Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
burnout; child; clergy; conference abstract; controlled study; female; health care delivery; health care system; hospital patient; human; major clinical study; male; palliative therapy; physician; practice guideline; registered nurse; social worker
Objectives: * Examine the key structures and processes of inpatient pediatric palliative care programs in the United States. * Assess the degree of variation in program delivery, staffing, and patient volumes. * Identify three threats and three opportunities to the standardization of pediatric palliative care practice. Original Research Background: Over the past ten years, health care systems have begun to recognize pediatric palliative care (PPC) programs as the standard of practice in providing high-quality care. Despite this culture shift, little is known about how PPC programs operate, the services they provide, or the staffing required to provide them sustainably. Research Objectives: To examine the key structures and processes of PPC programs.
Rogers M; Williams C; Klick J; Friebert S; Heitner R
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.2019.12.299" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.299</a>
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; grounded theory; intensive care unit; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Szabat M
Nursing inquiry.
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/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</a>
More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants
Infant; human; palliative therapy; gestational age; medical decision making; practice guideline; Infant Premature; qualitative research; prematurity; pediatric patient; resuscitation; letter
We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use an integrative approach to resuscitation decisions for extremely premature infants, one that takes into proper account other prognostic factors as well as parents' opinion. We also find it alarming that so many neonatologists have negative attitudes towards resuscitation of infants at 22 and 23 weeks. We agree that it is acceptable to advise palliative care at these gestational ages as mortality and morbidity remain high, but parents should be involved in the decision-making and they should be allowed to opt for resuscitation. Physicians' negative attitudes might hinder true shared decision-making. In this regard, Sriraman et al indirectly identify another underlying issue related to our understanding of resuscitation decisions for premature infants. We have plenty of studies investigating physicians' attitudes towards resuscitation of these infants. However, the vast majority of empirical research on this topic is quantitative in nature.3 Quantitative studies are well suited to elicit general trends, in this case, whether on average physicians prefer to resuscitate at 22 and 23 weeks, but they are ill-suited to uncover the complexities behind such trend. In other terms, quantitative methods provide a valuable description of a certain phenomenon, but they cannot explain why things are the way they are. Applied to the context of resuscitation decisions for preterm infants, the lack of qualitative studies means that we know that physicians prefer palliative care at the lowest gestational ages, but we do not know why. On top of that, there is also little research on how physicians make resuscitation decisions in practice, meaning that we also do not know to what extent attitudes and practice correspond. As Sriraman et al pointed out we need to understand whether the fact that physicians prefer not to resuscitate at the lowest gestational ages means that they refuse all resuscitation requests. We also need to understand what factors influence these decisions. This knowledge is not only necessary to better understand this complex and ethically challenging decision-making, but it is also necessary to understand how to improve this decision-making. It can also offer important insight to draft guidelines that can better guide parents and healthcare providers through this process. Hence, we welcome the research that Sriraman's team is planning and we are looking forward to the results.
Cavolo A; Gastmans C
Acta Paediatrica
2023
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<a href="http://doi.org/10.1111/apa.16901" target="_blank" rel="noreferrer noopener">10.1111/apa.16901</a>
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Eventov-Friedman S; Kanevsky H; Bar-Oz B
Pediatrics
2013
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/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>
Supporting Best Practice For Attending A Child's Funeral As Part Of Our Professional Role: Guidelines For Developing Service Policy
Child Care; Health Care Policy; Posthumous Care; Practice Guideline; Professional Standard; Bereavement; Human; Letter; Palliative Therapy
Finlay F; MacCallam J
Journal Of Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1089/jpm.2017.0173
Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
child; article; controlled study; female; human; male; practice guideline; clinical article; Internet; Internet; Enuresis; questionnaire; nocturnal enuresis; government; health care planning; nephrologist; urologist; reading; continence; pediatric surgeon; search engine
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of health-related information on the internet varies greatly and is largely uncontrolled and unregulated. With this study, a readability, quality and accuracy evaluation of the health information regarding nocturnal enuresis is carried out. Materials and Methods A questionnaire was administered to parents and patients with nocturnal enuresis to determine their use of the internet to research their condition. The most common search terms were determined, and the first 30 websites returned by the most popular search engines were used to assess the quality of information about nocturnal enuresis. Each site was categorised by type and assessed for readability using the Gunning-Fog score, SMOG index and Dale-Chall score; for quality using the DISCERN score; and for accuracy by comparison to the International Children's Continence Society (ICCS) guidelines by three experienced paediatric urologists and nephrologists. Results A total of 30 websites were assessed and classified into five categories: professional (n = 13), non-profit (n = 8), commercial (n = 4), government (n= 3) and other (n= 2). The information was considered difficult for the public to comprehend, with mean Gunning-Fog, SMOG index and Dale-Chall scores of 12.1+/-4.3, 14.1+/-4.3 and 8.1+/-1.3, respectively. The mean summed DISCERN score was 41+/-11.6 out of 75. Only seven (23%) websites were considered of good quality (DISCERN score > 50). The mean accuracy score of the websites was 3.2+/- 0.6 out of 5. Commercial websites were of the poorest quality and accuracy. Websites generally scored well in providing their aims and identifying treatment benefits and options, while they lacked references and information regarding treatment risks and mechanisms. Conclusions Online information about nocturnal enuresis exists for parents; however, most websites are of suboptimal quality, readability and accuracy. Paediatric surgeons should be aware of parents' health-information-seeking behaviour and be proactive in guiding parents to identify high-quality resources.Copyright Thieme. All rights reserved.
