key: cord-0930195-tvpeoeao authors: Huang, Donna; Siddiqui, Sameer A.; Touchett, Hilary N.; Skelton, Felicia title: Pro Protecting the most vulnerable among us: access to care and resources for persons with disability from spinal cord injury during the COVID‐19 pandemic date: 2021-02-15 journal: PM R DOI: 10.1002/pmrj.12576 sha: b7afcd672d72b1e4fd5baa98094f4539ec0f6bb5 doc_id: 930195 cord_uid: tvpeoeao nan In 2019, the SARS-CoV2 virus emerged, leading to the coronavirus disease 19 pandemic. Individuals with spinal cord injuries and disorders (SCI/D) are impacted directly and indirectly by the COVID-19 pandemic, as they are vulnerable to pulmonary infections and social distancing may limit their access to caregivers, supplies, and equipment. In an international survey of healthcare providers caring for SCI/D individuals, participants described patient-reported concerns regarding the risk of severe infection, fragility of the caregiver network, inability to access routine supplies, and inability to access appropriate testing. 1 Caregivers for SCI/D individuals are often family members who take on these roles without compensation. With healthcare systems often being fragmented and difficult to navigate, caregivers are faced with difficult choices with limited resources. An increasing proportion of caregivers reported difficulty coordinating care across multiple providers, and about a quarter reported difficulty accessing affordable services in their care recipient's geographical location. 2 In addition to concerns of tenuous caregiver support, allocation of critical resources such as ventilators is a concern for SCI/D individuals. From the outset of the pandemic, disability advocates have raised concerns regarding the widening of existing healthcare disparities among the disabled population during COVID-19. 3 Outside of the Veterans' Health Administration (VHA), there are no national criteria for the allocation of scarce resources such as intensive care unit (ICU) beds and ventilators during a pandemic. As such, individual institutions and local governments have formulated their own policies, some of which may adversely impact persons living with disabilities. 4 The COVID-19 pandemic has strained an already overburdened system. Here we present three vignettes from a SCI/D center in a Veterans' Affairs (VA) hospital. With these vignettes, we highlight some of the specific challenges our patients have faced maintaining steady caregiver support as well as concerns about resource rationing, while offering considerations for those caring for this vulnerable population. Veteran A is a 68-year-old male with T10 ASIA Impairment Scale (AIS) A spinal cord injury (SCI) who only allows a sole caregiver to perform bowel care. As a part of the SCI center's COVID-19 response, the SCI home care team has been reaching out to veterans to facilitate contingency planning. Veteran A stated that the only way he would allow someone else to perform his bowel care was if his caregiver was admitted to the hospital. The veteran was encouraged to continue to consider back-up plans should his caregiver become unable to provide care. Ongoing support from the SCI home care team was offered. Veteran B is a 45-year-old male with C1 AIS B SCI who requires mechanical ventilation via tracheostomy. He resided in rural Maryland but decided to relocate to a city closer to his support system in April 2020. During an inter-VA facility conference call, the urgency of a cross-country move was questioned given the ongoing pandemic. Veteran B cited concerns of the scarcity and reliability of caregivers in his area due to the pandemic and the desire to be closer to his caregiver/significant other as the reasons "the move has to happen now!" Using video visits, a "warm" handoff was provided from his original care team to the receiving team, including ensuring his new residence was accessible. He completed the move successfully, including resumption of home health and skilled nursing services upon arrival. Veteran C is a 68-year-old male with C4 AIS B SCI and severe anoxic brain injury complicated by ventilator-dependent chronic respiratory failure. During the COVID-19 pandemic, his family member expressed concern to the patient's SCI physician that his ventilator would be withdrawn if the hospital's resources became overburdened by a surge of COVID-19 cases. These vignettes highlight challenges to access to caregiver support and allocation of lifesustaining resources under crisis conditions for SCI/D individuals. In Veteran A's case, the family could not identify an alternative plan for bowel management if the primary caregiver were to become ill, highlighting that for many veterans, in-home care is largely dependent on a single family member. Meanwhile, Veteran B felt compelled to undertake a cross-country move, with its risks in the midst of a pandemic, due to concern for a shortage of caregivers in his location. Veteran C's family member expressed concerns that the veteran's ventilator would be withdrawn if the supply of ventilators became constrained due to the pandemic. During the COVID-19 pandemic, assessment of capacity for serious illness care in the home should be implemented. 