When a Child Dies in the PICU Despite Ongoing Life Support
death; treatment withdrawal; child; Child; family; human; human relation; long term care; Only Child; palliative therapy; pediatric intensive care unit; psychology; resuscitation; terminal care; treatment outcome; uncertainty
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting. <br/>CONCLUSION(S): Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.
Lewis-Newby M; Clark JD; Butt WW; Dryden-Palmer K; Parshuram CS; Truog RD
Pediatric Critical Care Medicine
2018
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/10.1097/PCC.0000000000001611" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001611</a>
Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
decision making; ethics; child; child parent relation; critical illness/th [Therapy]; female; human; male; patient participation; pediatric intensive care unit; psychology; social media; terminal care; transcultural care; treatment withdrawal
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.
Kirsch RE; Balit CR; Carnevale FA; Latour JM; Larcher V
Pediatric Critical Care Medicine
2018
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/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001488</a>
Discussing Death as a Possible Outcome of PICU Care
attitude to death; death; child; critical illness; decision making; doctor patient relationship; family; female; human; interpersonal communication; male; pediatric intensive care unit; physician; psychology; risk assessment; terminal care; uncertainty
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative studies. DATA EXTRACTION: Not available. DATA SYNTHESIS: Narrative and experiential review were used to describe the following areas benefits and potential adverse consequences of conversations about risk of death and the timing of, preparation for, and conduct of conversations about risk of death. <br/>CONCLUSION(S): Timely conversations about death as a possible outcome of PICU care are an important part of high-quality ICU care. Not all patients "require" these conversations; however, identifying patients for whom conversations are indicated should be an active process. Informed conversations require preparation to provide the best available objective information. Information should include distillation of local experience, incorporate the patients' clinical trajectory, the potential impact(s) of alternate treatments, describe possible modes of death, and acknowledge the extent of uncertainty. We suggest the more factual understanding of risk of death should be initially separated from the more inherent value-laden treatment recommendations and decisions. Gathering and sharing of collective knowledge, conduct of additional investigations, and time can increase the factual content of risk of death discussions. Timely and sensitive delivery of this best available knowledge then provides foundation for high-quality treatment recommendations and decision-making.
Gilleland JC; Parshuram CS
Pediatric Critical Care Medicine
2018
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/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001557</a>
Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
child; terminal care; article; human; palliative therapy; medical decision making; pediatrics; clinical article; school child; physician; pediatric intensive care unit; intensive care; medical ethics; adolescent; drug therapy; ethical dilemma; clinician; special situation for pharmacovigilance
Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.
Kingsley J; Clark J; Lewis-Newby M; Dudzinski DM; Diekema D
Journal of Medical Ethics
2023
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/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener">10.1136/jme-2023-108912</a>
Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study
child; article; controlled study; female; human; major clinical study; male; chronic disease; palliative therapy; comorbidity; pilot study; pediatric intensive care unit; congenital malformation; intensive care; prospective study; tertiary health care
Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.
Hodge CH; Kerris EW; Freeman MC; Eckman ST; Deeter DM; Even KM
Journal of Palliative Medicine
2023
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/10.1089/jpm.2023.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0292</a>
Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury
The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort).
Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB
Trauma Surgery and Acute Care Open
2023
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/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
2023
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.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a>
The Impact of End-of-Life Care Among Nurses Working in the Pediatric Intensive Care Unit
Terminal Care; child; terminal care; human; psychology; pediatric intensive care unit; health care personnel; nurse; questionnaire; professional burnout
Health care providers caring for patients at the end of life (EOL) are faced with a multitude of emotions such as guilt, anger, sadness, and helplessness. Because of the negative impact of initiating EOL care (EOLC) to the pediatric population, organizations must be proactive in instituting education and resources on EOLC. They must also provide advanced skills to nurses who take care of patients at their EOL. Understanding the consequences of providing EOL care to patients in the pediatric intensive care unit allows for better allocation of resources and support services for nurses. This improves patient outcomes and nurse retention.Copyright © 2023 Elsevier Inc. All rights reserved.
Chatmon BN; Richoux D; Sweeney B
Critical care nursing clinics of North America
2023
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.cnc.2023.04.002" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2023.04.002</a>
Palliative Communication in the Pediatric Intensive Care Unit
child; terminal care; human; Intensive Care Units; palliative therapy; pediatric intensive care unit; procedures; interpersonal communication; nurse attitude; palliative nursing
Communication is a central aspect of nursing care and is especially important when pertaining to progressive illnesses and end of life. This article reviews basic palliative care terminology and outlines a variety of communication frameworks from the "dos" to the "don'ts." These communication strategies are meant to be added to the nurse's "toolbox" so that nurses may use them in various scenarios. These communication tools are meant to help mitigate the stress and discomfort nurses often feel when using palliative communication or delivering bad news.Copyright © 2023 Elsevier Inc. All rights reserved.
Davis S; Nunn M
Critical care nursing clinics of North America
2023
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.cnc.2023.04.003" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2023.04.003</a>
Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
child; female; human; male; Intensive Care Units; patient care; palliative therapy; intensive care; pediatric intensive care unit; nursing; terminal care; Medline; systematic review; Cinahl; satisfaction; rare disease; conference abstract; decision making; memory; holistic care; heart
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required intensive care stay that may follow after birth presents a challenge for parents. To care for the family, the concept of family-centered care is presented and the involvement of the pediatric palliative care team is considered. The aim was to identify nursing measures which support families of a child in a palliative situation in the cardiac pediatric intensive care unit. Method(s): This literature search was conducted between January 1, 2022 and May 31, 2022 in Medline via PubMed, CINAHL and Cochrane research databases and was based on defined inclusion and exclusion criteria. Studies from the PICU and NICU as well as studies focusing on end-of-life care were considered, as it can be assumed that the results may be transferable. Studies with an exclusive oncological focus or specific rare diseases were excluded. Result(s): Seven main categories could be identified to support the parents. The communication, the parental participation in the decision-making process, continuity of care and relationship building. Also the griefing process and memory making takes place. At least challenges in the intensive care unit and satisfaction with care and unmet needs are highlighted. Conclusion(s): The included studies suggest important features of communication and can be partially transferred to the implementation of nursing measures with the help of family-centered care. The necessity of the need to involve parents in the care of the child can be demonstrated in the majority of the studies. Therefore, appropriate communication and parental participation in the whole process should be considered as the focus of care. For holistic care, the involvement of the palliative pediatric care team should be evaluated early. Due to the limitations of the studies and the low level of evidence, the results must be viewed with caution. Further research is needed to comprehensively map the specific area of the cardiac pediatric intensive care.