Fung ACH; Lee MHL; Leung L; Chan IHY; Kenneth W
European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
2023
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<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener">10.1055/a-2156-4833</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
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<a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a>
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results: There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion: Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</a>
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study
adolescent; advance care planning; article; awareness; child; content analysis; decision making; documentation; emergency health service; female; health care personnel; human; human experiment; living will; male; Palliative therapy; pediatrics; practice guideline; qualitative research; trust
BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks.
Hein K; Knochel K; Zaimovic V; Reimann D; Monz A; Heitkamp N; Borasio G D; Fuhrer M
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/10.1177/0269216319900317" target="_blank" rel="noreferrer noopener">10.1177/0269216319900317</a>
Advanced care planning in cystic fibrosis
cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Pediatric Pulmonology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Neonatal Palliative Care Practices: An Indian Perspective
article; female; human; human experiment; India; male; memory; middle income country; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; palliative therapy; photography; practice guideline; questionnaire; terminal care
Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe neonatologists' level of knowledge and understanding of NPC, and to describe current practices and barriers to its delivery. Method(s): The study, a cross-sectional web-based national survey, was undertaken between 2019 and 2020. A structured form of 22 questions about NPC was completed by neonatologists across level III neonatal intensive care units in India. Result(s): Of the 145 questionnaires sent out, 65 responses were returned (44.8%). The participating units were in both public (38.5%) and private/corporate hospitals (61.5%). The concept of NPC was known to 90.8%, and 93.8% could identify conditions necessitating palliation. However, 81.5% of units lacked a palliative team, and few had teams of only neonatologists and neonatal nurses. Only 10.8% of the units had a structured policy, but none addressed all aspects of neonatal palliation. The creation of memories by parents spending time with their neonate (38.9%), photography (75.9%), footprints (13%) or collecting memorabilia was allowed at many centres. Frequently encountered barriers included inadequate knowledge (16.9%), poor infrastructure (21.5%), inadequate human resources (24.6%) and a lack of structured guidelines and legal support (15.4%). Conclusion(s): This is the first study to highlight a large gap in neonatal end-of-life care in India and it reflects an urgent need to facilitate its incorporation into routine care. Abbreviations: NICU: neonatal intensive care unit; NPC: neonatal palliative care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Mascarenhas D; Goyal M; Nanavati R
Paediatrics and International Child Health
2022
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<a href="http://doi.org/10.1080/20469047.2022.2089821" target="_blank" rel="noreferrer noopener">10.1080/20469047.2022.2089821</a>
Caring for dying children in the paediatric intensive care unit [PICU]
Pediatric intensive care unit;Child;child parent relation;clinical article;conference abstract;critically ill patient;Female;human;intimacy;Male;medical examination;nurse;palliative therapy;practice guideline;Sweden;terminal care
Aims & Objectives: Caring for dying children is complex and requires coordination of all resources. In PICU the main objective is to save lives and ensure vital functions in critically ill children. However due to the child's critical and life threatening condition, there is always the possibility the child will not survive. The acuity and technical nature of the intensive care context can provide an obstacle in the transition to palliative care and furthermore conflict with the affected families' needs. The study aim was to enlightening caring as it is represented in caring situations of dying children at PICU. Methods An Interpretative Phenomenological design was applied. The data collection was performed at three PICU in Sweden at 2011 and 2016. Caring situations of a total of 18 children were observed, six cases were estimated as end of life care or life threatening conditions. Nurses and parents were interviewed in direct connection to the observation. Results findings showed that for nurses, it was a challenge to change perspective from curative to palliative care. Medical examinations and treatment was experienced to disturb the dying child thus causing unnecessary suffering. Parents found it difficult to leave their dying children even just for a moment and the space in PICU did not support closeness and parenting but rather separated the dying child from her/his family. Conclusions In conclusion, these findings illuminates the importance of guidelines and training in palliative care in PICU. Children and their family ought to have the best care possibly when affected by life-limiting or life-threatening illness.
