Neonatal Palliative Care-alice's Journey
Palliative Therapy; Bereavement; Bereavement Support; Child; Doctor Patient Relation; Holistic Care; Human; Infant; Infant Newborn; Medical Staff; Memory; Newborn; Newborn Intensive Care; Nursing Staff; Palliative Care; Patient Referral; Pilot Projects; Sibling; Terminal Care
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for their baby's end of life care. Aim: CHAS staff would work jointly with neonatal unit staff to deliver individualised, high quality palliative, end of life and bereavement care for babies', siblings and their families. Approach: When the neonatal team agreed that Alice had palliative care needs, a referral was made to CHAS.AA CHAS Family Support team member and the South East and Tayside (SEAT) Diana Children's Nurse agreed to work with the family and staff. Emotional and family support was provided and end of life wishes and choices were explored. The family were helped to capture memories and plans were made to help the family achieve their wish of taking Alice home to die. Outcomes: When neonatal intensive care was no longer in Alice's best interest, CHAS were able to offer choice and holistic care to the whole family. Alice's wider family were involved in memory making activities which provided them all with precious keepsakes and positive memories. With collaborative working between CHAS, NHS nursing staff, medical staff and the neonatal transport team, the family's wishes for end of life care which included taking Alice home to die were achieved. A Ongoing bereavement support for the family is available from CHAS. Conclusion: Collaborative working provides the opportunity for enhanced end of life care and support. With the support from CHAS, Alice was taken home to die and spent the last hour of her life in the loving care of her family for her first and last time in her own home.
Rodger E; Halkett C; Murdoch E
Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
https://doi.org/10.1177/0269216316631462
Specifying Eligibility Criteria In The Referral Process Reduces Delay In Decision Making And Access To Services In A Children's Hospice
Decision Making; Female; Hospice; Male; Patient Referral; Child; Documentation; Education; Human; Human Experiment; Terminal Care
Aims Children's hospices provide a range of services for children with life limiting (LLC) and life threatening conditions (LTC). Referral previously relied on obtaining supporting views from the child's paediatrician and there was often delay between referral and decision about eligibility being made. This abstract reports the effect of a revised referral process on the time to decision. Method Referral processes and documentation were changed to explicitly link eligibility with the categories of LLC and LTC published by Together for Short Lives (TfSL). This was accompanied by education sessions for professionals. All referrals received during 3 month periods before and after the change were examined and data obtained about the time delay between referral and decision. Results Before Change 52 referrals received, 3 declined. 7 referrals for end of life care, all accepted on the day of referral Overall 14/52 (27%) of decisions were made on day referral received or first reviewed: (Table presented) Mean delay between receipt and decision: 22 days (30 days if further information requested) After Change 61 referrals received, 4 declined 9 referrals for end of life care, all accepted on the day of referral Overall 42/61 (69%) of decisions were made on the day referral received or first reviewed: (Table presented) Mean delay between receipt and decision: 8 days (26 days if further information requested) Conclusion The changes made to the referral process have significantly reduced delays in decision making and access to services. There remains a significant delay in decision making for those in TfSL catgory 4 (long-term conditions with additional complications or vulnerabilities) and more work is needed to better identify those eligible for hospice services.
Hunter M
Archives Of Disease In Childhood
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).
