Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.

Parental decision-making preferences in the pediatric intensive care unit.

OBJECTIVE: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. DESIGN: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010. SETTING: Pediatric intensive care unit at The Children's Hospital of Philadelphia. PARTICIPANTS: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. INTERVENTIONS: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. MEASUREMENTS AND MAIN RESULTS: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. CONCLUSIONS: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.

The dynamic system of parental work of care for children with special health care needs: a conceptual model to guide quality improvement efforts.

BACKGROUND: The work of care for parents of children with complex special health care needs may be increasing, while excessive work demands may erode the quality of care. We sought to summarize knowledge and develop a general conceptual model of the work of care. METHODS: Systematic review of peer-reviewed journal articles that focused on parents of children with special health care needs and addressed factors related to the physical and emotional work of providing care for these children. From the large pool of eligible articles, we selected articles in a randomized sequence, using qualitative techniques to identify the conceptual components of the work of care and their relationship to the family system. RESULTS: The work of care for a child with special health care needs occurs within a dynamic system that comprises 5 core components: (1) performance of tasks such as monitoring symptoms or administering treatments, (2) the occurrence of various events and the pursuit of valued outcomes regarding the child's physical health, the parent's mental health, or other attributes of the child or family, (3) operating with available resources and within certain constraints (4) over the passage of time, (5) while mentally representing or depicting the ever-changing situation and detecting possible problems and opportunities. These components interact, some with simple cause-effect relationships and others with more complex interdependencies. CONCLUSIONS: The work of care affecting the health of children with special health care needs and their families can best be understood, studied, and managed as a multilevel complex system.

Putting on a happy face: emotional expression in parents of children with serious illness.

CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context. METHODS: Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semistructured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the LIWC program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders. RESULTS: Parents who used more positive words when speaking about the illnesses of their children and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: increase in the standard deviation of positive emotional expression was associated with an unadjusted 7.4% decrease in the self-reported positive affect (P = 0.015) and an adjusted 7.0% decrease in the self-reported positive affect (P = 0.057) after modeling for potential confounders. Increase in the standard deviation of negative emotional expression was associated with an adjusted 9.4% increase in the self-reported negative affect (P = 0.036). CONCLUSION: The inverse relationship between parents' positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.

Family factors affect clinician attitudes in pediatric end-of-life decision making: a randomized vignette study.

CONTEXT: Conflicts between families and clinicians in pediatric end-of-life (EOL) care cause distress for providers, dissatisfaction for patients' families, and potential suffering for terminally ill children. OBJECTIVES: We hypothesized that family factors might influence clinician decision making in these circumstances. METHODS: We presented vignettes concerning difficult EOL decision making, randomized for religious objection to therapy withdrawal and perceived level of family involvement, to clinicians working in three Children's Hospital intensive care units. Additionally, attitudes about EOL care were assessed. RESULTS: Three hundred sixty-four respondents completed the questionnaire, for an overall response rate of 54%. Respondents receiving the "involved family" vignette were more likely to agree to continue medical care indefinitely (P<0.0005). Respondents were marginally more likely to pursue a court-appointed guardian for those patients whose families had nonreligious objections to withdrawal (P=0.05). Respondents who thought that a fear of being sued affected decisions were less likely to pursue unilateral withdrawal (odds ratio 0.8, 95% CI=0.6-0.9). Those who felt personal distress as a result of difficult EOL decision making, thought they often provided "futile" care, or those who felt EOL care was effectively addressed at the institution were less likely to want to defer to the parents' wishes (range of odds ratios 0.7-1). CONCLUSION: In this randomized vignette study, we have shown that family factors, particularly how involved a family seems to be in a child's life, affect what clinicians think is ethically appropriate in challenging EOL cases. Knowledge of how a family's degree of involvement may affect clinicians should be helpful to the clinical ethics consultants and offer some degree of insight to the clinicians themselves.

Parents' satisfaction with repair of paediatric cleft lip/cleft palate in Honduras.