Mattsson J
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/10.1097/01.pcc.0000537367.72140.25" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537367.72140.25</a>
Palliative Care for Childhood Cancer
child; Palliative Care; human; quality of life; family; home care; practice guideline; pain; Netherlands; cancer patient; physician; hope; health care quality; hospital care; health care planning; health care access; health care personnel; daily life activity; cancer palliative therapy; evidence based practice; medical education; editorial; nausea; child health care; collaborative care team; vomiting; hematopoietic stem cell transplantation; nurse; disease burden; advanced cancer; cause of death; patient worry; health care need; illness trajectory; childhood cancer/th [Therapy]; personalized cancer therapy
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].
Michiels EM
Children
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/children9060777" target="_blank" rel="noreferrer noopener">10.3390/children9060777</a>
The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
Delphi study; funding; modified Delphi study; palliative therapy; pediatrics; Switzerland; adult; aged; article; clinical practice; consensus development; Delphi Technique; evidence based medicine; female; health care cost; health care delivery; health service; human; male; Palliative Care; practice guideline; program effectiveness; program sustainability; reimbursement; Switzerland
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study’s first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.
Mitterer S; Zimmermanna K; Fink G; Simon M; Gerber AK; Bergstrasser E
Swiss Medical Weekly
2023
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<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener">10.57187/s.3498</a>
Feed-induced Dystonias in Children with Severe Central Nervous System Disorders
infant; adolescent; cerebral palsy; percutaneous endoscopic gastrostomy; retrospective study; priority journal; practice guideline; case study; school child; preschool child; intestine obstruction; human; article; child; female; male; clinical article; Rett syndrome; gastroesophageal reflux; infantile spasm; intestinal dysmotility; baclofen/dt [Drug Therapy]; dystonia/dt [Drug Therapy]; motor dysfunction; onset age; central nervous system disease; dystonia/dt [Drug Therapy]; feed induced dystonia; 1134-47-0 (baclofen); acquired brain injury; baclofen/tl [Intrathecal Drug Administration]; feed induced dystonia/dt [Drug Therapy]; gastroscopy; hydrocephalus; hyperglycinemia; intestine motility; microcephaly; peristalsis; reflux esophagitis; Sanfilippo syndrome; total parenteral nutrition; constipation; feeding difficulties; tone and motor problems; MPSIII; West syndrome; pharmacologic intervention; parenteral nutrition; dystonia; GERD; intestinal dysmotility
Dystonias can arise from any painful stimuli in neurologically disabled children. Classically, feed-induced dystonias from mediastinal pain due to severe gastroesophageal reflux disease are described as Sandifer spasm. We report a case series of 12 severely neurologically impaired children with enteral feed-induced dystonias. Intestinal dysmotility was demonstrated in several. Improvements are seen with jejunal feeds or gut rest with total parenteral nutrition. Use of parenteral nutrition in children with severe neurodisability requires thorough discussion with patient groups and commissioners to give clinicians guidelines to standardize care.
