Development and Use of Symptom Management Plans in Guiding Care of Children Referred to a Tertiary Palliative Care Service

ABSTRACT

Background The prevalence of children living with life limiting conditions is increasing. These children often require tertiary palliative care input for management of symptoms specialist palliative care teams develop individual symptom management plans and/or syringe driver plans (SMP/SDP) to guide management of pain and distressing symptoms. There is no national guidance on how and when such plans should be used and their implementation varies across the country. Objectives Identify the development and use of SMP/SDP in management of symptoms in children referred to a tertiary palliative care service with particular attention medications used at the end of life (EoL). Methods Seven month (February-August 2020) prospective, comparative study of all children referred to a tertiary palliative care service including recording of all referrals with number of SMP/SDP written type and number of medications prescribed in the SMP/SDP and used by the patient at the EoL. Results 102 patients were referred to the tertiary palliative care service. 87 SMPs were written for a total of 58 patients. 43 patients had a SMP/SDP at the EoL. Median medications included in a SMP was 13 (range 3-32) with 2 medications (range 0-14) used at EoL. Median number prescribed in SDPs was 6 (range 2-10) with 2 drugs used at EoL (range 0-7). The most common medications prescribed and used were opiates and midazolam. The most common symptoms were pain, breathlessness nausea vomiting and constipation. Conclusions SMPs/SDPs are written for a significant number of patients referred to palliative care. Often only a few drugs from the SMP/SDP were required at the end of life particularly opiates and midazolam. Further study is needed to understand the purpose use and impact of SMP/SDP on symptom control particularly at the EoL. Of note this project took place during the coronavirus pandemic, and hence bears repeating when circumstance change.