Palliative Care in Ebola

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Palliative Care in Ebola CHALLENGES IN DELIVERY AND EXPERIENCES FROM THE CURRENT OUTBREAK

Background Ebola: filovirus from the family filoviridae Named after the Ebola River in DRC (then Zaire) where first cases were described in 1976 5 species (4 known to cause disease in humans) - Zaire Ebolavirus - Sudan Ebolavirus - Bundibugyo Ebolavirus - Täi Forest Ebolavirus (previously Cotê d Ivoire) - Reston Ebolavirus Animal reservoir likely Megachiroptera fruit bat Thought to spread to humans through the handling or consumption of infected bush meat Human to human spread through direct contact with infected bodily fluids

Current West Africa Outbreak Began in Southwest Guinea in March 2014 Declared a health emergency of international concern by the WHO in August 2014 Zaire Ebolavirus - associated CFR 50-90% - incubation period 2-21 days Cases reported in 10 countries - 3 countries still reporting cases Death toll currently 11295 www.cdc.gov (accessed 03/08/15)

Signs and Symptoms - Fever (87% of patients) - Myalgia and arthralgia - Fatigue - Uveitis - Rash - Abdominal pain - Diarrhoea and vomiting (67% of patients) - Hiccups - Shock/organ damage - Confusion - Seizure - Haemorrhage (18% of patients) Early/mild Late/severe

Kerry Town ETC Opened in November 2014, Western Area, Sierra Leone 80 bed facility run by Save the Children Patients admitted from holding centres with EVD confirmed on RT-PCR Onsite laboratory services run by PHE Patients staged on admission: - Stage 1: Mild/Early disease - Stage 2: Gastrointestinal Involvement - Stage 3: Late/complicated disease Supportive treatment including IV fluids, antibiotics, antimalarials, antipyretics, analgesics, antiemetics and anxyolytics administered as required

Patient demographics 8 th December 2014 9 th January 2015 52.5% were male Average age was 25.9 years Case fatality rate was 36.7% - mean age of those who died was 30.3 years. 19.5% of fatal cases were under 16 years of age. The mean time from symptom onset to death was 9.1 days. The mean time from admission to death was 3.7 days. Higher disease stage on admission was strongly associated with mortality (66.7%, 32.7% and 25.8% for stage 3,2 and 1 respectively) as was low cycle time on RT-PCR (65.2% vs 13.6%) Biochemical and haematological markers associated with mortality?

Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Diagnosis of dying Symptom relief Psychological, emotional and spiritual support Bereavement support for families

Challenges to End of Life Care in Ebola Infection control precautions - Healthcare workers wearing PPE Barriers to communication Limited time with patients Non continuous healthcare presence on the wards - Patient isolation Fear of dying alone Families unable to see patient Lack of patient support

Challenges to End of Life Care in Ebola Continuing infectivity in death - Restrictions on traditional burial practices - Deceased patient hidden in body bag Medication storage - Glass vials - Controlled medications Delayed diagnosis of dying - Patients DOA - Unnecessary interventions

Lessons Learned - Palliative care should form a fundamental part of a response to any outbreak of an incurable disease - Palliative care delivery in an Ebola setting is challenging - Further research required to identify mortality markers to help better identify terminal patients - Staffing levels of an ETC should allow for almost continuous clinician presence on isolation wards - Medications should be stored in plastic containers where ever possible - Attention should be drawn to emotional, psychological and spiritual support for patients and families.

Thank you to all the staff who helped in the development and running of Kerry Town ETC Any questions? Dr Victoria Knott V-knott@doctors.org.uk