Development Of A Logic Model To Support A Network Approach In Delivering 24/7 Children’s Palliative Care: Part One.
Research; Palliative Care/organization & Administration
24/7; Children's Palliative Care; End Of Life; Funding Palliative Care; Logic Model; Out Of Hours; Symptom Management
BACKGROUND:
This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service approach to be generalised and replicated.
RESULTS:
Findings demonstrated that the service standards were met and exceeded expectations. Families valued the role, which enabled choice in location of care and perceived the service as a 'lifeline'.
DISCUSSION:
Team composition with the right level of specialist and advanced nursing skills, anticipating symptom-management planning, clinical supervision and funded on-call processes were key success criteria. The nursing logic model demonstrated relationships between context investments into the service and outcomes for children and families.
Maynard L; Lynn D
International Journal Of Palliative Nursing
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.12968/ijpn.2016.22.6.278
End-of- Life Decision-making For Newborns: A 12-year Experience In Hong Kong. Archives Of Disease In Childhood Fetal & Neonatal Edition
Cause Of Death; Decision Making; Female; Hong Kong; Humans; Infant; Infant Mortality/trends; Infant Newborn; Male; Retrospective Studies; Terminal Care/trends; Withholding Treatment/trends
Ethics; Palliative Care
SETTING
Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
OBJECTIVES
To determine: (1) different modes of neonatal death and changes over the past 12 years and (2) factors influencing end-of-life decision-making in Hong Kong.
DESIGN
A retrospective study was conducted to review all death cases from 2002 to 2013 in the busiest neonatal unit in Hong Kong. Modes of death, demographical data, diagnoses, counselling and circumstances around the time of death, were collected and compared between groups.
RESULTS
Of the 166 deaths, 46% occurred despite active resuscitation (group 1); 35% resulted from treatment withdrawal (group 2) and 19% occurred from withholding treatment (group 3). A rising trend towards treatment withdrawal was observed, from 20% to 47% over the 12-year period. Similar number of parents chose extubation (n=44, 27%) compared with other modalities of treatment limitation (n=45, 27%). Significantly more parents chose to withdraw rather than to withhold treatment if clinical conditions were 'stable' (p=0.03), whereas more parents chose withholding therapy if treatment was considered futile (p=0.03).
CONCLUSION
In Hong Kong, a larger proportion of neonatal deaths occurred despite active resuscitation compared with Western data. Treatment withdrawal is, however, becoming increasingly more common. Unlike Western practice, similar percentages of parents chose other modalities of treatment limitation compared with direct extubation. Cultural variance could be a reason for the different end-of-life practice adopted in Hong Kong.
Chan LC; Cheung HM; Poon TC; Ma TP; Lam HS; Ng PC
Archives Of Disease In Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1136/archdischild-2015-308659
Ethical Issues In Neonatal Intensive Care Units.
Adult; Attitude Of Health Personnel; Child; Europe; Euthanasia Passive/ethics; Humans; Infant Newborn; Intensive Care Neonatal/ethics; Italy; Morals; Parents; Withholding Treatment/ethics
Recent progress in neonatal care have significantly improved the prognosis and chances of survival of critically ill or extremely preterm neonates and have modified the limits of viability. However, in some circumstances, when the child's death can only be briefly postponed at the price of severe suffering, or when survival is associated with severe disabilities and an intolerable life for the child and his/her parents, the application of the full armamentarium of modern neonatal intensive care may not be appropriate. In such circumstances the limitation of intensive treatments (withholding or withdrawing) and shift towards palliative care, can represent a more humane and reasonable alternative. This article examines and discusses the ethical principles underlying such difficult decisions, the most frequent situations in which these decisions may be considered, the role of parents in the decisional process, and the opinions and behaviours of neonatologists of several European neonatal intensive units as reported by the EURONIC study.
Liu J; Chen X; Wang XL
Journal Of Maternal, Fetal And Neonatal Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.4415/ANN_11_03_06
Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.
Ccm; Nicu; Cardio; Cardiology; Critical Care Medicine; Education; Hematology; Heme/onc; Hospice; Neonatology; Oncology; Palliative Medicine; Pediatric Subspecialty
BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
METHODS:
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
RESULTS:
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
CONCLUSION:
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
Singh AL; Klick JC; McCracken CE; Hebbar KB
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909116643747
Healthcare Staff ’s Experience In Providing End-of-life Care To Children: A Mixed-method Review.
Healthcare Staff; Children; End Of Life; Experiences; Mixed-method Review
BACKGROUND:
Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
AIM:
The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
DATA SOURCES:
Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
DESIGN:
This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
RESULTS:
The 16 qualitative, 6 quantitative and 8 mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff's personal and professional lives, coping strategies and key approaches to help support staff in their role.
CONCLUSION:
Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing, are key strategies for improving healthcare staff's experiences, and as such the quality of care they provide.
McConnell T; Scott D; Porter S
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316647611
Household Income Determines Access To Specialized Pediatric Chronic Pain Treatment In Germany.
Socioeconomic Status (ses); Pediatrics; Chronic Pain; Health Care Delivery; Income; Inequality; Specialized Treatment
Background
Families with lower socioeconomic status (SES) often face problems with gaining access to health care services. Information is scarce on the relationship between SES and health care delivery for children suffering from chronic pain.
Methods
Families presenting to a specialized pain center (N = 1,001) provided information on ‘household income, ‘parental education’ and ‘occupation’ to aid the evaluation of their SES. To assess whether the SES of the clinical sample is representative of the general population, it was compared to data from a community sample (N = 14,558). For the clinical sample, travel distance to the clinic was described in relation to the 75 % catchment area. Multiple logistic regression was used to analyze the association between SES and the journey from outside the catchment area.
Results
The SES was significantly higher in the clinical sample than in the community sample. Within the clinical sample, the distance traveled to the pain center increased with increasing SES. The 75 % catchment area was 143 miles for families with the highest SES and 78 miles for the lowest SES. ‘Household income’ predicted travel distance (OR 1.32 (1.12–1.56)). Education and occupational status were not significant predictors of travel from outside the catchment area.
Conclusions
In Germany, specialized care for children with chronic pain is subject to disparities in access. Future activities should focus on identifying barriers to access and seeking to prevent inequalities in specialized pediatric health care delivery. Increasing the number of specialized treatment facilities could improve access to specialized pediatric pain treatment, regardless of socioeconomic determinants.
Ruhe AK; Wager J; Hirschfeld G; Zernikow B
Bmc Health Services Research
2016
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doi: 10.1186/s12913-016-1403-9
Impact Of Early Palliative Care Intervention On Maternal Stress In Mothers Of Infants Prenatally Diagnosed With Single Ventricle Heart Disease: A Randomized Clinical Trial.