10.1136/archdischild-2017-313087.507
Quality Of Care Collaborative For Paediatric Palliative Care In Australia (quocca)
Australia; Palliative Therapy; Anxiety; Child; Clinical Trial; Diagnosis; Dyspnea; Education; Family Study; Female; Human; Major Clinical Study; Male; Nausea; Nurse; Pain; Patient Referral; Questionnaire; Seizure; Staff; Symptom; Telehealth; Terminal Care
Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within Australia. Objectives: This project aims to improving the quality of care provided to children in close proximity to their home through educational initiatives. This is primarily delivered through "pop-up" education. 'Pop-up' education usually occurs (face-face or telehealth) when a specialist service is building capacity within a child and family's local community and creating a paediatric network. The education provided can be specific to symptom management, end of life care, physical aspects of patient care according to their individualised need and diagnosis and psychosocial needs. The setting is usually in a non-metropolitan location, and the education is provided in a timely manner in relation to the patient's needs. Design/Method: The project is a collaboration of the specialist paediatric palliative care services in each state of Australia. The project is being evaluated using pre and post intervention questionnaires completed by participants in the 'pop-up' educational initiatives. Evaluationwill consider factors such as knowledge, confidence and efficacy around providing care for children with LLC. Results: Forty-six "pop-up" education sessions had been delivered between June 2015 and November 2016. This has included each state and territory of Australia. There have been 507 participants in pop-up education sessions (92 hours of education). Nurses represented the largest group of attendees.Medical and allied health staff also attended demonstrating the need for education to applicable to an inter-disciplinary audience. To date there has been an improvement in the knowledge and confidence of participants to:* manage symptoms (pain, nausea, dyspnoea, seizures, and anxiety), * manage a new referral, * be aware of available resources* be confident in how to help a family prepare for a child's death* confidence in the provision of medications to children's receiving palliative care (including subcutaneous delivery). Conclusion: A collaboration of paediatric palliative care services providing education in a planned and co-ordinated way shows promise in increasing capacity for paediatric palliative care within Australia, and should assist achieving goals of the National Palliative Care Strategy 2010.
Herbert A; Irving H; Pedersen LA; Baggio S; Delaney A; Donovan L; McLarty A; Duc J; Slater P; Johnson S; Trethewie S; Ryan S; Hynson J; Duffield J; Fleming S; Heywood M; Phillips M; Momber S; Burr C
Pediatric Blood And Cancer
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).
10.1002/pbc.26591
'Why Does It Happen Like This?' Consulting With Users and Providers Prior to an Evaluation of Services for Children with Life Limiting Conditions and their Families
Family; Patient Referral; Rehabilitation; Supply And Distribution; Adolescent; Child; Child Health Care; Handicapped Child; Health Service; Health Services Research; Human; Information Processing; Interview
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Journal Of Child Health Care : For Professionals Working With Children In The Hospital And Community
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/136749351351063">10.1177/1367493513510630</a>
Self-assessment for competency and educational needs among pediatric resident on end-of-life care
Education; Resident; Terminal Care; 8002-76-4 (opiate); 8008-60-4 (opiate); 53663-61-9 (opiate); Adjuvant; Aged; Child; Clinical Study; Comfort; Communication Skill; Delirium; Drug Withdrawal; Dyspnea; Feeding; Hospice; Human; Hydration; Opiate; Patient Referral; Symptom; Unclassified Drug; Very Elderly
Purpose: There is lack of standardized resident' curriculum or training for the rapidly emerging field of pediatric end of life care. Goal: To assess pediatric residents' perception of their clinical competence with end of life care and their education needs. To identify an opportunity for improving residents' education and training. Methods: End of life resident assessment survey published by D Weissman was used for evaluation. The survey is divided into 2 domains: clinical competency and education needs. Each domain is subdivided into communication skills and symptom management section. Results: Twenty pediatric residents returned the survey, 8 PGY1, 4 PGY2, and 8 PGY3. PGY1 reported the lowest average score (2.56 of 4), with improving score as we moved to PGY3 (3.1 of 4). Regarding competence with domain of communication skills, they reported significantly lower average score 58% compared to 69% for symptoms management (P < .5). The lowest percentage score among all residents was in discussing home hospice referral 52%, followed by the shift from curative to comfort care and withdrawal of support 54%, then DNR 55%. They felt more competent in giving bad news 72% and best in talking to children in age appropriate manner 91%. This was supported by the high percentage (83%) request of education in those areas. For the symptom management domain, the lowest percentage score among all residents was in management of terminal delirium (40%), followed by terminal dyspnea (48%), using adjuvant analgesics (68%) while they felt comfortable with using opioid analgesic (85%). The highest requested education was for the areas of managing delirium (82%) and dyspnea (81%), followed by hydration and feeding at end of life (68%). Conclusions: There is a major gap in the resident self-assessment in end of life communication skills and symptoms management. This present an improvement opportunity that can translate into better care for children at end of life.
