Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
Internship and Residency; Pain/dt [Drug Therapy]; Palliative Care; Pediatrics/ed [Education]; Terminal Care; Adult; Child; Female; Humans; Italy; Male; Middle Aged; Needs Assessment; Palliative Care/st [Standards]; Palliative Care/td [Trends]; Surveys and Questionnaires; Terminal Care/st [Standards]; Terminal Care/td [Trends]
UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. CONCLUSION: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training.
Rusalen F; Ferrante A; Po C; Salata M; Agosto C; Benini F
European Journal Of Pediatrics
2014
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<a href="http://doi.org/10.1007/s00431-014-2304-8" target="_blank" rel="noreferrer">10.1007/s00431-014-2304-8</a>
Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
Disabled Children/px [Psychology]; Palliative Medicine/st [Standards]; Terminal Care/st [Standards]; Vulnerable Populations/px [Psychology]; Child; Humans; Palliative Medicine/mt [Methods]; Terminal Care/mt [Methods]
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
Viallard ML
Culture, Medicine & Psychiatry
2014
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<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">10.1007/s11013-013-9355-6</a>
The needs of professionals in the palliative care of children and adolescents
Adolescent Health Services/ma [Manpower]; Child Care/ma [Manpower]; Health Services Needs and Demand; Palliative Care/ma [Manpower]; adolescent; Child; Humans; Qualitative Research; Surveys and Questionnaires; Switzerland
UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence for Pediatric Palliative Care (PPC) in Switzerland. Within two parts of the study, 76 HCPs were interviewed. The main interview topics were: (1) definition of and attitude toward PPC; (2) current provision of PPC; (3) the support needs of HCPs in the provision of PPC; and (4) the role of specialized PPC teams. HCPs expressed openness to PPC and reported distinctive needs for support in the care of these patients. The main tasks of specialized PPC teams in Switzerland would encompass the coaching of attending teams, coordination of care, symptom control, and direct support of affected families during and beyond the illness of their child. CONCLUSION: This study indicates the need for specialized PPC in Switzerland both inside and outside of centers providing top quality medical care (Spitzenmedizin). Specialized PPC teams could have a significant impact on the care of children and families with PPC needs. Whether hospices are an option in Switzerland remains unanswered; however, a place to meet other families with similar destinies was emphasized.
Bergstraesser E; Inglin S; Abbruzzese R; Marfurt-Russenberger K; Hosek M; Hornung R
European Journal Of Pediatrics
2013
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<a href="http://doi.org/10.1007/s00431-012-1880-8" target="_blank" rel="noreferrer">10.1007/s00431-012-1880-8</a>
Pediatric palliative care-when quality of life becomes the main focus of treatment
Palliative Care; Pediatrics/og [Organization & Administration]; Quality of Life; bereavement; Chronic disease; Communication; decision making; Family Health; Humans; Palliative Care/og [Organization & Administration]; Patient-Centered Care; Spiritual therapies
Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life despite a limited lifespan. From birth to adolescence, children with a broad spectrum of diseases may benefit from PPC. Since 50% of deaths in childhood occur within the first year of life, PPC is just as relevant to neonatology. Causes of death in the neonate and young infant are due to perinatal conditions such as preterm birth and congenital disorders and syndromes; in older children, external causes, such as traumatic injuries, outweigh disease-related causes of death. PPC may last from a few hours or days for neonates to many years for children with complex chronic conditions. For neonates, PPC often has the character of end-of-life (EOL) care followed by bereavement care for the family. For older children, PPC can clearly be differentiated from EOL care; its indications include progress or deterioration of disease, marked instability of the child's condition, increase in the need for technical or medical support, increase in suffering, or failure of treatment. If a child's need for palliative care is established, useless and potentially harmful treatments may be withheld and informed choices can be made about treatment, care, and the remaining life of the child. Conclusion This review aims to provide knowledge for clinicians who care for children and adolescents at risk of dying from their disease. PPC can improve the child's remaining lifetime by focusing on quality of life and goals that are defined by the child and his or her family.
Bergstraesser E
European Journal Of Pediatrics
2013
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<a href="http://doi.org/10.1007/s00431-012-1710-z" target="_blank" rel="noreferrer">10.1007/s00431-012-1710-z</a>
To explore the neonatal nurses' beliefs and attitudes towards caring for dying neonates in Taiwan
Attitude of Health Personnel; Attitude to Death; Culture; Neonatal Nursing; Terminal Care/px [Psychology]; Adult; Cross-Sectional Studies; Female; Humans; Infant Newborn; Intensive Care Units Neonatal; Neonatology; Surveys and Questionnaires; Taiwan; Young Adult
(1) To explore attitudes and beliefs of neonatal nurses toward nursing care for dying neonates; (2) to estimate the influence of neonatal nurses' personal and professional characteristics on their attitudes towards end-of life care for dying infants. A cross-sectional design was used. A questionnaire was used to collect data from 80 neonatal nurses. Research setting was four level III NICUs at four medical centers around the central region of Taiwan. Research participants were neonatal nurses who had worked for at least 1 year in one of level III NICUs and had been directly involved with the care of dying infants. Research participants were 80 neonatal nurses (response rate 100 %). Research findings identified eight barriers hindering neonatal palliative care practice. These barriers were insufficient communication due to the lack of an in-service educational program; the lack of available counseling help for neonatal clinicians; inability to express personal opinions, values and beliefs towards neonatal palliative care; insufficient staffing; the lack of unit policies/guidelines for supporting palliative care; the technological imperative; parental demands and personal beliefs about death and previous experience caring for dying infants. Further studies are needed to explore each barrier and to provide in-service neonatal palliative care educational programs that are needed to decrease these barriers.
