"The worst journey of our lives": parents' experiences of a specialised paediatric retrieval service
Child; Humans; Intensive Care Units; Pediatric; retrospective studies; Nonparametric; Statistics; ICU Decision Making; Parents/psychology; London; Consumer Satisfaction/statistics & numerical data; Transportation of Patients/standards
In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all parents were routinely provided with written information about the retrieval service, only 46% remember receiving it. Also, although generally high, satisfaction ratings relating to the period of the child's transit were significantly lower (P<0.005) than those relating to the other stages of the transfer. Two main reasons were given by parents for their dissatisfaction: distress at being separated from their critically ill child and logistic problems locating and parking at the new hospital. Implications for future service provision are considered.
2003
Colville G; Orr F; Gracey D
Intensive and Critical Care Nursing
2003
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).
Journal Article
<a href="http://doi.org/10.1016/s0964-3397(03)00022-3" target="_blank" rel="noreferrer">10.1016/s0964-3397(03)00022-3</a>
A communication strategy and brochure for relatives of patients dying in the ICU
Female; Humans; Male; Intensive Care Units; Aged; Middle Aged; Professional-Family Relations; Communication; 80 and over; bereavement; Terminally Ill/psychology; Family/psychology; ICU Decision Making; Stress Disorders; Depression/epidemiology; Pamphlets; Anxiety/epidemiology; Post-Traumatic/epidemiology/prevention & control; Visitors to Patients/psychology
BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of bereavement. METHODS: Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention format or to the customary end-of-life conference. Participants were interviewed by telephone 90 days after the death with the use of the Impact of Event Scale (IES; scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to post-traumatic stress disorder [PTSD]) and the Hospital Anxiety and Depression Scale (HADS; subscale scores range from 0, indicating no distress, to 21, indicating maximum distress). RESULTS: Participants in the intervention group had longer conferences than those in the control group (median, 30 minutes [interquartile range, 19 to 45] vs. 20 minutes [interquartile range, 15 to 30]; P<0.001) and spent more of the time talking (median, 14 minutes [interquartile range, 8 to 20] vs. 5 minutes [interquartile range, 5 to 10]). On day 90, the 56 participants in the intervention group who responded to the telephone interview had a significantly lower median IES score than the 52 participants in the control group (27 vs. 39, P=0.02) and a lower prevalence of PTSD-related symptoms (45% vs. 69%, P=0.01). The median HADS score was also lower in the intervention group (11, vs. 17 in the control group; P=0.004), and symptoms of both anxiety and depression were less prevalent (anxiety, 45% vs. 67%; P=0.02; depression, 29% vs. 56%; P=0.003). CONCLUSIONS: Providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication strategy that includes longer conferences and more time for family members to talk may lessen the burden of bereavement. (ClinicalTrials.gov number, NCT00331877.)
2007
Lautrette A; Darmon M; Megarbane B; Joly LM; Chevret S; Adrie C; Barnoud D; Bleichner G; Bruel C; Choukroun G; Curtis JR; Fieux F; Galliot R; Garrouste-Orgeas M; Georges H; Goldgran-Toledano D; Jourdain M; Loubert G; Reignier J; Saidi F; Souweine B; Vincent F; Barnes NK; Pochard F; Schlemmer B; Azoulay E
The New England Journal Of Medicine
2007
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Journal Article
<a href="http://doi.org/10.1056/NEJMoa063446" target="_blank" rel="noreferrer">10.1056/NEJMoa063446</a>
A descriptive study of children dying in the pediatric intensive care unit after withdrawal of life-sustaining treatment
Child; Female; Humans; Male; Intensive Care Units; Palliative Care; Euthanasia; Patient Participation; Time Factors; Pediatric; adolescent; Preschool; infant; retrospective studies; ICU Decision Making; Parents/psychology; Analgesics/administration & dosage; Hypnotics and Sedatives/administration & dosage; Passive; Neuromuscular Blockade
OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who had life-sustaining treatment withdrawn over a 5-yr period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 125 charts were examined to obtain 50 in which the terminal event preceding death was withdrawal of life-sustaining treatment. Data are expressed as median (1st, 3rd quartiles). Median hospital stay before death was 20 days (1st and 3rd quartiles, 8 and 30). Median time from decision to withdraw life-sustaining treatment to actual withdrawal was 30 mins (1st and 3rd quartiles, 10 and 180). All interventions were simultaneously discontinued in 80% of patients with mechanical ventilation followed by vasopressors being most common. No patients had stepwise reduction in ventilator rate before discontinuing the mechanical ventilation. Devices were rarely removed from patients including endotracheal tubes. Time from withdrawal of life-sustaining treatment to death was 15 mins (5, 30); only seven patients took >60 mins to die. Multivariable analysis (Kruskal-Wallis test) of various factors revealed simultaneous withdrawal of life-sustaining treatment, female gender, and not having received renal therapy as hastening death. CONCLUSIONS: Forgoing life-sustaining treatment in a small cohort of children at a single institution follows a pattern: Most cases occur after prolonged intensive care unit stays, withdrawal of treatment occurs almost immediately after the decision to withdraw, most treatments are withdrawn simultaneously rather than sequentially, and most patients die within minutes of life-sustaining treatment cessation. This is the first pediatric study to report the time to death after withdrawal of life-sustaining treatment and factors associated with shorter time to death in children.
2004
Zawistowski CA; DeVita MA
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000123547.28099.44" target="_blank" rel="noreferrer">10.1097/01.pcc.0000123547.28099.44</a>
Acute and chronic paediatric intensive care patients: current trends and perspectives on resource utilization
Child; Female; Humans; infant; Male; Intensive Care Units; Hospital Mortality; Prospective Studies; Length of Stay; Respiration; Severity of Illness Index; Analysis of Variance; adolescent; Preschool; infant; Newborn; Pediatric/utilization; ICU Decision Making; Greece; Acute Disease/mortality/therapy; Artificial/methods; Chronic Disease/mortality/therapy; Health Resources/trends/utilization
BACKGROUND: Advances in paediatric critical care have resulted in increased survival of critically ill patients, many of whom require long-term ventilation as a means of life support. AIM: To determine current trends in resource utilization, and problems in the care of acute and chronic paediatric intensive care patients. DESIGN: Open observational study. METHODS: We evaluated consecutive admissions (n = 1629) to a 10-bed paediatric intensive care unit (PICU) over a 5-year period. Three previously defined criteria for resource utilization were used: mean length of stay (LOS); length of mechanical ventilation (LOMV); and LOMV/LOS ratio. RESULTS: A total of 10 310 patient bed days and 5223 ventilator days were used. Mean LOS increased from 5.3 +/- 12 days in 1998 to 8.7 +/- 27 days in 2001 (p 2 weeks (n = 320, 20%) used 55% of LOS and 57% of LOMV, in contrast to the 1298 (80%) hospitalized for 3 months (11, 0.7%) consumed 17% of LOS and 23% of LOMV. Five of these (45%) were eventually discharged home, two on ventilators. CONCLUSION: The increasing trend of occupation of PICU bed and ventilator days by critically ill children may be related to the increasing trend for hospitalization of chronic care patients. Severity scoring systems were predictive of resource consumption, but not of the overall trend in mortality rate.
2004
Briassoulis G; Filippou O; Natsi L; Mavrikiou M; Hatzis T
Monthly Journal Of The Association Of Physicians
2004
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Journal Article
<a href="http://doi.org/10.1093/qjmed/hch087" target="_blank" rel="noreferrer">10.1093/qjmed/hch087</a>
Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
Child; Cross-Sectional Studies; Female; Humans; infant; Male; United States; Mental Competency; Adult; Data Collection; Attitude of Health Personnel; Middle Aged; Professional-Family Relations; Euthanasia; Religion and Medicine; Legal Guardians; Morals; Intensive Care; Hospitals; Ethics; Teaching; Medical; decision making; Newborn; ICU Decision Making; Passive
OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study.PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.