Wieden N; Eissler AB; Kroger Y
Cardiology in the Young
2023
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/10.1017/S1047951123001099" target="_blank" rel="noreferrer noopener">10.1017/S1047951123001099</a>
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Palliative Care; child; controlled study; female; human; male; retrospective study; quality of life; palliative therapy; hospice; practice guideline; follow up; outcome assessment; artificial ventilation; clinical article; patient referral; education; consultation; pediatric intensive care unit; awareness; diagnosis; life sustaining treatment; hospital discharge; adolescent; surgery; infant; demographics; conference abstract; e-mail; decision making; trust; length of stay; nurse; writing; community care; heart graft; nursing staff; clinical nurse specialist; apparent life threatening event; organizational restructuring; oxygenation
Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus wishes of the child and family on preferred place of care.2 3 We evaluated the temporal effect on PC referrals at a quarternary cardiorespiratory paediatric intensive care unit (PICU) following organisational restructuring to integrate people-centred changes amidst complex diagnoses and advanced life-sustaining treatments. Methods Retrospective review of PC referral database between January and December 2022 was conducted, analysed on referral pathway, reviewed with decision-making process, patient demographics and outcome. Results The nurse-led service with ad hoc informal visits to offer PC support following requests from medical team was reorganised since service-level agreement for paediatric PC consultant attendance at our weekly complex care multidisciplinary meetings. Departmental education sessions and trust governance events were platforms to promote staff awareness on service and enhance referral pathway. PC referrals were made for 23 children(M:F 1.3:1), median age 13.8 months (range 10days -16.8years), under categories of life-limiting diagnoses (n=12, 52%) or acute life-threatening events (n=11, 48%), including resuscitative extracorporealmembrane-oxygenation.(Graph 1) Median time from admission to PC referral was 59 days (range 6-162) prior to standardised referral proforma in May2022, this reduced to 36 days (range -35 to 68) and 6 days (range 3-30) per 4-month period. One referral was made 5 weeks prior to an international repatriation for child with life-limiting diagnosis on long-term ventilation. Completed referral forms sent to a designated email address were passed onto PC consultants and clinical nurse specialist. Dedicated weekly PC days provided introductory 'meet-andgreet', follow-up 'check-in' or semi-structured meeting with PC team members for patients, families and staff. PC-led multidisciplinary meetings (including 2 online) were followed by real-time correspondence to medical and nursing staff with feedback, recommendations and action plan. 4 advanced care plans and 3 symptom management plans were completed; 9 hospice and 5 community care nursing team referrals were made whilst 2 families declined hospice. Median hospital length of stay was 69 days (range 6-390). 5 children survived to hospital discharge (3 died at home), and 8 are still in hospital (1 as heart transplant recipient). Conclusion Integrative culture during reorganisation can positively influence paediatric PC referrals. Event-triggered and diagnosis-based cues may help foster PC participation as continuing strategy to respond with support during disease, treatment and psychosocial burden for children and families.
Subhash S; Freitas D; Aidoo E; Nkulu G; Chan-Dominy A
Archives of Disease in Childhood
2023
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/10.1136/archdischild-2023-rcpch.50" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.50</a>
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
Children
2021
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/10.3390/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</a>
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
child; article; female; human; male; retrospective study; Intensive Care Units; palliative therapy; pediatric intensive care unit; follow up; consultation; hospitalization; adolescent; infant; social problem; social worker; counseling; physician; Social Work; child psychiatry; abuse; Turkey (republic); child custody; child neglect; community mental health center; hospital information system
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in harmony with the physicians, and their importance for the intensive care team. Material(s) and Method(s): Sixtysix children aged between 1 month and 18 years old who were asked for social service consultation between January 2019 and December 2020 at our hospital's PICU were included in the study. The age, diagnosis, sex, marital status (married-divorced), number of days of hospitalization, number of recurrent hospitalization, reason and result of consultation, necessity of psychiatric consultation and frequency of follow-up were retrospectively examined and recorded through the hospital information system. The collected data were analyzed by means of SPSS (version 22.0, SPSS Inc. Chicago, IL, USA). Result(s): The median age (months) (min-max) was found to be 172, 50 (6-209), and the median (min-max) duration of hospitalization (days) was found to be 2 (1-76). Family neglect was found to be the most common cause of social work indications (77.3%; n: 51). The number of patients who were given social counseling and referred to a psychiatrist was 25 (37.9%). Family neglect and abuse were detected in 5 (7.6%) patients. Apart from these, it was observed that problems such as drug supply, financial support, ID application, home device supply assistance, care center approvals and child custody were solved in each 1 (1.5%) patient. Conclusion(s): The inclusion of social workers in the children's intensive care unit teams can also prevent many social problems that can be neglected otherwise. Physicians are more focused on patient treatment, so we believe that it will be beneficial to question the family and social status of patients together with a social service unit and specialists integrated into children's intensive care units.Copyright © 2022 Ankara Pediatric Hematology Oncology Training and Research Hospital. All rights reserved.
Atakul G; Aslan K; Demircan TO; Ozhan P; Caglar A
Turkish Journal of Pediatric Disease
2022
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/10.12956/tchd.933708" target="_blank" rel="noreferrer noopener">10.12956/tchd.933708</a>
Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer
BACKGROUND: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. METHODS: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. RESULTS: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. CONCLUSIONS: Future work is needed to determine SWs'/chaplains' contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains.
Michelson KN; Arenson M; Charleston E; Clayman ML; Brazg T; Rychlik K; Rosenberg AR; Frader J
Children (Basel)
2022
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/10.3390/children9091287" target="_blank" rel="noreferrer noopener">10.3390/children9091287</a>
Palliative and Critical Care: Their Convergence in the Pediatric Intensive Care Unit
Palliative care; Pediatric intensive care unit; Critical care framework
Palliative care (PC) is an integral component of optimal critical care (CC) practice for pediatric patients facing life-threatening illness. PC acts as an additional resource for patients and families as they navigate through critical illness. Although PC encompasses end of life care, it is most effective when integrated early alongside disease-directed and curative therapies. PC primarily focuses on improving quality of life for patients and families by anticipating, preventing and treating suffering throughout the continuum of illness. This includes addressing symptom distress and facilitating communication. Effective communication is vital to elicit value-based goals of care, and to guide parents through patient-focused and potentially difficult decision-making process which includes advanced care planning. A multidisciplinary approach is most favorable when providing support to both patient and family, whether it is from the psychosocial, practical, emotional, spiritual or cultural aspects. PC also ensures coordination and continuity of care across different care settings. Support for family carries on after death with grief and bereavement support. This narrative review aims to appraise the current evidence of integration of PC into pediatric CC and its impact on patient- and family-centered outcomes. We will also summarize the impact of integration of good PC into pediatric CC, including effective communication with families, advanced care planning, withholding or withdrawal of life sustaining measures and bereavement support. Finally, we will provide a framework on how best to integrate PC in PICU. These findings will provide insights on how PC can improve the quality of care of a critically ill child.