Chen CH; Huang LC; Liu HL; Lee HY; Wu SY; Chang YC; Peng NH
Maternal & Child Health Journal
2013
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<a href="http://doi.org/10.1007/s10995-012-1199-0" target="_blank" rel="noreferrer">10.1007/s10995-012-1199-0</a>
Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
Health Services Needs and Demand; Palliative Care; adolescent; Child; Child Preschool; Communication; hospice care; Humans; Interviews as Topic; Needs Assessment; Parents/px [Psychology]; Professional-Patient Relations; Qualitative Research; Switzerland
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
Inglin S; Hornung R; Bergstraesser E
European Journal Of Pediatrics
2011
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<a href="http://doi.org/10.1007/s00431-011-1398-5" target="_blank" rel="noreferrer">10.1007/s00431-011-1398-5</a>
Ethical decision making in neonatal units--the normative significance of vitality
Decision Making; Ethics Medical; Euthanasia/px [Psychology]; Infant Premature; Intensive Care Neonatal/st [Standards]; Female; Humans; Infant Mortality; Infant Newborn; Infant Premature Diseases; Male; Medical Futility; Norway; Parents/px [Psychology]; Physician's Role; Qualitative Research
This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements.
Brinchmann BS; Nortvedt P
Medicine, Health Care & Philosophy
2001
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/11547505" target="_blank" rel="noreferrer">11547505</a>
Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants
Critical Illness/th [Therapy]; Decision Making; Parents/px [Psychology]; Terminal Care; Belgium; gestational age; Humans; infant; Infant Newborn; Life Support Care/px [Psychology]; Medical Futility/px [Psychology]; Physician-Patient Relations; retrospective studies; Surveys and Questionnaires; Terminal Care/px [Psychology]; Withholding Treatment
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the type of ELD, (clinical) characteristics of the patient, and socio-demographic characteristics of the physician. A retrospective study of all deaths of live born infants under the age of one year was conducted in Flanders, Belgium. For 292 of all 298 deaths in a 1-year period (between 1 August 1999 and 31 July 2000) the attending physician could be identified and was sent an anonymous questionnaire. All cases with an ELD and containing information regarding the consultation of parents were included. The response rate was 87% (253/292). In 136 out of 143 cases, an ELD was made and information on the consultation of parents was obtained. According to the physician, the ELD was discussed with parents in 84% (114/136) of cases. The smaller the gestational age of the infant, the more the parental request for an ELD was explicit (p=0.025). When parents were not consulted, the ELD was based more frequently on the fact that the infant had no chance to survive and less on quality-of-life considerations (p=0.001); the estimated shortening of life due to the ELD was small in all cases, but significantly smaller (p<0.001) if parents were not consulted. It is concluded that the majority of parents of children dying under the age of one year are consulted in ELD-making, especially for decisions based on quality-of-life considerations (95.1%). Parents of infants with a small gestational age more often explicitly requested an ELD.
Provoost V; Cools F; Deconinck P; Ramet J; Deschepper R; Bilsen J; Mortier F; Vandenplas Y; Deliens L
European Journal Of Pediatrics
2006
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<a href="http://doi.org/10.1007/s00431-006-0190-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-006-0190-4</a>
Use of patient-controlled analgesia for pain control in dying children
Analgesia Patient-Controlled; Analgesics Opioid/tu [Therapeutic Use]; Morphine/tu [Therapeutic Use]; Neoplasms/pp [Physiopathology]; Pain Intractable/dt [Drug Therapy]; 0 (Analgesics Opioid); 76I7G6D29C (Morphine); adolescent; Analgesics Opioid/ad [Administration & Dosage]; Child; Child Preschool; Female; Humans; Male; Morphine/ad [Administration & Dosage]; Pain Measurement; Palliative Care; retrospective studies; Terminal Care; Treatment Outcome
BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare. MATERIALS AND METHODS: Retrospective chart review over a 7-year period (Jan 1998-Jan 2005) of PCA treated children dying of cancer was used. RESULTS: Eight children were on PCA for a median duration of 9 days (range, 1 to 50). The daily median intravenous morphine equivalent dose referenced to body weight increased significantly when PCA was initiated and during the last week of life. In the last week of life, the median daily number of delivered and undelivered bolus requests ranged from 7.5-21 and 0-4.5, respectively. To meet children's individual needs, 39 PCA parametre changes on 22 opportunities were performed. Median daily mean pain scores remained low (range, 0-3; numerical rating scale 0-10) throughout the period. CONCLUSION: PCA proved an ideal, dependable and feasible mode of analgesic administration for the individual titration of dose to effect.
Schiessl C; Gravou C; Zernikow B; Sittl R; Griessinger N
Supportive Care In Cancer
2008
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<a href="http://doi.org/10.1007/s00520-008-0408-2" target="_blank" rel="noreferrer">10.1007/s00520-008-0408-2</a>
Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients
Mixed methods; Needs assessment; Palliative care; Pediatrics; Qualitative research
BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). METHODS/DESIGN: The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). DISCUSSION: This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. TRIAL REGISTRATION: Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).
