Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres.

There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.

Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey.

BACKGROUND: More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted. This study aimed to compile an inventory of symptoms experienced, interventions applied, and current service provision in end-of-life care for DIPG. METHODS: We performed a retrospective cohort study of children with DIPG, aged 0-18 years, who received treatment under the care of 2 London hospitals. Symptoms, interventions, and services applied during the 12 weeks before death were analyzed. In addition, we conducted a global questionnaire-study among health care professionals. RESULTS: In more than 78% of DIPG patients, problems concerning mobility, swallowing, communication, consciousness, and breathing arose during end-stage disease. Supportive drugs were widely prescribed. The use of medical aids was only documented in <15% of patients. Palliative and end-of-life care was mostly based on the health care professional's experience; only 21% of the questionnaire respondents reported to have a disease-specific palliative care guideline available. CONCLUSIONS: This research assessed the current state of palliative and end-of-life care for children with DIPG. Our results show the variability and complexity of symptoms at end-stage disease and the current lack of disease-specific guidelines for this vulnerable group of patients. This first descriptive paper is intended to act as a solid basis for developing an international clinical trial and subsequent guideline to support high-quality palliative and end-of-life care.

Supportive care for children and young people during cancer treatment.

Children, young people and their families come into contact with a large number of health and social care professionals within hospital, education and community settings following a cancer diagnosis. The multiprofessional team best supports these families through an open and communicative approach to care. The side effects of cancer treatment include fever, infection, gastrointestinal upset, altered body image and psychological impact on children, young people and their families. Debate continues as to how children, young people, their siblings and parents cope with childhood cancer and its treatment due to its impact on family quality of life. It is considered that the short- and long-term wellbeing of children, young people and their families during treatment is best supported by continuing routine daily activities, such as attending nursery, school or college.

An evaluation of two subcutaneous infusion devices in children receiving palliative care.

Children and young people with advanced cancer frequently have a central venous access device (central line) in place which can be used for intravenous medication for symptom management. Those that do not may need a subcutaneous device for medication infusion. Two subcutaneous devices were evaluated in four children requiring infusion of opioids, anti-emetics, anti-muscarinic agents and benzodiazepines during their palliative care. The length of time the device was in situ and local skin reactions were monitored and the views of children, parents and nurses obtained. Out of 32 evaluations, 28 (88 per cent) indicated that the Thalaset s/c device was preferred to the winged device in terms of child comfort and nurse satisfaction. Although limited by the number of children in the evaluation, the results support the use of the Thalaset s/c device as part of symptom management for children and young people who do not have central lines.