Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh

Abstract

PURPOSE The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services. METHODS This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics. RESULTS There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21). CONCLUSION A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.

Presuppositions, cost–benefit, collaboration, and competency impacts palliative care referral in paediatric oncology: a qualitative study

“…A significant disparity in cure rate and mortality between high and low-income countries makes palliative care highly relevant in a paediatric oncology setting [3,4]. Empirical studies have shown that palliative care referral in a paediatric oncology setting improves the quality of life [5][6][7][8], pain and physical symptoms [6,[9][10][11][12][13][14][15][16][17], emotional support to children and their families [10,15,[18][19][20][21], communication between families and health care providers [11,15,16,[19][20][21][22][23][24][25][26], advance care planning and end-of-life care support [5, 12-16, 18, 20, 26-32].…”

Palliative Care in Paediatric Oncology: an Update

“…Symptom management is a critical component of the physical domain of quality of life. Studies have shown symptom assessment [115,116] and symptom management benefit from paediatric palliative care referral [74,75,112,[115][116][117][118][119][120][121]. However, pain management benefit was better appreciated by children and families than the management of other symptoms [74,75,118,121].…”

“…Studies have shown symptom assessment [115,116] and symptom management benefit from paediatric palliative care referral [74,75,112,[115][116][117][118][119][120][121]. However, pain management benefit was better appreciated by children and families than the management of other symptoms [74,75,118,121]. Furthermore, some oncologists felt that palliative care could enable treatment completion by managing pain and symptoms whilst the child is receiving cancer-directed therapy.…”

“…Referral to palliative care facilitated emotional support to children and their families [74,118,[124][125][126][127]. Emotional support to families extended beyond the child's death into the bereavement phase [126,127].…”

Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh

“…We are aware of only 2 other studies describing the characteristics and symptoms of children receiving palliative care in resource limited settings. 13,14 These studies, in Bangladesh and Malawi, describe hospital-based palliative care programs which primarily include children with cancer and/or HIV/AIDS. 13,14 Our study is one of the first focussing on children in a community-based program.…”