Not Dead Yet is a national disability rights organization focused on combatting disability based healthcare discrimination, particularly in the context of advanced or terminal illness. We are extremely disappointed that HPNA [Hospice and Palliative Nurses Association] would consider adopting a “stance of engaged neutrality” regarding whether assisted suicide should be permitted or prohibited. We urge HPNA to reverse course.
Moreover, although the proposed position statement [download available here] claims neutrality, its content reads like a defense and sometimes an outright promotion of a public policy of assisted suicide. Although only 11 jurisdictions have legalized the practice, HPNA’s statement says, “All hospice and palliative nurses should develop competence and mastery regarding MAiD in the domains of education, clinical practice, research, advocacy, and leadership.” HPNA appears not to have considered the views of either palliative care experts or disability rights activists who oppose the practice. The statement includes only limited references and minimal tolerance toward nurses who object to the practice.
HPNA tries to explain why assisted suicide should be referred to as “medical aid in dying” or MAiD for short. These are marketing terms. As Dr. Ira Byock, a palliative care specialist has written, “‘aid in dying’ makes it sound like giving someone a lethal drug is an extension of hospice and palliative care. It is not.”
A recent Psychiatric Times piece focused on the deaths of several persons with anorexia by assisted suicide, reiterating that terms such as medical aid in dying “lump categories of action together, obscuring the ethics of what is at stake and making meaningful debate difficult.”
The proposed position statement does identify some of the reasons why people contemplate assisted suicide. These reasons have little to do with the possibility that death may be close and much more to do with the lack of social support and unequal access to services including palliative and in-home personal care services. Disability justice activist Anita Cameron has noted, “Cuts to funding for home care services, as well as reduction or elimination of eligibility to those services, combined with racial and disability disparities and discrimination in healthcare, will lead to those being deemed to be terminal to feel that they have no choice but to ask for assisted suicide.”
It is also very concerning that the statement does not urge nurses to advocate or seek advocacy assistance to secure needed services or to otherwise pursue suicide prevention as the first priority. Given the endemic “quality of life” biases still prevalent in the health care community, disabled people, including those whose disabilities result from age or progressive illness, have long struggled for equal access to suicide prevention services. Too often, treatable depression will not be seen as exactly that.
Effective June 8, 2024, the 504 regulations promulgated by the Health and Human Services Department (HHS) prohibits health care providers receiving federal funds from denying medical treatment – or inducing a patient to refuse treatment – based on discriminatory attitudes based on disability. HHS has affirmed that medical treatment includes suicide prevention services. There is an inherent conflict between ensuring equal access to suicide prevention services and facilitating suicide for a patient subgroup. As written, HPNA’s statement raises serious questions about compliance with Section 504’s nondiscrimination regulations.
As Dr. Byock has said, “We need to refocus on the fundamentals of human caring and recommit to caring well for people from birth all the way through to death.” HPNA’s proposed position statement would take us in the wrong direction. Acceptance of assisted suicide would corrupt palliative care and make people, especially people who are members of devalued groups, afraid to use hospice services. It would undermine hospice and palliative care programs that deserve support.
We urge HPNA to reconsider its statement and return to the drawing board, this time inviting a group of nurses that at least equally represents the full range of diverse views on this subject.
Diane Coleman, JD, President/CEO Lisa Blumberg, JD, Consultant Not Dead Yet
The updating of the 504 Regulations by the Department of Health and Human Services under the Biden-Harris administration is historic. Various provisions included in the amendment interact and work together to promote equal access to healthcare for persons with disabilities. Not Dead Yet’s response to the Department’s request for public comment when the updates were proposed was focused primarily on section 84.56 which explicitly prevents discrimination in medical treatment based on disability. While our public comment did not result in any text changes, the Department addressed virtually all the points we had raised in its commentary to the final rule and did so in favorable fashion.
Section 84.56(a) provides that a person may not, on the basis of disability, be subjected to discrimination by a recipient of federal funding. (Throughout this blog, the term recipient will be used to refer to a health care provider receiving federal funds.)
Section 84.56(b) goes on to state that “a recipient may not deny or limit medical treatment to a qualified individual with a disability when the denial is based on: (i) Bias or stereotypes about a patient’s disability; (ii) Judgments that the individual will be a burden on others due to their disability, including, but not limited to caregivers, family, or society; or (iii) A belief that the life of a person with a disability has lesser value than the life of a person without a disability, or that life with a disability is not worth living.” The Department makes clear that this list of prohibited discriminatory criteria is not exhaustive.
NDY along with other commenters asked the Department to affirm that the section is intended to apply both to persons with existing disabilities and those whose prognosis includes disability. They did so. They stated that “Where a person’s prognosis is the result of impairments in a major bodily function, they would be considered a person with a disability under section 504… section 504 protects persons who are ‘regarded as’ having such an impairment. In cases of illness or injury so severe that a person needs a ventilator and tube feeding, or where a person is regaining consciousness after brain injury…although it will be a fact-specific inquiry, the individuals in these scenarios would almost certainly be covered under the definition of disability.”
In response to issues we and others raised about infants, the Department stated that it intends that this rule will generally apply to the provision of medical treatment for infants, including those seeking treatment for separately diagnosable symptoms or conditions related to their underlying disability, when medical treatment is provided to other similarly situated children. They give as examples a child with microcephaly with treatable seizures or a newborn with Down syndrome with a heart problem.