Phung B; Soliman A; Mohamed A
Psycho-oncology
2017
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<a href="http://doi.org/10.1002/pon.4354" target="_blank" rel="noreferrer">10.1002/pon.4354</a>
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Medical Journal Of Malaysia
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://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>
Improving cancer care for children in the developing world: Challenges and strategies
Child Care;childhood Cancer; Accreditation; Antineoplastic Agent; Awareness; Cancer Diagnosis; Cancer Recurrence; Cancer Registry; Cancer Research; Cancer Survival; Cancer Therapy; Clinical Effectiveness; Clinical Trial (topic); Cost Effectiveness Analysis; Country Economic Status; Cultural Factor; Delayed Diagnosis; Diagnostic Error; Family Therapy; Health Care Availability; Health Care Cost; Health Care Personnel; Human; Job Change; Medical Education; Medical Technology; Palliative Therapy; Patient Abandonment; Patient Referral; Poverty; Priority Journal; Program Sustainability; Review; Sepsis; Stratification; Toxicity
Cancer is a global health problem particularly in developing countries where the burden of cancer is ever increasing and claiming the lives of about 100,000 children under the age of 15 years every year. Majority of these occur in the Low and Middle Income Countries (LMICs) where 90% of world children live. Contributing factors to this trend is the reduction of communicable diseases and emergence of new infections, improvement of nutrition and socio-economic conditions, industrialization and urbanization. However, due to its complexity, childhood cancer is given the least priority by the governments' funding. The weak health systems, poor and late access to diagnosis and care, fewer numbers of trained health care professionals and lack of cancer drugs are amongst the many challenges faced. A major challenge for the future is extending the work to reach the many children who die without access to cancer treatment and palliation. Given the inequalities in the survival rates of children with cancer there is therefore an urgent need to close the gap between developed and developing countries. Strategies at individual, institutional, country, regional and global levels must be implemented to improve cancer survival and its effects on human suffering. These strategies are able to strengthen the health systems, improve care and research, increase awareness and coordinate training of professionals thus meeting the challenges. Financial support should be an integral part of the strategy as the cost of drugs is often a substantial barrier to treatment of cancer in poor countries. However, in resource-limited settings without specialized services, much can still be done to support and offer curative and palliative treatment. As have been shown for several cancers, life can be extended with low-tech treatment protocols, which are effective at the same time, decrease sepsis and toxicity. The concept of twinning with privileged nations is paramount to the success of any national cancer program. International partnership offers the opportunity to provide expertise, advice, support and transfer technology from established pediatric oncology unit. Their mission is to build capacity for cancer treatment and research with a vision of developing network of dedicated advocates. The LMIC teams must locally drive projects and volunteers and funding organizations can help to make progress possible. This will require a tremendous effort on the part of both high and low-middle-income countries, if we are all to work together to achieve this goal.
Al Lamki Z
Current Pediatric Reviews
2017
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<a href="http://doi.org/10.2174/1573396312666161230145417" target="_blank" rel="noreferrer">10.2174/1573396312666161230145417</a>
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Journal Of Pain And Symptom Management
2016
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<a href="http://doi.org/10.1016/j.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</a>
What do transplant physicians think about palliative care? A national survey study
medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Blood
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).
Development of symptom assessment service at a children's hospice
hospice; symptom assessment; central nervous system; child; clinical article; conference abstract; disability; female; health care personnel; human; male; medical assessment; medical record review; molecular recognition; nursing; patient referral; retrospective study; staff; telephone
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problematic symptoms in children accessing the hospice service prompting the development a symptom management team led by a paedi-atric consultant and CNS in CPC in spring 2016. All children in the earlier audited were in ACT category 3 and 4 and had diagnoses of severe disability with associated complex medical needs. This report aims to describe the development of the service and provide data from the first year's activity. Methods A record of all referrals to the team has been main-tained since its inception. A retrospective chart review was performed and data was collected and recorded on an excel spreadsheet. Data recorded included description of problematic symptoms, team members involved and intervention required. Results Referrals to the team are accepted from nursing and healthcare staff involved in the care of the child. A care pathway, symptom assessment tools and symptoms management plans have been developed. To date 39 children have received support from the team, 7 of the children have died since referral. The CNS, wider nursing and multi-disciplinary team have supported all children referred. Medical assessment has been provided to 30 children. 25 children were offered a short break in the hospice to allow careful evaluation of symptoms using formal symptom assessment tools. All children were provided with a symptom management plan and on-going support, at home, in the hospice or by telephone, individualised according to identified need. Parental and healthcare professional feedback has been positive. Conclusion This report describes the initial establishment of a symptom assessment service in a children's hospice. The service has been developed in recognition of the high burden of problematic symptoms in children with severe disability and complex medical needs. It is anticipated that the service will continue to develop to meet the increasing needs of children with LLCs.
