During the implementation period of the EoL care and bereavement program from 2019 to 2021, 606 children died in the hospital. Among these, 319 children (52,6%) had been assessed by the TCY team, and 258 (80.8%) of them were followed up by the EoL and bereavement program, since a significant portion of the hospital’s population resided in remote areas or had limited access to follow up by post mail, e-mail or even telephone calls (Table 1).
Table 1 Characteristics of children cared for by EOL and Bereavement Care Program (2019–2021)Components of the EOL and bereavement programThe methodology section outlines a step-by-step approach to the development of our implementation strategy format and the components of the EoL and bereavement care program. These strategies and deliverable outcomes were classified into four domains. (Table 2).
Table 2 Key domains illustrating implementation strategy and deliverable outcomes of the end-of-life care and bereavement programManagement and education services to healthcare providersClinical guidelines and EoL care checklists were designed to outline the main task for supporting children and their families. The checklist and tools were distributed in each pediatric ward as a quick-reference package to allow all children in need to access the necessary care (Appendix A).
Signaling EoL and bereavement care. A “fallen leaf” sign was placed on the doors or windows of rooms where patients were receiving EoL care. This informed all staff that a patient and family were experiencing EoL or bereavement care, reinforcing and promoting a calm, private, respectful, and compassionate environment.
Training and education were other essential components of the program. Initially, voluntary courses were organized for champions willing to support this initiative. Over time, healthcare providers (HCPs) at FVL received mandatory EoL and bereavement training. At this point, the challenge was to standardize the program, which took time and much effort.
Databases of deceased children in the institution were created and updated to follow up on bereaved families and offer comprehensive support and guidance to bereaved parents and siblings.
Direct actions with patients and familiesSix direct actions were implemented to accompany patients at EoL and families after the death of their children, as listed in Table 3.
Table 3 Strategies implemented to support and follow up on bereaved parentsTelephone follow-up was an initial tool used for support. Two hospital volunteers already part of the TCY program were trained by TCY leaders in communication, grief, and bereavement care. These volunteers conducted follow-up calls, focusing on parents’ needs and offering the necessary support. A total of 258 follow-up calls were made to bereaved parents. Communication guidelines and a list of red flags for complicated grief (Appendix A) were included to determine the type of follow-up needed for each parent. Families identified as being at risk for complicated grief received individual psychological support from the PPC team psychologist.
A personalized condolence letters and attending funerals (when possible), were also integral part of the EoL and bereavement care components at FVL, demonstrating ongoing support throughout the bereavement phase. In total, 79 letters of condolence and 214 memorial boxes were sent, and delivered.
Psychological follow-up sessions were conducted by the team’s psychologist (up to 3 sessions). On average, the follow-up covers the first year after the child’s death, although some families require support beyond this time, depending on their needs. As a result, 150 individual psychological follow-ups were conducted for parents with complicated grief.
Group workshops for bereaved parents. A total of 10 group support workshops were held. Parents were invited through follow-up telephone calls. These workshops were conducted every four months, lasted three hours each, and were led by the PPC team (PPC pediatrician, family physician, psychologist, social worker, and nurse).
During group workshops, four main activities were organized. The first activity involved sharing experiences during the trajectory of the illness and after the death of the loved one, accompanied by a psycho-education session. The second was music therapy, allowing participants to manage emotions such as anxiety, stress, and sadness. The third activity involved expressing gratitude in three areas: gratitude general, to the child, and to the health care team [34]. Finally, each family released a butterfly to commemorate and remember their child.
Parents evaluated the bereavement program positively, with comments such as “during this process, I am thankful for…. “making us feel that we are not alone; thanks to the whole “Taking care of you” program, the human quality of the group”. Families were also able to express their gratitude to their deceased child by thanking them in notes, for example, “my daughter for the love she always showed me, for teaching me to fight very hard no matter the task, to have a big heart, not to complain about the little things, to be strong and not to decay.”
Awareness campaign and education of staffTwo fundamental points were essential for developing and implementing the EoL and bereavement program. First, various strategies were developed to raise awareness at all levels of care, including medical directors, staff, patients, families, and the community. These strategies included brochures, institutional ground rounds, articles in a local newspaper, and individual discussions with staff. Second, considering that PPC and bereavement care are topics with little recognition, a mandatory institutional course on EoL care and bereavement was mandated for all HCPs.
A EoL and bereavement care e-learning course was designed to provide essential knowledge to HCPs at FVL who treat patients in critical condition, with advanced illnesses, or at the EoL in an intra-hospital setting. The course content included four modules covering communication skills for delivering bad news, symptom management at the EoL, decision-making at the EoL, bereavement support, and self-care for HCPs. Acknowledging the demanding nature of caring for children at the EoL and providing bereavement support, our e-course emphasizes self-care and resilience tools to prevent burnout and compassion fatigue, ensuring the program’s sustainability. This course became mandatory for all HCPs at FVL between September 2020 and September 2022. During this period, a total of 956 HCPs were trained.
Finally, one of the most used deliverables was the development of the EoL and bereavement care flowchart for pediatric services of the hospital (Fig. 2), which facilitates understanding of the process, roles, and staff interactions.
Fig. 2End-of-Life (EoL) and bereavement care in the pediatrics services of the hospital
Adaptation of program activities during the pandemicDuring the COVID-19 pandemic, some adjustments were made. Although the implementation strategies and the pilot plan continued, the TCY program introduced virtual strategies to support bereaved families. These included synchronous group calls via Zoom, delivering butterfly cocoons to parents’ homes as a symbol of life transformation, providing support material for bereaved families, and follow-up phone calls. The EoL care for children at the hospital was continued, with adjustments to ensure that the caregivers and HCPs used personal protective equipment and other measures to reduce transmission risk while applying program strategies and multidisciplinary support. Training and capacity-building courses for HCPs were maintained, primarily in a virtual setting, though one-on-one follow-ups between the PPC team and the service leaders were offered when necessary.
For bereaved parents and family members, virtual follow-up became the preferred option. Workshops for parents and the “Day of Remembrance” were held through virtual meetings that were well received by participants.
Challenges and keys to successWhile executing the pilot of our EoL and bereavement care program, several challenges were identified, such as lack of recognition and resources. Table 4 synthesizes the most significant challenges and key success factors for the program’s implementation for our team at the hospital.
Table 4 Summary challenges and key factors of success for the implementation of the bereaved program
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