Ulrich LR; Gruber D; Hach M; Boesner S; Haasenritter J; Kuss K; Seipp H; Gerlach FM; Erler A
Bmc Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-017-0268-y" target="_blank" rel="noreferrer">10.1186/s12904-017-0268-y</a>
Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review
caregivers; child health; Children; digital clinical communication; Family; Professional-Family Relations; Young Adult
BACKGROUND: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship. OBJECTIVE: The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals. METHODS: We searched the literature using 5 electronic databases. We considered all types of study design published in the English language from January 2009 to August 2015. The population of interest included families and caregivers of children and young people aged less than 26 years with any type of health condition. The intervention was any technology permitting 2-way communication. RESULTS: We included 31 articles. The main designs were randomized controlled trials (RCTs; n=10), cross-sectional studies (n=9), pre- and postintervention uncontrolled (pre/post) studies (n=7), and qualitative interview studies (n=2); 6 had mixed-methods designs. In the majority of cases, we considered the quality rating to be fair. Many different types of health condition were represented. A breadth of digital communication tools were included: videoconferencing or videoconsultation (n=14), and Web messaging or emails (n=12). Health care professionals were mainly therapists or cognitive behavioral therapists (n=10), physicians (n=8), and nurses (n=6). Studies were very heterogeneous in terms of outcomes. Interventions were mainly evaluated using satisfaction or acceptance, or outcomes relating to feasibility. Clinical outcomes were rarely used. The RCTs showed that digital clinical communication had no impact in comparison with standard care. Uncontrolled pre/post studies showed good rates of satisfaction or acceptance. Some economic studies suggested that digital clinical communication may save costs. CONCLUSIONS: This rapid review showed an emerging body of literature on the use of digital clinical communication to improve families' and caregivers' involvement in the health management of children or young people. Further research with appropriate study designs and longer-term outcome measures should be encouraged. TRIAL REGISTRATION: PROSPERO CRD42016035467; http://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD 42016 035467(Archived by WebCite at http://www.webcitation.org/6vpgZU1FU).
Armoiry X; Sturt J; Phelps EE; Walker CL; Court R; Taggart F; Sutcliffe P; Griffiths F; Atherton H
Journal Of Medical Internet Research
2018
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<a href="http://doi.org/10.2196/jmir.7999" target="_blank" rel="noreferrer">10.2196/jmir.7999</a>
Peer support for bereaved children: Setting eyes on children's views through an educational action research project
This article investigates children's views on providing peer support to bereaved children. The data (pre- and postinterviews and written documents) come from an action research study of a teacher-researcher and her 16 children aged 10-11 years old. Analysis of the data shows children's ideas on supporting a bereaved child and how this support should be provided, taking into consideration various factors such as the relationship with the bereaved and the role of memories. The paper emphasizes that children should have structured opportunities across the whole-school curriculum to learn how loss affects people's lives to support themselves and others.
Stylianou P; Zembylas M
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2017.1369472" target="_blank" rel="noreferrer">10.1080/07481187.2017.1369472</a>
Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program
Caregiver Burden; Costs; effectiveness; Evaluation; Health-related quality of life; paediatrics; Palliative Care
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact. METHOD: A structured impact and cost evaluation of Singapore-based HCA Hospice Care's Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups. RESULTS: Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44-79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43-4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55-19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients' quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme. DISCUSSION: Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease. CONCLUSIONS: The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.
Chong PH; De Castro Molina JA; Teo K; Tan WS
Bmc Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-017-0267-z" target="_blank" rel="noreferrer">10.1186/s12904-017-0267-z</a>
Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study
Chronic disease; end-of-life care; Hospitals; Life-limiting conditions; Palliative Care; Pediatrics
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups. DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs. RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care. CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.
Bosch A; Wager J; Zernikow B; Thalemann R; Frenzel H; Krude H; Reindl T
Journal Of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2017.0020" target="_blank" rel="noreferrer">10.1089/jpm.2017.0020</a>
Neurodevelopmental Outcomes of Infants Born at <29 Weeks of Gestation Admitted to Canadian Neonatal Intensive Care Units Based on Location of Birth
cerebral palsy; inborn; neurodevelopmental impairment; neurodevelopmental outcomes; outborn; Perinatal Care; preterm birth; tertiary care
OBJECTIVE: To compare mortality and neurodevelopmental outcomes of outborn and inborn preterm infants born at <29 weeks of gestation admitted to Canadian neonatal intensive care units (NICUs). STUDY DESIGN: Data were obtained from the Canadian Neonatal Network and Canadian Neonatal Follow-up Network databases for infants born at <29 weeks of gestation admitted to NICUs from April 2009 to September 2011. Rates of death, severe neurodevelopmental impairment (NDI), and overall NDI were compared between outborn and inborn infants at 18-21 months of age, corrected for prematurity. RESULTS: Of 2951 eligible infants, 473 (16%) were outborn. Mean birth weight (940 +/- 278 g vs 897 + 237 g), rates of treatment with antenatal steroids (53.9% vs 92.9%), birth weight small for gestational age (5.3% vs 9.4%), and maternal college education (43.7% vs 53.9%) differed between outborn and inborn infants, respectively (all P values <.01). The median Score for Neonatal Acute Physiology-II (P = .01) and Apgar score at 5 minutes (P < .01) were higher in inborn infants. Severe brain injury was more common among outborn infants (25.3% vs 14.7%, P < .01). Outborn infants had higher odds of death or severe NDI (aOR 1.7, 95% CI 1.3-2.2), death or overall NDI (aOR 1.6, 95% CI 1.2-2.2), death (aOR 2.1, 95% CI 1.5-3.0), and cerebral palsy (aOR 1.9, 95% CI 1.1-3.3). CONCLUSIONS: The composite outcomes of death or neurodevelopmental impairment were significantly higher in outborn compared with inborn infants admitted to Canadian NICUs. Adverse outcomes were mainly attributed to increased mortality and cerebral palsy in outborn neonates.
