Advance care planning for paediatric patients

Abstract

Medical and technological advances have increased survival rates and enhanced the quality of life for infants, children and youths with chronic life-threatening conditions. Advance care planning includes the process of discussing life-sustaining treatments and establishing long-term care goals. Paediatric health care practitioners have an ethical obligation to educate themselves about this aspect of medical care. The present statement aims to assist health care practitioners to discuss advance care planning for paediatric patients in varied settings. Advance care planning requires effective communication to clarify the goals of care and establish agreement on what treatments may or may not be appropriate to achieve these goals, including resuscitative and palliative measures.Key Words: Advance directives; Consent; Palliative care BACKGROUND Medical and technological advances have resulted in higher survival rates in a cohort of children with complex health conditions, many of whom would not have survived previously (1,2). Although robust, longitudinal population-based epidemiological studies of childhood illnesses and disabilities are lacking, we know that rates are increasing (2,3). These children often require multiple interventions to maintain their health including surgical procedures, hospitalizations and home technological supports. With the complexity of these conditions, parents frequently face difficult decisions about which interventions should be performed on their child because some are accompanied by significant burdens. The potential for burden mandates health care providers to carefully counsel families and legal guardians, acknowledging the delicate balance between promoting survival and compromising quality of life. Our aim as paediatric health care providers should be "to add life to the child's years, not simply years to the child's life" (4).There is a dearth of information regarding advance care planning in the paediatric population compared with the adult population, in which there is much clinical experience and research. A number of factors contribute to this gap. The emphasis on beneficence rather than patient autonomy in parental substitute decision-making leads to a prima facie bias toward curative rather than palliative options. This bias is consistent with parental obligation to protect children and societal predisposition in favour of life.

Paediatric advance care planning: Physician experience and education in initiating difficult discussions

“…Medical and technological advances over several decades have led to higher survival rates amongst children with complex health conditions . As a result, paediatricians are caring for increasing numbers of children with chronic and complex medical conditions, many of whom have a reduced life expectancy .…”

“…Many of these children require multiple interventions and hospitalisations to maintain their health. Hence, their care can require discussions regarding prognosis and the importance of balancing survival against quality of life . It has been said that ‘our aim as paediatric health care providers should be to add life to the child's years, not simply years to the child's life’ .…”

“…ACP discussions provide families with opportunities to explore concerns and to state their wishes regarding medical interventions, place of care and preferred place of death . Studies in paediatric ACP provide good evidence that most parents want physicians to discuss options with them and value discussions that will allow them to be the ultimate decision maker for their child . For physicians, ACP can enhance communication and avoid assumptions regarding families' preferences for care.…”

“…Studies suggest that doctors often feel ACP occurs too late in a child's illness . Numerous studies have found that parental preference is commonly for children to die at home; however, most children dying in hospital continue to die in intensive care units . Making end‐of‐life care decisions in intensive care can be particularly challenging as such conversations often need to proceed during a period of acute deterioration, with family members given little time to adjust to changes in expected outcomes or treatment approaches …”

“…Medical and technological advances over several decades have led to higher survival rates amongst children with complex health conditions. 1 As a result, paediatricians are caring for increasing numbers of children with chronic and complex medical conditions, many of whom have a reduced life expectancy. 2 United Kingdom (UK) data show that most paediatric deaths occur in children with chronic conditions, including severe cerebral palsy, neurodegenerative, genetic and metabolic disorders, extreme prematurity, severe congenital anomalies, cancer and cystic fibrosis.…”