5 Veteran's A's case is an example of this assessment. The SCI home care team in this center has been performing standardized needs assessments, including identifying potential vulnerabilities in caregiver supply and addressing them before any shortfall occurs. Identifying vulnerable patients and formulating disaster-preparedness protocols has been well-established in this center, as it is located in a hurricane-prone area. This existing infrastructure serves as a foundation for tailoring COVID-19-specific risk assessment for SCI/D individuals. There has been a growing reliance on a lay workforce of family caregivers as the population ages and complex care has progressively transitioned to the home. 2 In a commentary on the effects of the COVID-19 pandemic on caregivers for palliative care patients, Kent et al highlight three major challenges that the pandemic has imposed that are relevant to the SCI population. 5 First, social distancing can exacerbate isolation, loneliness, and associated adverse health outcomes already experienced by caregivers and those they care for. 6 Second, caregivers may face increased financial stressors due to COVID-19. Third, caregivers face an unprecedented decision-making landscape. With regards to the first challenge, caregivers may be reluctant to seek help during the pandemic due to fears of having outsiders who could transmit the virus come into their homes. As for the second, approximately 61% of caregivers in the U.S. already experience some level of economic strain due to employment loss and out-of-pocket medical expenses. 7 The pandemic intensifies this burden as many family caregivers do not have jobs amenable to remote work. Additionally, caregivers may need to take on childcare and home-schooling responsibilities because of school closures, while continuing to fulfill work and caregiving responsibilities. Regarding the third challenge, access to routine health care, including primary care, disease surveillance, and home health, has been restricted during the pandemic. The need for visits may be questioned on the grounds of safety and goals of care. With the impact of stress on caregiver mental and physical health already posing an urgent public health issue 8 , the COVID-19 pandemic may intensify caregiver distress about whether they are making the right decisions for their care recipients. When considering priorities for supporting caregivers, caregiver access personal protective equipment (PPE) should be maintained. 9 SCI/D individuals frequently require hands-on assistance for personal care that requires PPE, most often gloves. Caregivers for SCI/D individuals are providing care to individuals at risk for severe pulmonary infections and are often doing so without direct supervision or formal training on COVID-19-specific precautions. Caregivers providing support to older individuals often tend to be elderly themselves 2 and are susceptible to higher mortality risk from COVID-19. Healthcare systems can support caregivers by providing guidance on appropriate PPE use. 5 Ensuring adequate PPE supply for community-dwelling SCI/D individuals is of tantamount importance not only for mitigating the risk of spread of COVID-19 but also for preventing secondary complications of SCI that could precipitate emergency department presentations and hospital admissions, increasing the risk of exposure to COVID-19. Recognizing the importance of adequate PPE in the SCI/D population, the VHA issued a memorandum indicating that SCI/D individuals and their caregivers were required to have continued access to appropriate PPE, including gloves, masks, gowns, and hand sanitizer, during the COVID-19 pandemic. 10 During a pandemic with rapidly-changing guidelines, updating caregivers on the latest recommendations is of utmost importance. Healthcare providers can support caregivers by providing access to current guidance from public health agencies as well as COVID-19 resources from reputable caregiving organizations. The VA has clinical COVID-19 guidance and caregiver-specific resources through its Caregiver Support Program 11 , and there are several non-VA based organizations that are compiling COVID-19 resources. During crisis conditions that cause a scarcity of life-sustaining resources, the prevailing ethical mandate in medicine shifts from maintaining patient autonomy to providing the greatest good to the greatest number of individuals while balancing respect for human dignity and fairness. 12 The VHA guidance mandates interdisciplinary teams appointed by facility leadership to make decisions regarding which patients receive scarce resources such as mechanical ventilation. The overarching criterion in the VA's approach to allocating scarce resources is based on clinical expectations of survivability as determined by Sequential Organ Failure Assessment (SOFA) scores. 15 Patients are triaged based on clinical exclusion criteria and illness severity into priority categories for receiving scarce resources. Within each category, resources are allocated on a first-come, first-served or lottery basis. Clear guidelines for reassessment are described as are recommendations for review, appeals, and communication regarding triage decisions. 14 This guidance provides a detailed description of the ethical framework under which resource allocation criteria are evaluated based on whether they supported VHA goals to stop or limit the spread of disease, reduce suffering and death, and/or sustain operations. Resource allocation criteria in the VHA guidance were also evaluated as to whether they were ethical, legal, politically feasible, and practical to implement. Another ethical framework for allocating scarce medical resources that has garnered attention during the pandemic has been the multi-principle approach of Douglas White and colleagues, originally published in the Annals of Internal Medicine in 2009. 