Mothers; Communication; Palliative Care; Families & Family Life; Anxieties; Cardiovascular Disease
Background: Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive
invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children, pediatric
palliative care (PPC) may mitigate maternal distress. We hypothesized early PPC in the SV population may have the same beneficial effect
upon mothers.
Methods: In this pilot trial of early PPC, mothers of infants with a prenatal diagnosis of SV completed 4 questionnaires measuring anxiety,
depression, coping, and quality of life/family functioning at a prenatal visit (not at initial diagnosis) and again at neonatal discharge. Infants
were randomized to receive early PPC (defined as initial consultation prior to surgery consisting of structured evaluation, psychosocial/
spiritual support, and communication between mothers and care providers) or usual care.
Results: Among 56 eligible subjects, forty mothers enrolled and completed baseline surveys; 38 neonates randomized (18 early PPC, 20
usual care) and 34 postnatal surveys were completed (3 neonates died, 1 mother declined). Baseline Beck Depression Index II and StateTrait
Anxiety Index (STAI) scores exceeded those of a normal pregnant sample (mean 13.76 ± SD 8.46 vs. 7.0 ± 5.0, and 46.34 ± 12.59
vs. 29.8 ± 6.35, respectively; both P=0.0001), but there were no significant differences between study groups. There was a significant
decrease in prenatal to postnatal STAI scores in the early PPC group (-7.6 vs. 0.3 in usual care, P=0.02). Significantly higher postnatal
Brief Cope Inventory scores for positive reframing, an adaptive response, were noted in the early PPC group (P=0.03). The early PPC
group had a positive change in communication and family relationships scores for the Peds QL Family Impact Module (medium effect size
of 0.46 and 0.41, respectively).
Conclusions: In this pilot randomized trial of early PPC, mothers of children with SV heart disease experienced high levels of depression
and anxiety in the prenatal period. Early PPC in the SV population resulted in decreased maternal stress, improved maternal coping, and
improved communication and family relationships.
Hancock H; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M
Journal Of The American College Of Cardiology
2016
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doi:10.1016/S0735-1097(16)30921-4
Perinatal Decision Making For Preterm Infants With Congenital Heart Disease: Determinable Risk Factors For Mortality.
Cardiac & Cardiovascular Systems; Birth-weight Infants; Necrotizing Enterocolitis; Defects; Pediatrics; Vascular Surgery
Antenatal Counseling; Congenital Heart Disease; Premature; Trial Of Therapy
For premature infants with congenital heart disease (CHD), it may be unclear when the burdens of treatment outweigh potential benefits. Parents may thus have to choose between comfort care at birth and medical stabilization until surgical repair is feasible. Better defined outcome data, including risk factors for mortality, are needed to counsel expectant parents who are considering intensive care for premature infants with CHD. We sought to evaluate outcomes in this population to inform expectant parents considering intensive versus palliative care at birth. We performed a retrospective cohort study of infants born <34 weeks who received intensive care with critical or moderately severe CHD predicted to require surgery in the neonatal period or the first 6 months of life. 46 % of 54 infants survived. Among non-survivors, 74 % died prior to surgery (median age 24 days). Of the infants that underwent surgery, 75 % survived. Survival was lower among infants <32 weeks gestational age (GA) (p = 0.013), with birth weight (BW) <1500 g (p = 0.011), or with extra-cardiac anomalies (ECA) (p = 0.015). GA and ECA remained significant risk factors for mortality in multiple logistic regression analysis. In summary, GA < 32 weeks, BW < 1500 g, and ECA are determinable prenatally and were significant risk factors for mortality. The majority of infants who survived to cardiac intervention survived neonatal hospitalization, whereas most of the infants who died did so prior to surgery. For some expectant parents, this early declaration of mortality may support a trial of intensive care while avoiding burdensome interventions.
Lynema S; Fifer C; Laventhal N
Pediatric Cardiology.
2016
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DOI: 10.1007/s00246-016-1374-y
Somatosensory Test Responses And Physical And Psychological Functioning Of Children And Adolescents With Chronic Non-neuropathic Pain: An Exploratory Study.
OBJECTIVES:
This study was designed to establish preliminary feasibility testing of a set of inherently benign somatosensory stimulus-response tests (to cutaneous and deep stimuli) for bedside or office evaluation of pain disorders in children and adolescents. Associations between, and the relative influence of, cutaneous somatosensory testing (SST) responses, deep SST responses, and psychological factors (depression, pain-related catastrophizing) on pain outcomes (worst pain intensity, pain-related disability) were considered.
METHODS:
Sixty participants (6 to 18 y) were recruited from the pediatric chronic pain clinic. SST responses were assessed at the pain site (PS) and control sites to diverse stimuli (static/dynamic touch, punctate pressure, vibration, cool, deep pressure) using Colored Analogue Scales (CAS) with modified anchors. Validated measures of depression, pain-related catastrophizing, and pain-related functional interference were administered.
RESULTS:
Responses at the PS were more frequently hypersensitive than hyposensitive for all SST measures except vibration. Deep pressure responses were the only statistically significant predictor of worst pain intensity. Depression and pain-related catastrophizing accounted for a statistically significant amount of variance of pain-related disability, over and above that which was accounted for by SST responses.
DISCUSSION:
Preliminary feasibility of a set of somatosensory stimulus-response tests for bedside or office evaluation of pain disorders in children and adolescents was established. Deep pressure responses contributed unique information in predicting worst pain intensity but not functional interference. Although cutaneous SST responses at the PSs were frequently abnormal, cutaneous SST responses were not confirmed in this study to have clinical utility, but rather might be centrally mediated epiphenomena.
Lim SW; Gunaratne Y; Jaaniste T; McCormick M; Champion GD
Clinical Journal Of Pain
2016
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DOI: 10.1097/AJP.0000000000000385
The Importance Of Early Involvement Of Paediatric Palliative Care For Patients With Severe Congenital Heart Disease.
Cardiology; Palliative Care; Advance Care Planning; Congenital Heart Disease; End-of-life Care
Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.
