Mason DJ. Lessons From COVID-19 About Rationing Care. JAMA Health Forum. Published online September 24, 2020. doi:10.1001/jamahealthforum.2020.1207
One day last March, my 74-year-old neighbor in New York City, Gail Lennstrom, called me in distress. Italy’s health care system had been forced to triage patients with coronavirus disease 2019 (COVID-19) with some receiving little, if any, care. Washington State was becoming the epicenter for US cases, and media reports noted that state officials were discussing triage scenarios. Lennstrom was scared. “I don’t fear death,” she told me. “I am terrified of dying alone, unable to breathe.”
A September 2, 2020, news story by ProPublica underscored the need for states and localities to have clear plans for triaging patients if hospitals became full during a COVID-19 surge. Nationally, only 4% of patients aged 85 years or older with COVID-19 died at home, but the rate was 17% in New Orleans, Louisiana. Family members of those who died in New Orleans said the patients presented at the hospital and were discharged home on hospice, reportedly because the hospital was full. Eight families—all of them Black—reported feeling pressured by the hospital to accept home hospice. Some said they received no training or preparation for symptom management at home and were denied personal protective equipment (PPE).
According to the US Centers for Disease Control and Prevention, as of September 22, 2020, there were 6 825 697 COVID-19 cases in the US, with a hospitalization rate of 170.4 per 100 000 population, 199 462 deaths, and a case fatality rate of 3%. Predictions of a winter surge if no safe and effective vaccine is available for mass distribution suggest that health care systems and governments need to prepare once again for making decisions about who gets ventilators and other scarce resources. Experiences with COVID-19 in New York City and Washington State can guide this preparation, including for the next pandemic.
When cases began to surge in New York City last spring, the Department of Geriatrics and Palliative Care at the Icahn School of Medicine at Mount Sinai Medical Center (MSMC) worked to set up 2 groups to consider resource allocation, one considering legal and ethical issues and the other focusing on anticipating what the clinical needs would be. Emily Chai, MD, vice chair of inpatient geriatrics and palliative care services, led the department’s effort on anticipating what the clinical needs would be.
Because MSMC’s palliative care is a 9-to-5 service, Chai said in an interview that her group created a telephone service available 24 hours/day and 7 days/week that clinicians could call to get advice about symptom management and conversations about end-of-life preferences. Calls stopped as COVID-19 patients overwhelmed the emergency department. The team of palliative care specialists (including fellows and residents in other specialties who received a virtual crash course in palliative care) embedded in the emergency departments and intensive care units (ICUs). The team worked to identify each patient’s decision maker for discussions regarding advance care preferences, to determine whether intensive care was possible and wanted, and to clarify resuscitation orders.
Physicians from other states volunteered their time by phone to provide care with the treating team. These palliative care clinicians were oriented on MSMC processes and procedures for decisions about care and the state’s regulations on resuscitation. If intensive care was not wanted, the patient was moved to the palliative care unit for comfort care. Donated iPads enabled these conversations to happen at the patient’s bedside and with family when possible.
Chai’s service also worked with their counterparts in outpatient geriatrics to ask patients proactively what they would want if they became seriously ill with COVID-19. Many wanted to stay home, which led to expansion of the home palliative care program. Care or comfort packets that included medications and syringes for symptom management were delivered to the patient and family with PPE and instructions, including on how to call for help.
Chai noted one of the most important factors in ensuring patients got the care they needed and wanted was transparency by the health care system. Hospital administrators provided daily updates on availability of ICU beds and other resources so her team could anticipate the need for triage. The team advocated for anyone to get an ICU bed if one was needed, wanted, and available.
New York Governor Andrew Cuomo’s declaration of a state of emergency supported the team’s work, Chai said, because it “loosened regulations and allowed volunteer physicians to be credentialed in New York State and have access to medical records, and so we had protections for them while we were expanding our reach and services.”
