A Comparison of Circumstances at the End of Life in a Hospital Setting for Children With Palliative Care Involvement Versus Those Without

Abstract

The integration of a PPC team was associated with fewer diagnostic/monitoring procedures and improved pain management documentation in this study of 114 children who died as inpatients.

Modes of Death Within a Children’s Hospital

“…The majority of the 45 000 infants, children, and adolescents who die annually in the United States do so in hospitals 1,2 (mostly in ICUs). 3,4 Authors of some studies suggest that deaths in ICUs typically occur after either the withdrawal or the withholding of life-sustaining technologies. 5 -7 The published data regarding modes of death are limited, however, either relying on multi-institutional administrative data, in which important aspects of clinical practice are not recorded, 8 -10 or being based on smaller cohort studies that are restricted to specific locations in the hospital, such as the ICU.…”

“…In this respect, we are able to add to the growing body of literature that supports improvements in end-of-life care with palliative care involvement. 4,8,29 However, in many institutions, a limited number of children have access to palliative care services at the end of life. 15,30 In our study, only one-third of children had documented subspecialty palliative care involvement.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…Investigators of three studies 85–87 considered specialty PPC as a separate intervention, and compared children’s end-of-life experiences with or without it. First, among 114 children who died at a children’s hospital (not all from cancer), inpatient PPC consultation was associated with higher frequencies of pain assessment and management, increased use of integrative medicine, fewer diagnostic or invasive procedures in the last 48 h of life, and more orders to limit resuscitation than those who did not receive inpatient PPC consultation.…”

“…First, among 114 children who died at a children’s hospital (not all from cancer), inpatient PPC consultation was associated with higher frequencies of pain assessment and management, increased use of integrative medicine, fewer diagnostic or invasive procedures in the last 48 h of life, and more orders to limit resuscitation than those who did not receive inpatient PPC consultation. 85 Among bereaved parents of children with cancer treated at a second centre, PPC team involvement was associated with increased documentation about the medical aspects of the dying process and possibility of death, including with the child, when appropriate. 86 Finally, among children receiving HCT at a third centre, 97% of families who received specialty PPC discussed the prognosis of the child compared with 83% of families who did not receive PPC.…”

Who is responsible for delivering palliative care to children with cancer?

“…However, subspecialty PPC teams are particularly helpful at the end of life. Children who receive timely subspecialty PPC services at the end of life experience more comprehensive and successful pain and symptom assessment, fewer invasive procedures, and more documentation regarding advance care plans when compared to children who do not receive subspecialty PPC . In contrast, late PPC referrals translate to missed opportunities for patients and families to prepare for the end of life, in turn leading to increased child suffering and increased psychological distress among parents and surviving siblings .…”