S Bertaud; Lloyd DF; Laddie J; Razavi R
Archives Of Disease In Childhood
2016
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DOI: <a href="https://doi.org/10.1136/archdischild-2015-309789" target="_blank" rel="noreferrer">10.1136/archdischild-2015-309789</a>
Animal-assisted Therapy In Pediatric Palliative Care
Alternative Therapies; Chronic Heart-failure; Psychiatric-patients Pediatrics; Animal-assisted Therapy; Hospitalized Children; Pet-therapy; Evidence-based Practice; Dogs; Complementary; Suffering; Intervention; Nursing; Companion Animals; Anxieties; Palliative Care; Cancer-patients
Animal-assisted Therapy; Pediatrics; Palliative Care; Interventions; Suffering; Evidence-based Practice
Animal-assisted therapy is an emerging complementary strategy with an increasing presence in the literature. Limited studies have been conducted with children, particularly those with life-threatening and life-limiting conditions. Although outcomes show promise in decreasing suffering of children receiving palliative care services, more work is needed to validate evidence to support implementation of animal-assisted therapy with this vulnerable population.
M J Gilmer
Nursing Clinics Of North America
2016
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<a href="http://dx.doi.org/10.1016/j.cnur.2016.05.007" target="_blank" rel="noreferrer">http://dx.doi.org/10.1016/j.cnur.2016.05.007</a>
Best Practice In Provider/Parent Interaction
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Qualitative Health Research
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>
Children's Experiences Of Epilepsy: A Systematic Review Of Qualitative Studies
Systematic Review; Epilepsy; Pediatrics; Qualitative Research; Children & Youth; Quality Of Life
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES:
Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION:
Qualitative studies on children's experiences of epilepsy.
DATA EXTRACTION:
Results from primary studies. We used thematic synthesis to analyze the findings.
RESULTS:
Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of privacy (declarative disease, humiliating involuntary function, unwanted special attention, social embarrassment of medicine-taking), inescapable inferiority and discrimination (vulnerability to prejudice, inability to achieve academically, consciousness of abnormality, parental shame, limiting social freedom), therapeutic burden and futility (unattainable closure, financial burden, overwhelming life disruption, exhaustion from trialing therapies, insurmountable side effects, awaiting a fabled remission), navigating health care (empowerment through information, valuing empathetic and responsive care, unexpected necessity of transition, fragmented and inconsistent care), and recontextualizing to regain normality (distinguishing disease from identity, taking ownership, gaining perspective and maturity, social and spiritual connectedness).
LIMITATIONS:
Non-English articles were excluded.
CONCLUSIONS:
Children with epilepsy experience vulnerability, disempowerment, and discrimination. Repeated treatment failure can raise doubt about the attainment of remission. Addressing stigma, future independence, and fear of death may improve the overall well-being of children with epilepsy.
L Chong
Pediatrics
2016
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doi: 10.1542/peds.2016-0658
Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
J Goldhagen
Bmc Palliative Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1186/s12904-016-0138-z
Delivery Room Deaths Of Extremely Preterm Babies: An Observational Study
Management; Epipage-2; Decision Making; Weeks Gestation; Palliative Care; Perspectives; Birth; Challenge; Infant; Delivery Rooms; Perinatal Palliative Care; Extreme Prematurity; Comfort Care; Death; Pediatrics
Palliative Care; Comfort Care; Delivery Room; Dying; Extreme Prematurity
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France.
DESIGN, SETTING, PATIENTS:
Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby.
RESULTS:
The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%.
CONCLUSIONS:
Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.
X Durrmeyer
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2016
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DOI: 10.1136/archdischild-2016-310718
Exploring The Spiritual Needs Of Families With Seriously Ill Children
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Ferrell B
International Journal Of Palliative Nursing
2016
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http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Parental Hopes, Interventions, And Survival Of Neonates With Trisomy 13 And Trisomy 18
End-of-life Decision Making; Palliative Care; Perinatal Hospice; Perinatal Palliative Care; Prenatal Diagnosis; Trisomy 13; Trisomy 18
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%). Parents wanted to give them a chance, but also reported their fears were medical complexity, pain and/or life in the hospital (61%). Healthcare providers recommended comfort care at birth to all parents. Life-sustaining interventions "as for any other child" was chosen as a plan of care by 25% of parents. Of the 216 children with full trisomy, 69% were discharged home after birth and 40% lived >1 y. The presence of a prenatal diagnosis was the strongest independent factor negatively associated with longevity: 36% of children with a prenatal diagnosis lived <24 hr and 47% were discharged home compared to 1% and 87%, respectively for children with a postnatal diagnosis (P < 0.01). Male gender, low-birth weight, and cardiac and/or cerebral anomaly were also associated with decreased survival (P < 0.05). After a prenatal diagnosis, palliative care at birth consisted of limited interventions, whereas after a postnatal diagnosis (median age of 6 days) it consisted of various interventions, including oxygen, ventilation, tube feeding and intravenous fluids, complicating the analysis. In conclusion, the goals of parents of children with trisomy 13 or 18 were to meet their child, be discharged home and be a family. Having a postnatal diagnosis was the independent factor most associated with these goals. Children with a postnatal diagnosis were treated "as any other children" until the diagnosis, which may give them a survival advantage, independent of palliative care. Rigorous transparency regarding specific interventions and outcomes may help personalize care for these children.
Janvier A
American Journal Of Medical Genetics Part C: Seminars In Medical Genetics
2016
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DOI: 10.1002/ajmg.c.31526
Pediatric Palliative Care: Comprehensive Support For Children
Local Dr Project; Pediatric Palliative Care; Symptom Management
Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical, socio‑economic, emotional, psychological and spiritual aspects. Due to increasing life expectancy of humans and the fact that chronic diseases account for 60% of premature death, mainly due to cardiovascular diseases, neurological and malignant tumors; has been the global need to create, implement, and enhance knowledge and PC local programs. In pediatrics, there are four main reasons why a child can and should receive pediatric palliative care (PPC): Cancer, Cystic fibrosis, Metabolic or Mitochondrial and/or Progressive Muscle Diseases and Neurological Disorders. In this article we analyze synthetically the definition, types and basic definitions on the CPP matter. Also, we share the local experience about the first pediatric palliative care program focus in oncologic patients on the Dominican Republic. To review the basics and history of palliative care. To establish the goals and definition of pediatric palliative care, symptom management, terminal illness and integral support. To describe the local pediatric palliative care in oncology unit at Dr. Robert Reid Cabral Children’s Hospital in Dominican Republic as the first PPC local program in the country for children with cancer.
W C Gomez Garcia
Acta Medica International
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI:10.5530/ami.2016.2.32
Predictors Of Intention To Refer To Pediatric Palliative Or Hospice Care
Adult; Age Factors; Attitude Of Health Personnel; Attitude To Death; Continental Population Groups; Female; Hospice Care/psychology; Hospitals Pediatric/statistics & Numerical Data; Humans; Intensive Care Units Neonatal/statistics & Numerical Data; Intention; Male; Middle Aged; Nurses Pediatric/psychology; Palliative Care/psychology; Referral And Consultation/statistics & Numerical Data; Regression Analysis; Sex Factors
Andersen; Behavioral Model; Health Service Use; Hospice; Nurse; Palliative Care; Pediatrics; Referral
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses.