Buang SNH; Loh SW; Mok Y H; Lee J H; Chan YH
Frontiers in Pediatrics
2022
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/10.3389/fped.2022.907268" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.907268</a>
"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Journal of hospice and palliative nursing
2022
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/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</a>
Acute and Posttraumatic Stress in Family Members of Children With a Prolonged Stay in a PICU: Secondary Analysis of a Randomized Trial
Acute stress; Children; Family; Pediatric intensive care unit; Posttraumatic stress; Randomized trial; Secondary analysis; Stress
OBJECTIVES: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms. DESIGN: Secondary analysis of data from a randomized trial of a palliative care intervention conducted between 2010 and 2014. SETTING: An urban pediatric hospital in Seattle, WA. SUBJECTS: The sample included 377 family members of 220 children. INTERVENTIONS: Family Communication Study. MEASUREMENTS AND MAIN RESULTS: Outcomes were symptom scores and diagnostic screening criteria for acute stress disorder (ASD) and PTSD. Predictors included demographic- and admission-related characteristics and hypothesized risk factors for developing stress-related mental health disorders. The mean score for acute stress symptoms during the ICU stay was 40.3 (SD = 13.8) and 59 family members in total met diagnostic screening criteria for ASD during hospitalization (15.6%). At 3-month follow-up, the mean score for posttraumatic stress symptoms was 30.8 (SD = 12.9) and 52 family members met diagnostic criteria for PTSD (13.8%). Factors associated with meeting ASD screening criteria were unplanned admission and poorer family relationships. Factors associated with PTSD symptoms and diagnosis were longer length of stay, meeting ASD criteria during admission, child's death, and less perceived social support. CONCLUSION(S): Meeting screening criteria for PTSD was associated with demographic, length of stay, and family relationships among family members of seriously ill children. PTSD outcomes were higher among family members whose child died. This study helps identify risk factors that can be used to target needed psychosocial screening, monitoring and support during and following a prolonged PICU admission, as well as family-centered interventions and supportive bereavement intervention for the family members of a deceased child. Copyright ©2022The Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
Ercin-Swearinger H; Lindhorst T; Curtis JR; Starks H; Doorenbos AZ
Pediatric Critical Care Medicine
2022
<a href="http://doi.org/10.1097/PCC.0000000000002913" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002913</a>
Palliative Care Utilization Following Out-of-Hospital Cardiac Arrest in Pediatrics
cardiac arrest; critical care outcomes; do-not-resuscitate; goals-of-care; palliative care; pediatric intensive care unit
OBJECTIVES: Pediatric out-of-hospital cardiac arrest (OHCA) is associated with significant morbidity and mortality. Pediatric palliative care (PPC) services could provide an integral component of the comprehensive care necessary for these patients and their families. The main objectives of this study are to examine the utilization of PPC following OHCA and compare the differences in characteristics between children who received PPC with those who did not. DESIGN: Retrospective cohort study. SETTING: An urban, tertiary PICU. PATIENTS: Children less than 21 years old admitted from October 2009 to October 2019 with an admitting diagnosis of OHCA and minimum PICU length of stay (LOS) of 48 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 283 patient charts reviewed, 118 patient encounters met inclusion criteria. Of those, 34 patients (28.8%) received a PPC consultation during hospitalization. Patients who received PPC had a longer PICU LOS (14.5 vs 4.0 d), a greater number of ventilator days (12.5 vs 4.0 d), and a larger proportion of do-not-resuscitate (DNR) statuses (41% vs 19%). When comparing the disposition of survivors, a greater proportion was discharged to rehab or nursing facilities (47% vs 28%), with no difference in mortality rates (53% vs 50%). In the multivariate logistic regression model, older age, longer LOS, and code status (DNR) were all associated with higher likelihood of PPC utilization. Data were analyzed using descriptive, Mann-Whitney U, and Fisher exact statistics. CONCLUSIONS: Our study demonstrates PPC services following OHCA are underutilized given the high degree of morbidity and mortality. The impact of automatic PPC consultation in all OHCA patients who survive beyond 48 hours should be explored further. Future studies are warranted to understand the benefits and barriers of PPC integration into standard postarrest care for patients and families.
Gouda SR; Bohr NL; Hoehn KS
Critical Care Explorations
2022
<a href="http://doi.org/10.1097/cce.0000000000000639" target="_blank" rel="noreferrer noopener">10.1097/cce.0000000000000639</a>
End-of-Life Decision-Making in Pediatric and Neonatal Intensive Care Units in Croatia-A Focus Group Study among Nurses and Physicians
Infant Newborn; Intensive Care Units Neonatal; Physicians; Terminal Care; Adult; Child; critical care; Croatia; Death; Decision Making; end-of-life; focus groups; Focus Groups; Humans; Intensive Care Units; neonatal intensive care unit; nurses; pediatric intensive care unit; physicians
Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare professionals face when dealing with end-of-life decisions in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs) in Croatia. Materials and Methods: This qualitative study with focus groups was conducted among physicians and nurses working in NICUs and PICUs in five healthcare institutions (three pediatric intensive care units (PICUs) and five neonatal intensive care units (NICUs)) at the tertiary level of healthcare in the Republic of Croatia, in Zagreb, Rijeka and Split. A total of 20 physicians and 21 nurses participated in eight focus groups. The questions concerned everyday practices in end-of-life decision-making and their connection with interpersonal relationships between physicians, nurses, patients and their families. The constant comparative analysis method was used in the analysis of the data. Results: The analysis revealed two main themes that were the same among the professional groups as well as in both NICU and PICU units. The theme "critical illness" consisted of the following subthemes: the child, the family, myself and other professionals. The theme "end-of-life procedures" consisted of the following subthemes: breaking point, decision-making, end-of-life procedures, "spill-over" and the four walls of the ICU. The perceptions and experiences of end-of-life issues among nurses and physicians working in NICUs and PICUs share multiple common characteristics. The high variability in end-of-life procedures applied and various difficulties experienced during shared decision-making processes were observed. Conclusions: There is a need for further research in order to develop clinical and professional guidelines that will inform end-of-life decision-making, including the specific perspectives of everyone involved, and the need to influence policymakers.
