Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Most pediatric clinicians aspire to promote the physical, emotional, and developmental well-being of children, hoping to bestow a long and healthy life. Yet, some infants, children, and adolescents confront life-threatening illnesses and life-shortening conditions. Over the past 70 years, the clinician's response to the suffering of these children has evolved from veritable neglect to the development of pediatric palliative care as a subspecialty devoted to their care. In this article, we review the history of how clinicians have understood and responded to the suffering of children with serious illnesses, highlighting how an initially narrow focus on anxiety eventually transformed into a holistic, multidimensional awareness of suffering. Through this transition, and influenced by the adult hospice movement, pediatric palliative care emerged as a new discipline. Becoming a discipline, however, has not been a panacea. We conclude by highlighting challenges remaining for the next generation of pediatric palliative care professionals to address.
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents.
STUDY DESIGN: A self-reported questionnaire was administered to assess frequency of withholding and withdrawing intensive care at the respondent's facility, the physician's degree of affirming various beliefs about end-of-life care that was compared to 7 European countries, their self-reported ACP practices and perceived barriers to ACP. Three neonatologists at all 298 facilities accredited by the Japan Society for Neonatal Health and Development were surveyed, with 572 neonatologists at 217 facilities responding.
RESULTS: At 76% of facilities, withdrawing intensive care treatments was "never" done, while withholding intensive care had been done "sometimes" or more frequently at 82% of facilities. Japanese neonatologists differed from European neonatologists regarding their degree of affirmation of 3 out of 7 queried beliefs about end-of-life care. In hospitals that were more likely to "sometimes" (or more often) withdraw treatments, respondents were less likely to affirm beliefs about doing "everything possible" or providing the "maximum of intensive care". Self-reported ACP practices did not vary between neonatologists based on their hospital's overall pattern of withholding or withdrawing treatments.
CONCLUSION: Among NICU facilities in Japan, 21% had been sometimes withdrawing LSI and 82% had been "sometimes" withholding LSI. Institutional treatment practices may have a strong association with physicians' beliefs that then affect end-of-life discussions, but not with self-reported ACP practices.
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.
Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.
Design: Prospective cohort study.
Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.
Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.
Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.
Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.
OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.
METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.
RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.
CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
CONTEXT: Do-not-resuscitate (DNR) orders are common among children receiving palliative care, who may nevertheless benefit from surgery and other procedures. Although anesthesia, surgery, and pediatric guidelines recommend systematic reconsideration of DNR orders in the perioperative period, data regarding how clinicians evaluate and manage DNR orders in the perioperative period is limited.
OBJECTIVES: Evaluate perioperative management of DNR orders at a tertiary care children's hospital.
METHODS: We reviewed electronic medical records for all children with DNR orders in place within 30 days of surgery at a tertiary care pediatric hospital from 2/1/2016 - 8/1/2017. Using standardized case report forms, we abstracted the following from physician notes: (A) patient/family wishes with respect to the DNR, (B) whether pre-operative DNRs were continued, modified, or suspended during the perioperative period, and (C) whether life threatening events occurred in the perioperative period. Based on data from these reports, we created a process flow diagram regarding DNR order decision making in the perioperative period.
RESULTS: Twenty-three patients aged six days to 17 years had a DNR in place within 30 days of 29 procedures. No documented systematic reconsideration took place for 41% of procedures. DNR orders were modified for two (7%) procedures, and suspended for fifteen (51%). Three children (13%) suffered life threatening events. We identified four time points where systematic reconsideration should be documented in the medical record, recommended personnel, and important discussion points at each time point.
CONCLUSION: Opportunities exist to improve how DNR orders are managed during the perioperative period.
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care.
METHODS: We systematically searched online databases to identify articles relating to differences/disparities in pediatric palliative and end-of-life care, retaining 19 studies for evaluation. We then augmented this search with a broader review of the literature on the mechanisms of differences/disparities in adult palliative and end-of-life care, general pediatrics, adult medicine, and pain.
RESULTS: The concept of reciprocal interaction can organize and illuminate interacting mechanisms across 3 levels of human organization, namely, broader contextual influences on patients and clinicians, specific patient-provider engagements, and specific patients. By using this rubric, we identified 10 distinct mechanisms proposed in the literature. Broader contextual influences include health care system structures; access to care; and poverty, socioeconomic status, social class, and family structure. Patient-clinician engagements encompass clinician bias, prejudice, and stereotypes; concordance of race; quality of information exchange; and trust. Patient-specific features include perceptions of control; religion and spirituality; and medical conditions.
