Skip to main content

Table 2 Key issues discussed related to end-of-life palliative care for patients infected with EVD in Guinea

From: Dying in honour: experiences of end-of-life palliative care during the 2013–2016 Ebola outbreak in Guinea

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