Rubic F; Curkovic M; Brajkovic L; Nevajdic B; Novak M; Filipovic-Grcic B; Mestrovic J; Lah Tomulic K; Peter B; Borovecki A
Medicina (Kaunas)
2022
<a href="http://doi.org/10.3390/medicina58020250" target="_blank" rel="noreferrer noopener">10.3390/medicina58020250</a>
Admission factors associated with nutritional status deterioration and prolonged pediatric intensive care unit stay in critically ill children: PICU-ScREEN multicenter study
Child; Child Preschool; chronic disease; Critical Illness; Humans; Infant; Intensive Care Units Pediatric; length of stay; Length of Stay; malnutrition; Malnutrition; nutritional status; Nutritional Status; outcomes; pediatric intensive care unit; Prospective Studies; Retrospective Studies
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU stay. METHODS: Prospective cohort study in eight Brazilian PICUs with children <18 years with a PICU stay >72h. We used multivariable logistic regression to identify the clinical, laboratory, and nutrition variables at admission that were associated with outcomes. NS deterioration was defined as the reduction in weight-for-age, body mass index-for-age or mid-upper arm circumference-for-age z-score ≥1 during PICU stay. Prolonged PICU stay was defined as ≥13 days. RESULTS: We enrolled 363 eligible patients, median age 11.3 months (interquartile range:3.1-45.6) and 46% had at least one complex chronic condition (CCC). NS deterioration was observed in 23% of participants and was associated with CCC (odds ratio [OR]:2.71; 95% confidence interval [CI]:1.44-5.09), after adjusting for severity risk score, leukocyte count, obesity, and PICU site. Prolonged PICU stay was associated with age <2 years (OR:1.95; 95%CI:1.03-3.66), fluid overload (>10%) over the first 72h (OR:2.66; 95%CI:1.50-4.73), and hypoalbuminemia (<3.0 g/dL) (OR:2.05; 95%CI:1.12-3.76), after adjusting for CCC, severity risk score, undernutrition, early nutrition therapy, and PICU site. CONCLUSIONS: CCC at admission was associated with NS deterioration. Age <2 years, fluid overload, and hypoalbuminemia at PICU admission were associated with prolonged PICU stay. These factors must be further evaluated as part of an admission nutrition screening tool for critically ill children.
Ventura JC; Oliveira LDA; Silveira TT; Hauschild DB; Mehta NM; Moreno YMF; PICU-ScREEN Study Group
Journal of Parenteral and Enteral Nutrition
2022
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/jpen.2116" target="_blank" rel="noreferrer noopener">10.1002/jpen.2116</a>
Parental experience of child death in the paediatric intensive care unit: A scoping review
bereavement; parent perspectives; pediatric intensive care unit; scoping review; support
Objective The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. Design Scoping review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance. Data sources Four databases, PubMed, Embase, CINAHL and PsycINFO, were searched for studies published until 24 August 2021, with no limitation on the year of publication. Eligibility criteria We identified qualitative studies published in English that focused on parents' experiences during the death of their child in the PICU and excluded studies conducted in non-PICU settings, such as neonatal intensive care units and emergency departments. Data extraction and synthesis A five-step methodological approach ( identifying the research question', searching for relevant studies', selecting studies', charting the data' and collating, summarising and reporting the results') developed by Arksey and O'Malley was used to chart the purpose and methods of the study and the characteristics of the study participants. The extracted parental experiences were inductively summarised. Results Of 435 articles, 14 studies conducted in seven countries were included in the final review. The background regarding the child's condition varied, including whether it was acute or chronic, and the length of stay in the PICU. Parents needed effective interaction with healthcare providers to fulfil their parental role and be involved in critical decision-making regarding their child's treatment in a rapidly evolving situation. The themes inductively extracted were parental suffering', roles and responsibilities of parents', information sharing', and support of parents by healthcare providers'. Conclusions Although parent-healthcare provider interactions influence parents' experiences with their dying children in the PICU, by affecting parental roles and level of involvement, there is a lack of research focusing on improving these interactions. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Tezuka S; Kobayashi K
BMJ Open
2021
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/10.1136/bmjopen-2021-057489" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-057489</a>
Assessment of Long-term Psychological Outcomes after Pediatric Intensive Care Unit Admission: A Systematic Review and Meta-analysis
admission; Pediatric intensive care unit; PICU; psychological outcomes; Systematic Review
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To systematically review and evaluate reported long-term psychological outcomes among children previously admitted to the PICU. Data Sources: A systematic search of the Cumulative Index to Nursing and Allied Health Literature, Embase, MEDLINE (PubMed), and PsycINFO was conducted from database inception to June 2021. Search terms included phrases related to intensive care (eg, intensive care units and critical care) and terms for psychological disorders (eg, posttraumatic stress disorder, depressive disorder, conduct disorder, and neurodevelopmental disorder) limited to the pediatric population. Study Selection: This systematic review and meta-analysis included randomized clinical trials and observational studies reporting psychological disorders among children younger than 18 years who were admitted to the PICU with follow-up for at least 3 months. Psychological disorders were defined using the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition). Children were excluded if they were admitted to the PICU for primary brain conditions (eg, traumatic brain injury, meningoencephalitis, and brain tumors) or discharged to the home for palliative care. Data Extraction and Synthesis: Titles and abstracts were independently screened by 2 reviewers, with data extraction conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guideline. Data were pooled using a random-effects model during meta-analysis. Main Outcomes and Measures: Age-corrected IQ scores and long-term psychological outcomes measured by scales such as the Child Behavior Checklist (higher scores indicate more behavioral problems) among children admitted to the PICU. Result(s): Of 9193 records identified, 31 independent studies (5 randomized clinical trials and 26 observational studies) involving 7786 children (mean age, 7.3 years [95% CI, 6.2-8.4 years]; 4267 boys [54.8%]; race and ethnicity were not reported by all studies) admitted to the PICU were included. Overall, 1 of 19 children (5.3%) to 14 of 16 children (88.0%) previously admitted to the PICU were reported to have at least 1 psychological disorder. Studies that examined posttraumatic stress disorder reported that 6 of 60 children (10.0%) to 31 of 102 children (30.4%) met the diagnostic criteria for the disorder at 3 to 6 months of follow-up. Compared with healthy children, those admitted to the PICU had lower IQ scores at 1 to 2 years of follow-up (mean, 89.40 points [95% CI, 88.33-90.47 points] vs 100.70 points [95% CI, 99.43-101.97 points]; P <.001) and 3 to 5 years of follow-up (mean, 88.54 points [95% CI, 83.92-93.16 points] vs 103.18 [95% CI, 100.36-105.99 points]; P <.001) and greater total emotional and behavioral problems at 4 years of follow-up (mean, 51.69 points [95% CI, 50.37-53.01 points] vs 46.66 points [95% CI, 45.20-48.13 points]; P <.001). Conclusions and Relevance: This systematic review and meta-analysis found a high burden of psychological sequelae among children previously admitted to the PICU, suggesting that risk stratification and early interventions are needed for high-risk groups.. Copyright © 2022 American Medical Association. All rights reserved.
