Position: Support with amendments
Committee: House Health and Government Operations Committee
The Maryland Catholic Conference represents the public policy interests of the three Roman Catholic (arch)dioceses serving Maryland: the Archdiocese of Baltimore, the Archdiocese of Washington, and the Diocese of Wilmington, which together encompass over one million Marylanders.
House Bill 1167 seeks to address the health disparity in the standard of care given to people with disabilities. The discrimination against people with disabilities in reception of appropriate health care has been a growing concern throughout the world following the widely publicized cases of Charlie Gard and Alfie Evans in the UK.
In 2019, the National Council on Disability issued reports from a multi-year review finding that people with physical, intellectual or psychiatric disabilities are more likely to be denied organ transplantation even when there is no medical contraindication, are less likely to receive life-saving or sustaining treatment under the Quality Adjusted Life Years metric, and their care is more likely to be viewed as futile.1
This concern has been brought into full relief during the COVID-19 pandemic. Last year, hospitals in both the UK and in Oregon placed blanket Do Not Resuscitate orders on people with intellectual disabilities – including people with Down syndrome.2 The Oregon hospitals were not rationing health care but still required the DNRs, claiming people with intellectual disabilities had “low quality of life”.3 Similarly, Michael Hixson, a disabled black man in Texas, was denied treatment for COVID-19 by his doctors because he was a quadriplegic with little “quality of life.” The hospital assumed guardianship of Mr. Hixson, denied the wishes of his wife, refused him a breathing tube and nutrition, and he died six days later.4
In the last year, the Department of Health and Human Services Office of Civil Rights had to intervene to revise crisis standards of care for four health care systems in North Carolina, North and Southwest Texas, and the Indian Health System to ensure the elderly and disabled were not excluded from treatment or reception of ventilators. Following these high-profile interventions, the Office of Civil Rights began to study discrimination in health care this January, particularly when it comes to ventilator rationing, life-saving care, and the use of discriminatory metrics such as life expectancy, resource intensity, and duration of need which most impact the disabled.5
The Catholic Church teaches that “every person is obliged to use ordinary means to preserve his or her health,” so long as it provides a “reasonable hope of benefit without imposing excessive risks and burdens”.6 Excluding people with disabilities from receiving appropriate health care is of grave concern.
Maryland does not have a crisis standard of care across the state, meaning treatment can be applied inequitably. In other states, these standards vary widely.7 Due to the complex nature of this topic and the many stakeholders involved, including hospital administrations, physicians, ethicists, and advocates for the elderly and the disability community, we believe this issue would best be addressed by a working group of the Maryland General Assembly to study discrimination against the elderly and people with disabilities in healthcare settings.
For these reasons, we recommend striking the text of this bill and replacing it with a working group. We would encourage such a working group to include four representatives of private, not-for-profit hospitals in the state and engage the expertise of Catholic healthcare in this important discussion.
1 National Council on Disability, Bioethics and Disability Report Series 2019
2 The Guardian, “Fury at ‘do not resuscitate’ notices given to Covid patients with learning disabilities” 13 Feb 2021
3 NPR, “Oregon Hospitals Didn't Have Shortages. So Why Were Disabled People Denied Care?” 21 Dec 2021
4 NPR, “One Man's COVID-19 Death Raises The Worst Fears Of Many People With Disabilities” 31 July 2021
5 HHS Office of Civil Rights, “OCR Seeks Information on Addressing Disability Discrimination in Health Care and Child Welfare Contexts” 15 Jan 2021
6 USCCB, “Ethical and Religious Directives for Catholic Health Care Services,” 6th ed. 2019
7 Manchada et.al., “Crisis Standards of Care in the USA: A Systematic Review and Implications for Equity Amidst COVID-19,” Journal of racial and ethnic health disparities, 1–13. 13 Aug 2020