A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
advance care planning;decision making;Child;clinical audit;conference abstract;conversation;death;education;England;human;information retrieval;intensivist;landscape;palliative therapy
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. An ACP in PICU simulation programme for clinicians in our large quaternary centre. A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.
Sidgwick P;Randle E;Petros A
Pediatric Critical Care Medicine
2018
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).
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537859.14793.d8</a>
Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?
Child; Humans; retrospective studies; Intensive Care Units; Terminal Care; Medical Futility; Withholding Treatment; Professional-Family Relations; Culture; Conflict (Psychology); Religion and Psychology; Pediatric
Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive therapies considered futile and burdensome by a wide range of medical and lay people can cause considerable problems and be very difficult to resolve. While it is vital to support families in such difficult times, we are increasingly concerned that deeply held belief in religion can lead to children being potentially subjected to burdensome care in expectation of 'miraculous' intervention. We reviewed cases involving end-of-life decisions over a 3-year period. In 186 of 203 cases in which withdrawal or limitation of invasive therapy was recommended, agreement was achieved. However, in the 17 remaining cases extended discussions with medical teams and local support mechanisms did not lead to resolution. Of these cases, 11 (65%) involved explicit religious claims that intensive care should not be stopped due to expectation of divine intervention and complete cure together with conviction that overly pessimistic medical predictions were wrong. The distribution of the religions included Protestant, Muslim, Jewish and Roman Catholic groups. Five of the 11 cases were resolved after meeting religious community leaders; one child had intensive care withdrawn following a High Court order, and in the remaining five, all Christian, no resolution was possible due to expressed expectations that a 'miracle' would happen.
2013-09
Brierley J; Linthicum J; Petros A
Journal Of Medical Ethics
2013
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).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100104" target="_blank" rel="noreferrer">10.1136/medethics-2011-100104</a>
Characteristics of deaths occurring in hospitalised children: changing trends
ICU Decision Making
BACKGROUND: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life‐limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. OBJECTIVES: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. METHODS: Routine administrative data from one large tertiary‐level UK children's hospital was examined over a 7‐year period (1997–2004) for children aged 0–18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases‐10 codes) were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test (non‐parametric variables), χ(2) test (proportions) and Cochran–Armitage test (linear trends). RESULTS: Of the 1127 deaths occurring in hospital over the 7‐year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in‐hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0–23.25 days) on a hospital ward before being admitted to an ICU where they died. CONCLUSIONS: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.
2007-05
Ramnarayan P; Craig F; Petros A; Pierce C
Journal Of Medical Ethics
2007
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).
Journal Article
<a href="http://doi.org/10.1136/jme.2005.015768" target="_blank" rel="noreferrer">10.1136/jme.2005.015768</a>