2003
Hardart GE; Truog RD
Critical Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">10.1097/01.ccm.0000084805.15352.01</a>
Attitudes toward limitation of support in a pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Medical Futility; Prospective Studies; Euthanasia; Ethics; Medical; quality of life; Pediatric; patient care team; Caregivers/psychology; ICU Decision Making; Resuscitation Orders/psychology; Passive/psychology; Life Support Care/psychology
OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits were collected over time. DESIGN: Prospective survey of caregiver opinions. SETTING: PICU in an academic tertiary care children's hospital. SUBJECTS: A total of 68 intensive care nurses, 11 physicians attending in the PICU, 10 critical care and anesthesia fellows, and 24 anesthesia and pediatric residents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a 6-month period, 503 patients were admitted to the PICU. Within this time period, 52.4% of all deaths were preceded by limitation of support, with 100% of noncardiac surgical deaths preceded by limitation of medical interventions. At least one caregiver wished to limit care for 63 of these patients (12.5%). When caregivers wished to limit support they most frequently wished to limit invasive modes of support such as cardiopulmonary resuscitation (94%) and hemodialysis (83%). The ethical rationales identified most often for wishing to limit support were burden vs. benefit (88%) and qualitative futility (83%). Preadmission quality of life was cited less frequently (50%). Caregivers were less likely to limit care on the basis of quality of life. Nurses and physicians in the PICU were very similar to each other in the types of support they thought should be limited and their ethical rationales. CONCLUSIONS: When making decisions about whether or not to limit care for a patient, caregivers were more likely to rely on the perceived benefit to the patient than preadmission quality of life.
2000
Keenan HT; Diekema DS; O'Rourke PP; Cummings P; Woodrum DE
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200005000-00055" target="_blank" rel="noreferrer">10.1097/00003246-200005000-00055</a>
Characteristics of deaths occurring in children's hospitals: implications for supportive care services
Child; Humans; Hospital Mortality; Respiration; Hospitals; ICU Decision Making; Hospitalization/statistics & numerical data; Artificial; Pediatric/statistics & numerical data; Terminal Care/methods; Length of Stay/statistics & numerical data; Chronic Disease/epidemiology/mortality/therapy
CONTEXT: End-of-life care is an important yet underdeveloped component of pediatric hospital services. OBJECTIVES: We sought 1) to describe the demographics of children who die in children's hospitals, 2) to describe the prevalence of complex chronic conditions (CCCs) among these cases, and 3) to test the hypotheses that cases with a greater number of CCC diagnoses experience longer periods both of mechanical ventilation and of hospitalization before death. Design and Methods. We identified all deaths of patients 0 to 24 years old that occurred in the 60 hospitals contributing discharge data to the National Association of Children's Hospitals and Related Institutions data consortium for the years 1991, 1994, and 1997. We classified discharge diagnoses into 9 major categories of CCCs (cardiovascular, neuromuscular, malignancy, respiratory, renal, metabolic, gastrointestinal, hematologic/immunologic, and other congenital/genetic). RESULTS: Of the 13 761 deaths identified, 42% had been admitted between 0 and 28 days of life, 18% between 1 and 12 months, 25% between 1 and 9 years, and 15% between 10 and 24 years. Fifty-three percent were white, 20% were black, and 9% were Hispanic. The principal payer was listed as a governmental source for 42% and a private insurance company for 35%. Based on all the discharge diagnoses recorded for each case, 40% had no CCC diagnosis, 44% had diagnoses representing 1 major CCC category, 13% had diagnoses representing 2 CCC categories, and 4% had diagnoses representing 3 or more CCC categories. Among cases that had no CCC diagnoses, the principal diagnoses were related to prematurity and newborn disorders for 32% of these cases, injuries and poisoning for 26%, and an assortment of acute and infectious processes for the remaining 42%. Mechanical ventilation was provided to 66% of neonates, 40% of infants, 36% of children, and 36% of adolescents. Cases with CCCs were more likely than non-CCC cases to have been mechanically ventilated (52% vs 46%), and to have been ventilated longer (mean: 11.7 days for CCC cases vs 4.8 days for non-CCC cases). The median duration of hospitalization was 4 days, while the mean was 16.4 days. After adjustment for age, sex, year, and principal payer, compared with patients with no CCC diagnoses, those with 1 major CCC category had a significantly lower hazard of dying soon after admission (hazard ratio [HR]: 0.60; 95% confidence interval [CI]: 0.57-0.62), those with 2 CCC categories even lower (HR: 0.53; 95% CI: 0.50-0.57), and those with 3 or more CCC categories the lowest hazard of rapid death (HR: 0.51; 95% CI: 0.46-0.57). This trend of diminishing hazard of rapid death was significant across the 3 groups of children with 1 or more CCCs. CONCLUSIONS: Children's hospitals care for a substantial number of dying patients, who differ widely by age and medical conditions. Children who die in the hospital with CCCs are more likely to experience longer periods of mechanical ventilation and hospitalization before death.
2002
Feudtner C; Christakis DA; Zimmerman FJ; Muldoon JH; Neff JM; Koepsell TD
Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1542/peds.109.5.887" target="_blank" rel="noreferrer">10.1542/peds.109.5.887</a>
Characteristics of deaths occurring in hospitalised children: changing trends
ICU Decision Making
BACKGROUND: Despite a gradual shift in the focus of medical care among terminally ill patients to a palliative model, studies suggest that many children with life‐limiting chronic illnesses continue to die in hospital after prolonged periods of inpatient admission and mechanical ventilation. OBJECTIVES: To (1) examine the characteristics and location of death among hospitalised children, (2) investigate yearwise trends in these characteristics and (3) test the hypothesis that professional ethical guidance from the UK Royal College of Paediatrics and Child Health (1997) would lead to significant changes in the characteristics of death among hospitalised children. METHODS: Routine administrative data from one large tertiary‐level UK children's hospital was examined over a 7‐year period (1997–2004) for children aged 0–18 years. Demographic details, location of deaths, source of admission (within hospital vs external), length of stay and final diagnoses (International Classification of Diseases‐10 codes) were studied. Statistical significance was tested by the Kruskal–Wallis analysis of ranks and median test (non‐parametric variables), χ(2) test (proportions) and Cochran–Armitage test (linear trends). RESULTS: Of the 1127 deaths occurring in hospital over the 7‐year period, the majority (57.7%) were among infants. The main diagnoses at death included congenital malformations (22.2%), perinatal diseases (18.1%), cardiovascular disorders (14.9%) and neoplasms (12.4%). Most deaths occurred in an intensive care unit (ICU) environment (85.7%), with a significant increase over the years (80.1% in 1997 to 90.6% in 2004). There was a clear increase in the proportion of admissions from in‐hospital among the ICU cohort (14.8% in 1998 to 24.8% in 2004). Infants with congenital malformations and perinatal conditions were more likely to die in an ICU (OR 2.42, 95% CI 1.65 to 3.55), and older children with malignancy outside the ICU (OR 6.5, 95% CI 4.4 to 9.6). Children stayed for a median of 13 days (interquartile range 4.0–23.25 days) on a hospital ward before being admitted to an ICU where they died. CONCLUSIONS: A greater proportion of hospitalised children are dying in an ICU environment. Our experience indicates that professional ethical guidance by itself may be inadequate in reversing the trends observed in this study.
