Palliative Care in Paediatric Oncology: an Update

Abstract

Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. Recent Findings Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Summary Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.

Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study

“…In the process of realizing their self-worth, children can feel their importance and have positive emotional experiences. 28 Generally, children are often considered incapable of making decisions, such as whether to participate in organ donation, or are excluded from end-of-life discussions because of their cognitive development. 29 Avoiding these topics, however, can make them feel isolated.…”

Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer

“…Children with cancer often suffer from physical and psychological symptoms during therapy 8,9 . Such experiences affect the quality of life of these children and their families 10–19 . Pediatric palliative care (PPC) has been shown to alleviate suffering and enhance quality of life for children with cancer 20 .…”

Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review

“…Many reports have described the benefits of specialized PPC teams in terms of patient, family and system outcomes. Timely integration of specialized PPC services in the treatment of pediatric patients yielded better symptom management, quality of life, communication with the children and their families, and reduced care cost (5)(6)(7)(8)(9).…”

“…In low middle-income countries (LMICs), many barriers-such as lack of human and material resources, training and policies-challenge the development and provision of specialized PPC services (9,10). Despite the limited resources, several PPC programs in hospitals or hospices are available primarily in urban areas in these countries (11).…”

“…Despite the inclusive WHO definition, PPC and end-oflife care were used interchangeably in healthcare settings for the last two decades. As such PPC has been integrated late in the disease trajectory, typically in the terminal phases of the child's illness (9). This discrepancy between PPC philosophy and practice resulted in negative PPC views, often cited as barriers to the timely integration of PPC.…”