BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.
METHODS: This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.
RESULTS: Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).
CONCLUSIONS: The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications.
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home.
ELIGIBILITY CRITERIA: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care.
SAMPLE: Twenty-three papers met the eligibility criteria and were included in the review.
RESULTS: Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care.
DISCUSSION AND APPLICATION TO PRACTICE: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families.
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received.
OBJECTIVES: The objective of this study was to explore the concerns of parents who have a child in home-based PPC.
METHODS: Semi-structured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis.
RESULTS: Parents' concerns clustered into four main themes: (1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; (2) uncertainty regarding their child's diagnosis, prognosis, and treatments; (3) their child's death (e.g., the process of dying and when it will occur); and (4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible.
CONCLUSION: Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC, and point to critical areas for intervention for seriously ill children and the broader family.
OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited in the Charting the Territory (CTT) study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders and care provided preceding and during the end-of-life.
METHODS: Of the 275 children enrolled in the CTT study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions and medical information were collected via chart review, interviews and surveys.
RESULTS: 51 of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n=2) to time of death (n=3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children.
CONCLUSIONS: While much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering.
To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills and the consistency of professional assessments on these aspects. Using an adapted version of the "Common European Framework of Reference for Languages", the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (N = 114) were assessed by (a) medical staff and (b) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level while 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution there can be discrepancies between the language assessments of different professions.
Lockdown measures have had an impact on the stress levels and mental health of parents and children during the COVID-19 pandemic. However, the effect that lockdown has had on paediatric palliative care (PPC) has been poorly investigated. We measured adaptive responses and routine changes in 88 families, by asking parents covered by our PPC Network to complete a telephone questionnaire that was administered by a Network psychologist between 7 and 17 April 2020.
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.
METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions.
RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The Children’s Hospital at Montefiore (CHAM), a 130-bed facility attached to an adult hospital, accommodated adult patients in the PICU, inpatient wards, and post-anesthesia care unit. CHAM pediatric faculty and housestaff were deployed to serve as primary care physicians and subspecialists for these adults (up to 84 years old), anticipating up to 100 patients.
Among many challenges faced was the commitment by the pediatric faculty and staff to find a way to continue family-centered and compassionate care in the face of social distancing rules during the pandemic. Our goal was to preserve the patient’s humanity and their relationship to family and friends who were not permitted to visit. There is an ethical imperative to provide palliative care during a crisis when lives will be lost. As a result, we chose to rapidly expand our palliative care capabilities by training frontline medical providers and enlarging our pediatric palliative care presence to serve each adult admitted with COVID-19.
La découverte d’une anomalie fœtale sévère in utero peut conduire à une décision d’interruption médicale de grossesse (IMG) et aussi à la prise en charge palliative de l’enfant à la naissance. Dans ce contexte, une pratique interdisciplinaire s’est rapidement imposée. La rencontre des parents et du pédiatre en période prénatale permet d’expliquer le retentissement de la pathologie sur un futur enfant, et ce quel que soit le choix final par rapport à la grossesse. Dans le contexte d’une prise en charge palliative à la naissance, cela permet d’anticiper cette prise en charge particulière en insistant sur la valeur du temps de vie et de la rencontre. Les équipes obstétricales et néonatales peuvent écouter les attentes des futurs parents et leur faire des propositions en leur laissant le temps de la réflexion. L’anticipation commune des interactions entre les décisions obstétricales et pédiatriques permet de viser une cohérence du sens donné à ce parcours au cours duquel des équipes différentes doivent se succéder auprès des parents et de l’enfant dans une démarche néanmoins commune.
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty.
Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role.
Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child.
Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult.
OBJECTIVES: We sought to describe patient characteristics used by oncologists for PC referral and identify ways to improve PC integration into the care for children with cancer.
METHODS: This mixed-methods study used semi-structured audiotaped interviews to explore the patient or disease characteristics used by pediatric oncology providers to trigger PC referral. Conventional content analysis was applied to interview transcripts.
RESULTS: 77 participants with diverse experience were interviewed. Over 75% of participants reported that PC was consulted "too late" and cited communication and systems issues as the top barriers. A majority of participants (85%) stated that a screening tool would be helpful to standardize referral practices to PC. Characteristics such as poor prognosis (88%), symptom management (86%), comorbidities (65%), and psychosocial needs (65%) were commonly reported triggers that should initiate PC consultation. However, when presented with case scenarios that included these characteristics, participants did not consistently identify the PC triggers. Nearly 50% of participants stated they had received some formalized PC training, however only one third of these participants noted completing a PC rotation.