2007-05
Ramnarayan P; Craig F; Petros A; Pierce C
Journal Of Medical Ethics
2007
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Journal Article
<a href="http://doi.org/10.1136/jme.2005.015768" target="_blank" rel="noreferrer">10.1136/jme.2005.015768</a>
Circumstances surrounding end of life in a pediatric intensive care unit
Child; Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Withholding Treatment; Attitude to Death; Resuscitation Orders; Ontario; Analgesia; Treatment Failure; Pediatric; adolescent; Preschool; patient care team; decision making; infant; Newborn; ICU Decision Making; cause of death; Parents/psychology; Physicians/psychology; Terminal Care/psychology
OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting. METHODS: We conducted a prospective, descriptive study based on a survey with the intensivist after every consecutive death during an 8-month period in a single multidisciplinary pediatric intensive care unit. Summary statistics are presented as percentage, mean +/- standard deviation, or median and range; data are compared using the Mantel-Haenszel test and shown as survival curves. RESULTS: Of the 99 observed deaths, 27 involved failed cardiopulmonary resuscitation; of the remaining 72, 39 followed withdrawal/limitation (W/LT) of LST, 20 were do not resuscitate (DNR), and 13 were brain deaths (BDs). Families initiated discussions about forgoing LST in 24% (17 of 72) of cases. Consensus between caregivers and staff about forgoing LST as the best approach was reached after the first meeting with 51% (35 of 68) of families; 46% (31 of 68) required >or=2 meetings (4 not reported). In the DNR group, the median time to death after consensus was 24 hours and for W/LT was 3 hours. LST was later withdrawn in 11 of 20 DNR cases. The family was present in 76% (45 of 59) of cases when LST was forgone. The dying patient was held by the family in 78% (35 of 45) of these occasions. CONCLUSIONS: More than 1 formal meeting was required to reach consensus with families about forgoing LST in almost half of the patients. Families often held their child at the time of death. The majority of children died quickly after the end-of-life decision was made.
2003
Garros D; Rosychuk RJ; Cox PN
Pediatrics
2003
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Journal Article
<a href="http://doi.org/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">10.1542/peds.112.5.e371</a>
Communication between physician, patient, and family in the pediatric intensive care unit
Child; Humans; Intensive Care Units; Grief; Physician-Patient Relations; Attitude of Health Personnel; Education; Professional-Family Relations; Communication; Physician's Role; Patient Satisfaction; Internal-External Control; Defense Mechanisms; Power (Psychology); Kinesics; Pediatric; Adaptation; Psychological; patient care team; Parents/education/psychology; ICU Decision Making; empathy; humanism; Medical/methods; Anxiety/prevention & control/psychology
1993
Todres ID
Critical Care Medicine
1993
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Journal Article
<a href="http://doi.org/10.1097/00003246-199309001-00053" target="_blank" rel="noreferrer">10.1097/00003246-199309001-00053</a>
Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors
Female; Humans; Male; Adult; Prospective Studies; Aged; Middle Aged; Family Relations; Professional-Family Relations; Boston; Communication Barriers; Length of Stay; Dissent and Disputes; Interprofessional Relations; Time Factors; Reproducibility of Results; Case-Control Studies; 80 and over; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; Intensive Care/statistics & numerical data
OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the patients' stays. We then classified conflicts by type and source and used a case-control design to identify predictors of team-family conflicts. DESIGN AND SETTING: Seven medical and surgical ICUs at four teaching hospitals in Boston, USA. PATIENTS: All patients admitted to the participating ICUs over an 11-month period whose stay exceeded the 85th percentile length of stay for their respective unit ( n=656). MEASUREMENTS AND RESULTS: Clinicians identified 248 conflicts involving 209 patients; hence, nearly one-third of patients had conflict associated with their care: 142 conflicts (57%) were team-family disputes, 76 (31%) were intrateam disputes, and 30 (12%) occurred among family members. Disagreements over life-sustaining treatment led to 63 team-family conflicts (44%). Other leading sources were poor communication (44%), the unavailability of family decision makers (15%), and the surrogates' (perceived) inability to make decisions (16%). Nurses detected all types of conflict more frequently than physicians, especially intrateam conflicts. The presence of a spouse reduced the probability of team-family conflict generally (odds ratio 0.64) and team-family disputes over life-sustaining treatment specifically (odds ratio 0.49). CONCLUSIONS: Conflict is common in the care of patients with prolonged stays in the ICU. However, efforts to improve the quality of care for critically ill patients that focus on team-family disagreements over life-sustaining treatment miss significant discord in a variety of other areas.
2003
Studdert DM; Mello MM; Burns JP; Puopolo AL; Galper BZ; Truog RD; Brennan T
Intensive Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1007/s00134-003-1853-5" target="_blank" rel="noreferrer">10.1007/s00134-003-1853-5</a>
Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population
Child; Female; Humans; Male; Intensive Care Units; Cohort Studies; Critical Illness; Hospitals; Chi-Square Distribution; Pediatric; adolescent; Preschool; infant; Chronic disease; Nonparametric; Statistics; ICU Decision Making; Pediatric/statistics & numerical data; Length of Stay/statistics & numerical data; Boston/epidemiology; Developmental Disabilities/classification/epidemiology
OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care resources. DESIGN: Twelve-month, inception cohort study. SETTING: Intensive care unit at an urban, tertiary care pediatric hospital. PATIENTS AND METHODS: All pediatric intensive care unit admissions were screened for preexisting neurodevelopmental diagnoses. Computerized and chart-based medical records were reviewed for demographic, clinical, and outcome data. RESULTS: A total of 309 children with congenital neurodevelopmental diagnoses accounted for 427 pediatric intensive care unit admissions. This represented 23% of the total 1,820 admissions in 1 yr. Trisomy 21 was the most identifiable developmental abnormality (n = 25, 8%). Eighty-five percent of the children were cared for at home before hospitalization. A total of 220 of the admissions (52%) demonstrated a preexisting technology dependence. Fewer children admitted from the home-care setting had tracheostomies or were ventilator dependent. The majority of admissions were scheduled surgical admissions (45%) or for management of acute respiratory illness (26%). Of the patients with preexisting tracheostomy, nonrespiratory conditions accounted for 70% of acute admitting diagnoses. Two hundred twenty-three of the admissions (52%) required noninvasive or transtracheal ventilatory support, yet the length of stay and mortality rate were consistent with those reported in other general pediatric intensive care unit populations. The average and median length of stay were 5.4 and 2.0 days, respectively. Mortality rate was 3%. Technology support needs at discharge increased significantly from admission for enterostomy support (p =.008) and mechanical ventilation (p =.008). CONCLUSIONS: Children with congenital or perinatally acquired neurodevelopmental diagnoses represented nearly one quarter of all pediatric intensive care unit admissions at a tertiary academic center. This population has substantial ongoing medical needs, requiring utilization of intensive care resources. More rigorous investigations are needed to determine the effect of this burgeoning population in pediatric critical care, to optimize their care, and to meet the comprehensive needs of their families.
2004
Graham RJ; Dumas HM; O'Brien JE; Burns JP
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000128892.38431.2b" target="_blank" rel="noreferrer">10.1097/01.pcc.0000128892.38431.2b</a>
Considerations about hastening death among parents of children who die of cancer
ICU Decision Making
OBJECTIVES: To estimate the frequency of hastening death discussions, describe current parental endorsement of hastening death and intensive symptom management, and explore whether children's pain influences these views in a sample of parents whose child died of cancer. DESIGN: Cross-sectional survey. SETTING: Two tertiary-care US pediatric institutions. PARTICIPANTS: A total of 141 parents of children who died of cancer (response rate, 64%). OUTCOME MEASURES: Proportion of parents who (1) considered or (2) discussed hastening death during the child's end of life and who endorsed (3) hastening death or (4) intensive symptom management in vignettes portraying children with end-stage cancer. RESULTS: A total of 19 of 141 (13%; 95% confidence interval [CI], 8%-19%) parents considered requesting hastened death for their child and 9% (95% CI, 4%-14%) discussed hastening death; consideration of hastening death tended to increase with an increase in the child's suffering from pain. In retrospect, 34% (95% CI, 26%-42%) of parents reported that they would have considered hastening their child's death had the child been in uncontrollable pain, while 15% or less would consider hastening death for nonphysical suffering. In response to vignettes, 50% (95% CI, 42%-58%) of parents endorsed hastening death while 94% (95% CI, 90%-98%) endorsed intensive pain management. Parents were more likely to endorse hastening death if the vignette involved a child in pain compared with coma (odds ratio, 1.4; 95% CI, 1.1-1.8). CONCLUSIONS: More than 10% of parents considered hastening their child's death; this was more likely if the child was in pain. Attention to pain and suffering and education about intensive symptom management may mitigate consideration of hastening death among parents of children with cancer.
