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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