Preventing hospitals from reaching capacity and triaging ventilator allocation requires a local and state emergency response plan. As COVID-19 challenged hospital capacity and the state’s emergency preparedness, nurse leaders at the Washington State Hospital Association (WSHA), the WSHA’s and Washington State Medical Association’s advance care planning initiative Honoring Choices Pacific Northwest, and the Washington State Health Care Authority worked with a multidisciplinary, multiagency team to keep hospitals from having to implement triaging procedures and individual clinicians from having to decide who would get a ventilator.
The state had already partnered with the Northwest Healthcare Response Network (NWHRN) to form a disaster clinical advisory committee that developed a scarce resource allocation plan for disaster response. State coalitions had formed to respond to such emergencies. When a hospital east of Seattle got the first patients from nursing homes in King County, Washington, the state activated its disaster plan.
The NWHRN established a Regional COVID-19 Coordination Center (RC3) to “balance patient placement and transport to individual or multiple hospitals with sufficient capacity in order not to strain the resources of any single hospital or small group of hospitals.” One decision to transport ventilators rather than patients among hospitals whenever possible freed up ambulances needed for essential patient transport for all conditions. The RC3 also ensured that patients transferred from nursing homes did not go to a single hospital.
A working group of physicians, nurses, and social workers focused on crisis standards of care for allocating scarce resources for COVID-19 patients, “with the aim of never having to use them,” said Sue Bergmann, MBA, a nurse and senior director for Honoring Choices Pacific Northwest, in an interview. They developed a plan to ensure that individual clinicians would not have to decide who would get a bed or a ventilator:
Regional coordinating triage teams had a sophisticated database of available beds and ventilators for every hospital in the region.
Hospitals submitted real-time data on beds, ventilators, and PPE to the database daily.
Patient triage would occur based on objective criteria not demographics.
An algorithm provided guidance to ensure that patients with worsening conditions who could not get a ventilator or did not want intensive care could receive palliative care.
Darcy Jaffe, MN, ARNP, senior vice president for quality and safety at the WSHA, noted in an interview that when a hospital in Yakima County, Washington, reported it was nearing capacity, the RC3 was contacted to assist in transferring patients to other hospitals. The key to success was the agreement from all hospitals in the state to accept transfers from the RC3.
Before COVID-19, the Honoring Choices initiative resulted in individuals, communities, and clinicians becoming more comfortable with having conversations about advanced care planning. “By shifting the focus to individual goals and values, aggressive care”—often the default in health care—“is not always the chosen path, thereby naturally freeing up scarce resources during this pandemic,” said Bergmann. In addition, the WSHA advocated and established visitation standards for allowing family members to be with patients who became acutely ill or near death.
State and national leadership is needed “to make sure resources are available and allocated optimally,” Jaffe noted. Emergency preparedness, including written plans and established partnerships among private and public organizations with clear lines of authority and responsibility, must occur at the hospital, community, regional, state, and national levels and be tested in mock emergency drills.
Yet in severe crisis, the best-laid plans can fall short. All people entering the health care system should have advance care plans or directives in place. Plus, all clinicians—not just those in palliative care—need guidance on having difficult conversations about end-of-life preferences, and not just in a crisis that requires allocating scarce resources for care. Hospital visitation policies and state guidance on these must be part of the emergency planning. Planetree International has provided guidelines for thoughtful family presence policies.
The US health care system prioritizes acute and intensive care at the expense of supporting people to die with respect, comfort, and the love of family and friends. Although states can offer policies that foster more accessible palliative and end-of-life care, frontline clinicians may need to advocate, as Chai did, for supporting family caregivers to provide the last hours of care to their loved ones with the resources they need to do so.
Corresponding Author: Diana J. Mason, PhD, RN, Center for Health Policy and Media Engagement, George Washington University School of Nursing, 1919 Pennsylvania Ave NW, Ste 500, Washington, DC 20006 (firstname.lastname@example.org).
Conflict of Interest Disclosures: None reported.
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Diana J. Mason, PhD, RN Diana J. Mason, PhD, RN, is Senior Policy Service Professor for the Center for Health Policy and Media Engagement at George Washington University School of Nursing in Washington DC. She is Professor Emerita and Co-Director of the Center...