N E Conner; N Uddin
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909115593062
Thoughtfulness And Grace: End-of-life Decision Making For Children With Severe Developmental Disabilities
Child Developmental-disabilities Decision Makinghumans Intellectual Disability Terminal Care
PM Jones
American Journal Of Bioethics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1080/15265161.2015.1132046
“scared Of Palliative”: Perspectives On Palliative Care From Pediatric Nurses Caring For Children With Progressive Life Shortening Illnesses On Acute Care Units
Objectives: Children with Progressive Life Shortening
Illnesses (PLSIs) are children whose lives are shrouded
with uncertainty as they live with conditions for which
cure, and often even effective treatments, is not available.
Nevertheless, the number of children with PLSIs who
require long-term management of their disease condition
in hospital is steadily increasing. Accordingly, pediatric
nurses on general hospital units frequently care
for children with PLSIs and are intensely engaged in controlling
pain and managing complex symptoms such as
respiratory support, feeding issues, and seizure management.
Despite pediatric nurses carrying out the essential
aspects of palliative care, specifically pain and symptom
management, they typically do not identify their practice
as being influenced by the tenets of palliative care and
even described feeling ‘‘scared of palliative.’’
Methods: Qualitative data was collected through individual
interviews with pediatric acute care nurses, the transcripts
of which were analyzed according to the
interpretive methodology of philosophical hermeneutics.
Results: Participants revealed a limited understanding
of the scope and breath of pediatric palliative care.
Participants avoided using the language of palliative
care in their discussion of their work with children
with PLSIs. When they did use the language of palliative
care, it was taken up in the sense of end-of-life
care: ‘‘she was made palliative that day.’’ Furthermore,
participants often deferred to the palliative care consult
team when asked about how they understood
the role of palliative care in their practice.
Conclusions: Nurses working with children with PLSIs
and their families could benefit from support and
empowerment in their work through an integrative
and creative approach with the palliative care consult
team. This would include involvement of acute care
nurses in decision making conversations and the implementation
of an Advanced Practice Nursing role to work
as a liaison between the consult team and bedside nurses
Shelagh McConnell; Shelley Raffin Bouchal; Nancy Moules; Lillian Rallison
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.075
A Call For Increased Paediatric Palliative Care Research: Identifying Barriers
Public Environmental & Occupational Health; Medicine General & Internal; Health Care Sciences & Services
Editorial - The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance1 emphasises the need to include children and young people (CYP), both those with good health and those with life-limiting conditions (LLCs) or life-threatening illnesses (LTIs) in decisions about health and health research,2 it is commonly accepted that this is not easily achieved in practice. Challenges faced by researchers aiming to recruit CYP with LLCs or LTIs and their families are numerous, including small sample sizes and limited funding as well as difficulties with research ethics committees, the unpredictable nature of the illnesses and society’s perceptions of the potential physical and psychological burden for participants and their families...
Emma Beecham; Briony F Hudson; Linda Oostendorp; Bridget Candy; Louise Jones; Vickey Vickerstaff; Monica Lakhanpaul; Paddy Stone; Lizzie Chambers; Doug Hall; Kate Hall; Thines Ganeshamoorthy; Margaret Comac; Myra Bluebond-Langner
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="%20https%3A//doi.org/10.1177/026921631664808">10.1177/0269216316648087</a>
A Survey Of Key Opinion Leaders On Ethical Resuscitation Practices In 31 European Countries.
Adult; Cardioulmonary Resuscitation/ethics; Child; Child Preschool; Ethics Medical; Europe; Female; Heart Arrest/therapy; Humans; Leadership; Linear Models; Male; Surveys And Questionnaires; Terminal Care/ethics
Bioethics; Cardiac Arrest; Emergency Care; End-of-life Care; Resuscitation
BACKGROUND:
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this variation has evolved, and whether the application of ethical practices is associated with emergency care organisation.
METHODS:
A questionnaire covering four domains of resuscitation ethics was developed based on consensus: (A) Approaches to end-of-life care and family presence during cardiopulmonary resuscitation; (B) Determinants of access to best resuscitation and post-resuscitation care; (C) Diagnosis of death and organ donation (D) Emergency care organisation. The questionnaire was sent to representatives of 32 countries. Responses to 4-choice or 2-choice questions pertained to local legislation and common practice. Positive responses were graded by 1 and negative responses by 0; grades were reconfirmed/corrected by respondents from 31/32 countries (97%). For each resuscitation/end-of-life practice a subcomponent score was calculated by grades' summation. Subcomponent scores' summation resulted in domain total scores.
RESULTS:
Data from 31 countries were analysed. Domains A, B, and D total scores exhibited substantial variation (respective total score ranges, 1-41, 0-19 and 9-32), suggesting variable interpretation and application of bioethical principles, and particularly of autonomy. Linear regression revealed a significant association between domain A and D total scores (adjusted r(2)=0.42, P<0.001).
CONCLUSIONS:
According to key experts, ethical practices and emergency care still vary across Europe. There is need for harmonised legislation, and improved, education-based interpretation/application of bioethical principles. Better application of ethical practices may be associated with improved emergency care organisation.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Mentzelopoulos SD; Bossaert L; Raffay V; Askitopoulou H; Perkins GD; Greif R; Haywood K; Van de Voorde P; Xanthos T
Resuscitation
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: <a href="https://doi.org/10.1016/j.resuscitation.2015.12.010" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2015.12.010</a>
Children With Complex Medical Conditions: An Under-recognized Driver Of The Pediatric Cost Crisis
Medicine & Public Health; Comprehensive Care; General Practice / Family Medicine; Pediatric Healthcare Costs; Pediatrics; Children With Medical Complexity; Value Proposition; Palliative Care; Intensive / Critical Care Medicine; Maternal And Child Health Children With Medical Complexity; Comprehensive Care; Value Proposition; Pediatric Healthcare Costs; Palliative Care
Children with medical complexity (CMC) represent less than 1 % of all US children, but account for more than 30 % of total pediatric healthcare costs. They are a rapidly growing population of children with the highest levels of medical fragility and intensive healthcare needs that drive them in and out of inpatient settings, particularly intensive care units, at astounding frequencies. CMC account for 34 % ($1.6 billion) of all Medicaid pediatric healthcare expenditures, 47 % of Medicaid’s total spending on pediatric hospital care, and for 71 % of the 30-day unplanned hospital readmissions. As major drivers of the national pediatric healthcare cost crisis, CMC urgently need high value systems of care that are responsive to their longitudinal needs. We encourage healthcare leaders to recognize the unique needs of CMC and their families and to provide intensive inpatient and outpatient comprehensive care in team-based models of goal-directed care. We emphasize the importance of safety, of rapid access to home and community based care, and of continuity of care across acute inpatient, post-acute, and outpatient settings. Resources of palliative care, post-acute care, telehealth, and strong parent-provider partnerships are needed to support value-driven systems. Emerging evidence suggests that comprehensive care for CMC and their families drives total healthcare expenditures down and offers an innovative approach to the provision of high value care for this growing population of children. Efforts to design, implement, and measure outcomes for innovative systems of care for CMC are needed.