2010
Dussel V; Joffe S; Hilden JM; Watterson-Schaeffer J; Weeks JC; Wolfe J
Archives Of Pediatrics & Adolescent Medicine
2010
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.295" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.295</a>
Death in the intensive care nursery: physician practice of withdrawing and withholding life support
Humans; infant; Intensive Care Units; Medical Futility; Euthanasia; Life Support Care; quality of life; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Newborn; ICU Decision Making; Very Low Birth Weight; Passive; San Francisco; Life Support Systems; University of California
OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists for their decisions to withdraw or withhold life support. METHODS: This was a descriptive study based on review of the medical records of all 165 infants who died at a university-based level III ICN during 3 years. We determined whether each death had occurred despite the use of all available technologies to keep the infant alive or whether these were withheld or withdrawn, thereby leading to the infant's death. We also determined whether neonatologists documented either "futility" or "quality of life" as a reason to limit medical interventions. RESULTS: One hundred sixty-five infants died among the 1609 infants admitted during the study period. One hundred eight infant deaths followed the withdrawal of life support, 13 deaths followed the withholding of treatment, and 44 deaths occurred while infants continued to receive maximal life-sustaining treatment. For 90 (74%) of the 121 deaths attributable to withholding of withdrawal of treatment, physicians cited that death was imminent and treatment was futile. Quality-of-life concerns were cited by the neonatologists as reasons to limit treatment in 62 (51%). Quality of life was the only reason cited for limiting treatment for 28 (23%) of the 121 deaths attributable to withholding or withdrawal of treatment. CONCLUSIONS: The majority of deaths in the ICN occurred as a result of selective nontreatment by neonatologists, with few infants receiving maximal support until the actual time of death. Neonatologists often documented that quality-of-life concerns were considered in decisions to limit treatment; however, the majority of these decisions were based on their belief that treatment was futile. Prospective studies are needed to elucidate the determinants of neonatologists' practice decisions of selective nontreatment for marginally viable or damaged infants.
1997
Wall SN; Partridge JC
Pediatrics
1997
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).
Journal Article
<a href="http://doi.org/10.1097/00006254-199706000-00009" target="_blank" rel="noreferrer">10.1097/00006254-199706000-00009</a>
Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services
Child; Female; Humans; Male; Adult; adolescent; Pediatrics/statistics & numerical data; ICU Decision Making; cause of death; United States/epidemiology; Mortality/trends; Chronic Disease/epidemiology/mortality
BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do not know, however, the extent of this population or how it is changing over time. OBJECTIVES: To identify trends over the past 2 decades in the pattern of deaths attributable to pediatric CCCs, examining counts and rates of CCC-attributed deaths by cause and age (infancy: <1 year old, childhood: 1-9 years old, adolescence or young adulthood: 10-24 years old) at the time of death, and to determine the average number of children living within the last 6 months of their lives. DESIGN/METHODS: We conducted a retrospective cohort study using national death certificate data and census estimates from the National Center for Health Statistics. Participants included all people 0 to 24 years old in the United States from 1979 to 1997. CCCs comprised a broad array of International Classification of Diseases, Ninth Revision codes for cardiac, malignancy, neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency, metabolic, genetic, and other congenital anomalies. Trends of counts and rates were tested using negative binomial regression. RESULTS: Of the 1.75 million deaths that occurred in 0- to 24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs, 16% to noncancer CCCs, 43% to injuries, and 37% to all other causes of death. Overall, both counts and rates of CCC-attributed deaths have trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the average numbers of children alive who would die because of a CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults. CONCLUSIONS: Population-based planning of pediatric supportive care services should use measures that best inform our need to provide care for time-limited events (perideath or bereavement care) versus care for ongoing needs (home nursing or hospice). Pediatric supportive care services will need to serve patients with a broad range of CCCs from infancy into adulthood.
2001
Feudtner C; Hays RM; Haynes G; et al
Pediatrics
2001
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).
Journal Article
<a href="http://doi.org/10.1542/peds.107.6.e99" target="_blank" rel="noreferrer">10.1542/peds.107.6.e99</a>
Decision making and satisfaction with care in the pediatric intensive care unit: findings from a controlled clinical trial
Child; Female; Humans; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Boston; Life Support Care; Conflict (Psychology); Consumer Satisfaction; Counseling; Pediatric; decision making; Nonparametric; Statistics; ICU Decision Making
OBJECTIVE: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit. DESIGN: Prospective observational study followed by a nonrandomized controlled trial of a clinical intervention to identify conflicts and facilitate communication between families and the clinical team. SETTING: The pediatric intensive care unit of a Boston teaching hospital. PATIENTS: A total of 127 patients receiving care in the pediatric intensive care unit in 1998-1999 and their families. INTERVENTIONS: Interviews were conducted with surrogates and decisionally capable older children concerning the adequacy of information provided, understanding, communication, and perceived decisional conflicts. Findings were relayed to the clinical team, who then developed tailored follow-up recommendations. MEASUREMENTS AND MAIN RESULTS: A survey administered to surrogates at baseline and day 7 or intensive care unit discharge measured satisfaction with care. Information on patient acuity and hospital stay were extracted from medical records and hospital databases. Wilcoxon rank-sum tests and incidence rate comparisons were used to assess the impact of the intervention on satisfaction and sentinel decision making, respectively. Incidence rates of care plan decision making, including decisions to adopt a comfort-care-only plan and decisions to forego resuscitation, were lower among families who received the intervention. The intervention did not significantly affect satisfaction with care. CONCLUSIONS: Prospectively screening for and intervening to mitigate potential conflict did not increase decision making or parental satisfaction with the care provided in this pediatric intensive care unit.
2004
Mello MM; Burns JP; Truog RD; Studdert DM; Puopolo AL; Brennan T
Pediatric Critical Care Medicine
2004
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).
Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000102413.32891.E5" target="_blank" rel="noreferrer">10.1097/01.PCC.0000102413.32891.E5</a>
Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death
Female; Humans; Male; Hospital Mortality; Prospective Studies; Aged; Middle Aged; Comorbidity; Resuscitation Orders; Severity of Illness Index; Survival Analysis; Risk Factors; Hospitals; Analysis of Variance; Predictive Value of Tests; Proportional Hazards Models; Teaching; 80 and over; Empirical Approach; Death and Euthanasia; decision making; ICU Decision Making; Intensive Care Units/statistics & numerical data; APACHE; Critical Care/statistics & numerical data; Life Support Care/statistics & numerical data; Paris/epidemiology; Withholding Treatment/statistics & numerical data
OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute medical disorders, other factors may influence the likelihood of DFLSTs. The objectives of this study were to describe the factors and mortality associated with DFLSTs and to evaluate the potential independent impact of DFLSTs on hospital mortality. DESIGN AND SETTING: Prospective multicenter 2-year study in six ICUs in France. PATIENTS: The 1,698 patients admitted to the participating ICUs during the study period, including 295 (17.4%) with DFLSTs. MEASUREMENTS AND RESULTS: The impact of DFLSTs on hospital mortality was evaluated using a model that incorporates changes in daily logistic organ dysfunction scores during the first ICU week. Univariate predictors of death included demographic factors (age, gender), comorbidities, reasons for ICU admission, severity scores at ICU admission, and DFLSTs. In a stepwise Cox model five variables independently predicted mortality: good chronic health status (hazard ratio, 0.479), SAPS II score higher than 39 (2.05), chronic liver disease (1.463), daily logistic organ dysfunction score (1.357 per point), and DFLSTs (1.887). CONCLUSIONS: DFLSTs remain independently associated with death after adjusting on comorbidities and severity at ICU admission and within the first ICU week. This highlights the need for further clarifying the many determinants of DFLSTs and for routinely collecting DFLSTs in studies with survival as the outcome variable of interest.