12 This framework relies on three guiding principles: maximizing survival to hospital discharge, maximizing the number of life-years saved, and maximizing individuals' chances to live through life's various stages (also known as the fair innings principle). When considering maximizing survival to hospital discharge, similar to the VHA guidance, the White framework advocates the use of objective, transparent mortality prediction models, such as the SOFA score, that are uniformly applied to all patients. 12, 15 This approach avoids ethically irrelevant considerations such as race, socioeconomic status, or disability status, and balances the principle of efficiency with the egalitarian principle that all lives have value. A drawback is that models of short-term survival cannot be extrapolated beyond conditions for which they were validated. There is no evidence that any given mortality prediction model is more accurate than another; however, the SOFA score has the benefits of being easy to implement and requires relatively few laboratory tests. The utilitarian principle that all else equal, it is better to save more years of life than fewer underpins the second guiding principle of maximizing life-years saved. This principle balances the patient's medical need (i.e., prognosis without treatment) with the expected duration of survival after treatment. This principle can be applied to all patients, not just those with extremely limited life expectancies, therefore promoting consistency and fairness. 12 With the fair innings principle, the goal is to give each individual an equal opportunity to live through the various phases of life. Though on its surface this may seem to disadvantage the elderly, White et al have argued that it is inherently egalitarian in that it seeks to give all individuals the opportunity to live a normal life span. Furthermore, this approach applies the principle of equality to an individuals' entire lifetime rather than the current conditions. 12 White et al's model combines its three guiding principles in a weighted score that triages individuals to priority levels. While a multi-principle allocation strategy is more complex, it attempts to more comprehensively reflect diverse moral considerations relevant to difficult decisions. As in the case of the VHA guidance, use of a multi-principle approach avoids the need to categorically deny treatment to certain groups. Regardless of the specific approach used, ethical guidance for resource allocation benefits from input from multiple stakeholders, transparency with regards to guiding principles and circumstances under which rationing frameworks are implemented, and equitable application to all individuals. The challenges faced by Veterans A and B and their families in the vignettes demonstrate some of the ways in which the COVID-19 pandemic has strained a fragile caregiver network that is vital to the well-being and independence of SCI/D individuals, while Veteran C's vignette revealed how COVID-19 threatened the availability of life-sustaining resources. The VA SCI/D system provides a more robust safety net than what is often available to non-veterans given it is an interconnected healthcare system that has a precedent of providing comprehensive, longitudinal care to those with SCI/D. Nonetheless, the pandemic has revealed vulnerabilities. Ongoing efforts to address these challenges should emphasize preventing unanticipated medical illnesses including COVID-19 exposure, providing risk assessment, contingency planning, and caregiver support as well as adopting robust and equitable frameworks for resource allocation that avoid categorical discrimination against specific patient groups, with the aim of empowering and protecting individuals with SCI/D and their caregivers during times of crisis. COVID-19 and spinal cord injury and disease: results of an international survey Caregiving in the U.S. 2020: Executive Summary State policies may send people with disabilities to the back of the line for ventilators COVID-19 Medical Rationing The family caregiving crisis meets an actual pandemic The psychological impact of quarantine and how to reduce it: rapid review of the evidence Families Caring for An Aging America. www.nationalacademies.org/caregiving COVID-19 exposures and infection control among home care agencies COVID-19 Requirements for Providing Personal Protective Equipment (PPE) for Selected Home Health Care Services: Medical Foster Home, Caregiver Support Program, and Spinal Cord Injuries and Disorders Department of Veterans Affairs Caregiver Support Program Information for Caregivers During COVID-19 Tip Sheet Annals of Internal Medicine Who Should Receive Life Support During a Public Health Emergency ? Department of Health and Human Services Office for Civil Rights. Civil Rights, HIPAA, and the Coronavirus Disease The Pandemic Influenza Ethics Initiative Work Group of the Veterans Health Administration's National Center for Ethics in Health Care. Meeting the Challenge of Pandemic Influenza: Ethical Guidance for Leaders and Health Care Professionals in the Veterans Health Administration The SOFA (Sepsis-related Organ Failure Assessment) score to describe organ dysfunction/failure. On behalf of the Working Group on Sepsis-Related Problems of the European Society of Intensive Care Medicine