Amer R; Moddemann D; Seshia M; Alvaro R; Synnes A; Lee KS; Lee SK; Shah PS
Journal Of Pediatrics
2018
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<a href="http://doi.org/10.1016/j.jpeds.2017.11.038" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.11.038</a>
Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015
Intensive Care Units Neonatal; Birth Weight; cause of death; Child; Critical Illness/ mortality; Cross-Sectional Studies; Female; Health services administration & management; Hospitalization/ statistics & numerical data; Humans; infant; Infant Newborn; Infant Newborn Diseases/ mortality; Infant Very Low Birth Weight; Male; Neonatology; Patient Discharge/ statistics & numerical data; Population Surveillance; retrospective studies; Risk Factors; South Africa/epidemiology; Survival Rate/ trends
OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted to PNICU between 1 January 2013 and 30 June 2015. OUTCOME MEASURES: Primary outcome-survival to discharge. Secondary outcomes-disease profiles and predictors of mortality in different age categories. RESULTS: There were 1454 admissions, 182 missing records, leaving 1272 admissions for review. Overall mortality rate was 25.7% (327/1272). Mortality rate was 41.4% (121/292) (95% CI 35.8% to 47.1%) for very low birthweight (VLBW) babies, 26.6% (120/451) (95% CI 22.5% to 30.5%) for bigger babies and 16.2% (86/529) (95% CI 13.1% to 19.3%) for paediatric patients. Risk factors for a reduced chance of survival to discharge in paediatric patients included postcardiac arrest (OR 0.21, 95% CI 0.09 to 0.49), inotropic support (OR 0.085, 95% CI 0.04 to 0.17), hypernatraemia (OR 0.16, 95% CI 0.04 to 0.6), bacterial sepsis (OR 0.32, 95% CI 0.16 to 0.65) and lower respiratory tract infection (OR 0.54, 95% CI 0.30 to 0.97). Major birth defects (OR 0.44, 95% CI 0.26 to 0.74), persistent pulmonary hypertension of the new born (OR 0.44, 95% CI 0.21 to 0.91), metabolic acidosis (OR 0.23, 95% CI 0.12 to 0.74), inotropic support (OR 0.23, 95% CI 0.12 to 0.45) and congenital heart defects (OR 0.29, 95% CI 0.13 to 0.62) predicted decreased survival in bigger babies. Birth weight (OR 0.997, 95% CI 0.995 to 0.999), birth outside the hospital (OR 0.21, 95% CI 0.05 to 0.84), HIV exposure (OR 0.54, 95% CI 0.30 to 0.99), resuscitation at birth (OR 0.49, 95% CI 0.25 to 0.94), metabolic acidosis (OR 0.25, 95% CI 0.10 to 0.60) and necrotising enterocolitis (OR 0.23, 95% CI 0.12 to 0.46) predicted poor survival in VLBW babies. CONCLUSIONS: Ongoing mortality review is essential to improve provision of paediatric critical care.
Ballot DE; Davies VA; Cooper PA; Chirwa T; Argent A; Mer M
Bmj Open
2016
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<a href="http://doi.org/10.1136/bmjopen-2015-010850" target="_blank" rel="noreferrer">10.1136/bmjopen-2015-010850</a>
Legal and ethical issues in neonatal nursing
gestational age; newborn nursing; Human; Male; Neonatal Intensive Care Unit; neonatal nurse; Newborn; prematurity; Prognosis
Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.
Anonymous
Nursing Children And Young People
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="http://doi.org/10.7748/ncyp.28.7.51.s26" target="_blank" rel="noreferrer">10.7748/ncyp.28.7.51.s26</a>
The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study
Child; Death; Environment; grounded theory; Paediatric intensive care unit; Parent-healthcare provider relationship
OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. FINDINGS: The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. CONCLUSIONS: The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
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<a href="http://doi.org/10.1016/j.iccn.2017.12.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.008</a>
"Some were certainly better than others" - Bereaved parents' judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study
Child; Death; grounded theory; Health Personnel; Intensive care unit (paediatric); parent
OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. FINDINGS: Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further subdivided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no subdivision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. CONCLUSIONS: Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear examples for healthcare providers who provide end-of-life care, ensuring they provide high quality care.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
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<a href="http://doi.org/10.1016/j.iccn.2017.12.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.003</a>
Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis
Bereavement; Critical Care Nursing; Practice Patterns Nurses'; Adult; Australia; bereavement; Child; Death; dying; end-of-life care; Family; Female; Humans; Intensive Care; Intensive Care Units; Internet; Male; New Zealand; nursing role; Patient-Centered Care; Surveys and Questionnaires
BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. RESULTS: A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian (n = 54, 85.3%), from the public sector (n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles (n = 39, 52.9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices (n = 145, 77.5%), educational provision to support staff (n = 15, 8%) and organisational challenges (n = 27, 14.4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. CONCLUSIONS: This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. RELEVANCE TO CLINICAL PRACTICE: Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death, and after death through family bereavement follow-up.