2003
Azoulay E; Pochard F; Garrouste-Orgeas M; Moreau D; Montesino L; Adrie C; deLassence A; Cohen Y; Timsit JF; Outcomerea Study Group
Intensive Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1007/s00134-003-1989-3" target="_blank" rel="noreferrer">10.1007/s00134-003-1989-3</a>
Differences in pediatric ICU mortality risk over time
Child; Humans; Intensive Care Units; Logistic Models; Prospective Studies; Age Factors; Severity of Illness Index; Risk Assessment; Hospitals; Reproducibility of Results; Predictive Value of Tests; Pediatric; ICU Decision Making; United States/epidemiology; Age Distribution; Health Care; Quality Assurance; Hospital Mortality/trends; Hospital Bed Capacity; Intensive Care/standards/trends; Pediatric/standards/statistics & numerical data/trends; University
OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND SETTING: Consecutive admissions (n = 10,833) from 16 pediatric ICUs across the United States that participate in the Pediatric Critical Care Study Group were recorded prospectively. Data collection occurred during a 12-mo period beginning in January 1993. METHODS: Data collection for the development and validation of the original Pediatric Risk of Mortality (PRISM) score occurred from 1980 to 1985. The original PRISM coefficients were used to calculate mortality probabilities in the current data set. Updated estimates of mortality probabilities were calculated, using coefficients from a logistic regression analysis using the original PRISM variable set. Quality-of-care tests were performed using standardized mortality ratios. RESULTS: Risk of mortality from pediatric ICU admission improved considerably between the two periods. Overall, the reduction in mortality risk averaged 15% (p < .001). Analysis of mortality risk by age indicated a large improvement for younger infants. The mortality risk for infants <1 mo improved by 39% (p < .001). Mortality risk improved by 28% (p < .001) for infants between 1 and 12 mos. Analysis of mortality risk by principal diagnosis indicated substantial improvement in respiratory diseases, including respiratory diseases developing in the perinatal period. The mortality risk for respiratory diseases improved by 45% (p < .001). The improvement in mortality risk substantially deteriorated the calibration of the original PRISM severity system (p < .001). As a result of changing mortality risk, the standardized mortality ratios across the 16 pediatric ICUs demonstrated substantial disparities, depending on the choice of models. CONCLUSIONS: This study documents differences in pediatric ICU risk of mortality over time that are consistent with a general improvement in the quality of pediatric intensive care. Despite continued widespread use of the original PRISM, recent improvements in pediatric ICU quality of care have negated its usefulness for many intended applications, including quality-of-care assessment.
1998
Tilford JM; Roberson PK; Lensing S; Fiser DH
Critical Care Medicine
1998
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Journal Article
<a href="http://doi.org/10.1097/00003246-199810000-00032" target="_blank" rel="noreferrer">10.1097/00003246-199810000-00032</a>
Do parents want to be present during invasive procedures performed on their children in the emergency department? A survey of 400 parents
Child; Female; Humans; Adult; Attitude to Health; Questionnaires; Aged; Middle Aged; Choice Behavior; adolescent; ICU Decision Making; Parents/psychology; Intubation; Cardiopulmonary Resuscitation/psychology; Emergency Treatment/psychology; Hospitalized/psychology; Intratracheal/psychology; Patients' Rooms; Penetrating/therapy; Phlebotomy/psychology; Spinal Puncture/psychology; Wounds
STUDY OBJECTIVES: No large study has addressed whether parents want to be present when invasive procedures are performed on their children in the emergency department. We conducted a survey to address this question. METHODS: The study used a self-administered, written survey consisting of 5 pediatric scenarios with increasing level of procedural invasiveness. Parents in an urban, teaching hospital ED waiting area were asked to participate. RESULTS: Of 407 persons asked to participate, 400 (98%) completed the survey. The number of parents expressing a desire to be present during a procedure performed on their child was 387 (97.5%) for venipuncture of the extremity, 375 (94.0%) for laceration repair, 341 (86.5%) for lumbar puncture, and 317 (80.9%) for endotracheal intubation. For a major resuscitation scenario, 316 (80.7%) wished to be present if their child were conscious during the resuscitation, 277 (71.4%) wanted to be present if their child were unconscious during the resuscitation, whereas 322 (83.4%) indicated a desire to be present if their child were likely to die during the resuscitation. Of the 400, 261 (65.3%) wished to be present for all 5 scenarios. Only 26 (6.5%) wanted the physician to determine parental presence in all 5 scenarios. CONCLUSION: Most parents surveyed would want to be present when invasive procedures are performed on their children. With increasing procedural invasiveness, parental desire to be present decreased. However, most parents would want to be in attendance if their child were likely to die, and nearly all parents want to participate in the decision about their presence.
1999
Boie ET; Moore GP; Brummett C; Nelson DR
Annals Of Emergency Medicine
1999
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Journal Article
<a href="http://doi.org/10.1016/s0196-0644(99)70274-x" target="_blank" rel="noreferrer">10.1016/s0196-0644(99)70274-x</a>
Dutch law leads to confusion over when to use life ending treatment in suffering newborns
hospice; ICU Decision Making; Assisted dying; End of life decisions (ethics); End of life decisions (geriatric medicine); End of life decisions (palliative care); Homicide; Pain (neurology)
2009
Sheldon T
Bmj
2009
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Journal Article
<a href="http://doi.org/10.1136/bmj.b5474" target="_blank" rel="noreferrer">10.1136/bmj.b5474</a>
Encouraging and discouraging talk about illness progression, dying and death: a systematic review of communication research
ICU Decision Making; Best Practices (Davies)
Introduction Communicating with patients about their feelings and preferences for the future is a challenging element of palliative care. Useful evidence exists, but most is embedded in social-scientific rather than clinical research.Aims and Methods To collate evidence about communication practices used in addressing sensitive future issues, from studies where patient/professional conversations have been recorded and analysed. To inform communication policy, practice and training. This innovative systematic review spanned social science, clinical and linguistics research. Using explicit criteria, we searched electronic databases and specialist sources. We used review and synthesis techniques appropriate for social-science research.Results 2203 publications were initially identified. Of the 18 meeting the inclusion criteria, 5 were social science, five clinical and eight linguistics publications. Strong evidence (11/18) indicates hypothetical questions are effective in encouraging people to address feelings and plans for uncertain and difficult futures. Moderate evidence (5/18) indicates that another way to create such opportunities entails using cautious, euphemistic language; and that this provides distinctive opportunities for people to deflect or avoid the topic. Moderate evidence (3/21) indicates that people often steer such conversations towards more optimistic statements, which tends to stop further talk about difficult events.Conclusions Social-science, linguistic and clinical evidence is available to inform this skilled, often problematic element of care. There are different ways to provide opportunities to discuss feelings and plans in relation to end of life. Different ways have different results: better understandings of these will facilitate evidence-based communication. To fill gaps in knowledge, further research using recordings of authentic palliative care consultations is needed.
