End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families

Abstract

Objectives Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. Methods Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. Results Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. Significance of results Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

“Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

“…56,57 Communication is central in the practice of EOL and has been consistently ranked as a major need for families of persons at the end-of-life. 13,58,59 The heavy ED workload can hinder communication with family members only for healthcare staff to appear later to break the death news. Effective communication may also be hindered in an ED environment where there is inadequate privacy to discuss sensitive EOL issues.…”

“Some things are even worse than telling a child he is going to die”: Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life

“…The United Nations Convention on the rights of the child states that children have a right to be heard and involved in matters that affect their lives, including being informed of their disease, prognosis, and decisions regarding their healthcare 1,2 . However, this right can become complicated by factors such as the patient's age, their cognitive and emotional development, 3 parents' rights and attitudes, 4,5 healthcare professionals’ (HCPs) attitudes and communication skills, 6,7 and cultural norms 8 . Consequently, patient/child‐centered communication and the ethical concept of pediatric consent and/or assent are not always fulfilled 9 …”

“…Communicating with children in pediatric oncology facing life‐threatening conditions is even more complicated due to the emotional nature of treating children, 20% of whom will not survive the disease 5,10,11 . As such, communicating about disease recurrence or stopping curative treatment is a concern of many pediatric oncologists 6 .…”

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“…In addition to families requiring assistance in navigating these discussions ( Kenney et al, 2021 ), we found few AYAs shared what they wrote in VMC with their HCP. Challenges surrounding ACP conversations with HCPs include provider discomfort and a lack of training and resources ( Dellon et al, 2010 ; Durall et al, 2012 ; Lotz et al, 2013 ; Heckford and Beringer, 2014 ).…”