Murphy NA; Clark EB
Current Treatment Options In Pediatrics
2016
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<a href="https://doi.org/10.1007/s40746-016-0071-7">10.1007/s40746-016-0071-7</a>
Effectiveness Of Pediatric Palliative Care Education On Pediatric Clinicians
Clinical Education; Confidence; Nurses; Pediatric Palliative Care; Pediatricians
Abstract
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest-posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families. Results showed a significant main effect of training on confidence levels (p < .000). This suggests that education can effectively boost pediatric clinicians' confidence regarding providing pediatric palliative care and therefore should regularly be provided to clinicians.
Peng NH; Lee CH; Lee MC; Huang LC; Chang YC; DeSwarte-Wallace J
Western Journal Of Nursing Research
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0193945916680615
End of Life Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance
Adolescent; Advance Care Planning; Child; Humans; Infant; Patient Care Team; Patient Participation; Practice Guidelines As Topic; State Medicine; Terminal Care; United Kingdom
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself.1 Finally, it includes those aspects related to the care of the dying.
This guideline was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency. Important themes are to involve children and young people and their parents or carers in decisions about their care, facilitate their care in their preferred location (most likely home), and plan for day and night care.
This article summarises the most recent guidance from the recent National Institute for Health and Care Excellence (NICE) on the planning and management of end of life care in infants, children, and young people.2 For a visual summary, please see infographic.
Villanueva G; Murphy; MS; Vickers D; Harrop E; Dworzynski K
British Medical Journal
2016
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<a href="https://doi.org/10.1136/bmj.i6385">10.1136/bmj.i6385</a>
Family Conferences In The Neonatal Icu: Observation Of Communication Dynamics And Contributions.
Communication; Critical Illness/psychology; Decision Making; Empathy; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Male; Parents/psychology; Professional-family Relations; Qualitative Research; Terminal Care/psychology
Abstract
OBJECTIVES:
Clinicians in the neonatal ICU must engage in clear and compassionate communication with families. Empirical, observational studies of neonatal ICU family conferences are needed to develop counseling best practices and to train clinicians in key communication skills. We devised a pilot study to record and analyze how interdisciplinary neonatal ICU clinicians and parents navigate difficult conversations during neonatal ICU family conferences.
DESIGN:
We prospectively identified and audiotaped a convenience sample of neonatal ICU family conferences about "difficult news." Conversations were analyzed using the Roter interaction analysis system, a quantitative tool for assessing content and quality of patient-provider communication.
SETTING:
An urban academic children's medical center with a 45-bed level IV neonatal ICU.
SUBJECTS:
Neonatal ICU parents and clinicians.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
We analyzed 19 family conferences that included 31 family members and 23 clinicians. The child's mother was included in all conferences, and a second parent, usually the father, was present in 13 conferences. All but one conference included multiple medical team members. On average, physicians contributed 65% of all dialogue, regardless of who else was present. Over half (56%) of this dialogue involved giving medical information; under 5% of clinician dialogue involved asking questions of the family, and families rarely (5% of dialogue) asked questions. Conversations were longer with the presence of nonphysician clinicians, but this did not increase the amount of dialogue about psychosocial information or increase parent dialogue.
CONCLUSIONS:
We collected a novel repository of audio-recorded neonatal ICU family meetings that offers insights into discussion content and process. These meetings were heavily focused on biomedical information even when interdisciplinary clinicians were present. Clinicians always talked more than parents, and no one asked many questions. Maximizing the participation of interdisciplinary clinicians in neonatal ICU family meetings may require explicit strategies. Methods to increase family engagement should be targeted.
Boss RD; Donohue PK; Larson SM; Arnold RM; Roter DL
Pediatric Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/PCC.0000000000000617
Feasibility And Acceptability Of A Reiki Therapy Intervention For Children Receiving Palliative Care
Background: Children are receptive to complementary therapies such as music, massage, and distraction for symptom management. Reiki therapy is ideal for children; particularly those receiving palliative care because it is a gentle, light touch therapy that promotes relaxation. This pre/post mixed-methods single group pilot study examined feasibility and acceptability of Reiki therapy for children receiving palliative care. Methods: A convenience sample of children (7 to16 years) together with a parent was recruited from a large palliative care service. Two 24-minute protocolized Reiki therapy sessions (12 hand positions for 2 minutes each) were administered at the child’s home by a single Reiki master. Recruitment, retention, and data collection rates were documented. Structured interviews were completed with parents and verbal children to elicit their experiences with the Reiki therapy sessions. Descriptive statistics and thematic analysis were conducted. Results: Twenty-one (87.5%) of the 24 child-parent dyads approached consented to the study. Sixteen dyads completed the study (eight with verbal and eight with non-verbal children). All 16 mothers (100%) stated they would participate in the study again and 100% of the verbal children liked the way the Reiki was done. Themes identified by both parents and children included Feeling Better (with subthemes Really Relaxed, Not Hurting That Bad, Calmed Me Down, Happier, and Heats Me Up), and Still Going On. Parents also identified Hard to Judge. Conclusions: The results of this pilot study demonstrate the feasibility and acceptability of Reiki therapy for children receiving palliative care. Parents and children were generally positive regarding the experience of receiving Reiki therapy. Verbal children reported they ‘felt really relaxed,’ and mothers stated, ‘it was a good experience’ and ’she was relaxed afterward.’ These results offer evidence that Reiki therapy may be a useful addition to traditional medical management of symptoms in children receiving palliative care.
Thrane SE; Danford CA; Maurer SH; Dianxu Ren; Cohen Susan M
Journal Of Pain And Symptom Management
2016
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<a href="http://dx.doi.org/10.1016/j.jpainsymman.2016.10.299" target="_blank" rel="noreferrer">DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.299</a>
Life And Medical Ethics In Pediatric Neurosurgery.