Mordekar S R; Velayudhan M; Campbell D I
Journal of Pediatric Gastroenterology and Nutrition
2017
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<a href="http://doi.org/10.1097/MPG.0000000000001543" target="_blank" rel="noreferrer noopener">10.1097/MPG.0000000000001543</a>
Use of Mobile Cold Sheets in Paediatric Hospice Care
cold stress; Hospice Care; Australia; Child; child parent relation; Cold Temperature; conference abstract; cooling; emergency care; funeral home; Hospice Care; Hospice; Human; learning; Memory; nut; posthumous care; practice guideline; privacy; twins; unlicensed drug use
After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making opportunities (Oldham, 2021. ehospice. [Int. Child. ed.], Sept.29) when this may have been limited in the acute care setting or families may have been focused on acute care and interventional management. Resources that are required include family support and clinical teams with experience in after death management, and resources to promote cooling. The length of admission provided to families varies across paediatric hospices and depends on a balance of family preferences, policies of the facility based on experience and condition of the body. As such, any resources that can promote optimal cooling facilitate more time and a better experience for families. Hummingbird House Hospice (Brisbane, Australia) and Acorns (West Midlands, UK) are experienced in after death care. Hummingbird House uses innovative mobile cold sheets to best support after death care, now being adopted as practice in Acorns Hospices with collaboration between services. Mobile cooling sheets are inexpensive, simple to use and do not require coolant to be pumped through like 'cuddle cots' or other cooling mat devices. Advantages include decreased reliance on coolant-based technology (more vulnerable to malfunction), ability to facilitate twins (or other multiple births) being laid together, and increased portability to experience 'normal' parenting such as having time outside in a pram. A case study highlights advantages from a family perspective. The organisational barriers to implementing this new practice have included: justifying additional resources to those already available; need for educational resources and organisational guidelines; lack of local experience; concern about unlicensed use of products and correct storage. We hope to share our experiences and learnings with this new technology to increase the options in care available to bereaved families across the UK.
Mott C; Oldham K
BMJ Supportive and Palliative Care
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/10.1136/spcare-2022-HUNC.207" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.207</a>
The integration of palliative care in Dr Congo "a Model of Sustainability": A field study
analgesia; capacity building; caregiver; child; conference abstract; Congo; Congolese (Kinshasa); doctor nurse relation; female; field study; home care; human; leadership; major clinical study; male; organization; palliative therapy; practice guideline; primary health care; sensitization; training; Uganda; volunteer
Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deteriorationofthe health system and the absenceof a well-defined national policyonpalliative care. Patients are for the most part abandoned to the care of inexperienced family members. Driven by the fact that the number of palliative patients has been increasing steadily over the past five years, the Palliafamilli association and its partners have taken leadership in the fight for palliative care. The major issue that blocks palliative care in RD Congo is the lack of knowledge about palliative care both in the population and even in health professionals. Most patients are treated at home with strong family involvement in many aspects of care. Aim(s): To promote good health practices at the community level and equip them with the knowledge and means to prevent their health problems, with a focus on palliative care and to contribute to the implementation of the Strategy for Strengthening the Health SystemofDRCongo by facilitating a program of access to palliative care for the entire Congolese population. Strategy/Tactics: During the last7years,wehave organized conferences, congresses, various training sessions on pain management, sensitization activities, capacity building courses and advocacy activities within the Ministry of Health for national palliative care guidelines. Program/Policy process: The organization of two International Congress of Palliative Care in Kinshasa in April 2013 (550 participants) and September 2015 (700 participants) Training of 3 health professionals on the palliative approach in Uganda (2013) Participation at the Second Francophone Palliative Care Congress in Montreal 2013 A palliative care training course at the University of Kinshasa in 2015 (115 participants) The organization of the International Colloquium of Pediatric Palliative Care in Kinshasa in 2015 Participation in the 4th International Francophone Congress of Palliative Care in Geneva (2017) Participating in the drafting of national guidelines for palliative care within the Ministry of Health (2017) Capacity building for two members of PalliaFamilli thanks to the scholarship offered by the UICC. What was learned: In DR Congo, palliative care and pain relief require a cross-cutting approach, as resources are limited, many people are in need of care, and there are few nurses and doctors empowered to provide care. An effective approach is to involve community or volunteer caregivers supervised by health professionals, and Palliafamilli is successful due in its mul-tidisciplinary and multisectoral approach, with adaptation to cultural, social and economic specificities and its integration with existing health systems, focusing on primary health care and community and home care.
