Leading issues discussed | Description | |
---|---|---|
Main findings | Sub-findings | |
The emotional hardship of delivering care in a context of overwhelming loss of life | Frequency and number of deaths | Increasing number of deaths was psychologically taxing for HCPs and survivors |
Sickness and death of close relationships | HCPs and patients witnessed deaths and suffering of close relations, contributing to feelings of fear and devastation | |
Challenges to the delivery of care, stemming from the architectural, clinical and social conditions of care delivery | Architecture of the ETC | ETCs mostly at or beyond capacity and physical structure of the ETC caused patients to be in close proximity to the dying and the deceased. |
Absence of disease modifying treatment | Outside of experimental trials, there was no available treatment—all care was supportive care aimed at treating symptoms to maximize chance of survival | |
Prognostic uncertainty | Limited predictability of EVD infection outcomes, difficulty identifying patients likely to die | |
Social isolation of patients in the ETC | Limited HCP and family contact with patients due to contact precautions and PPE | |
Patient distrust and fear of HCPs | Some patients were convinced ETCs and HCPs were there to harm rather than help the patients leading to refusal of available care and additional suffering | |
Pain and symptom relief | Patient agitation distress | Patients’ agitation and inability to effectively address it could render administration of pain and symptom relief difficult |
HCP discomfort with opioids | HCPs seemed reluctant to use opioids even if available | |
HCP training | Some HCP had limited experience with IV and opioid use | |
Patient friendship and kinship bonds | Psycho-social and practical support provided between patients | Patients described support provided by fellow patients in the form of solidarity, encouragement and help with personal care tasks as a source of comfort |
Limited truth-telling | Possible? Therapeutic value of limited truth-telling | Limited truth-telling practised by some HCPs, patients towards fellow patients, and visiting relatives to preserve hope and, in participants’ interpretations, support recovery |
An ideal of “dying in honour”, sometimes achieved but also often unmet with ETCs | Dying without family | Dying “alone” interpreted as without loved ones (i.e., family) was described with anxiety and a key characteristic of what made the risk of dying in ETC horrible in the eyes of participants |
Dying completely alone | In overwhelmed ETCs, some patients died with even no HCP at their side, a situation that was described as unacceptable | |
Dying without customary post-mortem rituals | Some drew attention to the challenge in ETCs of enacting important customary rituals pre- and post-death, and the absence of such rituals as adding to family suffering |