Balfe JM; Cassidy M; Booth A
Archives of Disease in Childhood
2018
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<a href="http://doi.org/10.1136/archdischild-2018-rcpch.421" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.421</a>
Beyond mortality: Assessing pediatric palliative needs
human; child; female; male; diagnosis; controlled study; palliative therapy; pain; major clinical study; conference abstract; patient referral; neonatal intensive care unit; needs assessment; hematology; oncology; pediatric intensive care unit; resident; general practitioner; hospital patient; questionnaire; morbidity; mortality; bone marrow transplantation; heme; nausea; surgery; tertiary health care
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often inaccurately based on mortality data, specifically the incidence of complex chronic conditions (CCC) at the time of death. These rates based on mortality vary among pediatric patients from 27-60% nationally, with 21% of US pediatric deaths being directly attributable to a CCC. Aim: This study seeks to understand the palliative care needs of an inpatient pediatric population, which we hypothesize will be substantial. Design: A cross-sectional survey was performed using a palliative care referral questionnaire, identifying the following characteristics among pediatric inpatients: 1) serious, life-limiting diagnosis, 2) frequent admissions and escalating care requirements, 3) persistent, poor symptom control, 4) need to clarify the goals of care, or 5) none of the above apply. Setting/Participants: Senior pediatric residents completed the palliative care needs assessment for pediatric patients upon admission to Yale New Haven Children's Hospital in the Fall of 2015. Patients admitted to the pediatric intensive care unit (PICU), hematology, oncology, and bone marrow transplant unit (Heme/Onc/BMT), and to the general medical units under a hospitalist, primary care physician, or subspecialty physician were included. Neonatal intensive care unit and exclusively surgical (non-PICU) patients were excluded. Results: 273 questionnaires were completed over 3 weeks. Nearly 45% of patients (n =122) met at least one palliative care referral criterion. Most patients were identified as having a serious illness (74%), with 70% meeting additional palliative care referral criteria (63/90). In fact, 21% of patients with a serious, life-limiting diagnosis met all four criteria (n = 19). On note, poor symptom control was reported in 55% of patients with positive surveys, comprising 25% of all patients surveyed (67/273), some of whom did not have a serious, life-limiting diagnosis. Data was further evaluated based on location of admission, with 75% of PICU patients (44/59), 56% of Heme/Onc/BMT admissions (25/45), and 31% of general/subspecialty patients meeting at least one palliative care referral criterion. Conclusions: This study identifies a considerable need for palliative care among pediatric inpatients at a tertiary care children's hospital. The results are consistent with national trends among dying patients, but the current study acts to supplement the existing literature by characterizing the need for palliative medicine based on morbidity among living patients. This approach allowed for recognition of the 25% of pediatric inpatients suffering from poor symptom control, such as pain or nausea, who could benefit from pediatric palliative care consultation. Furthermore, these data help to clarify where palliative care services are most urgently needed within the hospital, and can guide the distribution of resources.
Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S
Journal of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Palliative 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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Improving communication within multi-disciplinary teams in children with life limiting conditions
Multidisciplinary team;Child;conference abstract;constitutive androstane receptor;death;endogenous compound;Human;intensivist;nurse;Palliative therapy;patient referral
Aims & Objectives: 60% of children admitted to RMCH PICU might benefit from palliative care (previous case review). Co-coordinating and maintaining continuity of care in these children with multi-speciality input is challenging. Weekly Multi disciplinary Team Meeting (MDT) and follow up was introduced in PICU to improve care in this cohort. Methods Weekly MDT meeting (co-located specialist teams, Intensivists, palliative care consultant, family liaison nurses) were held over a year. Spectrum of Palliative Care Needs was used to 1. Recognise children who might benefit from palliative care 2. Identify need for MDT/Lead consultant/End of life discussions if not already done 3. Update community and specialist teams 4. Discuss/Review advanced care plan (ACP). Results Actions from 32 MDTs were analysed (minimum 2 meetings monthly) in children with palliative care needs (62%). Actions that had to take place within the hospital were completed: Liaising with specialist nurses: 7; Initiating ACP: 4; Identifying ICU lead: 16; Recognising need for end of life discussions, planning for death and place of death: 14; referral to in-house palliative care team: 17; Organising MDT: 11. However only 44% of local teams (outside hospital) were contacted (action that involved teams outside the hospital) and feedback from local teams after discharge was inconsistent. Conclusions Weekly MDT meetings to identify children who might benefit from palliative care are a good start to improving communication and maintaining continuity of care. More initiatives need to be taken by the intensivists in speciality hospitals to improve communication with the wider network of professionals looking after children with life limiting conditions.
Subramanian G;Consterdine K;Kauffmann L
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.0000537863.07170.4e" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537863.07170.4e</a>
A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Schneider N; Steinberg D; Karfunkle B
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Integrating palliative care into the care of paediatric patients at a referral hospital in ghana
pain assessment; oncology ward; education; palliative therapy; communication skill; health care personnel; child health; middle income country; pediatric ward; patient referral; analgesic agent; conference abstract; psychosocial care; human; child; controlled study; pediatric patient; doctor nurse relation; teaching hospital; Ghana
Paintsil V; Ossei-Sekyere B; Osei-Tutu L; Asiamah C
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Challenges of palliative care in children with inborn metabolic diseases
decision making; gastrointestinal tract; palliative therapy; major clinical study; retrospective study; preschool child; cohort analysis; home visit; patient referral; human; article; child; female; male; controlled study; adult; gastrointestinal symptom; attention; young adult; resuscitation; advance care planning; neurologic disease; metabolic disorder
Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team. Results: Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU. Conclusions: About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.Copyright � 2018 The Author(s).
Hoell JI; Warfsmann J; Distelmaier F; Borkhardt A; Janssen G; Kuhlen M
Orphanet Journal of Rare Diseases
2018
<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener">10.1186/s13023-018-0868-5</a>
Characteristics of a Perinatal Palliative Care Program Over 10 years
infant; hospice; obstetrician; palliative therapy; major clinical study; retrospective study; comfort; medical record; patient referral; neonatal intensive care unit; neonatologist; conference abstract; human; child; female; male; controlled study; diagnosis; resuscitation; positive end expiratory pressure; genetics
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often experience emotional isolation following their child's loss. This study explores the characteristics of babies and families referred for perinatal hospice, and provides descriptive analysis of diagnosis, interventions and outcomes.
Doherty M; Dumond LG; Williams R; Stoppels N
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.360</a>
End-of-life care in children with hematologic malignancies
home care; adolescent; blood transfusion; retrospective study; 52-26-6 (morphine); 57-27-2 (morphine); prescription; cohort analysis; fatigue; morphine/dt [Drug Therapy]; patient referral; treatment duration; human; article; child; female; male; controlled study; adult; terminal care; clinical article; child care; palliative therapy; intensive care unit; walking difficulty; hematologic malignancy/dt [Drug Therapy]; hematologic malignancy/th [Therapy]; hematologic malignancy/dt [Drug Therapy]; hospital mortality; mucosa inflammation; pallor; petechia; somnolence
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.
