Prescription opioids are among the most effective analgesics to treat moderate to severe pain; however, little is known about the use of prescription opioids in children, particularly those receiving an extended-release formulation for the treatment of chronic pain. In this retrospective study, the authors determined the prevalence of prescription opioid use among 7–17-year-old children and associated comorbid health conditions from 2010 to 2013 using Truven Health MarketScan (MarketScan) and Optum Clinformatics DataMart (Optum). The primary end points were prevalence of using any prescription opioids, using only prescription short-acting opioids (SAOs), and at least one prescription of a long-acting opioid (LAO). The prevalence of prescription opioid use among children is non-negligible and has been trending downwards: 6.90% in 2010 and 5.93% in 2013 using MarketScan and a similar trend using Optum: 5.47% in 2010 and 4.51% in 2013. Very few children had claims for LAOs, with only 0.04% (4979 children) in MarketScan and 0.03% (1117 children) in Optum. Given the very small number of children, primarily in the 12–17 age group, who are prescribed LAOs, there is a need to focus on a better understanding of the patterns of SAO use in children.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation.
Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics.
Methods: Funded through a US$1.6 million National Institutes of Health / National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children.
Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach future "Trainers," thus becoming "Master Facilitators". Between 2012-May 2019 a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three PDWs. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish.
Participants: overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Participants subsequently anticipated improvements in patient care for children with serious illness at their home institutions.
Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Introduction: Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services.
Sources of data: Published research, Together for Short Lives.
Areas of agreement: The services hospices offer are highly valued by families.
Areas of controversy: It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector.
Growing points: Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care.
Areas timely for developing research: If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.
Aim: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.
Methods: Physicians from the six cancer centres in Sweden took part in focus group discussions from December 2017 and May 2018 and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.
Results: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.
Conclusion: Physicians working in paediatric oncology perceived challenges and facilitating factors in their communication with families when a cure was not an option. Training to overcome communication issues could support the early integration of palliative care and curative treatment.
Objectives: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.
Design: Thematic analysis of incidental data from a larger grounded theory study.
Setting: Four Australian PICUs.
Subjects: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.
Measurements and main results: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.
Conclusions: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.
Each year, more than 500,000 children in the United States cope with life-threatening conditions. Many are hospitalized for long periods for curative treatment, and some remain in the hospital for end-of-life care. Long inpatient stays lead to tremendous physical and emotional stress for both patients and their families, and the management of the burden associated with these periods may be improved by support provided by a comprehensive pediatric palliative care team. The team has a holistic approach, coordinates many interdisciplinary services, and addresses the physical, emotional, social, and spiritual issues that are often present at the end of life.
Background: A reality of the current political and legal environment is that while marijuana and cannabis-based products remain not approved for human consumption at the federal level in the United States, several states have authorized use for constituents. While state lines represent meaningful cultural and geographical identity markers, the reality is that patients and families readily cross state lines to access medical interventions and care.
Methods: We present the case of a six-year-old child with intractable seizures and severe neuropathic pain managed on medical marijuana (MM) in her home state of Colorado; where medicinal use of marijuana is authorized at the state level; traveling across state lines to access surgical care in Nebraska where MM is prohibited.
Conclusion: The case report shares the communication and creativity invested in adequate symptom management for this child weaned off of MM perioperatively. The case recognizes the unique complexities of shared symptom management goals within state-specific care models.
BACKGROUND AND PURPOSE: This study describes clinical outcomes of palliative radiation therapy (RT) for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in the process of developing provisions for pediatric palliative care.
METHODS AND MATERIALS: Palliative RT cases of pediatric oncology patients aged 21-years from 2010 to 2016 in two Brazil-based and one US-based (Johns Hopkins Hospital, JHH) academic centers were reviewed in this study.
RESULTS: Eighty-eight pediatric patients were treated to 131 lesions with palliative RT. Forty-nine patients from the JHH cohort comprised 84 cases and 39 patients from the Brazil cohort comprised 46 cases. The most common indication for palliative RT was pain (55% overall, 39% Brazil, 63% JHH). Sixty-seven percent of patients experienced a complete (CR) or partial response (PR) to palliative RT, 12% reported stable symptoms (SS), and 22% reported progressive symptoms (PS). The median survival from the end of palliative RT was 3.6 months (95% confidence interval (CI), 2.3-4.8 months). When treated with palliative RT for pain, 83% of patients experience CR/PR, facilitating reduction or discontinuation of opiates in 46% of these patients.