BACKGROUND: Operation Smile is a non-profit organization that provides free cleft lip and cleft palate repair to impoverished children worldwide. To date, no longitudinal studies of satisfaction among these patients or their families have been published. OBJECTIVES: In a cohort of parents of children receiving cleft lip/cleft palate repair, to assess parental satisfaction and fulfillment of expectations. METHODS: A prospective cohort study with pre-operative and 6-month post-operative interviews of parents of 45 patients of the Operation Smile mission in Tegucigalpa, Honduras, 2007 was undertaken. Patients were recruited from a total of 96 who underwent surgery, with follow-up data available for 22 of them (49% of participants). Pre-operative interviews concerned expectations regarding surgery, and post-operative interviews addressed surgical outcomes and satisfaction. RESULTS: Mean patient age was 4 years (range 3 months to 17 years); 51% underwent isolated cleft lip repair, and 49% cleft palate repair. This was the first surgery for 53%, the remainder having had previous surgery on one to six occasions. Pre-operatively, parents expressed expectations that speech (n = 26), appearance (n = 21) or feeding (n = 17) would improve. Among the 22 re-interviewed 6 months after surgery, two had experienced minor and one major post-operative complications. Only 14 of 22 had all their pre-operative expectations fulfilled. All except one parent reported satisfaction with the surgery. CONCLUSION: Despite unmet expectations, parents of children who received medical mission surgery for cleft lip or cleft palate express satisfaction with outcomes. Other factors are likely to influence expressions of satisfaction in this setting.

Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States.

BACKGROUND AND OBJECTIVE: Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed. METHODS: Retrospective repeated cross-sectional assessment of hospitalization data from the nationally representative US Kids' Inpatient Database, for the years 1997, 2000, 2003, 2006, and 2009. Included hospitalizations were of patients aged 0 to 20 years with a diagnosis of trisomy 13 or trisomy 18. RESULTS: The number of hospitalizations for each trisomy type ranged from 846 to 907 per year for trisomy 13 (P = .77 for temporal trend) and 1036 to 1616 per year for trisomy 18 (P < .001 for temporal trend). Over one-third (36%) of the hospitalizations were of patients older than 1 year of age. Patients underwent a total of 2765 major therapeutic procedures, including creation of esophageal sphincter (6% of hospitalizations; mean age 23 months), repair of atrial and ventricular septal defects (4%; mean age 9 months), and procedures on tendons (4%; mean age 8 years). CONCLUSIONS: Children with trisomy 13 and trisomy 18 receive significant inpatient hospital care. Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.

Prevalence of polypharmacy exposure among hospitalized children in the United States.

OBJECTIVE: To assess the prevalence and patterns of exposure to drugs and therapeutic agents among hospitalized pediatric patients. DESIGN: Retrospective cohort study. SETTING: A total of 411 general hospitals and 52 children's hospitals throughout the United States. PATIENTS: A total of 587 427 patients younger than 18 years, excluding healthy newborns, hospitalized in 2006, representing one-fifth of all pediatric admissions in the United States. MAIN OUTCOME MEASURES: Daily and cumulative exposure to drugs and therapeutic agents. RESULTS: The most common exposures varied by patient age and by hospital type, with acetaminophen, albuterol, various antibiotics, fentanyl, heparin, ibuprofen, morphine, ondansetron, propofol, and ranitidine being among the most prevalent exposures. A considerable fraction of patients were exposed to numerous medications: in children's hospitals, on the first day of hospitalization, patients younger than 1 year at the 90th percentile of daily exposure to distinct medications received 11 drugs, and patients 1 year or older received 13 drugs; in general hospitals, 8 and 12 drugs, respectively. By hospital day 7, in children's hospitals, patients younger than 1 year at the 90th percentile of cumulative exposure to distinct distinct medications had received 29 drugs, and patients 1 year or older had received 35; in general hospitals, 22 and 28 drugs, respectively. Patients with less common conditions were more likely to be exposed to more drugs (P = .001). CONCLUSION: A large fraction of hospitalized pediatric patients are exposed to substantial polypharmacy, especially patients with rare conditions.

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care.