Hoell JI; Warfsmann J; Balzer S; Borkhardt A; Janssen G; Kuhlen M
Oncotarget
2017
<a href="http://doi.org/%2010.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.21188</a>
Palliative care referral patterns for children with cancer: A three-year retrospective study
quality of life; infant; hospice; oncology; Korea; terminal care; lymphoma; palliative therapy; major clinical study; central nervous system; cancer patient; hospital patient; school child; pediatric ward; solid malignant neoplasm; time of death; patient referral; conference abstract; statistical analysis; human; child; female; male; diagnosis; resuscitation; emergency ward; intensive care unit; retrospective study; leukemia; outpatient department
Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer patient referral patterns to a new PPC team at a university-affiliated children's hospital in Korea. Design/Methods: We examined our PPC database and performed descriptive statistical analysis of patient referral from hemato-oncology Department. Results: From April 2015 to March 2018, 142 patients were referred to PPC team from hemato-oncology Department. Ten patients (7.0%) were not seen in consultation by our team because of refusal of palliative care, referral to another hospital, or immediate death before consultation. Of 132 patients, eight patients were under 1 year-old, 53 were ages 1 to 9 years, 54 were ages 10-18 years, and 17 were older than 18. Most of our patients (72.0%) lived in distant region from our hospital and 76 patients (58%) were male. Diagnoses included solid tumor (35.6%), primary CNS (32.6%) and leukemia/lymphoma (29.5%). Significant number of patients were referred while in the Pediatric ward (76.5%), and 18.2% and 5.3% were from outpatient clinic and intensive care unit, respectively. Lastly, 84 patients (63.6%) died during the observation period, and of those, 61 (72.6%) died in an inpatient setting, 13 (15.5%) died at home, 9 (10.7%) died at hospice facilities, and one (1.2%) died in the emergency Department. At the time of death, most patients (95.2%) did not receive cardiopulmonary resuscitation (CPR) according to the end-of-life care plan, but 3 patients received CPR. The median age at death was 11.2 years. Conclusions: We report the palliative care referral patterns of Pediatric cancer patients in Korean children's hospital. To improve the quality of life of children with cancer, their palliative care needs should be identified and appropriate services be provided.
Kim MS; Kim CH; Moon YJ; Song IG; Shin HY
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</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>
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 by the American Academy of Pediatrics.
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Pediatrics
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/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
BMJ Paediatrics Open
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/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Increasing accurate palliative care consultation in the NICU
caregiver; child; conference abstract; controlled study; human; International Classification of Diseases; length of stay; mortality risk; newborn; nurse practitioner; outcome assessment; palliative therapy; patient referral; satisfaction; staff training; total quality management
Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this population. We desired that those at highest risk of extended LOS with associated mortality receive early PPC consultation. Our multidisciplinary quality improvement project aimed to increase PPC consultation for NICU patients with a life-limiting anomaly identified by trigger-list tool to 80% within one year.
Humphrey L; Schlegel A
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).
End-of-life care among adolescent and young adult patients with cancer living in poverty
adolescent; adult; article; cancer patient; cancer therapy; controlled study; female; hospice; hospital patient; human; insurance; lowest income group; male; medical record; multicenter study; palliative therapy; patient referral; poverty; retrospective study; statistical significance; terminal care; young adult
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Roeland E J; Lindley L C; Gilbertson-White S; Saeidzadeh S; Currie E R; Friedman S; Bakitas M; Mack J W
Cancer
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/10.1002/cncr.32609" target="_blank" rel="noreferrer noopener">10.1002/cncr.32609</a>
Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids
cancer patient; cancer prognosis; catchment; child; childhood cancer; conference abstract; controlled study; counselor; distress syndrome; female; Hospice Care; hospital personnel; human; magnet; major clinical study; male; nurse practitioner; outpatient; palliative therapy; patient referral; pediatric hospital; pediatric patient; prognosis; program impact; quality of life; registered nurse; social worker
Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their families; however, hospice services only reach about 10% of eligible children who die in the United States, with the majority of pediatric patients receiving care through adult hospice organizations. Program Design: The Quality of Life for All (QoLA) Kids program, established in August 2012, is an outpatient, community-based pediatric palliative care and hospice program that strives to enhance quality of life for pediatric patients and families, provide care coordination across multiple settings, mitigate physical, psychosocial, and spiritual distress, ensure a comfortable and peaceful death in the patient's preferred setting, and support bereaved family members and hospital staff. The program represents a partnership between two MAGNET-certified pediatric hospitals and a local home health and hospice agency. QoLA Kids comprises an extensive interdisciplinary team including physicians, nurse practitioners, registered nurses, medical social workers, spiritual counselors, child life specialists, and administrative support staff. Patients are enrolled on either the palliative care or hospice arm of the program, with flexibility to transition easily between arms as clinical status and goals of care evolve. Eligibility for the hospice arm necessitates an expected prognosis of 6 months or less left to live. Program Impact: Since programmatic inception nearly 6 years ago, QoLA Kids has served a total of 330 children and families in the local catchment area. Approximately 41% of patients (n=135) were enrolled on the palliative arm, with the remaining 59% enrolled on hospice (n=195). Between 2012-2017, the mean number of days from enrollment to death was 142 days for patients on the hospice arm (n=76) and 288 for patients on the palliative care arm (n=5). The percentage of patients with malignancies who received palliative care prior to death increased from 71% to 97% within 2 years following program implementation. Conclusions/Future Directions: QoLA Kids is an innovative program that facilitates the provision of palliative care and hospice services and resources to children with serious illness and their families in the community. Through this program, children and families have been able to access palliative care services in their community well before the end of life. After program initiation, an increase in the number of palliative care consults was also seen within the pediatric oncology patient population suggesting that the program may provide an incentive for referral to palliative care. Further investigation is needed to identify optimal metrics for ascertaining the physical and psychosocial benefits from this innovative program.
