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Table 3 Recommendations drawn from findings

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

Recommendations

Description

Integrate palliative care with treatment focused, supportive care

In EVD, palliative and treatment-focused, supportive care are inseparable. These should be approached by HCPs as integrated aspects of all care

Ensure appropriate palliative medications and supplies are available

Plan for and aim to maintain adequate and appropriate medications and supplies to alleviate patient pain and suffering

Provide psychosocial supports to HCPs

Anticipate and ensure interventions/supports available to HCPs working in the high stress ETC environment

Enhance staff training and support where needed

HCP training in a number of areas is recommended: including training in palliative care/trauma informed care, opioid usage as part of a palliative approach, IV use, and critical/difficult communication

Consider the spatial architecture of ETCs

Maintain a functional and safe environment (ETC) while considering the proximity between patients so witnessing extreme suffering and death is minimized

Increase HCP numbers where possible

Increase HCP numbers for ETCs where possible, to increase time HCPs can be providing direct care, limit risks of patients dying alone, and alleviate pressure on individual HCPs

Prioritize hiring of local HCPs and their roles in guiding contextually appropriate care

Recognize that local HCPs familiar with the context of care delivery and local traditions are uniquely positioned to liase with patients and families to understand and help achieve care priorities and preferences

Plan for accompaniment of patients dying and at risk of dying

Accompaniment as death approaches is a moral imperative in many contexts, and, where absent, significantly increases suffering of patients, family, and HCPs. Given EVD’s high risk of mortality, ETC care delivery planning must include explicit strategies and sufficient staff to ensure the dying are accompanied

Explicitly discuss and determine harm vs. benefits of “truth” telling to patients

Recognize that in certain settings, some HCPs and family may wish to withhold information from a patient with the intention of reducing harm and improving survival chances for that individual. Where this is the case, rationales should be discussed openly in order to reach consensus where possible.

Facilitate wherever possible contact with patients and families

Provide cell phones loaded with credit to patients, should patients wish to communicate with family outside the ETC

Plan time and resources for HCP provision of updates via phone to family of patients

Where possible and the patient’s preference, encourage and help coordinate family visits, even if at a distance

Acknowledge and support fellow patients as caregivers

Actively engage and equip patients who are able in aspects of care provision during and after recovery.