Advance care planning and outcome in pediatric palliative home care

Abstract

Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families’ preferences. To expand our knowledge of advance care planning and “medical orders for life-sustaining treatment” (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four “Together for Short Lives” (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients’ places of death.The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting).The circumstances of the childrens’ deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.

Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review

“…In timing of initiation uncertainty of prognosis was an important factor that influences both the initiation and focus of advance care planning discussions. Similar to previous work 8 , 18 , 26 , 61 prognostic uncertainty influenced the timing and acted as a key barrier to starting advance planning discussions. Whilst advance care planning discussions were advocated early in the illness trajectory, 11 , 24 , 25 , 27 , 46 , 54 , 58 , 59 evidence suggests they were initiated in direct response to the physical deterioration of the child, which acted as a key trigger and catalyst.…”

“…Studies undertaken to date recognise that health care professionals are ideally placed to initiate such discussions, however they are often reluctant to do this due to difficulties in prognostication and fears that parents lack understanding or are not emotionally ready to engage. 8 , 15 , 18 , 24 – 27 Although parents and minors are at liberty to start these discussions, the onus is on professionals to respond to parental and patient cues, or to ensure the conversation is started. Parental expections are that clinicians should take the lead.…”

Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation

“…The SOPPC team participants desired an individual page, where patients’ core information (e.g., master data, genogram (detailed family relationships diagram [ 23 ], main problems, medical orders for life-sustaining treatment [ 24 ], medication, diagnoses, and admission reason) could quickly be assessed.…”

Challenges of palliative care in children with inborn metabolic diseases

“…This is in contrast to previous reports on children dying in PPC, in that most of the children died at home [ 2 , 9 , 14 , 15 ]. Looking into these children in more detail, on the one side this is due to the high number of parents who opt for the full range of life-sustaining measure [ 16 ]. Metabolic diseases are a fairly complicated diagnosis for parents and non-specialist health care providers to understand.…”

“…In addition, even for the members of the PPCT, the disease trajectory may – to some extent – remain unpredictable and, thus, cause uncertainty about prognosis and medically indicated interventions right up to the best interest of the child. Thus, ACP discussions including the decision whether to stop or maintain life-sustaining measures have been performed with a more open outcome and less restrictive treatment recommendations given to the families, which may partially account for the high number of children dying in hospital or even on ICU [ 16 ].…”