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As state settles on guidelines about who would get care in worst-case scenario, disability advocates raise flags

Medical personnel wearing personal protective equipment remove bodies from the Wyckoff Heights Medical Center Thursday, April 2, in the Brooklyn borough of New York. As coronavirus hot spots and death tolls flared around the U.S., the nation's biggest city was the hardest hit of the all and states across the country, including Washington, are preparing to make tough decisions about how care may have to be allocated. (Mary Altaffer / AP)

Who lives? Who dies?

It’s a decision no physician ever wants to make, especially in a profession predicated on preserving and saving lives.

In the midst of a global pandemic, however, such fraught decisions may have to be made. To prepare, states across the country are adopting standards to guide these life-and-death decisions that may arise if resources to treat COVID-19 patients run low.

Clinicians and public health experts in the Puget Sound area have been meeting over the past few years to develop guidelines to establish how health care might be delivered if supplies, staffing or hospital capacity become limited.

But a process that seemed theoretical just a few months ago is now being readied for possible implementation.

As health care providers look to countries like Italy, where doctors are forced to choose which patients get ventilators and which ones don’t, states have adopted guidelines to help physicians make the same decisions if necessary.

The Washington State Department of Health recently reviewed these guidelines, called crisis standards of care, and endorsed them.

The Regional Emergency and Disaster Healthcare Coalition, or REDi Coalition, which will coordinate COVID-19 emergency responses east of the Cascades, links to these guidelines as their standards of care online, as well.

But officials are doing what they can to avoid ever resorting to using such guidance.

“We are doing everything possible to slow the spread of the virus and increase resources within the healthcare system so that resources will be available for everyone who needs them,” Dr. Kathy Lofy, state health officer, said in a statement.

State advocacy groups have taken issue with some of the language included in the guidelines, arguing they could lead to discrimination against people who have disabilities or underlying health conditions.

Locally, hospital executives stressed that the Spokane area is a long way off from implementing crisis standards of care.

“We have a relatively small number of patients in the hospital,” said Dr. David O’Brien, chief executive of MultiCare’s East Region that includes Spokane. “Providence and MultiCare have both done a lot of work to expand our capacity of the hospitals, and we are working very hard to make sure we never have to face that potential problem.”

Health care providers believe Spokane-area health care systems were able to prepare for COVID-19’s arrival and learn from hospitals on the West Side.

“When we talk about crisis standards of care, that’s an absolute worst-case scenario, and you always have to anticipate the potential need, but we feel that potential need is a long, long, long ways off,” said Dr. Dan Getz, chief medical officer at Providence Holy Family and Sacred Heart Medical Center.

If necessary, hospitals plan to share critical resources and believe they have enough supplies to take care of the Spokane community.

Health experts predict that when it comes to rationing resources and ventilators used to keep people breathing could be in high demand. If crisis standards of care are implemented, this could mean deciding who gets to have a ventilator and who does not.

“From a ventilator standpoint, I feel optimistic, again, in our community that we have enough ventilators to take care of people that require them,” Getz said.

What’s the plan

The Washington Scarce Resource Management and Crisis Standards of Care outline both triage plans for adult and pediatric intensive care unit admissions, as well as specific strategies to preserve resources like ventilators, oxygen and personal protective equipment.

The standards lay out algorithms for how people will be evaluated and assessed for their needs for beds in intensive care units. These standards cannot be used unless the health officer declares a crisis situation and hospitals are at capacity or overwhelmed.

Individual physicians will not be making the decisions alone, however. Washington’s standards place that responsibility with triage teams at each hospital, made up of two or three senior clinicians with experience in trauma or emergency environments, a medical ethicist and, when possible, clinicians who will not be primary providers of care for COVID-19 patients. The teams will use the algorithms to make decisions.

These teams will follow flow charts, evaluating who gets treated in the intensive care unit and who does not. At the end of the flowchart, the “tiebreaker” in Washington’s guidelines is not age-related; it’s based on a first-come, first-served basis or, as the guidelines state, “the patient who has been waiting the longest.”

Dr. Thomas May, a professor at the Washington State University College of Medicine, believes this is better than using life cycles or age as a tiebreaker, which would give preference to a younger person over an older person if they scored the same on all other criteria.

May believes Washington’s guidelines avoid some of the controversial landmines these types of policies can pose, although he acknowledged it cannot avoid them all.

“I think they are well-considered guidelines and avoid some of the controversies. Some remain, but I think that those are unavoidable, and I think that some of the more problematic controversies were addressed correctly by Washington state’s task force,” May said.

The potential for discrimination?

According to the critical-care guidelines, triage teams are directed to evaluate patients based on five criteria: how long a patient will need care; the forecast of the disease considering the patient’s underlying illness; the patient’s response to current treatment; degree of organ dysfunction; and baseline functional status.

This last criterion especially concerns disability rights and advocacy groups. The standards extrapolate “baseline functional status” as a criteria to “consider loss of reserves in energy, physical ability, cognition and general health.”

Disability Rights Washington, as well as the Arc of the United States and Self Advocates in Leadership, took issue with this language and other parts of the state’s guidelines, due to its potentially broad application.

The groups filed a complaint with the U.S. Department of Health and Human Services on March 23, explaining their concerns with Washington’s policy, which it says violates federal disability rights laws by discriminating against people with disabilities.