BACKGROUND: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. METHODS: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. RESULTS: Four dominant interrelated themes permeated parents' discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents' effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child's best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. CONCLUSIONS: Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.

How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times.

BACKGROUND: How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described. METHODS: Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus. RESULTS: Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that "everything happens for a reason." RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities. CONCLUSIONS: RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care.

Pediatric nurses' individual and group assessments of palliative, end-of-life, and bereavement care.

BACKGROUND: Although pediatric nurses working in children's hospitals often provide care to dying children, little is known about their palliative care beliefs and experiences as individuals or members of groups within the hospital. OBJECTIVE: To describe pediatric nurses' ratings of palliative care goals and problems, as individuals and members of clusters of nurses with similar views, and nurses' degree of collaboration with an inpatient palliative care team across hospital units. METHOD: A cross-sectional survey of nurses at a freestanding children's hospital in 2005. RESULTS: Nurses rated the most important goals as managing pain, maintaining the child's quality of life, and improving communication. Commonly cited problems were lack of opportunity to debrief after a patient's death, uncertainty about the goals of care, and the health care team's reluctance to discuss hospice with family. Based on individual views about goals and problems, nurses clustered into 5 groups that differed in terms of the adamancy of their views and the scope of the goals and problems they considered important or significant. The hospital unit was the most important factor in predicting nurses' degree of collaboration with the palliative care team even after accounting for individual characteristics. CONCLUSIONS: Pediatric nurses broadly endorse both the importance of palliative care goals and the presence of problems yet perceive the importance of these goals and problems differently. Further, they vary in their level of collaborative practice with a palliative care team in ways that should be accounted for when planning and implementing palliative care programs.

Pediatric palliative care patients: a prospective multicenter cohort study.

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008. RESULTS: There were 515 new (35.7%) or established (64.3%) patients who received care from the 6 programs during the 3-month enrollment interval. Of these, 54.0% were male, and 69.5% were identified as white and 8.1% as Hispanic. Patient age ranged from less than one month (4.7%) to 19 years or older (15.5%). Of the patients, 60.4% lived with both parents, and 72.6% had siblings. The predominant primary clinical conditions were genetic/congenital (40.8%), neuromuscular (39.2%), cancer (19.8%), respiratory (12.8%), and gastrointestinal (10.7%). Most patients had chronic use of some form of medical technology, with gastrostomy tubes (48.5%) being the most common. At the time of consultation, 47.2% of the patients had cognitive impairment; 30.9% of the cohort experienced pain. Patients were receiving many medications (mean: 9.1). During the 12-month follow-up, 30.3% of the cohort died; the median time from consult to death was 107 days. Patients who died within 30 days of cohort entry were more likely to be infants and have cancer or cardiovascular conditions. CONCLUSIONS: PPC teams currently serve a diverse cohort of children and young adults with life-threatening conditions. In contrast to the reported experience of adult-oriented palliative care teams, most PPC patients are alive for more than a year after initiating PPC.

Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study.

OBJECTIVE: To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders. DESIGN: Prospective cohort study. SETTING: Children's hospital and surrounding region. PARTICIPANTS: Thirty-three pediatric patients receiving palliative care consultative services who did not have LOI orders at time of cohort entry and their 43 parental adults. MAIN EXPOSURES: Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories. MAIN OUTCOME MEASURE: Enactment of an LOI order after entry into the cohort. RESULTS: During the 6 months of observation, 14 patients (42.4%) had an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order (adjusted odds ratio [AOR], 2.73; 95% confidence interval [CI], 1.04-7.22). Increased odds of LOI enactment were associated to nonsignificant degrees with lower levels of parental positive affect (AOR, 0.44; 95% CI, 0.17-1.12), higher levels of parental negative affect (AOR, 2.02; 95% CI, 0.98-4.16), and parental perceptions of worsening health over time (AOR, 1.72; 95% CI, 0.73-4.07). CONCLUSION: For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study.

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death. METHODS: Retrospective cohort study of 0-21 year old patients admitted to Pennsylvania hospitals from 1994-2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths. RESULTS: Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint. CONCLUSIONS: Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.