End of Life Care for Infants, Children and Young People with Life Limiting Conditions: Summary of Nice Guidance
Adolescent; Advance Care Planning; Child; Humans; Infant; Patient Care Team; Patient Participation; Practice Guidelines As Topic; State Medicine; Terminal Care; United Kingdom
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a life limiting condition and entails planning for the future. Sometimes it may begin before the child’s birth. It is part of the overall care of the child or young person and runs in parallel with other active treatments for the underlying condition itself.1 Finally, it includes those aspects related to the care of the dying.
This guideline was commissioned with the aim to standardise end of life care for infants, children, and young people living with a life limiting condition, and thus promote equity and consistency. Important themes are to involve children and young people and their parents or carers in decisions about their care, facilitate their care in their preferred location (most likely home), and plan for day and night care.
This article summarises the most recent guidance from the recent National Institute for Health and Care Excellence (NICE) on the planning and management of end of life care in infants, children, and young people.2 For a visual summary, please see infographic.
Villanueva G; Murphy; MS; Vickers D; Harrop E; Dworzynski K
British Medical Journal
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1136/bmj.i6385">10.1136/bmj.i6385</a>
Neonatal Deaths: Prospective Exploration Of The Causes And Process Of End-of- Life Decisions.
Asphyxia Neonatorum/mortality; Canada/epidemiology; Cause Of Death; Chromosome Aberrations; Clinical Decision-making; Congenital Abnormalities/mortality; Humans; Hypoxia-ischemia Brain/mortality; Infant Extremely Premature; Infant Newborn; Infant Premature; Intensive Care Units Neonatal; Intracranial Hemorrhages/mortality; Lung Diseases/mortality; Patient Care Team; Practice Patterns Physicians'/statistics & Numerical Data; Prospective Studies; Term Birth; Withholding Treatment/statistics & Numerical Data
Ethics; Mortality; Neonatology; Palliative Care
OBJECTIVE:
To determine the causes and process of death in neonates in Canada.
DESIGN:
Prospective observational study.
SETTING:
Nineteen tertiary level neonatal units in Canada.
PARTICIPANTS:
942 neonatal deaths (215 full-term and 727 preterm).
EXPOSURE AND OUTCOME:
Explored the causes and process of death using data on: (1) the rates of withdrawal of life-sustaining treatment (WLST); (2) the reasons for raising the issue of WLST; (3) the extent of consensus with parents; (4) the consensual decision-making process both with parents and the multidisciplinary team; (5) the elements of WLST; and (6) the age at death and time between WLST and actual death.
RESULTS:
The main reasons for deaths in preterm infants were extreme immaturity, intraventricular haemorrhage and pulmonary causes; in full-term infants asphyxia, chromosomal anomalies and syndromic malformations. In 84% of deaths there was discussion regarding WLST. WLST was agreed to by parents with relative ease in the majority of cases. Physicians mainly offered WLST for the purpose of avoiding pain and suffering in imminent death or survival with a predicted poor quality of life. Consensus with multidisciplinary team members was relatively easily obtained. There was marked variation between centres in offering WLST for severe neurological injury in preterm (10%-86%) and severe hypoxic-ischaemic encephalopathy in full-term infants (5%-100%).
CONCLUSIONS AND RELEVANCE:
In Canada, the majority of physicians offered WLST to avoid pain and suffering or survival with a poor quality of life. Variation between units in offering WLST for similar diagnoses requires further exploration.
Hellmann J; Knighton R; Lee SK; Shah P; Andrews W; Payot A
Archives Of Disease In Childhood
2016
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DOI: 10.1136/archdischild-2015-308425
What Are Palliative Care Physicians For Adults Taught On Palliative Care For Children? Paediatric Aspects In Palliative Care Curricula For Adults.
Adult; Child; Curriculum; Education Medical Continuing; Germany; Humans; Neoplasms/psychology; Neoplasms/therapy; Palliative Care; Patient Care Team; Pediatrics/education
BACKGROUND:
Children suffering from life limiting diseases are frequently cared for by adult palliative care teams due to missing paediatric structures in that field. However it is questionable whether palliative care curricula for physicians comprehensively cover issues of paediatric palliative care (PaedPC).
AIM:
To identify all PaedPC issues included in inter-professional or medical palliative care curricula (PCC) and to evaluate the breadth and quality of PaedPC issues covered in these curricula.
DESIGN:
Inter-professional or medical palliative care curricula (PCC) were identified by an extensive literature review in German and English using the search-engines Google as well as Medline, MedPilot and Pubmed.
RESULTS:
Worldwide 30 PCC were identified, with only 15 curricula mentioning any PaedPC issues. Of those 15 curricula, up to 22 PaedPC topics were highlighted in each. In 10 or more PaedPC following topics were highlighted: grief and bereavement in family, parents and siblings; communication with children; paediatric malignancies; pain management in PPC and pharmacology. In the majority of PCC curricula where PaedPC issues were identified the following topics were mentioned- grief and bereavement in the family, parents and siblings, communication with children, paediatric malignancies, paediatric pain management and pharmacology.
CONCLUSIONS:
The variability of inclusion of PaedPC issues and the lack of depth and standardisation of knowledge, skills and attitudes in PaedPC issues included in PCC curricula is not sufficient to guide adult palliative care physicians in their clinical work with children suffering from life limiting diseases.
Schiessl C; Gottschling S; Gronwald BM
Klinische Pädiatrie
2016
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Evidence For Implementation Strategies To Provide Palliative Care In The Neonatal Intensive Care Unit.