“While discussions about the details of the plan may be evolving, it is clear that it will discriminatorily disadvantage people with disabilities,” the complaint says.

David Carlson, an attorney and director of advocacy at Disability Rights Washington, said terms like baseline functioning, cognition and energy level deserve examination since “people who are older and in the disability community may recognize (them) as code words.”

The federal HHS Office of Civil Rights issued a bulletin on March 28 addressing some of the groups’ concerns.

“Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities,” the bulletin says, adding decisions should be made “based on an individualized assessment of the patient based on the best available objective medical evidence.”

Hospitals and health care providers are subject to anti-discrimination laws, including the Americans with Disabilities Act, the Rehabilitation Act and parts of the Affordable Care Act.

At the heart of advocates’ concerns is implicit bias.

“If we know our system on a good day has implicit bias against those individuals, then certainly when it is under a great amount of stress and not able to meet everyone’s needs, that stress won’t go away,” Carlson said. “It will be magnified.”

What’s at stake

When it comes to deciding who lives and who dies, there will almost certainly be dispute about the correct choice. Ultimately, these types of guidelines point to deeper, more philosophical views of the value of human life and humanity at large.

Some approaches are much more utilitarian, focusing on the greatest good for the greatest number of patients. These approaches can leave out nuance, however, in the midst of complex, multifaceted decisions, particularly in neglecting how biases can affect decisions.

“When we’re thinking of how to make those tough decisions, principles beyond utilitarianism ought to be considered,” Dr. Morhaf Al Achkar, a physician and professor at the University of Washington Medical School, said.

Even under Washington’s guidelines, underlying health conditions are a part of the criteria used to determine resource allocation in crisis situations. Those conditions include severe heart failure, lung disease, malignancy with a poor recovery prognosis, or liver disease.

Al Achkar has had stage 4 lung cancer for more than three years. Cancer treatment has improved drastically in recent years, however, and a prognosis that used to mean just a few months left to live can now mean a person has years to live.

Even still, these guidelines could affect Al Achkar personally due to his cancer, despite the fact he is still functional and working as a physician.

Relying on an underlying health condition to make a decision alone does not always align with how well modern medicine can work today. Instead, Al Achkar said, decisions about care should be made on a case-by-case basis and based on informed conversations between patients and their providers, with consideration of the status of control of underlying diseases, quality of life and the odds of benefiting from the treatment in the short term.

“How do we judge people with illnesses that historically have been considered to be a predictor of a bad outcome in the next year or two, while now people are living with them long term?” Al Achkar asked.

Ivanova Smith, a disability rights advocate, points out in the HHS complaint that her intellectual disability could put her at greater risk of discrimination, if she were evaluated based on “cognition,” as the state’s guidelines suggest she could be.

“I know already intellectually disabled people get denied care because of being seen as lacking value,” she says in the complaint.

Washington state’s guidelines emphasize several ethical principles that should be used to inform decisions, including fairness, transparency and accountability. The Institute of Medicine’s 2012 framework for developing crisis standards of care, which Washington’s guidelines rely on heavily, encourages public engagement.

“Public engagement is necessary not only to ensure the legitimacy of the CSC (crisis standards of care) planning process and guidelines, but also to achieve the best possible results in the event of a catastrophic disaster,” the 2012 guidance says, adding that an engagement process will inform members of the community about the standards and their implementation.

Engaging all communities, including those who are vulnerable in the proposed guidelines, concerns Al Achkar and several advocacy groups in the state.

“Are we having sufficient community engagement? That’s the crux where the conversation would be,” Al Achkar said.

The Department of Health did not provide further details or interviews about where in the planning process they are with the guidelines, but a spokeswoman said the department could have more details this week.

So far, the plans have not been discussed “externally,” the Seattle Times reported.

Next steps

Disability Rights Washington has a seat at the table as of last Thursday, Carlson said, noting that the governor’s office and the Department of Health have been receptive to their concerns.

“We are heartened and hopeful we will come up with a solution, because what we’ve heard very clearly is that they appreciate us pointing out this language and do not want to discriminate against people with disabilities or any people. But of course it all comes down to the details,” Carlson said. “So we’re in talks on how to come up with new language that will accomplish the needs of the system to allocate resources but won’t do that in a way that discriminates.”

Carlson said it is important to engage communities that could be impacted if these plans are implemented, including people with disabilities, older people and people of color.

Carlson expects Disability Rights Washington to provide input on the guidelines early this week.

Ultimately, everyone agrees the best-case scenario is to never require the crisis standards of care, with hospitals able to treat COVID-19 patients without rationing ventilators.

And with Gov. Jay Inslee extending his “Stay Home, Stay Healthy” order until May, health officials are hoping social distancing measures will keep hospital capacities at operable levels, eliminating the need to make crisis-care decisions.

May, the WSU professor, emphasized that the community has the power to collectively prevent health care providers from needing to make such drastic decisions.

“I think it’s important for people to realize that even if they think they are at low-risk and are at low-risk, the dangers they can pose to others by not practicing social distancing is very important to remember,” May said.

Such precautions can help protect “the most vulnerable among us,” he added. “That’s where the ethics in social responsibility comes in.”

Arielle Dreher's reporting for The Spokesman-Review is primarily funded by the Smith-Barbieri Progressive Fund, with additional support from Report for America and members of the Spokane community. These stories can be republished by other organizations for free under a Creative Commons license. For more information on this, please contact our newspaper’s managing editor.