Coombs M; Mitchell M; James S; Wetzig K
Journal of Clinical Nursing
2017
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<a href="http://doi.org/10.1111/jocn.13624" target="_blank" rel="noreferrer">10.1111/jocn.13624</a>
Losing Thomas & Ella: A Father's Story (A Research Comic)
Graphic Novels as Topic; Grief; perinatal death; stillbirth; Comics-based research; Death; Fathers; Fathers/ psychology; Grief; Humans; Male; Narration; Narrative research; Perinatal Death; Qualitative Research; Research comics; Sequential art; stillbirth
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of anger, distance, relationship stress, self-blame, religious challenges, and resignation. A methodological appendix explains the process of constructing the comic and provides a rationale for the use of comics-based research for illness, death, and grief among practitioners, policy makers, and the bereaved.
Weaver-Hightower MB
Journal Of Medical Humanities
2017
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<a href="http://doi.org/10.1007/s10912-015-9359-z" target="_blank" rel="noreferrer">10.1007/s10912-015-9359-z</a>
Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions
Health Care Costs; Multiple Chronic Conditions; Patient Acceptance of Health Care; adolescent; Ambulatory Care/ economics/utilization; Child; Child Preschool; Chronic disease; Constipation/economics/ therapy; Delivery of Health Care/ economics; Emergency Service Hospital/utilization; Female; Hospitalization/economics; Humans; infant; Male; Medicaid; Prevalence; retrospective studies; United States
OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex chronic conditions (CCCs). METHODS: Retrospective cohort study of 4.9 million children ages 1 to 17 years enrolled in Medicaid from 2009 to 2011 in 10 states in the Truven Marketscan Database. Constipation was identified using International Classification of Disease, 9th revision codes for constipation (564.0x), intestinal impaction (560.3x), or encopresis (307.7). Outpatient and inpatient utilization and spending for constipation were assessed. CCC status was identified using validated methodology. RESULTS: A total of 267,188 children (5.4%) were diagnosed with constipation. Total constipation spending was $79.5 million. Outpatient constipation spending was $66.8 million (84.1%) during 406,814 visits, mean spending $120/visit. Among children with constipation, 1363 (0.5%) received inpatient treatment, accounting for $12.2 million (15.4%) of constipation spending, mean spending $7815/hospitalization. Of children hospitalized for constipation, 552 (40.5%) did not have an outpatient visit for constipation before admission. Approximately 6.8% of children in the study had >/=1 CCC; these children accounted for 33.5% of total constipation spending, 70.3% of inpatient constipation spending, and 19.8% of emergency department constipation spending. Constipation prevalence was 11.0% for children with 1 CCC, 16.6% with 2 CCCs, and 27.1% with >/=3 CCCs. CONCLUSIONS: Although the majority of pediatric constipation treatment occurs in the outpatient setting, inpatient care accounts for a sizable percentage of spending. Children with CCCs have a higher prevalence of constipation and account for a disproportionate amount of constipation healthcare utilization and spending.
Stephens JR; Steiner MJ; DeJong N; Rodean J; Hall M; Richardson T; Berry JG
Journal Of Pediatric Gastroenterology And Nutrition
2017
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<a href="http://doi.org/10.1097/mpg.0000000000001210" target="_blank" rel="noreferrer">10.1097/mpg.0000000000001210</a>
Undergraduate nursing students' attitudes and preparedness toward caring for dying persons - A longitudinal study
Attitude to Death; health personnel attitude; psychology; adolescent; Adult; Female; Human; longitudinal study; Male; Middle Aged; nursing education; nursing student; procedures; Questionnaire; Sweden; Terminal Care
Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care. A longitudinal study was performed with 117 nursing students at six universities in Sweden. The students completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) questionnaire at the beginning of first and second year, and at the end of third year of education. After education, the students completed questions about how prepared they felt by to perform end-of-life care. The total FATCOD increased from 126 to 132 during education. Five weeks' theoretical palliative care education significantly predicted positive changes in attitudes toward caring for dying patients. Students with five weeks' theoretical palliative care training felt more prepared and supported by the education to care for a dying patient than students with shorter education. A minority felt prepared to take care of a dead body or meet relatives.
