Pediatric palliative care, palliative care, end of life communication

BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Although studies have shown PPT to favorably affect both children and their families, limited research exists on the perspectives of health care practitioners. OBJECTIVES: To understand the experience of interprofessional practitioners who have cared for a critically or terminally ill child during a PPT and their perception of PPT as a care option...

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021...

PURPOSE: This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. DESIGN AND METHODS: This cross-sectional study involved 26 parents recruited from three pediatric hematology-oncology wards in Israel who completed demographic and medical questionnaires of the child, and a parental needs questionnaire based on The Needs Assessment of Family Caregivers-Cancer questionnaire, following the death of their child...

Palliative care (PC) enhances the quality of life for patients and families facing life-threatening conditions. While PC is well-established for adults, not all practices apply to pediatrics. Consequently, specific quality indicators for Pediatric Palliative Care (PPC) must be identified. This scoping review aimed to identify the variables associated with the quality of care of PPC patients in Spain, focusing specifically on three areas: structure and process of care, psychological aspects of care, and care of patients approaching the end of life...

PURPOSE: Despite the numerous benefits of effective communication between patients, families, and healthcare professionals, there are still substantial barriers and communication challenges. This study investigated the experiences of nurses and doctors working in different pediatric hematology-oncology units in Turkey communicating with children and their parents about end-of-life issues. METHOD: This qualitative study was conducted with twenty-four physicians and nurses...

Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling...

The evolution of paediatric palliative care in Malaysia has followed a distinct trajectory compared to adult palliative care. While adult palliative care was well-established by the mid-1990s, paediatric palliative care was still then largely ad hoc, with individual paediatricians and NGOs taking on the responsibility. Despite progress over the last decade, challenges persist. There is a shortage of trained paediatricians in this subspecialty, and financial constraints hinder progress. Decision-making in paediatric palliative care is also influenced by cultural values, religious beliefs, and societal norms...

Effective communication in end-of-life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication experiences and needs of these nurses with children and their families during the end-of-life period. A qualitative study design with photo voice methodology was followed. The research was conducted with 16 pediatric oncology nurses working in the pediatric oncology wards of a university hospital between January and May 2023...

High-quality communication is essential for the optimal care of children with cancer and their families. There are opportunities for pediatric oncologists to engage in clear and compassionate prognostic communication across the disease trajectory including at the time of diagnosis, disease recurrence or progression, and end of life. Contrary to previously held beliefs, prognostic disclosure supports parental hope and meets the needs and expectations of families who prefer honest conversations about prognosis...

OBJECTIVE: To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). METHODS: The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru...

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication...

BACKGROUND: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. OBJECTIVES: (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). METHODS: Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor...

Purpose Effective, empathic communication is crucial for pediatric oncology clinicians when discussing palliative and end-of-life (PC/EOL) care with parents of children with cancer. Unfortunately, many parents report inadequate communication at these distressing times. This study evaluates the communication skills training (CST) clinicians received to deliver a PC/EOL communication intervention as part of a multi-site randomized-controlled trial (RCT). Methods Clinicians from eight sites formed dyads (one physician and one nurse [RN] or advanced practice provider [APP]) and were trained over 3 days (in-person or virtually)...

Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the "dos" to the "don'ts." These communication strategies are meant to be added to the nurse's "toolbox" so that nurses may use them in various scenarios. These communication tools are meant to help mitigate the stress and discomfort nurses often feel when using palliative communication or delivering bad news...

BACKGROUND: Pediatric palliative care (PPC) helps maintain the quality of life for both children and their families. It has been identified as an important goal within the global health agenda. In Saudi Arabia, the discipline remains in its infancy, as illustrated by the absence of PPC programs in academic and health care institutions. AIM: The aim was to conduct a pilot study assessing physicians' knowledge, attitudes, and perceptions toward PPC. METHOD: Data were gathered through a self-administered questionnaire sent to physicians working in Saudi Arabia...

INTRODUCTION: Care for neonates at the end of life (EOL) is often challenging for families and medical teams alike, performed suboptimally, and requires an experienced and compassionate clinician. Much literature exists on adult and pediatric EOL care, but limited studies examine the neonatal process. METHODS: We aimed to describe clinicians' experiences around EOL care in a single quaternary neonatal intensive care unit as we implemented a standard guideline using the Pediatric Intensive Care Unit-Quality of Dying and Death 20 tool...

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 of implementing new communication tools into clinical practice. METHODS: A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals...

Research on how physicians predict and communicate prognosis focuses primarily on end-of-life care. Unsurprisingly, as genomic technology gains traction as a prognostic tool, the focus has also been on terminality, with research focused on how genetic results may be used to terminate pregnancies or redirect care towards palliation for neonates. However, genomic results also have powerful impacts on how patients who live prepare for their futures. Genomic testing provides broad-reaching and early-albeit complex, uncertain, and shifting-prognostic information...

With advances in biomedical sciences, a growing number of conditions affecting children have evolved from being considered life-limiting to almost chronic diseases. However, improvements in survival rates often come at a cost of increased medical complexity and lengthy hospitalizations, which can be associated with a poorer quality of life. This is where pediatric palliative care (PPC) can play a significant role. PPC is a specialty of healthcare that focuses on the prevention and relief of suffering in children with serious conditions...

Background/Objectives: The aim of this study is to describe the current state of end-of-life (EOL) care education within pediatric critical care medicine (PCCM) fellowship programs and explore potential differences in beliefs on EOL care education between program directors (PDs) and fellows. Design: A mixed-methods study based on data obtained through a nationally distributed, web-based cross-sectional survey of PCCM fellowship PDs and PCCM fellows was performed. Setting: Accreditation Council for Graduate Medical Education (ACGME)-accredited PCCM fellowships in the United States...