State redoing ethics guidelines
California’s public health officials will rework ethical guidelines for hospitals issued in April after groups representing thousands of seniors and people with disabilities across the country protested that younger, healthier people would get preferential access to lifesaving care in a worstcase coronavirus surge.
More than 60 senior and disability rights organizations sent two letters last week to Gov. Gavin Newsom and Dr. Mark Ghaly, secretary of the California Health and Human Services Agency, arguing that the April 19 guidelines would discriminate against the elderly and disabled if resources ran low.
“The lives of people with disabilities are equally worthy and valuable as those of people without disabilities,” Claudia Center, legal director at the Disability Rights Education and Defense Fund in Berkeley, said in her April 22 letter to Newsom, signed by dozens of groups — from the Gray Panthers of San Francisco to the National Multiple Sclerosis Society. “Under state and federal laws, people with disabilities must have an equal opportunity to receive lifesustaining treatment during the COVID19 pandemic.”
The state’s guidelines laid out a scoring system to help doctors and others decide in a crisis who would be admitted to intensive care if there weren’t enough beds for everyone who needed them, and who would get a ventilator or other potentially lifesaving treatment. The guidelines advised the deciders to use patients’ vital signs to measure shortterm survival chances, and consider chronic conditions like cancer or dementia to measure life expectancy. In case of a tie, they could give priority to frontline health workers and younger people.
The guidelines said ethical decisions in a crisis should shift from providing the best care to each patient, to achieving the “best possible outcome for the largest number” of people.
“The justification for this principle does not rely on considerations of one’s intrinsic worth or social utility,” according to the document, with an introduction signed by state Health Officer Dr. Sonia Y. Angell. “Rather, younger individuals receive priority because they have had the least opportunity to live through life’s stages.”
Ingrid Tischer of Berkeley knows she wouldn’t fare well under such a system. She has a degenerative form of muscular dystrophy that requires her to use a wheelchair, and a respiratory condition that requires her to use a breathing machine while sleeping.
“The (medical) chart that they’re going to read is going to document all the areas in which I’m fragile, but won’t chart all the experience I have in coping — if I get the right care and the right equipment,” said Tischer, director of development at the Disability Rights Education and Defense Fund.
“According to their protocols, the things that I need, like the equipment and the care, are the things that I would actually have taken away, potentially,” she said. “That is really terrifying.”
A second letter to Ghaly on April 22 came from the Disability Rights Education and Defense Fund; Disability Rights California, headquartered in Sacramento; and Justice in Aging, in Berkeley.
“When the crisis abates and we consider how we responded and who suffered the greatest harm, if higher mortality rates are experienced by older adults and people with disabilities, it should not be because discriminatory bias led to denial of care,” the letter read.
The California Department of Public Health reposted its guidelines on April 23, marked them “draft,” and said new guidelines will be issued “soon.”
“We are looking at the entire document to ensure that it reflects our values as a state and (doesn’t) discriminate against individuals based on their race, age, disability, sex, gender identity, and sexual orientation,” said Kate Folmar, spokeswoman for the California Health and Human Services Agency. A note to that effect is included in the reposted guidelines.
Folmar said the agency is consulting with the 33 members of its advisory committee on aging, with representatives from local governments, universities, unions and advocacy groups.
Advocates for seniors and the disabled are urging the state to avoid making decisions based on life expectancy, which they argued is arbitrary and can be inaccurate. Tischer said doctors told her she would live only to 40. She is now 54.
Making such decisions based on life expectancy also can reinforce historic discrimination because of health disparities between poor people — who are often people of color — and wealthier people, according to the Center of Disability Rights.
She said doctors should make lifeanddeath decisions in crisis situations based solely on whether an individual will survive hospitalization. And she cautioned that the state’s scoring system to judge shortterm survival based on vital signs is inherently unfair. For example, people with a speech impediment would fail the part of the test that judges articulating coherent sentences.
The guidelines say decisions about crisis care would be made by a triage team of medical providers. Tischer wondered how many members of those teams would be disabled or elderly.