Kiefer A C; Kaye E C; Blazin L J; Baker J N
Pediatrics
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).
Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care (FR420D)
child; cohort analysis; conference abstract; controlled study; demography; female; hospice; human; insurance; major clinical study; male; neonatal intensive care unit; nervous system; palliative therapy; patient referral; pediatric hospital; preschool child; retrospective study; speech; total quality management
Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs, factors associated with referral, and describe how these findings can be used to improve access to appropriate use of community-based care. Original Research Background: While access to community-based hospice and palliative care programs has increased for seriously ill children, we know little on a population level about which children are referred and enrolled into these programs. Research Objectives: To describe referrals and enrollment for community-based care from a hospital-based pediatric palliative care (PPC) service, and to identify factors associated with referral.
Lotstein D; Caliboso M; Lindley L; Wolfe J
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.2019.12.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.134</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).
Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
child; human; palliative therapy; controlled study; article; pediatrics; childhood cancer; patient referral; Uncertainty; qualitative analysis; cancer patient; cancer prognosis; oncologist; pediatric patient; semi structured interview; organization; care behavior; Advanced cancer
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Hill D L; Walter J K; Szymczak J E; DiDomenico C; Parikh S; Feudtner C
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.2019.08.010" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.010</a>
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Journal of 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/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>
Palliative Care Services for Children with Life-Limiting Conditions
Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Irish Journal of Medical Science
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/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare Utilization, this study examined predisposing/enabling/need factors associated with hospice referral/enrollment among AYA patients diagnosed with cancer. Method(s): Data were drawn from medical records of AYA patients who died of cancer between January 2013 and December 2016 at three academic sites in the United States and were 15-39 years old at the time of death. Logistic regression was conducted (N=224). Result(s): Findings showed that hospice referral was strongly associated with hospice enrollment (odds ratio [OR]=69.68, p<0.0001). White patients were more likely to be referred to hospice care than non-White patients; the effect was, however, significant only among patients with private insurance (OR=3.44, p=0.040). Patients with public insurance were more likely to be referred to hospice than those with private insurance; the effect was, however, significant only among non-White patients (OR=5.66, p=0.005). Among those not receiving cancer treatment in the last month of life (LML), patients with hematologic malignancies were less likely to be referred to hospice than those with solid tumors (OR=0.19). Among patients with solid tumors, receiving cancer treatment in the LML lowered the odds of hospice referral (OR=0.50, p=0.043). Conclusion(s): Further research efforts are needed to investigate the role of race, insurance, cancer types, and treatments in hospice use among bigger samples of AYA patients diagnosed with cancer.
Noh H; Bui C; Mack JW
Journal of adolescent and young adult oncology
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/10.1089/jayao.2021.0225" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0225</a>
Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?
