Friday, July 5, 2024

Not Dead Yet Comment on Hospice and Palliative Nurses Association’s Statement on “MAiD”

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