BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees…
BACKGROUND:
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be…
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave.…
Background: Historically, the social aspects of death, dying and bereavement have been given insufficient attention by palliative care services; this has had an adverse effect on how patients and their families experience end-of-life and bereavement.…
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and…
Background Recent estimates of the number of children and young people with life limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. Aim To compare routine inpatient data and death…
OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice…
Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and…
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making,…
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and…
BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the…
Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The…
Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among…
The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a…
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…
This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…
Shortness of breath and other respiratory symptoms frequently complicate the symptomatic management of terminally ill adults. The extent of the problem in children is not known, but anecdotal evidence from nurses and physicians experienced in…