Henoch I; Melin-Johansson C; Bergh I; Strang S; Ek K; Hammarlund K; Lundh Hagelin C; Westin L; Osterlind J; Browall M
Nurse Education In Practice
2017
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<a href="http://doi.org/10.1016/j.nepr.2017.06.007" target="_blank" rel="noreferrer">10.1016/j.nepr.2017.06.007</a>
Palliative care in children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
clinical research; palliative therapy; Werdnig Hoffmann disease; 50-48-6 (amitriptyline); 52-26-6 (morphine); 57-27-2 (morphine); 549-18-8 (amitriptyline); Amitriptyline; benzodiazepine derivative; Child; Clinical Article; clinical practice; Diagnosis; Drug Therapy; Female; follow up; Human; infant; Intensive care unit; Interview; Male; Morphine; multicenter study; nasogastric tube; Noninvasive Ventilation; psychologist; quantitative analysis; Resuscitation; time of death
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which death up to now occurs few weeks or months after the diagnosis. We here report data about the conditions of death for the patients included. Methods: In this French multicentric study, patients were included from june 2012 to june 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient's management over the last 48 hours before death, then a semidirected interview of the parents was conducted by a trained psychologist 6 to 18 months after the child's death. We here report the quantitative analysis of data obtained from the survey about patient's management around death. Results: 38 patients were included in the study (17 centres), data were available for 36 dead patients. Median age at inclusion was 3 months (0,6-10,4), death occurred at a median 5,5 month of age (1,5-16,4), i.e a median follow-up of 2 months (0,2-12,8). 39% of patients died at home, 6% in an intensive care unit. At the time of death, patients received morphine (56%), benzodiazepines (39%), amitriptyline (39%). Treatments were given through a nasogastric tube (83%), and oxygenotherapy was delivered (76%). 6% patients received noninvasive ventilation at the time of death. No resuscitation recommendations had been prepared for most patients (97%), written in 85%, after a multidisciplinary meeting in most cases (79%). Conclusion: Our data confirm current knowledge about natural outcome in SMA 1, death occurring very soon after the diagnosis, claiming for an effective palliative management of the patients, including the involvement of parents in medical care at home.
Hully M; Barnerias C; Vanesse S; Viallard ML; Desguerre I
European Journal Of Paediatric Neurology
2017
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<a href="http://doi.org/10.1016/j.ejpn.2017.04.1310" target="_blank" rel="noreferrer">10.1016/j.ejpn.2017.04.1310</a>
Early involvement of palliative care in cystic fibrosis in inpatient setting: A quality improvement initiative
cystic fibrosis; hospital patient; palliative therapy; Total Quality Management; Child; disease exacerbation; e-mail; Human; lung; outcome assessment; pulmonologist; social worker
Background: Cystic fibrosis (CF) is a life-limiting disease with multiple comorbidities. It has been recommended that palliative care discussions for psychological adjustment and optimal symptom control should be initiated early. However, the palliative care service in this population remains underutilized. Objective: To increase utilization of palliative care services for patients admitted for CF exacerbations. Methods: A SMART aim statement was created with the goal of increasing consults by the palliative care service for patients admitted to the hospital with CF exacerbation. We measured the number of palliative care consult orders placed over a 2-week period. These charts were then reviewed for the presence of corresponding consult orders and notes. We conducted two PDSA (Plan-Do-Study-Act) cycles. The first intervention was sending informational emails to the pulmonary team covering the inpatient service. The second intervention was an educational session for pediatric pulmonologists and fellows to learn from social workers and palliative care specialists about their training and indication for consults. Social workers also helped educate the patients and their families on the additional benefit of palliative care services. Results: Baseline data over a 2-week period suggested that none of the CF inpatients had received involvement from the palliative care team during the corresponding admission. The percentage of CF patients who received palliative care consults increased to 33% from baseline in 5 weeks at the end of the second intervention. Conclusion: The inter-professional quality improvement model was effective in increasing palliative care consults for CF patients admitted to pulmonary service. Educational initiatives regarding palliative care services are an effective intervention to facilitate this process. Further data are required to measure outcomes in the form of feedback from patients, families and providers.
Kotwal N; Kilaikode S; Koumbourlis A; Perez G
Pediatric Pulmonology
2017
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Challenges to code status discussions for pediatric patients
Child; comfort; distress syndrome; Female; Human; major clinical study; Male; morality; nurse; pediatric ward; Questionnaire; resident; self report; student; vision
Objectives: In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are one way to inform end-of-life medical decision making. The objectives of this study are to evaluate the extent to which pediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions. Design: Nurses, trainees (residents and fellows), and attending physicians from pediatric units where code status discussions typically occur completed a short survey questionnaire regarding their knowledge of code status options and perceptions surrounding code status discussions. Setting: Single center, quaternary care children's hospital. Measurements and main results: 203 nurses, 31 trainees, and 29 attending physicians in 4 high-acuity pediatric units responded to the survey (N = 263, 90% response rate). Based on an objective knowledge measure, providers demonstrate poor understanding of available code status options, with only 22% of providers able to enumerate more than two of four available code status options. In contrast, provider groups self-report high levels of familiarity with available code status options, with attending physicians reporting significantly higher levels than nurses and trainees (p = 0.0125). Nurses and attending physicians show significantly different perception of code status discussion timing, with majority of nurses (63.4%) perceiving discussions as occurring "too late" or "much too late" and majority of attending physicians (55.6%) perceiving the timing as "about right" (p<0.0001). Attending physicians report significantly higher comfort having code status discussions with families than do nurses or trainees (p0.0001). Attending physicians and trainees perceive families as more receptive to code status discussions than nurses (p<0.0001 and p = 0.0018, respectively). Conclusions: Providers have poor understanding of code status options and differ significantly in their comfort having code status discussions and their perceptions of these discussions. These findings may reflect inherent differences among providers, but may also reflect discordant visions of appropriate care and function as a potential source of moral distress. Lack of knowledge of code status options and differences in provider perceptions are likely barriers to quality communication surrounding end-of-life options.