Ko MSM; Poh PF; Heng KYC; Sultana R; Murphy B; Ng RWL; Lee JH
JAMA Pediatrics
2022
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/10.1001/jamapediatrics.2021.5767" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2021.5767</a>
Venous Thromboembolism among Critically Ill Children: A Narrative Review
critical care medicine; Hospital acquired VTE; narrative review; Pediatric intensive care unit; pediatrics; thromboprophylaxis
Venous thromboembolism (VTE) is a leading cause of morbidity and mortality among hospitalized patients, including children. In recent years, it has become clear that hospitalization and critical illness bestow an increased VTE risk in pediatrics and relate to mortality and life-limiting comorbidities. For critically ill children, reported rates of VTE vary by study sampling techniques, presence of inherited or acquired thrombophilia, acute and chronic immobility, underlying illness prompting hospitalization, and clinical factors related to illness severity such as central venous catheterization, length of stay, mechanical ventilation, and patient age. Accordingly, critically ill children with new signs of venous congestion, acute inflammation, or unexplained acute organ dysfunction should be routinely evaluated for VTE. This narrative review summarizes recent and historical literature regarding risk factors, prevention, presentation, treatment, and outcomes of VTE in critically ill children. In addition, we identify knowledge gaps and priorities for future collaborative research on this vital condition. Special attention is given to the clinical trial opportunities, challenges, and ongoing efforts in thromboprophylaxis in critically ill children, including those hospitalized for disease related to novel coronavirus (COVID-19) and multisystem inflammatory disease in children.
Sochet AA; Kiskaddon A; Betensky M; Goldenberg N
Seminars in Thrombosis and Hemostasis
2021
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/10.1055/s-0041-1722847" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1722847</a>
A Cross-Sectional Study of the Clinical Metrics of Functional Status Tools in Pediatric Critical Illness
Pediatric intensive care unit; quality of life; outcome; skeletal muscle
OBJECTIVES: To determine the clinical metrics of functional assessments in pediatric critical illness survivors. DESIGN: Cross-sectional observational study. SETTING: PICU follow-up clinic. PATIENTS: Forty-four PICU survivors 6-12 months post PICU stay, and 52 healthy controls 0-18 years old. INTERVENTIONS: Nil. MEASUREMENTS AND MAIN RESULTS: Function was assessed using the Pediatric Quality of Life Inventory 4.0 generic scales and infant scales, the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test, and the Functional Status Scale. Muscle strength was assessed by hand grip strength in children greater than or equal to 6 years. Clinical metrics assessed included floor and ceiling effects, known-group, and convergent validity. Floor and ceiling effects were present if the participants achieving the worst or best scores exceeded 15%, respectively. Known-group validity was assessed by comparing scores between those with and without complex chronic conditions and abnormal versus good baseline function. Convergent validity was assessed using partial correlation between two tools. Functional Status Scale and Pediatric Quality of Life Inventory physical domain scores showed significant ceiling effects in PICU survivors (69.2% and 15.4%, respectively, achieved the highest possible score). Functional scores were not significantly different between children with or without complex chronic conditions or children with good versus abnormal baseline function. In healthy children, Pediatric Quality of Life Inventory physical correlated moderately with hand grip strength (partial r = 0.66; p < 0.001), whereas Pediatric Quality of Life Inventory psychosocial correlated moderately with Pediatric Evaluation of Disability Inventory-Computer Adaptive Test social/cognitive score (partial r = 0.53; p < 0.001). In PICU survivors, only Pediatric Quality of Life Inventory physical and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test mobility scores were correlated (partial r = 0.55; p < 0.001). CONCLUSIONS: PICU functional assessment tools have varying clinical metrics. Considering ceiling effects, Pediatric Evaluation of Disability Inventory-Computer Adaptive Test may be more suitable in survivors than Functional Status Scale. Differences in scores between children with or without complex chronic conditions, and with or without baseline functional impairment, were not observed. Functional assessments likely require a combination of tools to measure the spectrum of pediatric critical illness and recovery.
Ong C; Lee JH; Yang L; Wong JJM; Leow MKS; Puthucheary ZA
Pediatric Critical Care Medicine
2021
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/10.1097/pcc.0000000000002722" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002722</a>
Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress
Chronic critical illness; communication; health teams; interdisciplinary; palliative care; pediatric intensive care unit
To gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We used purposive sampling to identify five PICU patients who died following long admissions, whose care generated substantial staff distress. We recruited four to six interdisciplinary clinicians per patient who had frequent clinical interactions with the patient/family for interviews. Conventional content analysis was applied to the transcripts resulting in the emergence of five themes: nonbeneficial treatment; who is driving care? Elusive goals of care, compromised personhood, and suffering. Interventions directed at increasing consensus, clarifying goals of care, developing systems allowing children with CCI to be cared for outside of the ICU, and improving communication may help to ameliorate this distress. Copyright © 2021 Thieme India. All rights reserved.
Miles AH; Rushton CH; Wise BM; Moore A; Boss RD
Journal of Pediatric Intensive Care.
2021
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/10.1055/s-0041-1724098" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1724098</a>
Use of a Mortality Prediction Model in Children on Mechanical Ventilation: A 5-Year Experience in a Tertiary University Hospital
pediatric intensive care unit; mortality; pediatric risk of mortality score; ventilation
PURPOSE: Currently, several scoring systems for predicting mortality in severely ill children who require treatment in a pediatric intensive care unit (PICU) have been established. However, despite providing high-quality care, children might develop complications that can cause rapid deterioration in health status and can lead to death. Hence, this study aimed to establish a simple early predictive mortality (SEPM) model with high specificity in identifying severely ill children who would possibly benefit from extensive mechanical ventilation during PICU admission. PATIENTS AND METHODS: This is a retrospective longitudinal study that included pediatric patients aged older than two weeks who were on mechanical ventilation and were admitted to the PICU of King Fahd Hospital of the University from January 2015 to December 2019. RESULTS: In total, 400 pediatric patients were included in this study. The mortality rate of children on mechanical ventilation was 28.90%, and most deaths were associated with respiratory (n = 124 [31%]), cardiovascular (n = 76 [19%]), and neurological (n = 68 [17%]) causes. The SEPM model was reported to be effective in predicting mortality, with an accuracy, specificity, and sensitivity of 92.5%, 97.31%, and 66.15%, respectively. Moreover, the accuracy, specificity, and sensitivity of the Pediatric Risk of Mortality (PRISM) III score in predicting mortality was 95.25%, 98.51%, and 78.46%, respectively. CONCLUSION: The SEPM model had a high specificity for mortality prediction. In this model, only six clinical predictors were used, which might be easily obtained in the early period of PICU admission. The ability of the SEPM model and the PRISM III score in predicting mortality in severely ill children was comparable. However, the accuracy of the newly established model in other settings should be validated, and a prospective longitudinal study that considers the effect of the treatment on the model's predictive ability must be conducted.