Ethical issues in the field of pediatric neurosurgery, including prenatal diagnosis, palliative care for children with an intractable serious disease, and medical neglect, are discussed. An important role of medicine is to offer every possible treatment to a patient. However, it also is the responsibility of medicine to be conscious of its limitations, and to help parents love and respect a child who suffers from an incurable disease. When dealing with cases of medical neglect and palliative care for an incurable disease, it is critical to diagnose the child's condition accurately and evaluate the outcome. However, to treat or not to treat also depends on the medical resources and social-economic status of the community, the parents' religion and philosophy, the policies of the institutions involved, and the limits of medical science. Moral dilemmas will continue to be addressed as medical progress yields treatments for untreatable diseases in the future.
Yamasaki M
Neurologia Medico-chirurgica (tokyo)
2016
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DOI: 10.2176/nmc.ra.2016-0122
Life Transitions Of Adolescents And Young Adults With Life-limiting Conditions
Adaptation Psychological; Adolescent; Adolescent Development; Adult; Brain Neoplasms; Child; Cystic Fibrosis; Disease Progression; Emotions; Family; Health Status; Humans; Mental Health; Muscular Dystrophy Duchenne; Neurodegenerative Diseases; Terminally Ill; Young Adult
Adolescents; Young Adults; Life-limiting Conditions; Life Transitions
Aims:
A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions.
Methods:
The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and AMED. Methodological quality was assessed using an established tool and the final articles included in the study were rated as moderate to high quality. Articles were then assessed based on the insight that they provided into life transitions for adolescents and young adults.
Results:
Eighteen studies were included in the final review, with two major life transitions identified as pertinent: ‘illness transition’ and ‘developmental transition’. These concurrent transitions were found to be relevant to adolescents and young adults with life-limiting conditions, generating complex needs. Sub-themes within the transitions were also identified. Furthermore, the illness transition was found to also impact significant others, namely family members, having physical, mental and emotional health implications and requiring them to make adaptations.
Conclusions:
Future research is needed to focus on adolescent and young adult perspectives to bring further insight into these key transitions, since such perspectives are currently underrepresented. Attention to the impact of the illness on the whole family would be useful to expand findings from this review.
Johnston; Jindal-Snape; Pringle J
International Journal Of Palliative Nursing
2016
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DOI: http://dx.doi.org/10.12968/ijpn.2016.22.12.608
Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012
Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the programs and care provided
since 2002; and determine the current proportion of
children who receive care through the programs.
Methods: Collaborators from 13 PPC programs provided
information about program structure and staffing,
and the demographics, processes, and outcomes
of care for the children who received care during
2012. Data were compared with results of a similar
study from 2002.
Results: Between 2002 and 2012 the number of PPC
programs in Canada increased from 8 to 13 and the
number of children who received care through these
programs more than quadrupled from 317 to 1401.
However, the number of core staff across all programs
increased by only two and a half times from 13.6 Full
Time Equivalents in 2002 to 33.8 in 2012. Over the
10 year period, higher proportions of children who
received care in 2012 were less than 1 year of age,
(36.3% vs. 24.0%, p LT 0.01), had congenital conditions
or conditions originating in the perinatal period
(36.0% vs. 22.1%, p LT 0.01), and died in a neonatal
or pediatric intensive care setting (24.4% vs. 12.3%, p
LT 0.01). The proportion of children who might
benefit that actually received specialized PPC increased
from 5.0 percent in 2002 to 18.6 percent in 2012.
Conclusions: Program growth and changes in child
demographics indicate improved reach of the programs
over time. However, remaining barriers prevent
the majority of children from receiving specialized
PPC services in a timely manner. Exploration of
changes over time provides information to clinicians,
and policy and decision makers to guide further program
development in Canada and internationally.
Widger K; Davies D; Dauost L; Liben S; Rapoport A; Gregoire MC; Vadeboncoeur C; Stenekes S; Cyr C; Sarpal A; Roy H; Hodgson-Viden H; Robertson M; Siden H
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.057
Relationship Between Response To Stress & Meaning Making And The Effects On Grief After Child Death
Critical Care Medicine
Learning Objectives: Parents that experience the death of a child are at high risk for complicated grief, which may be related to unsuccessful attempts to find meaning in their loss. Responses to stress include involuntary reactions that reflect temperament or conditioned responses (intrusive thoughts, emotional numbness), as well as coping which refers to responses that are voluntary and involve conscious effort (problem solving, cognitive restructuring). A parent’s ability to find meaning in their child’s death may be influenced by their reaction to stress & coping. In this study we explored the relationship between a bereaved parent’s response to stress and their ability to make meaning of their child’s death. We hypothesized that parents with more meaning making would have less complicated grief.
Methods: This was a prospective survey study of bereaved parents whose children died in the PICU & CICU at Nationwide Children’s Hospital from 2012 to 2014. Parents were enrolled 6 months after their child’s death and completed measured that assessed demographics, response to stress (RSQ), prolonged grief (PG-13), grief reactions (Hogan GRC), and meaning making (ISLES).
Results: The sample consisted of 26 parents of 17 children. More meaning making was seen amongst parents that demonstrated higher levels of voluntary primary (r=.452, p=.023) & secondary control coping (r=.620, p=.002). Parents with higher levels of involuntary stress response demonstrated lower levels of meaning making (engagement r=-.558, p=.004; disengagement r=-.687, p=<.001). Bereaved parents with higher levels of meaning making demonstrated less symptoms of prolonged grief (r=-.548, p=.005) and less negative reaction to grief (despair r=-.739, p=<.001; panic r=-.612, p=.001; blame/anger r=-.565, p=.003; detachment r=-.653, p=<.001; disorganization r=-.664, p=<.001).
Conclusions: Bereaved parents with higher levels of meaning making show less overall symptoms of prolonged grief and less negative reactions to grief. This may be related to higher levels of voluntary coping; whereas higher levels of involuntary response to stress may be detrimental.
Suttle; Markita; Gerhardt; Cynthia; Fults; Marci; Shultz; Emily
Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/01.ccm.0000509228.81390.9a
Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project
Pediatrics; Drug Use; Narcotics; Young Adult; Teenagers; Children & Youth
BACKGROUND:
The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse.
METHODS:
The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months." The opioid bundle includes a urine drug screen, Ohio Automated Rx Reporting System report, pill count, and screening history for drug abuse and mental health disorders. The setting was multiple CCHMC ambulatory clinics. Participants included all PACT members.