2013
Parry RH; Land V; Seymour J
Bmj Supportive & Palliative Care
2013
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Journal Article
<a href="http://doi.org/10.1136/bmjspcare-2013-000453b.17" target="_blank" rel="noreferrer">10.1136/bmjspcare-2013-000453b.17</a>
End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment
Humans; Intensive Care Units; Attitude of Health Personnel; Prospective Studies; Life Support Care; Job Satisfaction; Pediatric; infant; ICU Decision Making; Analgesics/administration & dosage; Hypnotics and Sedatives/administration & dosage; Terminal Care/methods; Ventilator Weaning
OBJECTIVE: To describe the attitudes and practice of clinicians in providing sedation and analgesia to dying patients as life-sustaining treatment is withdrawn. STUDY DESIGN: Prospective case series of 53 consecutive patients who died after the withdrawal of life-sustaining treatment in the pediatric intensive care unit at three teaching hospitals in Boston. Data on the reasons why medications were given were obtained from a self-administered anonymous questionnaire completed by the critical care physician and nurse for each case. Data on what medications were given were obtained from a review of the medical record. RESULTS: Sedatives and/or analgesics were administered to 47 (89%) patients who died after the withdrawal of life-sustaining treatment. Patients who were comatose were less likely to receive these medications. Physicians and nurses cited treatment of pain, anxiety, and air hunger as the most common reasons, and hastening death as the least common reason, for administration of these medications. Hastening death was viewed as an "acceptable, unintended side effect" of terminal care by 91% of physician-nurse matched pairs. The mean dose of sedatives and analgesics administered nearly doubled as life-support was withdrawn, and the degree of escalation in dose did not correlate with clinician's views on hastening death. CONCLUSION: Clinicians frequently escalate the dose of sedatives or analgesics to dying patients as life-sustaining treatment is withdrawn, citing patient-centered reasons as their principle justification. Hastening death is seen as an unintended consequence of appropriate care. A large majority of physicians and nurses agreed with patient management and were satisfied with the care provided. Care of the dying patient after the forgoing of life-sustaining treatment remains underanalyzed and needs more rigorous examination by the critical care community.
2000
Burns JP; Mitchell C; Outwater KM; Geller M; Griffith JL; Todres ID; Truog RD
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200008000-00064" target="_blank" rel="noreferrer">10.1097/00003246-200008000-00064</a>
End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses
Child; Cross-Sectional Studies; Humans; United States; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Questionnaires; Middle Aged; Attitude to Death; Multivariate Analysis; Hospitals; Analysis of Variance; Child Advocacy; Ethics; Medical; Nursing Staff; Practice; Pediatric; Empirical Approach; Death and Euthanasia; Attitudes; decision making; Health Knowledge; ICU Decision Making; Nursing; Pediatrics/methods; Critical Care/organization & administration/psychology; Hospital/education/psychology; Physician's Practice Patterns/organization & administration; Terminal Care/organization & administration/psychology
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric hospitals in the United States. MEASUREMENTS AND MAIN RESULTS: The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%; p < .003); that ethical issues are discussed well within the team (92% vs. 59%; p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%; p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. CONCLUSIONS: Nearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.
2001
Burns JP; Mitchell C; Griffith JL; Truog RD
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200103000-00036" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00036</a>
End-of-life care in the pediatric intensive care unit: research review and recommendations
Child; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Attitude to Death; Infant Mortality; Evidence-Based Medicine; Forecasting; Practice; bereavement; Attitudes; decision making; infant; Practice Guidelines; Health Knowledge; ICU Decision Making; Parents/psychology; United States/epidemiology; Quality Assurance; Analgesia/ethics/standards; Conscious Sedation/ethics/standards; Health Care/organization & administration; Intensive Care/ethics/organization & administration/psychology; Pediatric/ethics/organization & administration; Resuscitation/ethics/standards; Terminal Care/ethics/organization & administration/psychology; Withholding Treatment/ethics/standards
Improving the quality of end-of-life care has become a national health care priority. A necessary step in this process in the pediatric intensive care unit (ICU) is examining the knowledge, attitudes,and behaviors of pediatric critical care practitioners in this area. In addition, the perspectives of bereaved parents must be uncovered as well. In this article, the empirical data in the literature on end-of-life care in the pediatric ICU are reviewed, common ethical controversies in this environment are discussed, and promising interventions for the future are presented.
2004
Burns JP; Rushton CH
Critical Care Clinics
2004
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Journal Article
<a href="http://doi.org/10.1016/j.ccc.2004.03.004" target="_blank" rel="noreferrer">10.1016/j.ccc.2004.03.004</a>
End-of-life decision-making and satisfaction with care: parental perspectives.
Longitudinal Studies; ICU Decision Making
OBJECTIVES: To evaluate parents' perceptions of the process by which decisions are made to limit or withdraw life support from critically ill children, and to evaluate parents' perceptions of their child's death in the pediatric intensive care unit (ICU) and their satisfaction with the care provided. DESIGN: Survey. SETTING: University teaching hospital. PARTICIPANTS: Seventy-eight parents who experienced the death of a child in the ICU between January 1, 1995 and June 30, 1998. INTERVENTIONS: Structured telephone interviews. MEASUREMENTS AND MAIN RESULTS: Forty-one parents recalled discussing the limitation or withdrawal of life support from their child with a physician. Of these, 31 (76%) felt they had just the right amount of authority to make decisions for their child, 8 (20%) felt they had too little, and 1 (2%) felt they had too much. Those satisfied with their decision-making authority had more trust in their physician than those who were dissatisfied (5 vs. 1, p <.001 by Mann-Whitney U test, where 1 = no trust and 5 = complete trust). Factors identified by parents as being extremely important in the decision-making process included physician recommendations, diagnosis, expected neurologic recovery, and degree of pain and suffering. A total of 51 parents were with their child at the time of death. Although none regretted being present, 17 parents who were not present later wished they had been (p <.001, Fisher's exact test). The quality of care provided to parents by the ICU staff was graded (1 = poor; 5 = excellent). Eleven parents (14%) scored quality of care
2000
Meert KL; Thurston CS; Sarnaik AP
Pediatric Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00130478-200010000-00017" target="_blank" rel="noreferrer">10.1097/00130478-200010000-00017</a>
End-of-life in the pediatric intensive care unit: seeking the family's decision of when and how, not if
Child; Humans; Intensive Care Units; Terminal Care; Family; Pediatric; Death and Euthanasia; decision making; ICU Decision Making
2000
Goldstein B; Merkens M
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200008000-00095" target="_blank" rel="noreferrer">10.1097/00003246-200008000-00095</a>
Ensuring that difficult decisions are honored--even in school settings
Child; Humans; United States; Adult; Parents; Choice Behavior; Minors; adolescent; Death and Euthanasia; decision making; Chronic disease; ICU Decision Making; Students; Cardiopulmonary Resuscitation/contraindications; Disabled Children/legislation & jurisprudence; Emergency Medical Services/ethics/legislation & jurisprudence/standards; Resuscitation Orders/ethics/legislation & jurisprudence; School Health Services/ethics/legislation & jurisprudence/standards; Schools/ethics/legislation & jurisprudence/standards; State Government
2005
Levetown M
The American Journal Of Bioethics
2005
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Journal Article
<a href="http://doi.org/10.1080/152651690927926" target="_blank" rel="noreferrer">10.1080/152651690927926</a>
Ethical conflicts between residents and attending physicians
Humans; Medical Staff; Dissent and Disputes; Interprofessional Relations; Conflict (Psychology); Ethics; Medical; ICU Decision Making; Bioethics and Professional Ethics; Hospital/ethics; Internship and Residency/ethics
Conflicts between residents and attending physicians over ethical issues often occur and residents must attempt to navigate these perilous waters. A brief description of a conflict concerning informed consent and professional role expectations in a neonatal intensive care unit is presented. The discussion then explores contextual features that often shape such ethical conflicts and presents ways of understanding ethical conflicts that occur in the course of medical training. Constructive approaches for residents to engage in conflict resolution are offered.
