The charity Together for Short Lives has launched a campaign to encourage nurses to consider a role in children's palliative care in the voluntary sector, to prevent any further reduction in services for this already vulnerable group.
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that…
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…
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to…
The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use…
OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (
Duchenne muscular dystrophy (DMD) is a progressive, impairing, life-limiting disorder of childhood. Little is known about how siblings adapt to this. The aim of this study is to document psychosocial adjustment in siblings of patients with DMD.…
The results of a novel approach to the use of ketamine in refractory cancer pain are reported. In this prospective, multicenter, unblinded, open-label audit, 39 patients (with a total of 43 pains) received a short duration (3 to 5 days) ketamine…
The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10–18, a 30-item patient-rated instrument adapted from a previously validated adult…
Consensus exists that a do-not-attempt-resuscitation order (DNAR) is appropriate if a resuscitation attempt is futile. Less agreement exists when this point is reached. We investigated the influence of three major considerations for in-hospital DNAR…
When a child dies, the survivors-both parents and the remaining children—must adapt to a new reality. The immediate effect of sibling death is to precipitate grief and to increase the psychologic vulnerability of the remaining children. Communication…
The role of neuropeptides in the psychoneuroendocrinological stress response is largely unknown. In this study the effect of acute psychological stress on β-endorphin and substance-P plasma concentrations was investigated and further the effect of…
The relation between the timing of do-not-resuscitate (DNR) orders and the cost of medical care is not well understood. This prospective observational study compares hospital costs and length of stay of 265 terminally ill patients with admission DNR…
Sedation with analgesia is frequently required to perform painful or invasive procedures in children. The best medication combination for pediatric sedation with analgesia is yet to be identified. Sixty-four of 243 total sedation with analgesia…
Recently, patient controlled analgesia (PCA) has gained prominence in the treatment of pain for children suffering from vaso-occlusive crisis associated with sickle cell disease. Because there are several different regimens that can be used for PCA,…
The management of pain in terminally ill pediatric patients has incalculable benefits to patients, their families, and physicians and nurses. A therapeutic management plan is dependent on a thorough understanding of the causes of pain in these…
OBJECTIVES: To record the number of children with withdrawal symptoms after the administration of sedatives for mechanical ventilation, and to discuss the possible connection with the administration of midazolam. DESIGN: Retrospective data collection…
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…
This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the…
The purpose of this article is to describe the implementation and evaluation of a quality improvement process to improve pain management in a hospice setting. A retrospective chart audit of 702 patient visits pre- and 536 patient visits…
OBJECTIVE: To assess the degree to which Nova Scotia cancer patients who may need palliative care are being referred to the comprehensive Halifax-based Palliative Care Program (PCP). METHODS: The authors conducted a retrospective, population-based…
A pilot study of telenursing for terminally ill patients at home was launched as a collaborative effort between KUMC and the Kendallwood Hospice. The service used the public telephone network. Interactive video equipment was installed in the homes of…
Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful…
OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…
The complexity of assessing the impact of palliative care is much greater than in other fields of medicine, due to the shortcomings of traditional outcome indicators. We conducted a prospective study to describe the patient's quality of life at the…