Albuali WH; Algamdi AA; Hasan EA; Al-Qahtani MH; Yousef AA; Al Ghamdi MA; Bubshait DK; Alshahrani MS; AlQurashi FO; Bou Shahmah TA; Awary BH
Journal of Multidisciplinary Healthcare
2020
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/10.2147/jmdh.s282108" target="_blank" rel="noreferrer noopener">10.2147/jmdh.s282108</a>
Therapeutic Alliance Between Bereaved Parents and Physicians in the PICU
bereavement; child; parent; Pediatric intensive care unit; physician; race; therapeutic alliance
OBJECTIVES: Therapeutic alliance is the collaborative bond that develops between patients/families and healthcare providers. Our objective is to determine the extent of therapeutic alliance bereaved parents perceive to have occurred with their child's physicians during their child's PICU stay, and associated factors. DESIGN: Multicenter observational study. SETTING: Eight children's hospitals affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Parents greater than or equal to 18 years old whose child died in a PICU (including cardiac ICU). INTERVENTIONS: Bereaved parents completed the Human Connection Scale, a 16-item measure of therapeutic alliance, 6 months after their child's death. Human Connection Scale scores range from 16 to 64 with higher scores indicating greater alliance. Parents provided sociodemographic data, and medical records were reviewed for the child's clinical characteristics. MEASUREMENTS AND MAIN RESULTS: Two-hundred and thirty-three parents of 157 deceased children responded to the Human Connection Scale with greater than or equal to 80% item completion. Among parents, 146 (62.7%) were female, 155 (66.5%) were White and 46 (19.7%) were Black, 175 (75.1%) were married, and 209 (89.7%) had at least a high-school education. Among children, median age at the time of death was 5.9 years (interquartile range, 0.64-13.9 yr) and 114 (72.6%) died after limitation or withdrawal of life support. Mean Human Connection Scale score was 51.4 ± 11.1 for all parents, 52.6 ± 9.0 for White parents, and 47.0 ± 13.7 for Black parents. In multivariable modeling predicting Human Connection Scale scores, race was the only parent or child characteristic in the final model. Human Connection Scale scores were significantly different (-4.56; 95% CI, -8.53 to -0.6; p = 0.025) between the Black and White parents with items about trust, care, and honest communication showing the greatest mean difference. CONCLUSIONS: Among parents bereaved in the PICU, therapeutic alliance with physicians is moderately high. Future research should identify strategies to strengthen therapeutic alliance with Black parents and examine the role of alliance on bereaved parents' health outcomes.
Suttle M; Hall MW; Pollack MM; Berg RA; McQuillen PS; Mourani PM; Sapru A; Carcillo JA; Startup E; Holubkov R; Dean JM; Notterman DA; Meert KL
Pediatric Critical Care Medicine
2020
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/10.1097/pcc.0000000000002585" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002585</a>
Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children
Adolescent; Anthropometry; Body Mass Index; Brazil/epidemiology; Child; Child Nutrition Disorders/*mortality; Critical Illness/*mortality; Female; Humans; Infant; Intensive Care Units; Length of stay; Length of Stay/*statistics & numerical data; Male; malnutrition; Mortality; Nutritional status; Patient Admission/*statistics & numerical data; Patient Discharge/statistics & numerical data; Pediatric intensive care unit; Pediatric/*statistics & numerical data; Predictive Value of Tests; Preschool; Proportional Hazards Models; Prospective Studies; Regression Analysis; Time Factors
BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days of PICU stay that predict 60-day mortality and time to discharge alive from the PICU. DESIGN: Single-center prospective study in Southern Brazil, conducted between July 2013 and February 2016. At PICU admission, children with z scores <-2 for body mass index (BMI)-for-age, mid-upper arm circumference (MUAC)-for-age, and triceps skinfold thickness (TSF)-for-age were considered as undernourished. PARTICIPANTS/SETTING: There were 199 patients, aged <15 years, with PICU stay >48 hours. MAIN OUTCOME MEASURES: Sixty-day mortality and time to discharge alive from the PICU. STATISTICAL ANALYSIS PERFORMED: Cox regression model was applied to determine predictors of 60-day mortality and time to discharge alive from the PICU. RESULTS: Median age was 23.1 months (interquartile range=3.9 to 89.1), and 63% were male, with 18% prevalence of undernutrition at admission by BMI-for-age. Median PICU stay was 7 days (interquartile range=4 to 12), and 60-day mortality was 12%. After adjusting for sex, age, Pediatric Index of Mortality 2, and presence of complex chronic conditions, undernutrition based on BMI-for-age (hazard ratio [HR]=3.75; 95% CI=1.41 to 9.95; P=0.008), MUAC-for-age (HR=7.62; 95% CI=2.42 to 23.97; P=0.001), and TSF-for-age (HR=4.01; 95% CI=1.14 to 14.15; P=0.031) was associated with higher risk of 60-day mortality. Based on MUAC-for-age with the same adjustment model, undernourished children had longer time to discharge alive from the PICU (HR=0.45; 95% CI=0.21 to 0.98; P=0.045). CONCLUSIONS: Undernutrition at PICU admission based on different anthropometric variables was predictive of 60-day mortality and longer time to discharge alive from the PICU.
