A UK newspaper reported Saturday that some British patients with intellectual disabilities have been issued “do not resuscitate” orders if they contract coronavirus. The revelation that people with disabilities were denied lifesaving care by the National Health Service has caused outrage on both sides of the Atlantic.
Underappreciated by many American critics of the NHS is that similar policies in U.S. states have been proposed, or exposed, during the course of the coronavirus pandemic. Many have been shelved through the initiative of the federal Department of Health and Human Services’ Office of Civil Rights.
But changes at the office leave open the question of whether disabled Americans might soon face increased instances of healthcare discrimination, especially as new strains of the coronavirus emerge.
The future of federal efforts to push back on healthcare discrimination for the intellectually disabled could become a big factor in President Joe Biden’s efforts to boost his Catholic bona fides.
The Guardian reported Feb. 13 that the DNR orders, normally reserved for patients too frail or physically compromised to benefit from attempted resuscitation, had been attached to UK coronavirus patients because of their intellectual disabilities.
A report on the practice from the NHS’ Care Quality Commission is due out in the next few weeks, but indications are that the DNR orders likely had some lethal effect:
During the UK’s most recent phase of lockdown, the coronavirus accounted for 65% of deaths among people with intellectual disabilities, compared to a 39% rate among the general population, according to The Guardian. Last week, a report from the UK’s Office of National Statistics found that around 60% of Britons who died of the coronavirus had intellectual disabilities.
The Guardian report, and the statistics behind it, have been met with outrage from disability rights campaigners.
In the United States, state and local policies have also excluded people with disabilities from receiving proper care during the pandemic during the last year. And a review launched last month by the HHS OCR suggests the U.S. situation could be much worse than had been previously thought.
In January, the OCR kicked off a process to review discrimination experienced by people with disabilities across a range of healthcare issues, especially systematic discrimination caused by healthcare resource policies and value assessment methodologies.
On Jan. 15, the office issued a formal “Request for Information” (RFI) on instances of discrimination in crisis medical provision plans, including pandemic responses.
It also sought information on cases of people with disabilities, and their families, being pressured into “the withdrawal of life-saving or life-sustaining care as well as denials of care emerging from medical futility determinations,” or instances of “steering persons with disabilities toward the provision of life-ending services on the basis of disability.”
The OCR asked to review policies that include “use of measures that assign percentage values to the lives of individuals or groups of individuals with disabilities due to their disability or judgments regarding quality or relative worth of life” in policies aimed at denying people care.
Launching the investigation suggests that the OCR at least has reason to suspect that people with disabilities are systematically denied care, and face ongoing healthcare discrimination by medical practitioners and policymakers across the country.
The RFI also raises the possibility that people with disabilities are being steered disproportionately toward ending their own lives - or their families are being steered to do it for them.
The Biden administration has not yet named a new director for the OCR. But if the eventual appointee cancels the RFI initiated by outgoing OCR head Roger Severino, it would suggest a shift in priorities on the healthcare civil rights of Americans with intellectual disabilities.
A lapse in federal attention to such policies would also likely lead to a U.S. increase in the kinds of charges now being made in the UK.
For Biden, continuing to focus attention and resources on disability healthcare discrimination could be a win in the administration’s effort to gain broader support among practicing Catholics and their bishops.
The administration’s support for expanding legal protection for abortion has been, and will continue to be, a significant stumbling block for the president among some of his co-religionists, including the majority of the U.S. episcopate.
But even while defending his abortion policy agenda, Biden has insisted that his views on human life and dignity are affirmed by Catholic doctrine. Pushing back on healthcare policies that de-prioritize the intellectually disabled, or make utilitarian calculations about their right to resources, would give him something on the scoreboard to support that claim, even if it likely wouldn’t overcome the political consequences of his abortion agenda.
On the other hand, if the Biden administration drops the investigation into disability healthcare discrimination, Biden’s Catholic critics will point to their claim that the president uses Catholic rhetoric to cover an essentially secular agenda, and an essentially eugenic position on critical life issues.
In short, no matter which way it goes, the OCR’s direction on the intellectually disabled is important to the Catholics with whom Biden says he wants to share common ground. It is more important, however, to a group on the “existential peripheries” often mentioned by Pope Francis — the intellectually disabled, and those who love them.