CONCLUSIONS: Differences and disparities in pediatric palliative and end-of-life care can be understood as arising from various mechanisms that interact across different levels of human organization, and this interactive multilevel model should be considered in designing studies or planning interventions to understand differences and to ameliorate disparities.
BACKGROUND: Pediatric cancer-related fatigue is prevalent and significantly impairs health-related quality of life, yet its patterns and correlates are poorly understood. The objectives of this study were to describe fatigue as prospectively reported by children with advanced cancer and to identify the factors associated with fatigue and associated distress.
METHODS: Children (age =2 years) with advanced cancer (N = 104) or their parents at 3 academic hospitals reported symptoms at most weekly over 9 months using the computer-based Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST) system. PediQUEST administered a modified version of the Memorial Symptom Assessment Scale (PQ-MSAS) as part of a randomized controlled trial. Clinical information was abstracted from medical records. Primary outcomes were: 1) fatigue prevalence (yes/no response to PQ-MSAS fatigue item) and 2) fatigue distress (composite score of severity, frequency, and bother). Multivariable models were constructed to identify factors independently associated with fatigue prevalence and scores reflecting fatigue distress (ie, burden).
RESULTS: Of 920 reports, 46% (n = 425) noted fatigue. When reported, fatigue was of high frequency in 41% of respondents (n = 174), severity in 25% of respondents (n = 107), and bother in 34% of respondents (n = 143). Most reports (84%; n = 358) were associated with scores indicating fatigue distress. In multivariable analyses, fatigue was associated with older age, lower hemoglobin, and distress from particular symptoms (anorexia, nausea, sleep disturbance, sadness, and irritability). In contrast, fatigue distress was associated with distress from nausea, cough, and pain.
CONCLUSIONS: Fatigue is common among children with advanced cancer and is often highly distressing. Interventions focused on uncontrolled symptoms may ease fatigue distress in children with advanced cancer.
BACKGROUND: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described.
METHODS: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL.
Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (ßlow-high=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (ß=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (ß=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (ß=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (ß=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (ß=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (ß=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (ß=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL.
CONCLUSIONS: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care.
METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling.
RESULTS: We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13-0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05-5.73), mostly because of code events occurring in the first 24 hours of hospitalization.
CONCLUSIONS: Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach.
METHODS: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions. Eleven pediatric oncology team members participated in four codesign sessions to discuss their experiences with initiating palliative care and to review the proposed intervention including patient case studies, techniques for managing uncertainty and negative emotions, role ambiguity, system-level barriers, and team communication and collaboration.
RESULTS: The codesign process showed that the participants were strong supporters of palliative care, members of different teams had preferences for different materials that would be appropriate for their teams, and that while participants reported frustration with timing of palliative care, they had difficulty suggesting how to change current practices.
CONCLUSIONS: The current project demonstrated the feasibility of collaborating with pediatric oncology clinicians to develop interventions about introducing palliative care. The procedures and results of this project will be posted online so that other institutions can use them as a model for developing similar interventions appropriate for their needs.
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
CONTEXT: Pediatric palliative care consults for children with cancer often occur late in the course of disease and close to death, when earlier involvement would reduce suffering. The perceptions that pediatric oncology providers hold about the pediatric palliative care service (PPCS) may shape referral patterns.
OBJECTIVE: To explore how pediatric oncology providers at one institution perceived the hospital's PPCS and the way these perceptions may influence the timing of consultation.
METHODS: We conducted semi-structured qualitative interviews with pediatric oncology providers at a large children's hospital. Interviews were audio recorded, transcribed and analyzed by two coders using a modified grounded theory approach.
RESULTS: We interviewed 16 providers (10 physicians, 1 nurse practitioner, 2 social workers, 2 psychologists and 1 child life specialist). Three core perceptions emerged: (1) the PPCS offers a diverse range of valuable contributions to the care of children with advancing cancer; (2) providers held favorable opinions about the PPCS due to positive interactions with individual palliative care specialists deemed extraordinarily emotionally skilled; and (3) there is considerable emotional labor involved in calling a PPCS consult that serves as a barrier to early initiation.
