Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy.
Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources.
Objective: Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale.
Design: Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC).
Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed.
Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.
AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA.
DESIGN: Mixed-methods quasi-experimental study.
PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU.
RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death.
CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
CONTEXT: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood.
OBJECTIVE: To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community.
METHODS: A cross-sectional survey was developed, pilot-tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted sub-analyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables.
RESULTS: A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (p<0.001), receipt of formal pediatric PPHC training (p<0.001), and higher hospice- (p=0.01) and individual-level frequency of PPHC provision (p<0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life.
CONCLUSION: Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community.
BACKGROUND: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.
OBJECTIVE: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses.
METHODS: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.
RESULTS: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.
CONCLUSIONS: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions.
DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed.
SETTING: The Netherlands.
PARTICIPANTS: 64 parents of 44 children.
RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person.
CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit. High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains. Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families.
Aim: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents’ coping strategies, and map these onto an existing theoretical framework.
Methods: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children’s hospice. Analysis focused on coping strategies, and mapping these onto the framework.
Results: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others.
Conclusion: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit.
Methods: A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records.
Results: One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn.
Conclusions: The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care.
Purpose: This study aims to develop a scale to assess the stress of nurses caring for terminally ill children and to test the validity and reliability of the scale.
Background: Nurses caring for children experience various stressors that are different from those experienced by nurses caring for adult patients. It is important to understand the level of stress of nurses caring for dying children and their families. Instruments to measure these stress levels, however, are not available.
Design: This study used a methodological approach.
Method: The initial items were identified through literature reviews and in-depth interviews. Content validation of the items was evaluated by seven experts. Participants were 357 pediatric nurses working at 11 institutions in six cities. Data were analyzed using item analysis, exploratory and confirmatory factor analysis, internal consistency, and test–retest. This study followed the STROBE checklist.
Findings: The final scale consisted of 22 items chosen and classified into 5 factors (psychological difficulties, conflict with parents, difficulties in communication, lack of end-of-life care knowledge, and restricted working environment), which explained 61.13% of the total variance. The 5-subscale model was validated by confirmatory factor analysis. Cronbach's alpha for the total item was 0.90, and the intra-class correlation coefficient was 0.89.
Conclusion: This scale can be used to contribute toward the assessment of stress among nurses performing end-of-life care for children.
Practice implications: This scale will contribute to the improvement of the quality of life of not only nurses, but also children and their families in pediatric settings.
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited.
Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes.
Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3–9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170–630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included “Learn how to manage, not just lead,” “Negotiate everything before you sign anything,” and “Balance patient volume with scope of practice.”
Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U.S. pediatric surgical patients.
Methods: We retrospectively evaluated the mortality of all children who underwent an inpatient surgery between 2012 and 2017 from the National Surgical Quality Improvement Program. We used log-binomial models to estimate the relative risk (RR) and 95% confidence interval (CI) of DNR use comparing white with African American (AA) children. To estimate the risk-adjusted difference in DNR orders, we controlled the analyses for age, prematurity status, emergent case status, American Society of Anesthesiologists class, year of operation, surgical specialty, and surgical complexity.
Results: Between 2012 and 2017, a total of 276,917 children underwent inpatient surgery, of whom 0.8% (n = 1601) died within 30 days of operation. Of the 1601 mortality cases, we retained 1212 children who were of either AA (26.0%, n = 350) or white (63.9%, n = 862) race. Most children were neonates, had an American Society of Anesthesiologists class =4 (70.0%, n = 811), and developed one or more postoperative complications (68.7%, n = 833). Overall, AA children were more likely to be neonates at the time of surgery (42.0% vs. 40.3%, p < 0.001), to be premature (66.3% vs. 49.0%, p < 0.001), and develop one or more postoperative complications (73.7% vs. 66.7%, p = 0.017). White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09–8.56, p = 0.044).
Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being “sicker” and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.
Aim: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the pediatrics oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort to a cohort of patients resident in the same area treated before the introduction of early palliative care.
Methods: A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients’ problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009-2014.
Results: Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumors or sarcomas, were referred to the team. Comparing the results with the previous cohort there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time . From 2015 none of the patients died in an intensive care unit.
Conclusion: Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage.
Objective: to describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016.
Study design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics.
Results: There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home.
Conclusions: Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses.
The Veneto region of northern Italy, which has about 5 million inhabitants, was the second area of the country, after Lombardy, to face the spread of COVID-19. After the first case on February 21, 2020, the number of cases increased exponentially, and lockdown was enforced. The regional healthcare system was forced to implement appropriate measures to protect patients and healthcare providers from the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, which causes COVID-19, while ensuring continued care.
Objective: To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit.
Design: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes.
Interventions: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes.
Conclusions: Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.
Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process.
Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships.
Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents.
Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.