CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…
Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the…
BACKGROUND: Globally initiation of paediatric advance care planning discussions is advocated early in the illness trajectory however evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain…
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of…
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal…
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not…
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS:…
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care…
A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and…
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these…
BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We…
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain…
Objectives To see if a network Palliative Care Study day increases knowledge of participants. Method This was the first paediatric palliative care network study day run in the region. 20 doctors (both consultants and those in training) participated.…
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as…
BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care…
AIM: Our study aimed to assess physicians' experiences and education regarding advance care planning (ACP) in paediatrics. We aimed to assess barriers to ACP initiation, including the adequacy of exposure and education regarding ACP and whether…
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…
Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents'…
OBJECTIVES: Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our…
AIMS AND OBJECTIVES: The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care., BACKGROUND: Internationally, advance care planning programmes usually measure success by…
Because predicting and outlining guidance for all possible scenarios is difficult, advance directives are rarely sufficiently precise to dictate patient preferences in specific situations as a disease progresses. Nonetheless, advance care planning is…
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey…
OBJECTIVE: This research examined the provision of palliative care for residents with a non-cancer diagnosis including the use of advance directives and advance care planning as part of palliative care policies in residential aged care facilities in…
Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development.…
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often…
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high…
Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an…
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected…
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the…
Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a…
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life…
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and…
Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background…
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges…