CONCLUSION: The pediatric oncology providers in our study held a highly favorable opinion about their institution's PPCS and agreed that early consultation is ideal. However, they also described that formally consulting PPCS is extremely difficult because of what the PPCS symbolizes to families and the emotional labor that the provider must manage in introducing them. Interventions to encourage the early initiation of palliative care in this population may benefit from a focus on the emotional experiences of providers.
BACKGROUND: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs.
OBJECTIVE AND METHODS: We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for children with LTI and healthy siblings with quantitative data, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family.
RESULTS: Participants included 31 parents of children with LTI who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed that parents prioritized "making sure my child feels loved" highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed-methods analysis revealed that parents engaged in a process decision making and traded-off competing demands by considering needs which ultimately transformed the meaning of parenting.
DISCUSSION: Future research can further examine trade-offs and associated effects, how to support parent problem-solving and decision-making around trade-offs, and how to best offer social services alongside illness-directed care.
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development.
Objectives. We tested whether local cultural and social values regarding the use of health care are associated with the likelihood of home death, using variation in local rates of home births as a proxy for geographic variation in these values. Methods. For each of 351110 adult decedents in Washington state who died from 1989 through 1998, we calculated the home birth rate in each zip code during the year of death and then used multivariate regression modeling to estimate the relation between the likelihood of home death and the local rate of home births. Results. Individuals residing in local areas with higher home birth rates had greater adjusted likelihood of dying at home (odds ratio [OR]=1.04 for each percentage point increase in home birth rate ; 95% confidence interval [CI]=1.03,1.05). Moreover, the likelihood of dying at home increased with local wealth (OR=1.04 per $10000 ; 95% CI=1.02,1.06) but decreased with local hospital bed availability (OR=0.96 per 1000 beds ; 95% CI=0.95,0.97). Conclusions. The likelihood of home death is associated with local rates of home births, suggesting the influence of health care use preferences.
Origine : BDSP. Notice produite par INIST-CNRS Iq9R0xHr. Diffusion soumise à autorisation
Objectifs : Nous avons testé si les valeurs culturelles et sociales locales concernant l'utilisation des soins de santé sont associées à la probabilité de décès à domicile, en utilisant la variation dans les taux locaux de naissances à domicile comme un proxy pour la variation géographique de ces valeurs.
Méthodes : Pour chacun des 351 110 adultes décédés dans l'état de Washington, morts entre 1989 et 1998, nous avons calculé le taux de naissance à domicile dans chaque département durant l'année de décès et nous avons utilisé un modèle de régression multivariée pour estimer la relation entre la probabilité de décès à domicile et le taux local de naissances à domicile.
Résultats : Les individus résidant dans les zones locales avec de forts taux de naissance à domicile ont une plus forte probabilité ajustée de mourir à domicile (odds ratio [OR] = 1,04 pour chaque augmentation de point de pourcentage dans le taux de naissance à domicile ; intervalle de confiance à 95 % [IC] = 1,03 - 1,05). De plus, la probabilité de mourir à domicile augmente avec la richesse locale (OR = 1,04 par 10 000 $ ; IC 95 % = 1,02 - 1,06) mais diminue avec la disponibilité de lits hospitaliers locaux (OR = 0,96 pour 1 000 lits ; IC 95 % = 0,95 - 0,97).
Conclusions : La probabilité de décès à domicile est associée aux taux locaux de naissances à domicile, suggérant l'influence de préférences d'utilisation de soins de santé.
[Traduction du résumé fourni par le producteur]
Origine : BDSP. Notice produite par INIST-CNRS Iq9R0xHr. Diffusion soumise à autorisation
Cette article pose les bases d'un modèle mettant en place un réseau collaboratif entre l'ensemble des acteurs des soins palliatifs : patients, parents, famille, infirmières, soignants, travailleurs sociaux, etc. L'article comprend quatre parties : "qu'entend-on par communication collaborative", "concepts clés", "questions générales", "exemples et conseils".
La fin de vie est un moment critique dans les hôpitaux pédiatriques. L'objectif de cette étude est de repérer le nombre et l'environnement des décès, de décrire les causes chroniques de complications et de tester l'hypothèse que les causes chroniques de complication sont à l'origine d'une période plus longue de ventilation et d'hospitalisation avant la mort. Les résultats vont confirmer ce postulat.