Kruse KE; Batten J; Constantine ML; Kache S; Magnus D
Plos One
2017
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<a href="http://doi.org/10.1371/journal.pone.0187375" target="_blank" rel="noreferrer">10.1371/journal.pone.0187375</a>
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
distress syndrome; health practitioner; morality; neonatal intensive care unit; pediatric intensive care unit; Adult; Article; burnout; correlation analysis; cross-sectional study; Demography; Female; Hospital care; Human; Intensive Care; linear regression analysis; major clinical study; Male; Maslach Burnout Inventory Depersonalization Subscale; Middle Aged; Mishel Parent Perception of Uncertainty Scale; nurse; outcome assessment; physician; priority journal; Prognosis; Questionnaire; Rating Scale; Revised Moral Distress Scale; Terminal Care; tertiary care center; Uncertainty; work; Young Adult
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric tertiary care center. Subjects: Neonatal ICU and PICU health practitioners with at least 3 months of ICU experience. Interventions: A 41-item questionnaire examining moral distress, burnout, and uncertainty. Measurements and Main Results: The main outcome was moral distress measured with the Revised Moral Distress Scale. Secondary outcomes were frequency and intensity Revised Moral Distress Scale subscores, burnout measured with the Maslach Burnout Inventory depersonalization subscale, and uncertainty measured with questions adapted from Mishel's Parent Perception of Uncertainty Scale. Linear regression models were used to examine associations between participant characteristics and the measures of moral distress, burnout, and uncertainty. Two-hundred six analyzable surveys were returned. The median Revised Moral Distress Scale score was 96.5 (interquartile range, 69-133), and 58% of respondents reported significant work-related moral distress. Revised Moral Distress Scale items involving end-of-life care and communication scored highest. Moral distress was positively associated with burnout (r<sup>2</sup> = 0.27; p < 0.001) and uncertainty (r<sup>2</sup> = 0.04; p = 0.008) and inversely associated with perceived hospital supportiveness (r<sup>2</sup> = 0.18; p < 0.001). Nurses reported higher moral distress intensity than physicians (Revised Moral Distress Scale intensity subscores: 57.3 vs 44.7; p = 0.002). In nurses only, moral distress was positively associated with increasing years of ICU experience (p = 0.02) and uncertainty about whether their care was of benefit (r<sup>2</sup> = 0.11; p < 0.001) and inversely associated with uncertainty about a child's prognosis (r<sup>2</sup> = 0.03; p = 0.03). Conclusions: In this single-center, cross-sectional study, we found that moral distress is present in PICU and neonatal ICU health practitioners and is correlated with burnout, uncertainty, and feeling unsupported.
Larson CP; Dryden-Palmer KD; Gibbons C; Parshuram CS
Pediatric Critical Care Medicine
2017
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<a href="http://doi.org/10.1097/PCC.0000000000001219" target="_blank" rel="noreferrer">10.1097/PCC.0000000000001219</a>
Advanced care planning in cystic fibrosis
cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Pediatric Pulmonology
2017
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Ethics in pediatric palliative care
Ethics; palliative therapy; Adult; Child; decision making; Female; Human; Male
Pediatric palliative care is the physically, mentally and spiritually efficient care and also includes supporting of the family. Pediatric palliative care is defined as a specific field, although it is closely related to adult palliative care. Pediatric palliative care is a specific field in which ethical dilemmas are frequently encountered. In this regard, addressing of palliative care in terms of ethics is important due to its guidance both in clear understanding of the process and on ethical issues which can be encountered. In the palliative care in which a child and his/her family should be addressed together, decision-making competence of a child and issue of informed assent in decisions concerning the care and treatment come into prominence. In this article, addressing of ethical issues frequently encountered in pediatric palliative care was planned.
Torun T; Gocken C
Anestezi Dergisi
2017
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n/a
Palliative care in neonatal period and ethical issues
medical ethics; newborn care; palliative therapy; clinical decision making; communication skill; ethical decision making; family attitude; History; Human; morality; Newborn; newborn period; nurse attitude; Perinatal Care; physician attitude; review; Terminal Care
Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited, various barriers to provide palliative care were identified ranging from ethical, moral and attitudinal of physicians, nurses and families. These problems can be solved with providing for the education and training needs of physicians, GPs and nurses in aspects of palliative care, decision making in end-of-life situations, and communication skills.
Turkcapar AF
Anestezi Dergisi
2017
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).
n/a
Parental experiences with a paediatric palliative care team: A qualitative study
case management; palliative therapy; Pediatrics; qualitative research; Child; Clinical Article; concrete; coordination; expectation; Female; Human; Interview; Male; thematic analysis
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams. Aim: To obtain insight into the support provided by a new paediatric palliative care team from the parents' perspective. Design: An interpretative qualitative interview study using thematic analysis was performed. Setting/participants: A total of 47 single or repeated interviews were undertaken with 42 parents of 24 children supported by a multidisciplinary paediatric palliative care team located at a university children's hospital. The children suffered from malignant or non-malignant diseases. Results: In advance, parents had limited expectations of the paediatric palliative care team. Some had difficulty accepting the need for palliative care for their child. Once parents experienced what the team achieved for their child and family, they valued the team's involvement. Valuable elements were as follows: (1) process-related aspects such as continuity, coordination of care, and providing one reliable point of contact; (2) practical support; and (3) the team members' sensitive and reliable attitude. As a point of improvement, parents suggested more concrete clarification upfront of the content of the team's support. Conclusion: Parents feel supported by the paediatric palliative care team. The three elements valued by parents probably form the structure that underlies quality of paediatric palliative care. New teams should cover these three valuable elements.