CONCLUSION: Despite different practices, the clinical results using palliative RT for pediatric patients treated in two unique healthcare environments demonstrated it is an effective tool for pediatric oncology patients across systems.
Pediatric palliative care deals with the physical, psychosocial, and spiritual concerns of patients and their families. And to do this, clinicians must use all the tools at their disposal, including pharmacological and nonpharmacological modalities. Virtual reality is quickly becoming a useful tool in many areas of medicine, including surgical planning, simulation training, rehabilitation, and pain prevention and treatment. Recently it has been used in the adult palliative care population, for symptom management, and memory and legacy creation. We present a case report for, what we believe to be, the first time in the pediatric palliative care population.
When a child needs surgery, both the surgeon and the anesthesiologist must obtain informed consent from the parents. In theory, each specialist obtains permission for their respective portion of the procedure, with the anesthesiologist only obtaining informed consent for the administration of anesthesia and management in the operating room and recovery room. However, he or she may occasionally realize that the parents have misunderstandings about what the surgery and perioperative course entail. In such cases, he or she must decide whether their role is only to discuss the issues related to anesthesia care or whether he or she should also clarify the range of expected outcomes and the postoperative course after surgery. We present a case in which such a dilemma arose and on which we sought experts in anesthesia and ethics to comment.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
This article argues that while the presence and influence of "futility" as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like "futility," claims of patient "suffering" have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like "futility," it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.
Objective: To describe how breaking bad news (BBN) is currently taught in Canadian general paediatric residency programs and the confidence level of fourth year paediatric residents (Ped-PGY4) in BBN and managing end-of-life-care (EOLC).
Methods: A prospective, cross-sectional survey of General Paediatric Residency Program Directors (PDs) and Ped-PGY4s was conducted.
Results: When learning to BBN, residents state faculty observation (22/23) and interactive workshops (14/23) are the most helpful, while PDs state interactive workshops (9/16) and deliberate practice (5/16) are ideal. Residents identified a knowledge gap and discomfort with providing anticipatory guidance, and symptom management, including prescribing opioids.
Conclusions: In the era of competency-based medical education, there is an opportunity to create a standardized national curriculum addressing universal competencies related to BBN and EOLC.
OBJECTIVE: to identify, in scientific productions, nursing interventions in palliative care in children and adolescents with cancer.
METHOD: integrative review of the literature through the databases: CINAHL, MEDLINE, IBECS, LILACS and SCIELO, carried out in October and November 2017.
RESULTS: we analyzed 18 articles that met the inclusion criteria. The results showed that, among the articles selected, Brazil is the country with the largest number of publications and that interventions such as music therapy, massage, ludic application, early consultation of palliative care, social interventions and physical exercises aimed at the resolution of a specific symptom obtained better results when compared to interventions that aimed at the comprehensiveness of palliative care.
FINAL CONSIDERATION: we conclude that greater emphasis should be given to palliative care in academic and professional training and that further studies in search of the best evidence should be conducted to support nursing Evidence-Based Practices.
BACKGROUND: A child's death affects not only family members but also healthcare professionals involved in patient care. However, the education system for bereavement care in Japan is not systematically established, and care provided is based on healthcare professionals' experiences. We aimed to investigate pediatricians' recognition of and actual circumstances involved in bereavement care in Japan.
METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected with semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis.
RESULTS: Pediatricians' recognition of bereavement care was categorized as follows: (1) developing relationships with families before a child's death is important in bereavement care; (2) after the child dies, family involvement is left to the doctor's discretion; (3) coping with a child's death myself through past experience is essential; (4) doctors involved in a child's death also experience mental burden; and (5) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (1) attention must be given to the emotions of the families who lost a child; (2) doctors' involvement with bereaved families depends on doctors' recognition and expertise.
CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systemized manner. This is necessitates improvement of the self-care of healthcare professionals for grief by improving bereavement care-related education. Additionally, healthcare professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care for families who lose a child.
PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers.
METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed.
RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons).
CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.