RESULTS:
Since implementing the new system, we have increased risk stratification for opioid misuse among outpatients from 0% to >90%. Results have been sustained for 12 months. Key processes have become reliable: obtaining informed consent and controlled substance agreements for all new patients and obtaining the opioid bundle to enable risk stratification in a consistent and timely fashion. A total of 34% of patients have been stratified as high risk, and an additional 27% have been stratified as moderate risk.
CONCLUSIONS:
A system to ensure safe opioid prescribing practices to all patients is critical for providers. Identifying key processes and executing them reliably has enabled the palliative care team at CCHMC to risk stratify >90% of patients receiving opioids in the ambulatory setting for opioid misuse.
Thienprayoon R; Porter K; Tate M; Ashby M; Meyer M
Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1542/peds.2016-0258
Teaching The Art Of Difficult Family Conversations.
Communication Skills; Communication Skills Curriculum; Debriefing; Family Conversations; Giving Bad News; Simulation
CONTEXT:
Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However, traditional teaching methods using didactics and expert role modeling are often inadequate.
OBJECTIVES:
The train-the-educator workshop aimed to teach educators how to create and conduct workshops on facilitating difficult family conversations that target their own learners' needs.
METHODS:
This three-hour workshop included instruction on scenario writing and on the use of standardized actors as patients and family members. Workshop leaders presented examples of commonly encountered clinical scenarios where difficult information is discussed. The session used experiential teaching techniques. Outcomes were measured by qualitative discussions and a questionnaire to demonstrate communication skills learned from the sessions.
RESULTS:
The workshop was well received by participants who consisted of educators attending the annual meeting of the Pediatric Academic Societies in May 2016. Evaluations revealed that 92% of participants agreed or strongly agreed that the workshop achieved the learning objectives. All participants believed that the workshop increased their knowledge, competency, and skills in teaching and facilitation as an educator, with 86% of participants planning to apply the skills toward curriculum development. The major themes that participants learned centered on facilitation skills as an educator and techniques on how to communicate during challenging family meetings (86% of comments).
CONCLUSION:
This train-the-educator workshop addresses a critical need in both palliative care and general medicine by enhancing the educators' skills in designing and implementing a curriculum on communication skills of health care providers using experiential techniques with formative feedback. The authors hope that by outlining the implementation of this three-hour interactive format, future educators will adapt and use this workshop as it works best for their learners.
Dadiz R; Spear ML; Denney-Koelsch E
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.jpainsymman.2016.12.322
Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies
Background: The majority of children die in pediatric
hospitals after a decision to withhold or withdraw
life sustaining interventions. Tensions and conflicts
at the end of life (EOL) are not rare in pediatric
hospitals.
Objective: To investigate how frequent these conflicts
are and how health-care professionals (HCPs) experience,
cope and suggest improvements regarding endof-life
communications in pediatrics.
Design/Methods: Questionnaire sent to all 2300 HCPs
who care for patients in a large mother-child university
hospital.
Results: 946 HCPs answered the questionnaire (nurses,
physicians and other disciplines). A majority (70%,
663) had witnessed or cared for at least one dying child
over the preceding five years. Of those, 73% experienced
at least a conflict at the end of life. Conflict
occurred more frequently among HCPs (58%) than between
HCPs and parents (33%), p LT 0.05.
More than 40% reported the following factors as being
frequently associated with end-of-life conflicts:
- HCP Related: lack of continuity (physicians and/
or nurses), differences in values and beliefs between
HCP.
- Patient-Disease Related: precipitated or critical situations,
uncertain prognosis.
- Parent Related: unprepared parents, emotional load,
unrealistic parental expectations, differences in
values and beliefs, parents’ fear of hastening death.
- Institution Related: lack of practical guidelines to
deal with difficult end-of-life cases.
HCP report using these strategies to solve confrontations:
negotiating with parents and patients, educating
parents and discussing with peers. Nurses and physicians
reported significantly different types of coping strategies.
For 66% of respondents, conflicts were resolved
by the time of the child’s death. Only 25% felt they
received adequate training to cope with EOL conflicts.
Suggestions for improvement: primary health-care providers
or case-managers, interdisciplinary meetings
involving the parents, post-death ethics meetings,
bereavement follow-up protocols and earlier consultation
in pediatric palliative care and/or clinical ethics service.
Conclusions: End-of-life conflicts are frequent in pediatrics.
The main source of tension is between providers
who may have different views and values. Coping mechanisms
may be different from one provider to another,
but many identify useful strategies to solve conflicts.
Future research should investigate whether these perspectives
parallel those of parents and patients.
Antoine Payot; Marie-Anne Archambault-Grenier; Marie-Hélène Roy-Gagnon; Nago H; Sanja Stojanovic; Janvier A; Michel Duval
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.023
The Relationship Between Bereaved Parental Knowledge Of Events And Satisfaction With Care.
Critical Care Medicine
Learning Objectives: Parents have described high-quality end of life care as care that involves giving news with sensitivity, giving clear information on what to expect, and generally preparing families for the circumstances surrounding their child’s death. Because of the often rapid nature of death in the pediatric intensive care unit, intensivists may have less time to adequately prepare families, leaving them unsatisfied with care. In this study we compared bereaved parents’ perceived understanding of the medical events surrounding their child’s death to their overall satisfaction with ICU care. We hypothesized that parents that reported higher perceived knowledge would have higher satisfaction with care.
Methods: This was a survey study of bereaved parents whose children died in the PICU & CICU at Nationwide Children’s Hospital from 2012 to 2014. Parents were enrolled 6 months after their child’s death and completed measures that assessed demographics, perceived knowledge of care, and healthcare satisfaction (Peds QL).
Results: The sample consisted of 26 parents of 17 children. Parents who rated their understanding of the medical events surrounding their child’s death highly, had higher overall satisfaction (r=.485, p=.026); whereas parents with more lingering questions about their child’s death had less overall satisfaction (r=-.541, p=.011) and less information satisfaction (r=-.508, p=.022). Parents that relied more on support staff (nurses, social work) and family & friends for understanding medical events had higher satisfaction with regard to their emotional needs (r=.559, p=.047; r=.657, p=.015). Reliance on family & friends for understanding also correlated with higher overall satisfaction (r=.439, p=.036).
Conclusions: Bereaved parents with higher perceived knowledge of the medical events surrounding their child’s death and less lingering questions about the death have higher overall satisfaction with care. Parents who rely more on support staff and family & friends for understanding of medical events have higher satisfaction of their emotional needs.
Suttle; Markita; Gerhardt; Cynthia; Fults; Marci; Shultz; Emily
Critical Care Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/01.ccm.0000509232.11885.ab
The Role Of The Emergency Department In Pediatric Palliative Care
Objective: To explore pediatric emergency medicine
healthcare providers’ perspectives regarding their
role in pediatric palliative care.