Mubeneshayi Kananga A
Journal of Global Oncology
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/10.1200/jgo.18.36900" target="_blank" rel="noreferrer noopener">10.1200/jgo.18.36900</a>
Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU
awareness; conference abstract; controlled study; human; infant; leadership; medical record review; needs assessment; nurse; palliative therapy; patient referral; physician; practice guideline; satisfaction
The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those with medically complex conditions that have potential in progressing towards death. It may be helpful to utilize written criteria for palliative care consultation (PCC) for patients who can benefit from early referral. Thus, our specific aim is to increase the number of PCCs within our level 4 NICU by 20% by the end of December 2016. Our global aim is to improve the care of the medically complex infant in need of multidisciplinary management, which includes palliative care services provided by our palliative care team (named CORE team). The need for a list of triggers was found after distributing a needs assessment survey amongst bedside nurses, nurse practioners, fellows, and attendings. The list was adapted from Caitlin and Carter (2002), and development included input from NICU leadership. The list was posted in the physician workrooms (Figure 1). Bi-monthly reminders were sent out to the NICU fellows on service to review their team's census, identify those who met criteria for PCC, and were encouraged to discuss these patients and their indications for PCC during daily multidisciplinary rounds. After 6 months, a post implementation survey was distributed. Medical chart review of each NICU admission since January 2014 was done to assess which patients met criteria for PCC, how many received a PCC, and the number of days between date of admission and the initial consultation. Prior to implementation, of those who qualified for PCC, 26% received consultation. After implementation, the percentage increased to 46%. The post implementation survey found an increase in understanding the CORE team's role in the NICU, knowing when to consult, and awareness of a positive difference within the NICU since utilizing their services more frequently (Figure 2a). Lastly, the time until initial consultation decreased from approximately two months to one week (Figure 2b). We achieved our goal of increasing the number of PCC. The listed triggers helped establish prompt and proactive referral to the palliative care team at our institution. Not only can a written guideline increase awareness of a palliative care team's role within a NICU, but it also enhances the satisfaction amongst providers of the care they are giving. Next steps include involving the CORE team during weekly multidisciplinary rounds, as well as developing a strategy for those who can benefit from CORE team within 24 hours or overnight. We speculate that utilization of palliative care within the NICU can help guide revision of treatment goals, and provide continuity of care and support to families in need of resources.
Nguyen L T; Spear M L
Pediatrics
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).
Neonatal Palliative Care
Palliative Therapy; Basic Needs; Comfort; Distress Syndrome; Follow Up; Grief; Human; Newborn; Practice Guideline; Prognosis; Satisfaction; Terminal Care
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim of this article is to review the most recent and relevant literature regarding neonatal palliative care (NPC). RECENT FINDINGS: A variety of perinatal and NPC programs are described, but most programs focus exclusively on end-of-life care. Moreover, there is a great need to standardize practices and obtain follow-up quality measures.Guidelines to address infants' basic needs, to achieve a state of comfort, are proposed. A multidisciplinary team addressing the infants' medical and nonmedical needs, parental grieving process, and providers' distress is recommended. SUMMARY: NPC is a unique multidisciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis. Standardized guidelines should be implemented with the goal of achieving a state of comfort for newborns throughout the course of illness. Further studies are warranted to assess whether NPC effectively promotes newborns' comfort and parents and providers' satisfaction. Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.
Parravicini E
Current Opinion In Pediatrics.
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1097/MOP.0000000000000464
The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
Pediatrics
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/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</a>
[Use of subcutaneous route for comfort care in neonatal palliative population: Systematic review and survey of practices in France]
Analgesia; Analgesic Agent; Child; Comfort; Drug Therapy; France; Human; Medline; Neonatal Intensive Care Unit; Newborn; Palliative Therapy; Practice Guideline; Sedation; Systematic Review; Tranquilizing Activity
Introduction: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not exist due to a lack of data. In this study, the advantages of subcutaneous analgesic therapy in terms of comfort in neonatal palliative care situations were investigated. Methods: This report details the results of a systematic review associated with a survey in neonatal intensive care units (NICUs) and pediatric palliative care departments (PPCTs) in France. Results: No article was available in the Medline database. In Google<sup></sup>, we found six guidelines that described the use of the subcutaneous route in the pediatric palliative population. The participation rate in the survey was approximately 83 % for French NICUs and 74 % for PPCTs. Eleven percent of NICUs and 27 % of PPCTs had already used subcutaneous drug administration for palliative care, mainly for analgesia and terminal sedation. Limiting factors of its use were mainly alternative options and the lack of data. Nevertheless, 76 % of NICUs and 73 % of PPCTs expressed an interest in the use of the subcutaneous route in NICUs. Ninety-one percent of French NICUs and 80 % of PPCTs were interested in elaborating a protocol using the subcutaneous route for analgesia, anxiolysis, or terminal sedation. Conclusion: The subcutaneous route can be advantageous for comfort care in the neonatal palliative population. Studies are needed to define the modalities, pharmacodynamics, and pharmacokinetics of therapeutics in this population.