2002
Levi BH
Clinical Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1177/000992280204100904" target="_blank" rel="noreferrer">10.1177/000992280204100904</a>
Ethical issues in pediatric critical care neurology
Child; Humans; Pediatrics; Medical Futility; Research; Informed Consent; Ethics; Medical; Professional Patient Relationship; Death and Euthanasia; ICU Decision Making; Biomedical and Behavioral Research; Critical Care/ethics; Health Care and Public Health; Intensive Care Units/ethics; Jurisprudence; Neurology/ethics
Ethical issues in the critical care unit frequently arise in children with neurological problems. These ethical issues frequently challenge our medical management of such cases and can be quite problematic. This article reviews key ethical issues that may arise including informed consent, futility, justice/rationing, clinical research conduct and the severely compromised patient who is in either a permanent vegetative or minimally conscious state.
2004
Shevell M
Seminars In Pediatric Neurology
2004
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Journal Article
<a href="http://doi.org/10.1016/j.spen.2004.03.012" target="_blank" rel="noreferrer">10.1016/j.spen.2004.03.012</a>
Ethical issues in the pediatric intensive care unit
Child; Humans; United States; Parental Consent; Pediatrics; Withholding Treatment; Social Values; Intensive Care; Minors; Tissue and Organ Procurement; Ethics; Uncertainty; Medical; adolescent; Preschool; Professional Patient Relationship; infant; ICU Decision Making; Critical Illness/psychology; Judicial Role; Value of Life
Advanced technology and better scientific understanding of mechanisms of disease now permit intensive care personnel to extend life beyond what some patients and families consider reasonable, leading, in part, to the "patients' rights" movement and the articulation of legal and moral guidelines for foregoing life support. In the case of pediatrics, commentaries on a few of the topics that have arisen most frequently or have provided the greatest challenge in the authors' experience are provided.
1994
Frader JE; Thompson A
Pediatric Clinics Of North America
1994
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)38879-4" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)38879-4</a>
Ethical problems in pediatric critical care: consent
Child; Humans; United States; Intensive Care Units; Parental Consent; Personal Autonomy; Physician's Role; Ethics; decision making; Clinical; ICU Decision Making; Informed Consent/ethics/legislation & jurisprudence; Minors/legislation & jurisprudence; Pediatric/ethics/legislation & jurisprudence
Informed consent constitutes one of the important considerations included in the myriad ethical dilemmas in the pediatric intensive care unit. Traditionally, the law has viewed children as incompetent to make medical decisions, and society has authorized parents or guardians to act on behalf of children. Empirical evidence has revealed that children may be more capable of participating in their medical decisions than previously thought. Some scholars now think that parents have the right to give informed permission and that professionals should seek the child's assent in many circumstances. Physicians in the intensive care unit should seriously consider consulting adolescent patients about the direction of their care and may wish to seek the input of younger patients in appropriate circumstances.
2003
Zawistowski CA; Frader JE
Critical Care Medicine
2003
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Journal Article
<a href="http://doi.org/10.1097/01.CCM.0000065274.46402.DB" target="_blank" rel="noreferrer">10.1097/01.CCM.0000065274.46402.DB</a>
Extreme prematurity and parental rights after Baby Doe
Humans; infant; Parents; Euthanasia; Newborn; Premature; Passive/legislation & jurisprudence; ICU Decision Making; Multiple; Abnormalities; Texas; Prejudice; Child Advocacy/legislation & jurisprudence; Civil Rights/legislation & jurisprudence; Disabled Persons/legislation & jurisprudence; Neonatology/legislation & jurisprudence
2004
Robertson JA
The Hastings Center Report
2004
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Journal Article
<a href="http://doi.org/10.2307/3528691" target="_blank" rel="noreferrer">10.2307/3528691</a>
Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit
Child; Cross-Sectional Studies; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Prognosis; Questionnaires; Euthanasia; Life Support Care; Activities of Daily Living; Linear Models; Nursing Staff; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Family/psychology; ICU Decision Making; Intervention; Interventions; Passive; Hospital/psychology
OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU. SUBJECTS: All physicians and nurses caring for oncology or cardiology ICU patients. INTERVENTIONS: Seven patient characteristics were systematically presented in 16 theoretical case scenarios. MEASUREMENTS AND MAIN RESULTS: Individual linear regression models were constructed for each participant by calculating the importance caregivers placed on seven patient characteristics when deciding about starting intravenous vasopressors, performing chest compressions, and withdrawing life support. We compared the numerical and descriptive (very low, low, moderate, high) probability of survival. We surveyed 86 caregivers and 56 (65%) responded. The most important factors influencing decisions were family preferences (76% of decisions), followed by probability of survival (50%), and functional status (47%). There was marked variability among respondents in 38 (79%)/48 of the questions; 20% to 50% of caregivers chose opposing directions of patient management when they were asked to indicate the likelihood that they would perform a specific life-support intervention. The same term was never used by all respondents to describe the probability of survival for a scenario. CONCLUSION: Critically ill children and their families could face markedly different attitudes about the restriction of life-support interventions, depending on which nurses and physicians are involved in their care.
1997
Randolph AG; Zollo MB; Wigton RS; Yeh TS
Critical Care Medicine
1997
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Journal Article
<a href="http://doi.org/10.1097/00003246-199703000-00011" target="_blank" rel="noreferrer">10.1097/00003246-199703000-00011</a>
Family-centered advance care planning for teens with cancer
ICU Decision Making
IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of family-centered ACP. DESIGN AND SETTING Two-group randomized controlled trial in a pediatric oncology program. PARTICIPANTS Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012. INTERVENTION Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information. MAIN OUTCOME MEASURES Statement of treatment preferences and Decisional Conflict Scale score. RESULTS The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 ("treatment would extend my life by not more than 2 to 3 months"), intervention dyads demonstrated higher congruence (kappa = 0.660; P < .001) vs control dyads (kappa = -0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation. CONCLUSIONS Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.
Lyon ME; Jacobs S; Briggs L; Cheng YI; Wang J
Jama Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2013.943" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2013.943</a>
Forgoing life support across borders: who decides and why?
Child; Humans; Intensive Care Units; decision making; Adult; Euthanasia; Pediatric; Empirical Approach; Death and Euthanasia; Family/psychology; ICU Decision Making; Organizational; Intensive Care/ethics/psychology; Passive/ethics/psychology; Patient Participation/psychology
2004
Frader JE
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000124017.90899.c5" target="_blank" rel="noreferrer">10.1097/01.pcc.0000124017.90899.c5</a>
Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units
Child; Female; Humans; infant; Male; Intensive Care Units; decision making; Adult; Hospital Mortality; Prospective Studies; Euthanasia; Patient Participation; Europe; Pediatric; adolescent; Preschool; Empirical Approach; Death and Euthanasia; infant; Newborn; ICU Decision Making; Parents/psychology; Organizational; Passive/psychology
OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine pediatric intensive care units: 12 from northern Europe and 27 from southern Europe. PATIENTS: All consecutive deaths were recorded over a 4-month period. Group 1 and group 2 included patients who died in northern and southern pediatric intensive care units, respectively. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three hundred fifty children were enrolled, 68 in group 1 and 282 in group 2. The decision to forgo life-sustaining treatment was made in 116 children (group 1, n = 32; group 2, n = 84). In both groups, the decision was discussed by caregivers during a formal meeting. The decision to forgo life-sustaining treatment was more often made in northern countries than in southern ones (47% vs. 30%, p =.02). Parents were informed of this decision in 95% of cases in group 1 vs. 68% in group 2 (p =.01). In both groups, the final decision was made by the medical staff. Parents' contributions to the decision-making process did not differ between the two groups according to the practitioners' opinion. The decision was documented in the medical charts in 100% of the cases in group 1 and in 51% of the cases in group 2 (p =.0001). CONCLUSIONS: The decision-making process appears to be similar between northern and southern European countries. The respective contributions of the parents and the medical staff in the final decision itself seem to be identical between northern and southern countries. However, in northern European countries, the level of parents' information about the decision-making process appears higher and the decision is more often documented in the medical chart.