Methodology: A qualitative study was conducted at the
CHU Sainte-Justine from January to April 2016. Four
interdisciplinary semi-structured focus groups were
held: three involved pediatric emergency medicine
staff and one interviewed the pediatrics palliative
care team. These focus groups were transcribed and
analysed in full using NVivo v. 21 (QSR International
Inc.) to identify nodes and codes, and facilitate the
emergence of themes. Data analysis borrows concepts
from grounded theory by using thematic analysis and
theoretical sampling.
Results: A first group involving 8 pediatric emergency
medicine staff members raised several limitations to
providing pediatric palliative care in the emergency
department (ED). These limitations included the unsuitable
physical environment, constrained time and
resources, lack of knowledge about the patient and
his underlying medical condition, difficulties communicating,
with both the patient’s primary physicians
and the patient’s parents, and deficient training. ED
staff suggested their role included evaluating the
clinical situation, listening to the patient and his family,
trying to establish a trusting relationship, supporting
the patient and his family, and organising a rapid
admission to the ward. Disagreements were encountered
about two different approaches in palliative
care. Some healthcare providers believed a designated
and specialised team should manage all patients in pediatric
palliative care. Others suggested a transversal
approach, in which all healthcare providers have a
role to play in the care of pediatric palliative care
patients.
Conclusion: Several limitations and barriers have been
identified to providing high quality pediatric palliative
care in a pediatric ED. The ED’s role in caring for
these patients remains controversial, and demonstrates
two distinct philosophies for providing pediatric
palliative care.
Anne-Josée Côté; Nathalie Gaucher; Antoine Payot
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.110
What Do We Know About Pediatric Palliative Care Patients Who Consult The Emergency Department?
Palliative Care; Pediatrics; Ethics
Introduction: There is very little data about pediatric palliative care (PPC) patients’ visits to the emergency department (ED). This study’s goal was to determine the characteristics of PPC patients who consult the ED. Methods: A five-year retrospective chart review, conducted at a tertiary care pediatric university-affiliated hospital. Eligible patients initially consulted with the PPC team between April 1st 2007 and March 31st 2012. For each eligible patient, ED visits between these dates were included, using the ED’s electronic data system. Data about each visit was drawn from the electronic data system and the patient’s medical chart. This study was IRB approved. Results: During the study period, 290 new patients were followed by the PPC team; of these, 94 (32.4%) consulted the ED at least once (total of 219 visits). The median number of visits per patient was 2 (range: 1-8). Patient median age was 7 years 5 months (range: 1 month-22 years) and most common baseline diagnoses were: oncological diagnosis (39.4%), encephalopathy (27.7%) or genetic/chromosomal anomaly (13.8%). No patients died in the ED, but 36 (38.3%) died during the episode of care following one of their ED visits and 18 (19.1%) of them died within 72h of admission. PPC patients presented to the ED 219 times acutely ill: 11.4% of visits were triaged CTAS (Canadian Triage and Acuity Scale) level 1, 39.3% CTAS 2, 39.3% CTAS 3 and 10% CTAS 4 or 5. Many patients (37.9%) arrived by ambulance, 24.2% were admitted to the resuscitation room. Most patients consulted during day (45.2%) or evening (41.1%) shifts. Median length of stay was 3h50min (range: 13min - 15h10min). Reasons for consultation were respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), fever (9.1%), gastrointestinal symptoms (8.2%), fatigue (7.3%) and technical issues with catheters (5.9%). Most (79%) patients had investigations in the ED; 61.2% were admitted to wards, 7.3% to the PICU, and 20.5% were discharged. Two-thirds of patients (65.7%) had previously signed an advanced care directive at the time of their ED visit; discussions about goals of care were present in 37.4% of medical charts. Conclusion: Most PPC patients presented to the ED acutely ill, requiring work-up and admission. One-third presented in their end of life. Understanding the characteristics of PPC patients who consult the ED is the first step in offering better care for these complex patients.
Gaucher N; Humbert N; Gauvin F
Canadian Journal Of Emergency Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: https://doi.org/10.1017/cem.2016.221
A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review
Brain-damaged Children; Home Enteral Nutrition; Quality Of Life; Video-assisted Gastrostomy; Percutaneous Endoscopic Gastrostomy; Randomized Controlled-trials; Severe Cerebral-palsy; Single-center Experience; Clinical-trials; Pediatrics; Gastroesophageal-reflux; Neurologic Manifestations Of General Diseases; Research; Child; Health Aspects
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
OBJECTIVE: To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes.
DATA SOURCES: Medline, Embase, and Cochrane Register databases searched from inception to March 2014.
STUDY SELECTION: Articles examining health outcomes of neurologically impaired children living with feeding tubes.
DATA EXTRACTION: Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development.
RESULTS: We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: “pathophysiological manifestation” outcomes (n = 83) in 79% of articles; “growth and development” outcomes (n = 13) in 55% of articles; “death” outcomes (n = 3) and “life impact” outcomes (n = 17) in 39% and 37% of articles, respectively; “resource use” outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes.
LIMITATIONS: We were unable to investigate effect size of outcomes because quantitative data were not collected.
CONCLUSIONS: The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.
Mufiza Z Kapadia; Kariym C Joachim; Chrinna Balasingham; Eyal Cohen; Mahant Sanjay; Katherine Nelson; Jonathon L Maguire; Astrid Guttmann; Martin Offringa
Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1542/peds.2015-3967
A Qualitative Examination Of Physician Gender And Parental Status In Pediatric End-of-life Communication
In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings presented here emerged from a larger qualitative study that explored physician narratives surrounding pediatric EOL communication. The current study includes 17 pediatric critical care and pediatric emergency medicine physician participants who completed narrative interviews between March and October 2012 to discuss how their backgrounds influenced their approaches to pediatric EOL communication. Between April and June of 2013, participants completed a second round of narrative interviews to discuss topics generated out of the first round of interviews. We used grounded theory to inform the design and analysis of the study. Findings indicated that physician gender is related to pediatric EOL communication and care in two primary ways: (1) the level of physician emotional distress and (2) the way physicians perceive the influence of gender on communication. Additionally, parental status emerged as an important theme as it related to EOL decision-making and communication, emotional distress, and empathy. Although physicians reported experiencing more emotional distress related to interacting with patients at the EOL after they became parents, they also felt that they were better able to show empathy to parents of their patients.
Bateman LB; White ML; Tofil NM; Clair JM; Needham BL
Health Communication
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/10410236.2016.1196412">10.1080/10410236.2016.1196412</a>