Ventura J C; Hauschild D B; Barbosa E; Bresolin N L; Kawai K; Mehta N M; Moreno Y M F
Journal of the Academy of Nutrition and Dietetics
2020
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.jand.2019.06.250" target="_blank" rel="noreferrer noopener">10.1016/j.jand.2019.06.250</a>
Perspectives of Pediatric Providers on Patients With Complex Chronic Conditions: A Mixed-Methods Sequential Explanatory Study
complex chronic conditions; mixed-methods study; pediatric intensive care unit; pediatric palliative care; PICU; provider perspectives
BACKGROUND: Children with complex chronic conditions present unique challenges to the pediatric intensive care unit, including prolonged length of stay, complex medical regimens, and complicated family dynamics. OBJECTIVES: To examine perspectives of pediatric intensive care unit health care providers regarding pediatric patients with complex chronic conditions, and to explore potential opportunities to improve these patients' care. METHODS: A prospective mixed-methods sequential explanatory study was conducted in a tertiary medical-surgical pediatric intensive care unit using surveys performed with REDCap (Research Electronic Data Capture) followed by semistructured interviews. RESULTS: The survey response rate was 70.6% (77 of 109). Perspectives of health care providers did not vary with duration of work experience. Ten semistructured interviews were conducted. Eight overarching themes emerged from the interviews: (1) the desire for increased formal education specific to pediatric complex chronic care patients; (2) designation of a primary intensivist; (3) modifying delivery of care to include a discrete location for care provision; (4) establishing daily, short-term, and long-term goals; (5) monitoring and documenting care milestones; (6) strengthening patient and family communications with the health care team; (7) optimizing discharge coordination and planning; and (8) integrating families into care responsibilities. CONCLUSIONS: Pediatric intensive care unit health care providers' perspectives of pediatric patients with complex chronic conditions indicated opportunities to refine the care provided by establishing daily goals, coordinating discharge planning, and creating occasions for close communication between patients, families, and providers.
Kobussen T A; Hansen G; Brockman R J; Holt T R
Critical Care Nurse
2020
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/10.4037/ccn2020710" target="_blank" rel="noreferrer noopener">10.4037/ccn2020710</a>
“You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences
PICU; qualitative study; pediatric intensive care unit; good parent statements
Title “You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences Background Parents’ ideas about what it means to be a “good parent” to their seriously ill children influence their experiences of critical decision points, as well as the decisions they make for their children. Numerous studies have explored parents’ understandings of what it means to be a good parent when making such decisions, but …
Porter A S; October T; Hinds P S
Pediatrics
2020
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).
End-of-life care in a pediatric intensive care unit: The impact of the development of a palliative care unit
palliative care; pediatric intensive care unit; hospital mortality; withholding treatment; withdrawal
Background: The purpose of this paper is to describe how end-of-life care is managed when life-support limitation is decided in a Pediatric Intensive Care Unit and to analyze the influence of the further development of the Palliative Care Unit. Method(s): A 15-year retrospective study of children who died after life-support limitation was initiated in a pediatric intensive care unit. Patients were divided into two groups, pre- and post-palliative care unit development. Epidemiological and clinical data, the decision-making process, and the approach were analyzed. Data was obtained from patient medical records. Result(s): One hundred seventy-five patients were included. The main reason for admission was respiratory failure (86/175). A previous pathology was present in 152 patients (61/152 were neurological issues). The medical team and family participated together in the decision-making in 145 cases (82.8%). The family made the request in 10 cases (9 vs. 1, p = 0.019). Withdrawal was the main life-support limitation (113/175), followed by withholding life-sustaining treatments (37/175). Withdrawal was more frequent in the post-palliative group (57.4% vs. 74.3%, p = 0.031). In absolute numbers, respiratory support was the main type of support withdrawn. Conclusion(s): The main cause of life-support limitation was the unfavourable evolution of the underlying pathology. Families were involved in the decision-making process in a high percentage of the cases. The development of the Palliative Care Unit changed life-support limitation in our unit, with differences detected in the type of patient and in the strategy used. Increased confidence among intensivists when providing end-of-life care, and the availability of a Palliative Care Unit may contribute to improvements in the quality of end-of-life care. Copyright © 2020 The Author(s).
Bobillo-Perez S; Segura S; Girona-Alarcon M; Felipe A; Balaguer M; Hernandez-Platero L; Sole-Ribalta A; Guitart C; Jordan I; Cambra F J
BMC Palliative Care
2020
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/10.1186/s12904-020-00575-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00575-4</a>
Palliative care for pediatric intensive care patients and families
end-of-life care; pediatric intensive care unit; pediatric palliative care; pediatric surgery; PICU
PURPOSE OF REVIEW: Children with medical or surgical critical illness or injury require skillful attention to physical, emotional, psychological, and spiritual needs, whereas their families need support and guidance in facing life-threatening or life-changing events and gut-wrenching decisions. This article reviews current evidence and best practices for integrating palliative care into the pediatric intensive care unit (PICU), with a focus on surgical patients. RECENT FINDINGS: Palliative care is best integrated in a tiered approach, with primary palliative care provided by the PICU and surgical providers for all patients and families, including basic symptom management, high-quality communication, and end-of-life care. Secondary and tertiary levels of care involve unit or team-based 'champions' with additional expertise, and subspecialty palliative care teams, respectively. PICU and surgical providers should be able to provide primary palliative care, to identify patients and families for whom a palliative care consult would be helpful, and should be comfortable introducing the concept of palliative care to families. SUMMARY: This review provides a framework and tools to enable PICU and surgical providers to integrate palliative care best practices into patient and family care.
Rothschild C B; Derrington S F
Current opinion in pediatrics
2020
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/10.1097/MOP.0000000000000903" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000903</a>
End of life care in PICU across the UK
end-of-life care; pediatric intensive care unit; PICU; UK; United Kingdom
Objective: The care provided in the time surrounding the death of a child shapes long-term memories and has potential to impact on the grieving process. There are no specific guidelines for PICU staff in relation to what good care looks like at this time. We sought insight into practice across the UK to build an evidence base, improve care provided and share good practice. Method(s): A 10 question, anonymous, Likert survey was developed. The questions included: facilities available; Advance Care Plans; communication; patient transfer to home/hospice; follow-up for families; and training and support for staff. PICS Study Group disseminated the questionnaire to PICUs across the UK. Result(s): We received responses from 21/30 PICUs contacted (RR 70%). Around 60% of PICUs have a designated cubicle for end-of-life care. Only 21% have ACPs in place for lifelimited patients admitted to PICU. 79% stated relatively low uptake of hospice/home transfer for end-of-life care. 65% of units have Palliative Care Nurses coordinating care. Staff training is low, with no specific training in 30%. 55% provide a bereavement care pathway. Staff debrief only occurs in 50%. Conclusion(s): From the survey feedback, we found this was an area that all units believe can be improved. In relation to ACPs, we hope this will be more widely introduced. We know that 60% of patients admitted to PICU are life limited. These difficult conversations with family help guide management, understand wishes, and formal documentation ensures all staff are aware. Several units with higher uptake of hospice/home care found early conversations with families beneficial. Units with a dedicated palliative nurse stated this allowed more time with families. We believe this should become a standard of care. Staff training is limited in most units. For something so difficult and frequently encountered, it is vital we equip staff better.
