Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies
Background: The majority of children die in pediatric
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how frequent these conflicts
are and how health-care professionals (HCPs) experience,
cope and suggest improvements regarding endof-life
communications in pediatrics.
Design/Methods: Questionnaire sent to all 2300 HCPs
who care for patients in a large mother-child university
hospital.
Results: 946 HCPs answered the questionnaire (nurses,
physicians and other disciplines). A majority (70%,
663) had witnessed or cared for at least one dying child
over the preceding five years. Of those, 73% experienced
at least a conflict at the end of life. Conflict
occurred more frequently among HCPs (58%) than between
HCPs and parents (33%), p LT 0.05.
More than 40% reported the following factors as being
frequently associated with end-of-life conflicts:
- HCP Related: lack of continuity (physicians and/
or nurses), differences in values and beliefs between
HCP.
- Patient-Disease Related: precipitated or critical situations,
uncertain prognosis.
- Parent Related: unprepared parents, emotional load,
unrealistic parental expectations, differences in
values and beliefs, parents’ fear of hastening death.
- Institution Related: lack of practical guidelines to
deal with difficult end-of-life cases.
HCP report using these strategies to solve confrontations:
negotiating with parents and patients, educating
parents and discussing with peers. Nurses and physicians
reported significantly different types of coping strategies.
For 66% of respondents, conflicts were resolved
by the time of the child’s death. Only 25% felt they
received adequate training to cope with EOL conflicts.
Suggestions for improvement: primary health-care providers
or case-managers, interdisciplinary meetings
involving the parents, post-death ethics meetings,
bereavement follow-up protocols and earlier consultation
in pediatric palliative care and/or clinical ethics service.
Conclusions: End-of-life conflicts are frequent in pediatrics.
The main source of tension is between providers
who may have different views and values. Coping mechanisms
may be different from one provider to another,
but many identify useful strategies to solve conflicts.
Future research should investigate whether these perspectives
parallel those of parents and patients.
Antoine Payot; Marie-Anne Archambault-Grenier; Marie-Hélène Roy-Gagnon; Nago H; Sanja Stojanovic; Janvier A; Michel Duval
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.023
The Role Of The Emergency Department In Pediatric Palliative Care
Objective: To explore pediatric emergency medicine
healthcare providers’ perspectives regarding their
role in pediatric palliative care.
Methodology: A qualitative study was conducted at the
CHU Sainte-Justine from January to April 2016. Four
interdisciplinary semi-structured focus groups were
held: three involved pediatric emergency medicine
staff and one interviewed the pediatrics palliative
care team. These focus groups were transcribed and
analysed in full using NVivo v. 21 (QSR International
Inc.) to identify nodes and codes, and facilitate the
emergence of themes. Data analysis borrows concepts
from grounded theory by using thematic analysis and
theoretical sampling.
Results: A first group involving 8 pediatric emergency
medicine staff members raised several limitations to
providing pediatric palliative care in the emergency
department (ED). These limitations included the unsuitable
physical environment, constrained time and
resources, lack of knowledge about the patient and
his underlying medical condition, difficulties communicating,
with both the patient’s primary physicians
and the patient’s parents, and deficient training. ED
staff suggested their role included evaluating the
clinical situation, listening to the patient and his family,
trying to establish a trusting relationship, supporting
the patient and his family, and organising a rapid
admission to the ward. Disagreements were encountered
about two different approaches in palliative
care. Some healthcare providers believed a designated
and specialised team should manage all patients in pediatric
palliative care. Others suggested a transversal
approach, in which all healthcare providers have a
role to play in the care of pediatric palliative care
patients.
Conclusion: Several limitations and barriers have been
identified to providing high quality pediatric palliative
care in a pediatric ED. The ED’s role in caring for
these patients remains controversial, and demonstrates
two distinct philosophies for providing pediatric
palliative care.
Anne-Josée Côté; Nathalie Gaucher; Antoine Payot
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.110