Hospice Care; Awareness; Child; Child; child death; clinical article; conference abstract; data analysis; England; Female; Hospice Care; Hospice; hospital admission; hospital mortality; Human; information center; Male; medical history; Only Child; Palliative Therapy; patient referral; prevalence; Retrospective Study; social care; time of death
Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at their time of death (Williams & Horsley, 2015). A recent survey conducted by Noah's Ark of North London Paediatric teams, showed that 90% of those surveyed had looked after patients with LLC and not referred them on to their local hospice (Opstad, 2021). Epidemiological studies have sought to estimate the prevalence within local populations (Williams & Horsley, 2015) of children with LLC, looking at NHS digital data (Fraser, Gibson- Smith, Jarvis, et al., 2020. Palliat Med.) from hospital admissions (Health & Social Care Information Centre, 2015). These estimations, however, come with limitations. Aims 1. Identify the causes and locations of child deaths in the local population. 2. Determine which children would have potentially met criteria for hospice referral. Design Records of local death data were analysed, with specific reference to cause and location of death and past medical history which would have made them eligible for hospice care. Results Over the six-year period analysed there were an average of 26 deaths per year from all causes. Between 5 and 18 children were found to meet hospice referral criteria each year (an average of 10 per year). 139 of the 154 total deaths occurred in hospital (90%) from all causes, but 43 (28%) of those deaths were in children with LLC and were expected. Just 19 children (12%) had a planned death at home or in a hospice setting over the sixyear period analysed. Conclusions This data supports the hypothesis from epidemiological studies that there is unmet need within the local population. Some families may choose for their child to die in a hospital, and it is difficult to scrutinise this element of choice in retrospective data analysis. However, there is clearly need for greater awareness amongst paediatric teams and families of the services offered by local hospices.
Opstad H
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.80" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.80</a>
Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Journal of Pediatric Intensive 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/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</a>
The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</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>
Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service
Child; Palliative Care; child; article; female; human; male; preschool child; palliative therapy; hospice; clinical article; intensive care; school child; documentation; Only Child; ethics; patient referral; adolescent; infant; stomach tube; deterioration; retrospective study; drug combination; conversation; nomenclature; neurologic disease; feeding difficulty; parenteral nutrition; case study; enteric feeding; neurodisability; digestive system function disorder
BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. <br/>OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. <br/>RESULT(S): Mean age at death was 10.3 years (range: 5 - 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal "failure" or "dysfunction" were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. <br/>CONCLUSION(S): 'Intractable feeding intolerance' describes a clinical crossroads in a child's life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.
Katz NT; Cooper MS; Kularatne A; Prebble A; McGrath KH; McCallum Z; Antolovich G; Sutherland I; Sacks BH
American Journal of Hospice and 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="https://journals.sagepub.com/doi/10.1177/10499091231169497">10.1177/10499091231169497</a>
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Nursing in Critical 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/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Andes Pediatrica
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/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</a>
An Audit Analysing The Standard Of Patient Care And Service Provision In Sppc At A Tertiary Hospital And Hospice
child; female; human; male; palliative therapy; clinical article; Hospices; patient referral; conference abstract; place of death; hospice care; patient coding; staff training; tertiary care center; sample size; manager; patient care
Objectives To identify gaps in SPPC provision at a patient and service level at the tertiary centre, local children's hospice and the region, compared to national frameworks and standards. Specialist paediatric palliative care (SPPC) aims to improve quality of life for children with life-limiting and life-threatening conditions. SPPC services were introduced at a tertiary hospital in 2012 and are in their infancy. As an underdeveloped speciality, there are gaps in provision across the region and little research has been carried out to identify them. Methods The last 15 children and young people (CYP) who died and were referred to tertiary SPPC services from the region were identified. Patient data were collected using hospital and hospice care databases and discussions with staff involved in patient care. Service provision data were collected by discussions with service managers. Results Only 80% of children and young people (CYP) had an Advance Care Plan (ACP). Of the CYP who required rapid transfer, none had a documented plan in an ACP. Preferred place of death was achieved in 67% of CYP. The average time from referral to SPPC to death was 38 days. Of the staff training standards, 80% were met at the tertiary centre and 91% at children's hospice. 73% of protocol standards were met by tertiary centre and 91% by the children's hospice. 56% of provision standards were met by tertiary centre and 69% by the children's hospice. 50% of the staffing standards were met at both services. Neither service met any of the data management and service improvement standards. Conclusion These data showed no major gaps in patient care standards, although improvement is needed to ensure all CYP have ACPs. Major gaps were identified in service improvement and data management in comparison to national standards. Providing a 24-hour SPPC service and improving data collection could address this. A limitation of this audit is the small sample size.
Durrant E; Warlow T; Coulson-Smith P; Renton K
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.52" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.52</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>