Pouvreau N; Tandonnet J; Tandonnet O; Renesme L
Archives De Pediatrie
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.arcped.2017.06.009">10.1016/j.arcped.2017.06.009</a>
The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study
adult; article; child; human; palliative therapy; genetic transcription; qualitative research; thematic analysis; home environment; pain; quality of life; education; young adult; semi structured interview; practice guideline; Spain
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. DESIGN: A qualitative methodology was chosen. SETTING: The unit of pediatric palliative care at the Hospital Nino Jesus (Madrid, Spain). POPULATION: The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. METHOD(S): Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. RESULT(S): Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. CONCLUSION(S): The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.
Rico-Mena P; Palacios-Cena D; Martino-Alba R; Chocarro-Gonzalez L; Gueita-Rodriguez J
European journal of physical and rehabilitation 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/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">10.23736/S1973-9087.19.05474-1</a>
Oral and dental considerations in pediatric cancers
child; complication; human; palliative therapy; female; male; survival rate; practice guideline; childhood cancer; cancer survival; cancer therapy; review; adolescent; pain; systematic review; occupation; Medline; prevention; vulnerable population; mucosa inflammation; cancer survivor; counseling; dental procedure; cancer prevention; cancer screening; English (language); immunosuppressive treatment; mouth infection; pediatric dentist; tooth malformation
Oral health care is an integral component of interprofessional collaborative care for children and adolescents diagnosed with cancer. The current review highlights the phases of cancer therapy when dental interventions and palliative care are necessary for children diagnosed with cancer. Contemporary research and review articles pertinent to the oral and dental complications during pediatric cancer therapy and late effects in pediatric cancer survivors were identified by PubMed/MEDLINE search. Best practice guidelines set forth by specialty organizations were also included. The literature search was limited to articles published in the English language. Baseline oral and dental health assessment should occur before initiation of cancer therapy to prevent debilitating complications during the immunosuppressed phase. Counseling on preventive oral health practices is imperative during cancer treatment. Ideally, all dental treatment should be completed before initiation of immunosuppressive therapy. Palliative care and treatment for mucositis, opportunistic oral infections, pain, and other oral complications associated with cancer therapy should be provided as necessary. Survivors of childhood cancers present with unique craniofacial and dental anomalies, dependent on the type of cancer treatment and age at the time of treatment. Pediatric dentists and pediatric oncology teams work collaboratively to screen for and treat dental and oral diseases. As the survival rates of childhood cancers improve, it is essential for the dental profession to provide the individualized care necessary for this vulnerable population. The oral health profession also reinforces health practices congruent with cancer prevention and cancer screening.
Ritwik P; Chrisentery-Singleton T E
Cancer metastasis reviews
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/10.1007/s10555-020-09842-5" target="_blank" rel="noreferrer noopener">10.1007/s10555-020-09842-5</a>
Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
hospice patient;pediatric patient;acid;adult;cancer patient;central nervous system cancer;chi square test;Child;conference abstract;constipation;controlled study;corticosteroid;death;diagnosis;diazepam;diphenhydramine;drug formulation;drug therapy;dyspnea;Female;genetic disorder;haloperidol;hospice care;human;hyoscyamine;institutional review;laxative;Length of Stay;levetiracetam;lorazepam;macrogol;major clinical study;metoclopramide;morphine;nausea;ondansetron;opiate;pain;paracetamol;patient information;practice guideline;preschool child;prochlorperazine;retrospective study;salbutamol;seizure;unclassified drug;vitamin
