by Laura Guidry-Grimes, PhD and Katie Savin, MSW
The COVID-19 pandemic has led to intense conversations about ventilator allocation and reallocation during a crisis standard of care (CSC). The possibility of reallocating ventilators through a triage process is a source of profound concern for people who rely on personal ventilators (PVs) in their everyday life. Alice Wong, a disability activist and PV user, explains this concern: “Were I to contract coronavirus, I imagine a doctor might read my chart, look at me, and think I’m a waste of their efforts and precious resources that never should have been in shortage to begin with. He might even take my ventilator for other patients who have a better shot at survival than me.” Bioethicists, health care professionals, and public agencies must pay attention to this concern and clarify promptly: Are PVs part of the reallocation pool with COVID-19, or not? Should they be, or not? We argue that PVs should be protected in all cases and that triage protocols should be immediately clarified to demonstrate such protection.
For the purpose of this discussion, PVs refer to ventilators that individuals use in their homes, whether that be private homes in a community or in long-term care environments such as group homes and nursing homes. Their financial relationship to PVs may differ – e.g. people may rent, borrow, or own them, and this relationship is likely mediated by health insurance. Still, we argue that the nature of the financial relationship is immaterial to the personal and intimate sense of ownership that a long-time ventilator user experiences. When a person’s life depends on having a ventilator present at their side, the PV may be incorporated into their bodily representation and sense of bodily ownership and control. In fact, research has demonstrated that the brain adapts to incorporate wheelchairs and other assistive devices into the perception of one’s body and personal space in relationship to the environment. An implication of this research is that taking away someone’s PV is a direct assault on their bodily integrity—it is akin to taking away a part of their physical body, whether a vital organ or limb. This is important to appreciate the terror wrought from the suggestion that PVs could be taken away in a triage process.
Triage protocols usually focus on ventilators within the hospital, not those outside in the community. Yet there has been debate, described in the 2009 Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations by the Institute of Medicine (now National Academy of Medicine), about how chronic use ventilators should factor into triage decisions during a public health disaster (see pg. 34 ff). Last month in The New York Times, Ari Ne’eman claimed that the 2015 New York triage guidelines would “permit hospitals to take away ventilators from those who use them on an ongoing basis in the community or at a long-term care facility if they seek hospital care.” Joseph Fins, who served on the Task Force responsible for these guidelines, has refuted this characterization of the PV reallocation process, though their exchange underscores the importance of clarity and transparency.
Here we offer an overview of potential scenarios for PV reallocation during the pandemic as well as the ethical considerations each presents:
Scenario 1: Local authorities could ask chronic care facilities to hand over PVs that could shore up dire shortages. This acquisition could focus on excess ventilators, i.e., those not in use. Alternatively, all of the PVs in these facilities could be considered part of the allocation/reallocation pool, even subjecting residents of chronic care facilities to a triage process.
- Whether “seizing” excess PVs is ethically permissible would depend on whether this would place undue burden on care facilities. Facilities will likely need those PVs for new residents (which causes a discharge problem for hospitals), and they may not be able to replace faulty PVs (creating a precarious threat to current PV users in the facility). A reciprocity agreement could help mitigate these concerns.
- Making all PVs in care facilities part of the reallocation pool has long been considered ethically impermissible for several reasons. The 2009 IOM/NAM report points out that it would require an unacceptable role reversal for facility caregivers and would cause brutal and unjust harm to persons with disabilities. Fins emphasizes this in his recent essay: “This approach fails to follow the ethical principle of duty to care and could be construed as taking advantage of a very vulnerable population.”
Scenario 2: Whenever a patient comes into the hospital with their PV, the patient might no longer be allowed to “lay claim” to that PV. Instead, it becomes part of the allocation pool for the public good, and the patient might not have their PV returned to them.
- Objections to any such policy are justified. This would be akin to seizing someone’s vital organ for public use. This leaves PV users little choice but to avoid the hospital at all costs, especially if the triage criteria mean that they might not receive ventilator support during their hospitalization. Furthermore, this scenario would likely cause enormous moral distress for clinicians. To our knowledge, no hospital is considering commandeering PVs, even under CSC. Given the immense fear surrounding this possibility, hospitals should immediately allay these concerns through policies that explicitly eliminate this possibility.
Scenario 3: PV users could be admitted to the hospital. Hospital-based health care workers are generally not trained to use home ventilator equipment, so they may want to switch out the PV for a hospital ventilator. The hospital’s ventilator may be functionally the same as the PV, and the patient’s respiratory support is adequately provided by either the PV or the hospital vent.
- The patient should be consulted about their preferences regarding switching out vents in this scenario, given pervasive fears about vent reallocation under CSC. Especially if the type of vent in question is scarce, the default should be to work with the patient’s PV. If a patient’s needs are best served by having their own caregiver at the hospital, this should be accommodated to the extent possible.
Scenario 4: PV users could be admitted to the hospital and develop acute respiratory distress syndrome (ARDS) from COVID-19 or another condition. In this scenario, the medical team would recommend switching to a ventilator capable of providing increased support (with COVID-19, oxygenation or precise high FiO2 is a central concern). Such a patient would be subject to the same triage process as anyone else for the ICU-level ventilator — so they may or may not receive the needed vent in the end.
- How likely this scenario is will depend on a) whether the PV really cannot provide the needed support and b) how close the hospital is to CSC. Long-term ventilator users often have specialized expertise in how to adjust their PVs for changing needs, so healthcare professionals should partner with these patients and share their own expertise as much as possible early in admission. If the triage criteria are such that the patient might not receive the ICU vent, this may or may not be equitable allocation (depending on the criteria and one’s conception of equity, which we explore here)
As physicians and scientists have more time and data points to understand the trajectory of the novel coronavirus, they may determine that they can provide more and better care without relying so heavily on ventilators. While less-invasive methods (such as BiPAP and CPAP) may aerosolize secretions and pose risk to health care workers and other patients, high-flow nasal cannula could be as effective as intubation and mechanical ventilation yet without the many harmful side effects from long-term intubation. Yet, ventilators have become a focal point of resource triage debates and advocacy and have taken on symbolic meaning as public discourse has engaged in a deservingness framework over ventilator allocation. The task for public health messaging is to reframe the meaning of hospital ventilators as one method of many for caring and respecting patients and delivering high-quality care in nonideal circumstances. There are many challenges facing disabled people during this pandemic, and there will be many challenges when the world starts to recover.
In summary, as health care systems strive to form productive partnerships with the disability community and deliver equitable care for patient populations at large, they need to protect the bodily integrity of patients who use PVs and clarify their plans for PV reallocation on that basis.
Acknowledgements
We are very grateful to feedback from Joel Michael Reynolds, PhD and Jack Chase, MD on an earlier draft. This post also benefited from conversations with other clinical colleagues, including respiratory therapists.