First Steps: Integrating Palliative and End of Life Care in South Sudan

The Bentiu PoC is one of the largest UNMISS protected IDP camp (Internally Displaced People/Refugees) in South Sudan and host approx. 115000 people over the last years in temporary tents. After the several clashes in the region primarily Nuer came to seek a safe shelter since end 2013 and increased successively.

Written by Elizabeth Karman

Staff and clinical leaders at the Médecins Sans Frontiers (MSF) hospital in Bentiu, South Sudan have long recognized the need for palliative care. In 2021, with the visit of an expert implementer, hospital staff now have the training, guidelines, and documentation framework needed to practice palliative and end of life care in the humanitarian hospital setting.

The 136-bed MSF hospital in Bentiu, South Sudan serves the population of a large camp for displaced civilians. Advanced clinical presentation of diseases such as HIV and tuberculosis are frustratingly common in the adult medical wards, and mortality rates tend to be high. Local clinical and nursing staff often have little to no training in palliative care practices, and the use of pain treatments such as opioids has been rare.

To better understand local knowledge and attitudes about death and providing care at the end of life, MSF outreach staff members completed a brief anthropological assessment in July 2021. In it, community members expressed value for time spent caring and being with loved ones who are nearing death, alongside a hope for ‘miraculous’ recovery. Among local staff members, concerns centered on how to have conversations about end of life and poor medical prognoses while still respecting cultural and religious beliefs.

During the visit, the implementation team worked together to select the assessment tools and documentation formats for use in Bentiu. A decision was made to keep the focus on end-of-life care for the initial hospital implementation. The documentation formats chosen cue both the clinical and nursing staff to take certain actions, such as discussing the prognosis and plan of care with the patient and family/ caregivers, considering Do Not Attempt CPR status, and guiding the assessment of patients nearing the end of their life.

Feedback from training participants was mostly positive. Many clinicians expressed that this was a wholly “new” way of caring for patients. For some, this was seen as a positive shift, while others viewed it as challenging the way they were initially taught to practice. There was concern expressed by some local staff about ethical issues such as the cultural appropriateness of discussing that an illness may lead to death, as well as concerns about a perception of staff not “doing everything” in an attempt to save a life.
When ethical concerns like these came up during implementation, a slow approach which focused on prioritizing what the multidisciplinary team could agree on proved largely successful. All agreed that patients should be as free from pain and discomfort as possible, and the team of clinical, nursing, and counselling staff worked together to make this goal a reality.

Interestingly, several clinicians were pleasantly surprised by patients’ response to appropriate morphine dosing, noting that with morphine, patients often had increased activity levels, demonstrating the impact of good pain control, running contrary to what they had initially believed.

Throughout October and November 2021, over 25 nurses were trained using a simplified version of the initial implementation materials. Palliative and end of life care have been widely embraced by the nursing staff, who have expressed that using tools such as an end of life assessment and treatment checklist help guide them to provide individualized care.

Time limitations, especially in this basic, humanitarian hospital setting, have always been a challenge. The long-term goal of practicing effective palliative and end-of-life care in Bentiu will require staff to consistently take the time for effective communication, multidisciplinary planning, and truly patient-centered care. Normalizing these practices will require ongoing support, leadership, and technical advice. But with the first steps now taken, staff in Bentiu are seeing the value in not only “saving lives”, but also in “alleviating suffering.”

Elizabeth Karman, RN, BSN, MPH, is a nurse specializing in management, acute care, and public health. She has worked in humanitarian settings in Asia and Africa with various INGOs. Elizabeth is passionate about training health care staff for quality improvement in the context of patient-centered care.

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