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with adult patients, palliative care for children focuses on holistic care, including the alleviation of physical, psychosocial, and spiritual suffering. Medications are used in hospice patients to palliate physical symptoms of terminal illness, including pain, dyspnea, nausea, and fatigue. The purpose of this study was to characterize the most commonly prescribed medications and medication classes in a population of pediatric hospice patients. Methods We conducted a retrospective review of a patient information database compiled by a national hospice organization. The database contained demographic information, as well as information on drug name, dosage, formulation, and strength. Medications were also characterized by pharmacological class. We compared proportions of the most commonly prescribed pharmacological classes among the three most common admitting diagnoses: cancer, central nervous system disorders, and genetic disorders. We used chi-square test or Fisher's exact test to detect any associations between admitting diagnosis and drug class. The institutional review board at the University of Maryland determined that this study was not human subjects research. Results Of 177 patients in the database, 116 patients were included in the study; these patients were admitted to hospice on or after January 1, 2011 and discharged by death on or before December 31, 2016. Sixty-one patients who were discharged prior to death were excluded. The average age of patients at admission was 6 years old (SD = 6.1) and 63% of patients were female. The median length of stay was 14.5 days (range: 0-411 days). A total of 3 017 medication orders were evaluated. Medication classes used for symptom management were most commonly prescribed. Six of the 10 most commonly prescribed drugs (morphine, lorazepam, acetaminophen, hyoscyamine, prochlorperazine, and haloperidol) were all included in the symptom management medication kits provided to most patients at admission. Other drugs prescribed for over 20% of patients included metoclopramide, diphenhydramine, albuterol, altropine, ondansetron, diazepam, polyethylene glycol, levetiracetam. Opioid analgesics, anxiolytics, anticholinergics, and antiemetics were prescribed to over 50% of patients at some point during admission. Other frequently prescribed medication classes non-opioid anageiscs, anticonvulsants, antiinfectives, laxatives, corticosteroids, acid reducers, antipsychotics, and vitamins/supplements. Of the 20 most commonly prescribed drug classes, patients with cancer were significantly more likely than those with CNS disorders or genetic disorders to be prescribed anticholinergics (p = 0.03), antiemetics (p < 0.0001), non-opioid analgesics (p = 0.003), laxatives (p = 0.003), corticosteroids (p = 0.0004), antihistamines (p = 0.01), acid reducers (p = 0.03), and antipsychotics (p < 0.0001). Conclusions Medications commonly prescribed for children receiving hospice care include those intended to treat symptoms including pain, dyspnea, nausea, seizures, and constipation. A general understanding of medications used in hospice care may be helpful in the development of educational materials, medications guidelines and protocols, and questions for future research.
Sera L;Morgan J;McPherson ML
Postgraduate 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/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">10.1080/00325481.2018.1512253</a>
Development and integration of a perinatal palliative care program at a tertiary care center
hospice; newborn; anencephalus; intensive care; clergy; nurse; social worker; comfort; practice guideline; neonatologist; tertiary care center; conference abstract; human; child; female; controlled study; perinatal care; palliative therapy; abortion; electronic medical record; fetus malformation; Oklahoma; prenatal diagnosis
Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law stating 'it is the duty of the physician to inform the woman who carries a fetus with anomalies that perinatal hospice services are available and that this is an alternative to abortion'. We aim to describe the process of developing a perinatal palliative care (PPC) program for newborns with prenatal diagnoses of life-limiting conditions. Methods used Focus groups were conducted with responsible parties. Existing resources were identified. Implementation approaches were discussed. Summary of results The need for a PPC team was identified. Nurses, neonatologists, chaplains, social workers and child life specialists were integrated into this service with the support of an existing pediatric palliative care team. A new PPC program was introduced. Prenatal consults initiated by maternal-fetal medicine are an integral part of the prenatal care. Options of intensive care versus comfort care are offered. A neonatologist attends all these deliveries. The newborn stays with the mother. Special nurses were assigned for comfort care in the mother's room. Guidelines and specific PPC orders are now available in the electronic medical record. Examples are listed in the table 1. A website was created to inform referring physicians about this new program. Conclusions PPC was successfully established at a regional tertiary center. Parents of newborns diagnosed with lethal conditions have the choice of often non-beneficial intensive care or care focused on comfort after birth. This specialized care allows parents to celebrate the limited life of their precious newborns. Providers across the state have now access to a referral center offering perinatal neonatal palliative care. (Table Presented).