Section 84.56(c) prohibits a recipient from discriminating on the basis of disability in seeking to obtain consent from an individual or their authorized representative for the recipient to provide, withhold, or withdraw treatment. In our public comment we recounted a case documented in the National Council on Disability’s report on medical futility and disability where doctors gave parents of an infant with a significant disability misleading information about the child’s survivability because they felt that the child would be a social burden if he lived and wanted the parents to consent to the withholding of treatment. We were gratified the Department referred to this case to illustrate the type of scenario that is now prohibited.
The importance of the anti-steering provision cannot be overestimated. Indeed, it is a fair bet that this is the part of Section 84.56 that will prove most controversial with the medical community. Healthcare providers often think that it is part of their job to “guide” people to decisions they want them to make concerning whether or not to refuse treatment based on the presence of disability. (A future blog will deal with a study concerning the premature removal of life support due to disability fears).
The ethicist Thaddeus Pope has already raised the specter of a woman with advanced dementia being forced to undergo the optimal but arduous treatment for stomach cancer because the provider cannot make a “quality of life” judgment based on the woman’s dementia.
Ironically, the Department’s commentary on Section 84.56 discusses almost the exact scenario. The intent of Section 84.56 is to put patients with disabilities on the same plane as other patients. Section 84.56(c) gives persons withdisabilities (or their authorized representatives) the same right to refuse or stop treatment that all individuals have. As the Department states, a provider “can discuss with the patient or their authorized representative the implications of different courses of treatment, including whether treating the cancer is inconsistent with their preferences in light of anticipated complications…In addition, the physician informing the patient of anticipated side effects from treatment and the patient choosing to decline further life-sustaining treatment based on the patient’s belief that extending their life would not be of benefit to them is generally not in violation.”
What the doctor cannot do is to pressure, induce or cajole a person into saying “no” to life-saving treatment because the person is disabled or is expected to have a disability. They should not be pressing their personal attitudes about never wanting to “live like that” on others. Some ethicists, even as they say they promote self-determination, may disagree with this, but it is inaccurate to say that Section 84.56 forces people to submit to unwanted treatment.
It is to be noted that Section 84.56 does not limit the power of authorized representatives to make medical decisions. We were the one commenter to ask the Department to clarify that the regulation does not preclude Federal or State law from limiting the power of an authorized representative, including with respect to decisions regarding refusing life-sustaining care. The Department confirmed that such limitations would still be in effect. Thus, there is work disability advocates can do on the state level to reduce anti-disability “steering” and promote true informed consent.
Lastly, we raised concerns about how the following provision could be interpreted: “A recipient may not, on the basis of disability, provide a medical treatment to an individual with a disability where it would not provide the same treatment to an individual without a disability, unless the disability impacts the effectiveness, or ease of administration of the treatment itself, or has a medical effect on the condition to which the treatment is directed.”
The Department indicates that the provision should be read as allowing a provider to pursue a different course but with the same end when a person’s disability would impact the efficacy of the usual approach. The Department gives as an example a situation where an individual recovering from a foot or leg injury or surgery, who also has an anatomical loss of an arm, is prescribed a knee scooter even though the recipient would otherwise recommend crutches. The Department affirms that it would be discriminatory to deny any extra accommodation, expense, or time required for treatment related to a person’s disability. Advocates will need to watch and see how this plays out.
The update to Regulation 504 combined with the Americans with Disabilities Act will do much to lessen the healthcare prejudices people with disabilities face. It is not the end of the fight but possibly it is the end of the beginning. Thank you, HHS!
Jeff Jacoby’s column “For assistance in dying, please press 1” warns against the legalization of assisted suicide, especially highlighting its significant risks. As a disabled person, I share these concerns deeply.
Activists within the disability rights community fear that legalized assisted suicide could lead to coercion. Families might see it as a way to avoid caregiving; insurers might prefer it over costly treatments; and health care professionals, influenced by biases about quality of life, could steer patients toward this irreversible option.
Despite claims of compassion, legalizing assisted suicide risks perpetuating systemic ableism and potential abuse. Instead of offering death as a solution, we should prioritize bolstering support systems and health care for disabled individuals.
Comprehensive support services are crucial but often neglected. We already lack equitable and robust disability support systems, and the resulting problems lead to the underlying issues that push individuals toward considering assisted suicide.
Massachusetts must heed these concerns. Legalization of assisted suicide threatens the fundamental rights of disabled individuals to live with the respect and supports we deserve.
Ellen Leigh
Arlington
The writer is a member of Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide.
The other three letters the Globe chose to print in response to the Jacoby article each favored legalizing assisted suicide. These and Ellen’s letter are HERE.
Anita Cameron is a disability justice activist who has been involved in social change activism and community organizing for 42 years. She’s been arrested 140 times fighting for disability rights with ADAPT and involved with social justice work in healthcare, transportation, voting rights, emergency preparedness, representation, and LGBTQIA2S+ nondiscrimination. As a Black Disabled Lesbian, Anita’s unique intersectional perspective allows them to promote understanding among different groups of disenfranchised people.
Anita has been honored with the Autistic Self Advocacy Network’s 2017 Service to the Self Advocacy Movement, ADAPT’s 2018 Lead On Award, Rochester Museum and Science Center’s 2020 Changemaker Award, NCIL’s 2023 Corey Rowley National Advocacy Award, and she was selected in 2024 as one of 10 Black disability justice activists to receive a grant from Borealis Philanthropy’s Black Disabled Liberation Project for We Were There, Too: Blacks in the Disability Movement.
During the past month, the DisCoTec Center has been host to Anita as a virtual writer-in-residence to work on her memoir about her life, entitled Troublemaker, from which she will read this evening.
Made possible through generous funding from the Andrew W. Mellon Foundation – Just Dis Tech Project
