Alone, the hardest part
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FROM THE INSIDE
Alone, the hardest part Martha A. Q. Curley1,2* , Elizabeth G. Broden3,4 and Elaine C. Meyer5,6 © 2020 Springer-Verlag GmbH Germany, part of Springer Nature
Of all the harrowing images of the COVID-19 pandemic, perhaps none is more heart-wrenching than that of a patient dying alone, without loved ones at their side, amidst chaos and fear. The pandemic has led to drastic changes in how we provide intensive and end-of-life care to patients and their families [1–3]. Age-old cultural and religious traditions surrounding death that comfort the dying and sustain the living, have also fallen victim to the pandemic. How can we exercise our duty to care while humanizing the dying experience under such extraordinary circumstances? Worried families, exercising social distancing, desperately seek information, reassurance, and opportunities to be with their loved ones. Front-line clinicians often feel unprepared and overwhelmed with these emotionally intense responsibilities yet try their best to provide impromptu virtual calls with family. These brief interludes offer the chance to utter what needs to be said, to affirm love, and to act as witness to unexpected grief. Clinicians experience extraordinary pressure multi-tasking care while holding mobile devices, listening to one-sided conversations. Although clinicians struggle with fatigue, trauma, and fear for their own safety; it is the dying alone befalling their patients that often breaks them. Drawing on our pediatric experiences, steeped in traditions of family-centered care [4], we suggest an alternative pathway. Parent presence, even during invasive procedures and resuscitation, is the norm [5]. Throughout hospitalization and sometimes during a child’s death, parents are helped to be present for their child in new and different ways. Nurses help parents transition from parent-of-a-well-child to parent-of-a-critically-ill-child *Correspondence: [email protected] 2 Family and Community Health, University of Pennsylvania School of Nursing, Claire M. Fagin Hall, Room 425, 418 Curie Boulevard, Philadelphia, PA 19104‑4217, USA Full author information is available at the end of the article
by providing knowledge, skills and support [6]. Witnessing the transformation of parents capable of providing comfort and care to their critically-ill and sometimes dying child is among the most rewarding aspects of pediatric practice. Facilitating human capacity is a core driver of professional satisfaction. There are reasons to justify limiting family access to patients with COVID-19. The disease is poorly understood [7], diagnostic testing has been unreliable [8], and personal protective equipment (PPE) has been in short supply [9]. The balance outlined in Table 1 will certainly change with the acquisition of new knowledge about SARS-CoV-2, its transmission, tenacity and resultant immunity. We believe that infection control, public health concerns and family-centered care can coexist and urge reconsideration of adult family member presence at the bedside of patients dur
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