Verberne LM; Schouten-van Meeteren AYN; Bosman DK; Colenbrander DA; Jagt CT; Grootenhuis MA; van Delden JJM; Kars MC
Palliative Medicine
2017
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="http://doi.org/10.1177/0269216317692682" target="_blank" rel="noreferrer">10.1177/0269216317692682</a>
Attitudes on pain and opioid prescription practices in cystic fibrosis centers
chronic pain; cystic fibrosis; opiate; prescription; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adult; Analgesia; Anxiety; Child; cyst; drug combination; Female; Human; Life Expectancy; Male; Mood; nurse; opiate addiction; Palliative therapy; Prevalence; quality of life; Questionnaire; sinus headache; thorax wall
Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses, chest pain, and arthralgias. Furthermore, pain interferes with general activities, mood and occupational performance in 41-57% of patients. These studies concluded that the prevalence of pain in CF patients may be underestimated and can greatly affect quality of life (Loganes C, et al. J Cyst Fibros. 2004;3:51-7; Lechtzin N, et al. Chest 2011;140:1598-603). While opioids can be effective for palliation of pain in an end-of-life setting, there are no data on the use of opioids for chronic pain management in the general CF population. Methods: A questionnaire concerning the prevalence and characteristics of pain in patients with CF was distributed to accredited pediatric and adult CF programs throughout the US. Additional questions addressing provider attitudes on pain management and opioid use were also included. Those respondents that do not utilize opioids at their center were able to skip 13 of the 30 questions. Results: Survey responses from 100 programs were analyzed. Responders who completed the survey included CF providers (67%), clinic coordinators (21%) and nurses (6%). Responses came from 51 adult core or affiliated centers (Adult Responders - AR), 36 from pediatric core or affiliated centers (Pediatric Responders - PR), and 13 were from combined programs. While most of the PR (71%) indicated that 0-10% of their patients experience chronic pain, 48% of AR reported that 11-25% of their patients have chronic pain. Furthermore, 43 of the AR said that >50% of those with chronic pain also have comorbid depression or anxiety. When asked to rank types of chronic pain, 56% of PR ranked sinus/headache symptoms as the most common, with GI pain as the second most common. AR ranked chest wall as the most frequent site (57%), with headache/sinus ranked next. Chest wall pain was the most common reason for prescribing opioids in adults with chronic pain. While most centers (83%) report that pain management in patients with CF is a very important or important issue, 48% of AR feel uncomfortable in prescribing opioids. A majority (66%) would prefer a pain specialist to be responsible for prescribing opioids, yet 49% of the CF providers are currently responsible for this task. Only 32% of AR use pain specialists. 88% of PR and 83% of AR would find guidelines on pain management helpful or very helpful. Conclusion: Chronic pain is common in adult CF patients, and management presents a formidable challenge to providers. Most providers would prefer not to prescribe opioids but are often doing so despite inadequate training and a lack of guidelines to follow. Providers have multiple concerns regarding potential drug side effects, most notably, the possibility of opioid addiction. As life expectancy increases for adult patients with CF, chronic pain will likely be more prevalent and problematic. The development of a guideline and/or collaboration with pain specialists will likely be beneficial to both patients and providers..
Yang Y; Mukadam Z; Laxova A; Meyer KC; Hollatz T
Pediatric Pulmonology
2017
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="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
medical record; palliative therapy; Terminal Care; brain disease; central nervous system disease; Child; chromosome disorder; comfort; Death; Drug withdrawal; Female; Human; Intensive care unit; life sustaining treatment; lung disease; major clinical study; Male; Resuscitation; Study Design; Young Adult
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (nā=ā114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62.7%) with more than one-half (53.3%) dying in the intensive care unit. Those with static encephalopathy (AOR, 0.19; 95% CI, 0.04-0.98), congenital and chromosomal disorders (AOR, 0.28; 95% CI, 0.09-0.91), and pulmonary disorders (AOR, 0.08; 95% CI, 0.01-0.77) were significantly less likely to die at home compared with those with progressive central nervous system (CNS) disorders. Almost 50% of patients died after withdrawal or withholding of life-sustaining therapies, 17.5% died during active resuscitation, and 36% died while receiving comfort care only. The mode of death varied widely across LT-CCCs, with no patients with pulmonary disorders dying receiving comfort care only compared with 66.7% of those with CNS progressive disorders. A majority of patients had palliative care involvement (79.3%); however, in multivariable analyses, there was distinct variation in receipt of palliative care across LT-CCCs, with patients having CNS static encephalopathy (AOR, 0.07; 95% CI, 0.01-0.68) and pulmonary disorders (AOR, 0.07; 95% CI, 0.01-.09) significantly less likely to have palliative care involvement than those with CNS progressive disorders. CONCLUSIONS: Significant differences in patterns of care at the end of life exist depending on LT-CCC type. Attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.
DeCourcey DD; Silverman M; Oladunjoye A; Balkin Emily M; Wolfe J
The Journal Of Pediatrics
2017
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="http://doi.org/10.1016/j.jpeds.2017.09.078" target="_blank" rel="noreferrer">10.1016/j.jpeds.2017.09.078</a>