2004
Devictor DJ; Nguyen DT
Pediatric Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.PCC.0000123553.22405.E3" target="_blank" rel="noreferrer">10.1097/01.PCC.0000123553.22405.E3</a>
Forgoing life-sustaining treatments: how the decision is made in French pediatric intensive care units
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Life Support Care; Pediatric; adolescent; Preschool; Empirical Approach; Professional Patient Relationship; patient care team; Death and Euthanasia; decision making; infant; Practice Guidelines; Newborn; ICU Decision Making; France
OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed a prospective study to help the experts. This study documents how children die in French PICUs and how the decision to limit life support is made. DESIGN: A multicenter, prospective, cross-sectional study. SETTING: Thirty-three multidisciplinary PICUs in university hospitals. PATIENTS: All consecutive deaths were recorded over a 4-month period. Children who died after a medical decision to forgo life-sustaining treatment were included in group 1 and children who died from other causes were included in group 1. MAIN RESULTS: A total of 264 consecutive children died, 40.1% from group 1 and 59.8% from group 2. Patients of both groups were primarily admitted for acute respiratory failure (group 1, 50.8%; group 2, 52.6%). Neurologic emergencies were more frequent in patients in group 1, whereas patients with cardiovascular failures were more frequent in group 2. When there was a question of whether to pursue life-sustaining treatment, the parents' opinions were recorded in 72.1% of cases. A specific meeting was called to make this decision in 80.1% of cases. This meeting involved the medical staff in all cases. Parents were aware of the meeting in 10.7% of cases. The conclusion of the meeting was reported to the parents in 18.7% of cases and documented in the patient's medical record in 16% of cases. Experts who were not members of the PICU staff were invited to give their opinion in 62.2% of cases. CONCLUSIONS: The decision to forgo life-sustaining treatment is frequently made for children dying in French PICUs. Guidelines must be available to help the medical staff reach this decision. Knowledge of the decision-making process in French PICUs provides the experts with information needed to elaborate such recommendations.
2001
Devictor DJ; Nguyen DT; Groupe Francophone de Reanimationet d'Urgences Pediatriques
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200107000-00010" target="_blank" rel="noreferrer">10.1097/00003246-200107000-00010</a>
Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units
Female; Humans; Male; Intensive Care Units; Adult; Attitude to Health; Attitude of Health Personnel; Logistic Models; Prospective Studies; Aged; Middle Aged; Multivariate Analysis; Consumer Satisfaction; Depression; Anxiety; decision making; Family/psychology; ICU Decision Making; France
OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been described as paternalistic. DESIGN: Prospective multiple-center survey of intensive care unit staff and family members. SETTING: Seventy-eight intensive care units in university-affiliated hospitals in France. PATIENTS: We studied 357 consecutive patients hospitalized in the 78 intensive care units and included in the study starting on May 1, 2001, with five patients included per intensive care unit. INTERVENTIONS: We recorded opinions and experience about family participation in medical decision making. Comprehension, satisfaction, and Hospital Anxiety and Depression Scale scores were determined in family members. MEASUREMENTS AND MAIN RESULTS: Poor comprehension was noted in 35% of family members. Satisfaction was good but anxiety was noted in 73% and depression in 35% of family members. Among intensive care unit staff members, 91% of physicians and 83% of nonphysicians believed that participation in decision making should be offered to families; however, only 39% had actually involved family members in decisions. A desire to share in decision making was expressed by only 47% of family members. Only 15% of family members actually shared in decision making. Effectiveness of information influenced this desire. CONCLUSION: Intensive care unit staff should seek to determine how much autonomy families want. Staff members must strive to identify practical and psychological obstacles that may limit their ability to promote autonomy. Finally, they must develop interventions and attitudes capable of empowering families.
2004
Azoulay E; Pochard F; Chevret S; Adrie C; Annane D; Bleichner G; Bornstain C; Bouffard Y; Cohen Y; Feissel M; Goldgran-Toledano D; Guitton C; Hayon J; Iglesias E; Joly LM; Jourdain M; Laplace C; Lebert C; Pingat J; Poisson C; Renault A; Sanchez O; Selcer D; Timsit JF; LeGall JR; Schlemmer B; FAMIREA Study Group
Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.ccm.0000139693.88931.59" target="_blank" rel="noreferrer">10.1097/01.ccm.0000139693.88931.59</a>
Has the increased survival of premature infants affected resource utilization in pediatric intensive care units?
Humans; infant; Survival Rate; Health Policy; Newborn; Premature; ICU Decision Making; Intensive Care Units/utilization; Diseases/mortality/therapy; Patient Readmission/statistics & numerical data
2000
Anand KJ; Tilford JM
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200003000-00058" target="_blank" rel="noreferrer">10.1097/00003246-200003000-00058</a>
Hospital care for children and young adults in the last year of life: a population-based study
Child; Female; Humans; infant; Male; Adult; Hospital Mortality; Age Factors; Length of Stay; adolescent; Preschool; P.H.S.; Research Support; U.S. Gov't; Palliative Care/organization & administration; infant; Newborn; ICU Decision Making; Hospitalization/statistics & numerical data; Terminally Ill/statistics & numerical data; Terminal Care/utilization; Chronic Disease/classification/mortality/therapy; Washington/epidemiology
BACKGROUND: To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. We also determined the proportion with complex chronic conditions (CCCs) and tested whether the use of hospital services increased as the date of death drew nearer. METHODS: For all deaths occurring under 25 years of age from 1990 to 1996 in Washington State, USA, we linked death certificate information to hospital utilization records and analyzed the timing and duration of hospitalizations and the nature of hospital procedures during the year prior to death. RESULTS: Of the 8 893 deaths, 25 % had CCCs. Among infants with CCCs, 84 % were hospitalized at the time of death and 50 % had been mechanically ventilated during their terminal admission. Among the 458 CCC neonates dying under a week of age, 92% of all days of life were spent in the hospital; among the 172 CCC neonates dying during the second to fourth weeks of life, 85 % of all days of life were spent hospitalized; among the 286 CCC infants dying during the second to twelfth month of life, 41 % of all days of life were spent hospitalized. Among children and young adults with CCCs, 55 % were hospitalized at the time of death, and 19 % had been mechanically ventilated during their terminal admission. For these older patients, the median number of days spent in the hospital during the year preceding death was 18, yet less than a third of this group was hospitalized at any point in time until the last week of their lives. The rate of hospital use increased as death drew near. For subjects who had received hospital care, 44 % had governmental insurance as the source of primary payment. CONCLUSIONS: Infants who died spent a substantial proportion of their lives in hospitals, whereas children and adolescents who died from CCCs predominantly lived outside of the hospital during the last year of life. To serve these patients, pediatric palliative and end-of-life care will have to be provided in an integrated, coordinated manner both in hospitals and home communities.
2003
Feudtner C; DiGiuseppe DL; Neff JM
Bmc Medicine
2003
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Journal Article
<a href="http://doi.org/10.1186/1741-7015-1-3" target="_blank" rel="noreferrer">10.1186/1741-7015-1-3</a>