Huey R; Jennings J; Maxwell V; Richardson J
Developmental Medicine and Child Neurology
2020
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/10.1111/dmcn.14411" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14411</a>
How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
brain dead; chronic disease; critically ill; death; neuromuscular disease; pediatric intensive care unit; PICU; respiratory disease
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSION(S): Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
Agra-Tunas C; Rodriguez-Ruiz E; Rodriguez Merino E
Pediatric Critical Care Medicine
2020
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/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002359</a>
Changes in Clinical Course Before and After Do-Not-Resuscitate Order Placement in a Pediatric Intensive Care Unit Setting
consults; do-not-resuscitate; imaging; pediatric intensive care unit; procedures
Background: The relationship between clinical course and do-not-resuscitate (DNR) status has not been well studied in the pediatric intensive care unit (PICU) setting. Objective(s): To describe the relationship between DNR order placement and clinical course. Design(s): Single center retrospective cohort study. Setting/Subjects: Patients, ages 0-18 years, who have died in the PICU from 2008 to 2016. Measurements: Retrospective chart review of DNR status, patient characteristics, and clinical course. We compared length of stay and number of consults/procedures/imaging studies done on patients with early DNR (>48 hours before death), late DNR (within 48 hours of death), and no DNR order placement. Result(s): One-hundred and sixty-one children were included. Nearly half (48%) were male with median (interquartile range) age of 3 years (0-12). One-third (58) had an underlying oncologic diagnosis. Eighteen percent (29/161) were classified as early DNR, 33% (53/161) as late DNR, and 49% (79/161) as no DNR. We found no differences in patient characteristics or risk of mortality at admission among the groups. The early DNR group showed decreased number of invasive procedures (0.68), imaging studies (1), and consults (0.21) per day when compared with the late (2, 1.53, 0.50) and no DNR groups (2.09, 1.73, 0.43). Conclusion(s): Our results suggest that early DNR placement in the PICU is associated with a change in clinical course centered around less invasive care. Earlier DNR placement can potentially trigger a shift in care goals that could improve the quality of life for patients and mitigate emotional and physical toll on patients and their families during the highly stressful end-of-life time period.
Ennamuri S; Abramson E; Mauer E; Gerber L M; Nellis M E
Journal of palliative medicine
2020
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/10.1089/jpm.2019.0572" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0572</a>
Defining a "Good Death" in the Pediatric Intensive Care Unit
good death; parental perspectives; pediatric intensive care unit; PICU
BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely. OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents. METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches. RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept. CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.
Broden E G; Deatrick J; Ulrich C; Curley M A Q
American Journal of Critical Care
2020
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/10.4037/ajcc2020466" target="_blank" rel="noreferrer noopener">10.4037/ajcc2020466</a>
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Grunauer M; Bustamante G; Zambrano K
Journal of Pain and Symptom Management
2020
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.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
Perceptible end-of-life signs in PICU, a prospective study
artificial ventilation; bradycardia; brain death; caregiver; cause of death; child; chronic disease; clinical article; conference abstract; cyanosis; drug withdrawal; edema; human; hypotension; male; neurologic disease; pallor; pediatric intensive care unit; petechia; prospective study; respiratory failure; skin color; time of death
Introduction: IFiReaPed study is a prospective ongoing study about perceptible end-of-life signs in Paediatric Intensive Care Unit (PICU). IFiReaPed main hypothesis is that a better information of parents about those perceptible end-of-life signs could help them to live better this situation. In the literature, there is no study on this topic in PICU, therefore our first step is to observe dying children to determine which signs are worsening or appearing during end-of-life period.
Pierron C; Poncelet G; Sommet J; Naudin J; Le Bourgeois F
Annals of Intensive Care
2019
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/10.1186/s13613-018-0474-7" target="_blank" rel="noreferrer noopener">10.1186/s13613-018-0474-7</a>
The chameleon project: A children's end of life care quality improvement project: Preliminary results
child; child death; human; palliative therapy; controlled study; pediatric intensive care unit; terminal care; bereavement; conference abstract; hospital admission; newborn; questionnaire; documentation; cost control; England; preliminary data; teaching; total quality management
Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been funded for 12 months to audit and improve children's end of life care across the region. It provides a regional specialist team: consultant paediatrician 2 days a week, clinical nurse specialist 3 days, clinical academic researcher 2 days, network administrator 2 days, 3 paediatricians with expertise in palliative care in each of 3 district general hospitals 0.5 days. Methods The team developed tools to aid identification of children with end of life care needs. These were embedded by weekly attendances by the team at ward rounds and board rounds in the region's hospitals. We also delivered lectures and case based teaching sessions to clinical teams and at regional study days. A bereaved family feedback tool was adapted from ones used by the London Neonatal Network. Children with life limiting conditions who died an expected death in the 12 months of the project were identified from the child death review databases. Numbers of specialist hospital admissions, bed days, and costs were identified. Quality of care will be evaluated from documentation of care plans and post bereavement family feedback questionnaires. Results Compared to the year before the project started, the mean number of non-elective admissions reduced from 2.3 to 1.9; the number of non-elective bed days reduced from 51 to 32; and the number of non-elective bed days on neonatal and paediatric intensive care units reduced from 28 to 20, in the last 12 months of life per child. Quality of care is currently being assessed against NICE Quality Standards QS160.2 Conclusions These preliminary results indicate that a dedicated paediatric palliative care team can reduce admissions and bed days for children in their last year of life. We hope that further analyses will demonstrate improved family experience and cost savings for local NHS providers.
Haynes S; Kelly N; Turnbull J; Griffin H; Connolly A; Dorsett C; Brown J; Wolff A
Archives of Disease in Childhood
2019
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/10.1136/archdischild-2019-rcpch.456" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.456</a>
Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; retrospective study; controlled study; childhood cancer; pediatric hospital; Caucasian; length of stay; palliative therapy; pediatric intensive care unit; child hospitalization; confidence interval; demography; health insurance; hospital admission; infant; newborn; patient referral
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization. Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day. Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13-0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08-0.26; p < 0.001) for children with nononcologic conditions. Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
Rossfeld ZM; Miller R; Tumin D; Tobias JD; Humphrey LM
Journal of Palliative Medicine
2019
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/10.1089/jpm.2018.0292" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0292</a>