Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

Abstract

Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care. Result The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool. Significance of results Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

Bereaved mothers' and fathers' prolonged grief and psychological health 1 to 5 years after loss—A nationwide study

“…Lichtenthal et al showed that many cancer‐bereaved parents do not receive bereavement support, partly because the loss is not only too painful to talk about but also due to difficulties in finding such services. Currently, childhood cancer centers often lack routines for assessment of the parents' needs of bereavement care, prior to and postloss, and even if such services are available, there are large variations in how they are delivered . The other recommended standard is community‐based resources as a sustainable framework for bereavement care, but the availability and quality of such support are highly variable .…”

“…Currently, childhood cancer centers often lack routines for assessment of the parents' needs of bereavement care, prior to and postloss, and even if such services are available, there are large variations in how they are delivered. 37 The other recommended standard is community-based resources as a sustainable framework for bereavement care, but the availability and quality of such support are highly variable. 38 Therefore, standardized bereavement support is suggested to be included as an integral part of pediatric care settings.…”

How I approach expressing condolences and longitudinal remembering to a family after the death of a child

“…A recent survey of 500 pediatric oncologists revealed that nearly all (98%) believed that bereavement care (such as condolence contact) is part of good clinical care . And yet, approximately two‐thirds of centers delivering pediatric cancer care do not have a policy or standard for delivering bereavement care . Bereavement care is often disparate based on local practice and personal or professional comfort of the care teams.…”

“…The standard states that bereaved families “want follow‐up and benefit from continued connection with their child's healthcare providers” . Yet, approximately one‐third of pediatric cancer centers that do engage in bereavement contact report that the person initiating contact did not know the child . In fact, offerings that appear impersonal can leave the family feeling unseen and unknown, and run the risk of causing the family more pain.…”

“…3 And yet, approximately two-thirds of centers delivering pediatric cancer care do not have a policy or standard for delivering bereavement care. 4 Bereavement care is often disparate based on local practice and personal or professional comfort of the care teams. Time, resources, perceived lack of knowledge of what to say, and the complexities of emotion are cited by pediatric oncologists as realistic barriers to personalized condolences.…”