Shah B A; May R; White L; Wlodaver A
Journal of Investigative Medicine
2019
<a href="http://doi.org/10.1136/jim-2018-000974.461" target="_blank" rel="noreferrer noopener">10.1136/jim-2018-000974.461</a>
Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage
Care Behavior; Health Care Quality; Intensive Care; Nurse; Nursing Care; Palliative Therapy; Terminal Care; Article; Checklist; Content Validity; Controlled Study; Correlation Coefficient; Face Validity; Human; Infant; Neonatal Intensive Care Unit; Newborn; Practice Guideline; Reliability
Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the existing standards. Knowing how End-of-Life nursing care is provided, compared with the standard in the terminal stage of neonates' life can provide accurate information for policies, research, and educational practices. Method(s): In this descriptive study, 100 nursing care services, provided to neonates at the EOL stages and their parents, were observed and compared to the standard checklist which had been developed based on the literature review and existing standards in 2015. The study setting included the NICUs of the four hospitals affiliated to (XXX) The Content and Face Validity of the checklist were determined based on specialists' comments. The Content Validity Index was 94.85%, and its reliability was evaluated too through the inter-rater correlation coefficient (ICC = 0.715). Result(s): Only 11.49% of EOL nursing care services were given properly and 77.92% were not given at all. Results showed that 10.59% of EOL nursing care services were performed improperly. Conclusion(s): The overall rate of accordance with the EOL nursing care standards was poor (16.78%). Nursing care given to infants and their parents at EOL stages is far from the standards. This can be due to various reasons, such as inadequate training and the lack of comprehensive guidelines.Copyright © 2022 The Authors
Shahintab S; Nourian M; Rassouli M; Pourhoseingholi MA
Annals of Medicine and Surgery
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/10.1016/j.amsu.2022.104729" target="_blank" rel="noreferrer noopener">10.1016/j.amsu.2022.104729</a>
Impact of Pediatric palliative care initiative at tertiary cancer care hospital of nepal
quality of life; hospice; analgesia; terminal care; cancer center; hematologic malignancy; palliative therapy; dyspnea; major clinical study; practice guideline; case study; brain tumor; conference abstract; human; child; female; male; diagnosis; gastrointestinal symptom; wound; sarcoma; Nepal
Sharma KS; Panthee S
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</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>
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
article; care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; female; grounded theory; human; intensive care unit; male; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Szabat M
Nursing inquiry
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/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</a>
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Netherlands; advance care planning; bereavement support; child; clinical practice; conference abstract; controlled study; female; human; male; palliative therapy; practice guideline; randomized controlled trial (topic); shared decision making; systematic review
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. In 2013, the first Dutch multidisciplinary clinical practice guideline for pediatric palliative care was developed, providing recommendations on relief of symptoms, decision-making and organization of care. Evaluation of the guideline revealed a need for revision of the recommendations and inclusion of new recommendations on E-Poster Topics such as psychosocial and bereavement care, advance care planning and shared decision-making. The aim of this research is to improve provision of pediatric palliative care in the Netherlands by developing an updated version of the Dutch Pediatric Palliative Care guideline. Method(s): A multidisciplinary guideline panel reviewed literature on pediatric palliative care by systematic literature searches. The GRADE methodology was used to grade the evidence and to formulate recommendations. Recommendations were formulated and refined based on the evidence, clinical expertise, and patient values. For those E-Poster Topics where no evidence was available, recommendations were based on other guidelines, clinical expertise and patient values. Result(s): The updated systematic literature search identified 14 randomized controlled trials and 15 systematic reviews that prompted refinement of recommendations. For 27 out of 42 formulated clinical questions, no evidence was found. This revealed major gaps in knowledge on pediatric palliative care. Based on evidence (if available), clinical expertise and patient values, more than 100 recommendations on various E-Poster Topics in pediatric palliative care were generated. Conclusion(s): The updated guideline uses existing evidence and national expertise to develop transparent and easy-to-use recommendations to facilitate provision of high quality pediatric palliative care. The guideline promotes interdisciplinary collaboration and opens opportunities for international research into the identified knowledge gaps to further improve pediatric palliative care.
Van Teunenbroek K; Mulder R; Kremer L; Borggreve B; Verhagen AAE; Michiels E
Pediatric Blood and Cancer
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/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Palliative care for children: methodology for the development of a national clinical practice guideline
child; article; human; palliative therapy; systematic review; advance care planning; randomized controlled trial; shared decision making; practice guideline; therapy; psychosocial care; qualitative research; bereavement; drug administration; special situation for pharmacovigilance; evidence based medicine; methodology
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
van Teunenbroek KC; Kremer LCM; Verhagen AAE; Verheijden JMA; Rippen H; Borggreve BCM; Michiels EMC; Mulder RL
BMC Palliative Care
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/10.1186/s12904-023-01293-3" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01293-3</a>
Guidance on forgoing life-sustaining medical treatment
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</a>