CONCLUSIONS: Our findings suggest that pediatric oncologists are committed to improving the integration of PC for their patients and that standardization of referral practices, through the use of a screening tool, would be of benefit. Additional PC education might reinforce pediatric oncologists' recognition of palliative care triggers.
Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of 'good death' for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.
BACKGROUND: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown.
METHODS: A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death.
RESULTS: Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities.
CONCLUSIONS: Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.
INTRODUCTION: Studies have suggested 5-20% of paediatric ICU patients may receive care felt to be futile. No data exists on the prevalence and impact of futile care in the Paediatric Cardiac ICU. The aim is to determine the prevalence and economic impact of futile care.
MATERIALS AND METHOD: Retrospective cohort of patients with congenital cardiac disease 0-21 years old, with length of stay >30 days and died (2015-2018). Documentation of futility by the medical team was retrospectively and independently reviewed.
RESULTS: Of the 127 deaths during the study period, 51 (40%) had hospitalisation >30 days, 13 (25%) had received futile care and 26 (51%) withdrew life-sustaining treatment. Futile care comprised 0.69% of total patient days with no difference in charges from patients not receiving futile care. There was no difference in insurance, single motherhood, education, income, poverty, or unemployment in families continuing futile care or electing withdrawal of life-sustaining treatment. Black families were less likely than White families to elect for withdrawal (p = 0.01), and Hispanic families were more likely to continue futile care than non-Hispanics (p = 0.044).
CONCLUSIONS: This is the first study to examine the impact of futile care and characteristics in the paediatric cardiac ICU. Black families were less likely to elect for withdrawal, while Hispanic families more likely to continue futile care. Futile care comprised 0.69% of bed days and little burden on resources. Cultural factors should be investigated to better support families through end-of-life decisions.
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.
METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.
RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.
CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
CONTEXT: Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.
OBJECTIVE: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.
METHODS: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.
RESULTS: Forty-seven parents participated. Overall, highest-rated domains included Physical Aspects of Care: Symptom Management, Psychological/EmotionalSupportfor the Child, and Care Coordination. Lowest-rated domains included Spiritual and Religious Aspects of Care and Cultural Aspects of Care. In exploratory analyses, parents who had other children rated the Psychological/Emotional Aspects of Care for the Sibling(s) domain significantly higher than parents who did not have other children (P=0.02). Furthermore, bereaved parents rated the CaregiverSupportat the End of Life domain significantly higher than parents who were currently caring for their child (P=0.04). No other significant differences in domain ratings were observed.
CONCLUSIONS: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.
Objective: The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland, Australia.
Methods: An observational study using linked administrative health data from the 2011 and 2016 calendar years was performed for all individuals with an International Statistical Classification of Diseases and Related Health Problems 10th Revision Australian Modification code relating to a life-limiting condition eligible for palliative care recorded against an admission to a public or private hospital and health service provider in Queensland or against a cause or underlying cause of death in the Queensland Registrar General Deaths.
Results: The overall prevalence of life-limiting conditions per 10000 population increased from 35.2 (95% confidence interval (CI) 34.2-36.2) in 2011 to 43.2 (95% CI 42.1-44.4) in 2016. This increase in prevalence was greatest for children <1 year of age and for those who identified as Aboriginal and Torres Strait Islander.
Conclusion: This study has estimated the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland. Estimation of the number of children and young people with life-limiting conditions can inform health service planning for paediatric palliative care in Queensland. Future research is needed to identify the number of children and young people with life-limiting conditions who do not have an admitted episode. What is known about the topic? Data from the UK indicate that the prevalence of life-limiting conditions among children and young people is increasing. However, such data are not available for the Australian population. Because prevalence data can be affected by population characteristics, it is important to establish country-specific epidemiological data rather than extrapolating data from other countries. Country-specific data can inform health planners and policy makers of the scale of the problem within a geographical and demographic context. This is essential for Australia given the diverse geographical and demographic characteristics and specific needs of Aboriginal and Torres Strait Islander peoples. What does this paper add? This study is the first to provide an estimate of the prevalence of life-limiting conditions in children and young people aged 0-21 years in Queensland. Estimates include the prevalence of life-limiting conditions in children and young people who identify as being of Aboriginal and/or Torres Strait Islander descent. What are the implications for practitioners? The prevalence of life-limiting conditions in Queensland is greater than previously thought. There is a need to grow both a generalist and specialist paediatric palliative care workforce in response to this increasing prevalence. The estimates of prevalence proportions from this study provide the foundation on which future health service activities can be built because they provide country-specific clinical and demographic characteristics.
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (=10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with =10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education