The Ethic of Care, Disability, and Rehabilitation During the Coronavirus Disease 2019 Pandemic

Abstract

With great interest we read the editorial by William D. Graf et al.1Graf W.D. Epstein L.G. Pearl P.L. Practical bioethics during the exceptional circumstances of a pandemic.Pediatr Neurol. 2020; 108: 3-4Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar on practical bioethics during the exceptional circumstances of a pandemic, which prompted deep reflection on the ethics of care, disability (specifically childhood disability), and rehabilitation in a global context where the novel coronavirus disease 2019 (COVID-19) emergency is the biggest challenge for human rights and health care systems. The outbreak of COVID-19 and its propagation have the characteristics of potentially traumatic events.2Onyeaka H.K. Zahid S. Patel R.S. The unaddressed behavioral health aspect during the coronavirus pandemic.Cureus. 2020; 12: e7351PubMed Google Scholar Although response to stressful events undoubtedly depends on several subjective variables, the more the event is sudden and unpredictable and impactful an individual’s control skills, the more stressful it becomes. Such events require a readjustment of management strategies and priorities in any field. One of the most problematic aspects—including the emotional impact on people—is access to care in what the Italian College of Anaesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI) called a “disaster medicine” scenario,3Riccioni L. Bertolini G. Giannini A. et al.Raccomandazioni di etica clinica per l’ammissione a trattamenti intensivi e per la loro sospensione, in condizioni eccezionali di squilibrio tra necessità e risorse disponibili.Recenti Prog Med. 2020; 111: 207-211PubMed Google Scholar which raises the issue of emotionally burdensome decisions for all involved professionals. Emotionally burdensome decisions concern, first and foremost, criteria for intensive care access. International algorithms, guidelines, and so forth have been developed to help practitioners decide whom to treat when available resources are insufficient.4Trabacca A. Russo L. Covid-19 and child disabilities: whom to protect and how.Eur J Phys Rehabil Med. 2020; 56: 372-373Crossref PubMed Scopus (11) Google Scholar In a domino-like fashion, this applies to rehabilitation and care for people with disabilities, raising the moral dilemma5Manfrinati A. Lotto L. Sarlo M. Palomba D. Rumiati R. Moral dilemmas and moral principles: when emotion and cognition unite.Cogn Emot. 2013; 27: 1276-1291Crossref PubMed Scopus (30) Google Scholar of whether to reduce or limit access to services or provide rehabilitation only in emergency situations. But how is “emergency” defined here? Is it related to the “here and now,” as a way to reduce an even greater risk? Or should it be seen in a future perspective, contributing to preserve achieved skills and prevent reduced activity and participation? Also, does it encompass rehabilitation for people with disability secondary to neurodegenerative, neuromuscular, or rare diseases? We can perhaps attempt some answers by focusing on some keywords.(1)Disability: do we still believe, even at a time like this, that disability is the expression of an imbalance of subjective, environmental, and relational variables?(2)Rehabilitation: does continued rehabilitation help people with disability develop skills improving their participating in daily life activities and socialization?(3)Continuity of care: looking into the future, do we think that stopping rehabilitation may have consequences?(4)Significance of urgency: can an intervention aimed at compensating, improving, and—in some cases—restoring functions be considered urgent? Most likely so, if at such potentially traumatic times, we believe that well-being, adjustment, and participation of people with disabilities depend on the environment in the broadest sense and consider rehabilitation necessary to promote activity and participation, and we believe that we are called on to ensure continuity of care today to support functional recovery tomorrow. In light of this, our focus should shift from a whether perspective to how to make this intervention possible. We should make sure to provide vulnerable people with the rehabilitation they need and adequate protection from COVID-19. Ours is an attempt at drawing attention to, and finding an answer to, a crucial issue but it is certainly not the only one. We believe that sharing diverse experiences can better inform our decisions and work. Reply to Russo and TrabaccaPediatric NeurologyVol. 112PreviewWe thank Drs. Trabacca and Russo for their reflection and comments about childhood disability and the ethics of care during the exceptional circumstances of a viral pandemic.1 We recognize the many social, educational, environmental, and health care disruptions that coronavirus disease 2019 (COVID-19) has imposed on the routines of all children. Such disruptions are often disproportionately stressful to the families of children with neurodevelopmental and neuromuscular disabilities, whose “nonessential” community-based support services are restricted because of the imperatives of physical distancing. Full-Text PDF