Palliation in a pandemic: the human cost of achieving the greater good

Abstract

The onset of the COVID-19 pandemic in early 2020 created major challenges for specialist palliative care services. Significant ethical challenges have arisen in practising a holistic approach to patient and family care, while observing local and national health care policy in the face of a global pandemic. This report highlights the challenges that arose for a patient, family members and staff consequent on COVID-related visiting restrictions. An integrated specialist palliative care inpatient unit and elderly care facility in Ireland. A 50-year-old married mother of three teenagers and one 12-year-old child with advanced amyotrophic lateral sclerosis is described. The patient could not speak or move her limbs. She communicated using an eye gaze device. She had previously declined enteral feeding, and noninvasive ventilatory support was not tolerated. Her husband was particularly attentive and remarkably intuitive in identifying her unspoken needs. At the start of the pandemic, visiting was severely curtailed in line with national policies. The change in visiting policies caused enormous distress to the patient, her family and to the staff members. IT devices were of limited benefit. The current pandemic has had a significant impact on families and health care professionals in which balancing individual need and traditional freedoms against the wider societal need are necessary in limiting the spread of COVID-19.