Parental experiences in end‐of‐life decision‐making in allogeneic pediatric stem cell transplantation

Abstract

Background In pediatric hematopoietic stem cell transplantation (HSCT), the end‐of‐life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents’ perspective on decision‐making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision‐making in allogeneic pediatric HSCT. Methods A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed. Results All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision‐making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision‐making. Two central themes were identified: “survival‐oriented decision‐making” and “struggling with doubts in hindsight.” Six subthemes within the first theme described the parents’ goal of doing everything to achieve survival. Discussion Parents experienced EOL decision‐making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision‐making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.

Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric Hematopoietic Stem Cell Transplant

“…However, when clinicians offered emotional support and human social interaction, these relationships had a lasting and meaningful impact on the parent (West et al, 2020). Similarly, healthcare providers were integral in offering advice and maintaining hope for a cure, which enabled parents to continue caring for the child's needs and focus on the future (Mekelenkamp et al, 2020). Open discussion and joint decision making between the parent and provider are associated with PTG among parents of children with cancer (Wilson et al, 2016).…”

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers

“…The authors of this study noted that the child's condition can deteriorate fast while the treatment is still focused on survival, resulting in less time to prepare for EOL [8]. Parent reports showed that, in hindsight, parents experienced concerns regarding their child's suffering [17] and were at greater risk of decreased psychological wellbeing [18,19]. In contrast, studies have shown that transplanted children, adolescents, and young adults who received (pediatric) palliative care were more likely to die outside the (P)ICU; this reflects an impact of palliative care involvement on a patient's location of death [4,6].…”

Supporting “good parent” beliefs with communication: Where do we go next?

“…In case you do not take the opportunity, you will have remorse." 5 Together, these two articles demonstrate the tensions and conflicts parents experience as they navigate their child's end of life. Furthermore, these studies reinforce the importance of effective communication for parents during these difficult times.…”

“…The second article in recent issues by Mekelenkamp and colleagues 5 provides further insights into the experiences of bereaved parents. These authors performed a qualitative interview study with parents of eight children who died after receiving a hematopoietic stem cell transplant.…”

“…For example, one parent in this study commented, “You will take every opportunity, even if there is a chance of 1%. In case you do not take the opportunity, you will have remorse.” 5 …”