More research is needed into developing approaches in pediatric palliative care (PPC) across different communities, says a group of experts. They say the methods should provide care that responds satisfactorily to suffering, and make PPC an integral part of training for HCPs (health care professionals). You can read a Review online about this in the upcoming edition of The Lancet.
Dr Joanne Wolfe, Dana-Farber Cancer Institute, Boston, USA and Children’s Hospital Boston, USA, and team examined published literature prior to writing the Review. “While recognizing the need to improve the access for the many children worldwide that lack basic medical care, we content that all children facing the possibility of death would benefit from the application of basic, low-cost principles of PPC,” they wrote.
They looked at six main challenges facing PPC:
1. Defining PPC. Doctors differ on whether the terms life-threatening or life-limiting are more appropriate when defining conditions that merit PPC. Here they looked at two case studies of children with the genetic defect trisomy 18.
2. A better understanding of the needs of PPC is needed. “There is little outcome data about the needs and effectiveness of many PPC interventions,” say the authors. Data indicates that the management of pain and other distressing symptoms are not adequate, even though numerous children suffer from pain. The majority of the children die in hospital, including several in intensive care units. Confusing, inadequate or seemingly uncaring communications from staff can result in parental dissatisfaction. “Research into the child’s perspective has been especially neglected, presumably related to numerous concerns such as developmental differences, emotional fragility, and an overwhelming sense of not wanting to upset the child,” wrote the researchers.
3. Culture and spirituality should be an integrated part of PPC. The promotion of honesty, autonomy in the decision-making process, open expression of feelings, inviting the child into discussion work well in the UK and USA, but not in some other cultures. Discussing a patient’s death in front of him/her is seen as a kind of curse in China. “In some of these cultures, honesty about dying is perceived as a brutal invasion that deprives the patient of a protective cocoon against adversity, and threatens the culturally prescribed roles and functions normally assumed by parents,” the scientists wrote.
4. Reducing suffering and promoting hope and healing. How children express and talk about their suffering. How adults and children live through hope.
5. Help for the health care professional. Studies suggest that a health care professional involved in PPC may suffer from compassion fatigue and burnout. If they have to deal with staff shortages and high workloads their stresses are aggravated even more. The researchers write “Grieving of health-care professionals remains hidden and disenfranchised, however, because society expects them to remain strong and stoic in the face of death, while institutional regulations strongly discourage the appearance of vulnerability through the expression of grief.”
6. The integration of PPC knowledge into training programs in medicine, nursing and associated disciplines. Current PPC education is still erratic and piecemeal. The writers say “Gaining experience in caring for the dying can help young doctors learn to tolerate the degree of intimacy and personal engagement that other aspects of medical training may subvert or undermine.”
“Despite these challenges, advances in PPC have been achieved in a short period of time; we expect far greater progress as the field becomes more formalized and research networks are established,” they conclude.
Written by: Christian Nordqvist