Head and neck cancers frequently carry a poor prognosis and are commonly associated with complex medical needs and symptoms. Timing of referral to specialist palliative care teams (SPCTs) is challenging. We present the case of a 57-year-old woman with locally highly advanced head and neck cancer. The patient had highly complex medical needs including a tracheostomy to maintain airway patency, artificial feeds via jejunostomy and impaired communication due to hearing loss, tracheostomy and fatigue. She required support with advance care planning and complex symptom management of pain related to abdominal skin excoriation due to leakage of gastric contents; bleeding of necrotic tumour; anxiety and discomfort due to displacement of tracheostomy. Care by an integrated SPCT allowed smooth transition from hospital to community settings with smooth ongoing management despite highly complex needs. This complex symptom management included tracheostomy removal in the home towards the end of life.

Objectives To assess the role of simulation to teach ‘palliative care’ skills to the multidisciplinary team (MDT) within general paediatric and neonatal settings. Methods Five simulation sessions were undertaken. The themes were acute presentation of a patient with a deteriorating life-limiting condition with no advance care plan (ACP) in place and parents not wishing for escalation of treatment; putting wishes expressed in an ACP in place for a dying child; managing an expected death; putting an antenatal ACP into place at delivery; and withdrawal of life-sustaining respiratory support in an extremely preterm neonate. Simulations were attended by the MDT. Participants completed feedback rating enjoyment, organisation, quality and relevance of sessions, and likelihood of attending further paediatric palliative medicine (PPM) simulation sessions, alongside a 10-point confidence scale rating confidence in dealing with ‘palliative care’ scenarios and talking to families about death. Results Participants reported they enjoyed the sessions (mean score 4.5, range 1–5) and felt they were well organised (4.7/5, range 1–5) and of high quality (4.7/5, range 1–5). They felt sessions were relevant to their training (4.6/5, range 1–5) and that they would attend further simulation training in the area of PPM (mean 4.8/5, range 1–5). Confidence in managing PPM scenarios increased by a mean of 2.3 confidence points (range −1 to 5) and confidence in talking about death increased by a mean of 1.7 confidence points (range 0–5). Conclusions PPM simulation training was acceptable to participants and effective in increasing confidence with PPM skills. Training in PPM simulation should be a routine part of paediatric and neonatal training across the MDT.

Background: Increasing numbers of young people with severe neurological impairment are suffering from gastrointestinal symptoms, which may result in nutritional failure and ultimately death. Gastrointestinal dystonia is a recently described clinical diagnosis amongst patients with severe neurological impairment, and no systematic review of existing evidence currently exists. Aim: To conduct a systematic review of existing evidence for the management of gastrointestinal dystonia in children and young people with severe neurological impairment and palliative care needs. Method: A systematic review assessing pharmacological and non-pharmacological treatments was undertaken using standard Cochrane methodology. We searched Cochrane CENTRAL, MEDLINE, EMBASE, and PsycInfo. All databases were searched from inception, and no language restrictions were used. Results: 1580 references were identified. After abstract screening, 56 references were reviewed at full text, and a case report and case series were identified for inclusion. Low-quality, indirect evidence exists for the management of gastrointestinal dystonia, including symptom management, hydration and nutrition decisions, and end-of-life care. Conclusions: There is a paucity of existing evidence directly relating to gastrointestinal dystonia, but low-quality indirect evidence from studies of children with severe neurological impairment and gastrointestinal symptoms exist, which may begin to inform clinical practice.