/10.1177/1049909120966585
[3]: Bazargan, M., & Bazargan-Hejazi, S. (2020). Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature. American Journal Of Hospice And Palliative Medicine®, 38(6), 688-718. https://doi.org/10.1177/1049909120966585
[4]: DREDF. (2020). Letter From DREDF and Additional Organizations Opposing California’s Health Care Rationing Guidelines – Disability Rights Education & Defense Fund. Disability Rights Education & Defense Fund. Retrieved 3 October 2022, from https://dredf.org/letter-opposing-californias-health-care-rationing-guidelines/.
[5]: National Council on Disability. (2019). Organ Transplant Discrimination Against People with Disabilities.
[6]: Stainton, T. (2019). Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins. BMC Medical Ethics, 20(1). https://doi.org/10.1186/s12910-019-0426-2
[7]: Oregon Health Authority. (2021). Oregon Death with Dignity Act 2020 Data Summary.
[8]: Jacobs, D. (2010). PRACTICE GUIDELINE FOR THE Assessment and Treatment of Patients With Suicidal Behaviors [Ebook]. Retrieved 3 October 2022, from https://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/suicide.pdf.
[9]: Robyn, C. (2020). Frequent Mental Distress Among Adults, by Disability Status, Disability Type, and Selected Characteristics — United States, 2018. Morbidity And Mortality Weekly Report, 69(36). https://doi.org/https://www.cdc.gov/mmwr/volumes/69/wr/mm6936a2.htm?s_cid=mm6936a2_w
[10]: Friedman, C. (2019). Most People Are Prejudiced Against People with Disabilities – The Council on Quality and Leadership. The Council on Quality and Leadership. Retrieved 3 October 2022, from https://www.c-q-l.org/resources/articles/most-people-are-prejudiced-against-people-with-disabilities/.