Attitude Of Health Personnel; Clinical Protocols; Evidence-based Practice; Hospice And Palliative Care Nursing/education; Humans; Infant Newborn; Intensive Care Units Neonatal; Neonatal Nursing/education; Neonatal Nursing/methods; Palliative Care/methods; Patient Care Team
BACKGROUND:
Palliative care is a holistic framework that is designed to improve quality of life by identifying and treating distressing symptoms of life-threatening or complex conditions. Neonatal palliative care (NPC) has potential benefits for parents, staff, and patients, yet evidence suggests that implementation and utilization of organized NPC services are low.
PURPOSE:
The purpose of this study is to answer the clinical question: In neonatal intensive care, what evidence can be used to guide implementation of palliative care protocols?
SEARCH STRATEGY:
A literature search was conducted using CINAHL (Cumulative Index of Nursing and Allied Health Literature), PubMed, and the Cochrane Library databases. Publications with a focus on neonates, neonatal intensive care unit, and implementation or evaluation of a palliative care protocol, team, or educational intervention were retained.
RESULTS:
The search yielded 17 articles that fit with the following themes: NPC protocols or teams (n = 8), healthcare team needs (n = 3), and barriers to implementation (n = 6). Approaches to NPC implementation were varied, and outcome data were inconsistently reported. Healthcare team members cited a need for education and consistent, ethical delivery of NPC. Common barriers were identified as lack of NPC education, poor communication, and lack of adequate resources such as staff and space.
IMPLICATIONS FOR PRACTICE AND RESEARCH:
Successful team approaches included standardized order sets to initiate NPC, NPC education for staff, and references to NPC guidelines or protocols. Barriers such as lack of interdisciplinary cooperation, lack of appropriate physical space, and lack of education should be addressed during program development. Further research priorities for NPC include seeking parent perceptions, shifting focus from mostly end-of-life to an integrated model, and collecting outcome data with rigor and consistency.
Quinn M; Gephart S
Advances In Neonatal Care
2016
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DOI: 10.1097/ANC.0000000000000354
A Study Into The Educational Needs Of Children's Hospice Doctors: A Descriptive Quantitative And Qualitative Survey
Clinical Competence/st [standards]; Education Medical Continuing/og [organization & Administration]; Inservice Training/og [organization & Administration]; Palliative Care/st [standards]; Pediatrics/ed [education]; Child; Communication; England; Hospice Care; Hospices; Humans; Only Child; Palliative Care; Patient Care Team; Surveys And Questionnaires
OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice doctors (n =55) in England were approached, and 35 (65%) consented. INTERVENTIONS: A questionnaire designed to survey doctors' self-assessed educational competencies (confidence and perceived need for training) in subject areas derived from analysis of existing children's palliative care literature. Educational diaries used prospectively in practice to identify areas of unmet educational need. MAIN OUTCOME MEASURES: Self-perceived confidence and usefulness scores for each subject area. An analysis of support, education and training needs deriving from educational diaries and one-to-one interviews. RESULTS: Confidence and usefulness scores suggest that respondents would most value support, education and training in the management of emergencies, symptoms and physical disease. Educational diary analysis revealed that respondents would most value support, education and training in communication skills, team-working skills, and personal coping strategies. CONCLUSIONS: There is a disparity between educational needs as derived from self-rated competencies and from educational diary keeping; suggesting that children's hospice doctors may not be fully aware of their own educational, support and training needs. Self-rated competencies emphasise the value of education in craft or clinical skills; whereas personal diary keeping emphasises the value of education in intrapersonal and interpersonal skills such as communication, team-working and personal coping skills. The current curricula and educational resources need to acknowledge that interpersonal and intrapersonal competencies are as important as clinical competencies. While the study looks particularly at the educational needs of children's hospice doctors, readers may feel that the findings are of relevance to all specialities and disciplines.
Amery J; Lapwood S
Palliative Medicine
2004
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10.1191/0269216304pm902oa
Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.
Female; Humans; Male; Family; Withholding Treatment; Aged; Middle Aged; Interdisciplinary Communication; Severity of Illness Index; patient care team; decision making; retrospective studies; advance care planning; DNAR; quality of life; DNAR Outcomes; referral and consultation; Advance Directives; Palliative Care/mt [Methods]; Heart Failure/th [Therapy]; Heart-Assist Devices; Left/th [Therapy]; Right/th [Therapy]; Ventricular Dysfunction
OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010., RESULTS: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists., CONCLUSION: Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.
Swetz K M; Freeman MR; AbouEzzeddine OF; Carter Kari A; Boilson BA; Ottenberg AL; Park Soon J; Mueller PS
Mayo Clinic Proceedings
2011
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Journal Article
<a href="http://doi.org/10.4065/mcp.2010.0747" target="_blank" rel="noreferrer">10.4065/mcp.2010.0747</a>
Treating a child with a life-threatening condition
Child; Humans; Male; Terminal Care; Physician's Role; Fatal Outcome; Leukemia; Preschool; patient care team; bereavement; infant; hospice care; B-Cell/therapy; MELAS Syndrome/therapy; Palliative Care/ethics/legislation & jurisprudence/organization & administration
Klein SM; Saroyan JM
Pediatric Annals
2011
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Journal Article
<a href="http://doi.org/10.3928/00904481-20110412-07" target="_blank" rel="noreferrer">10.3928/00904481-20110412-07</a>
Palliative care and pediatric surgery
Child; Humans; Palliative Care; Terminal Care; Physician-Patient Relations; Critical Illness; Prognosis; Professional-Family Relations; Tracheostomy; Resuscitation Orders; Gastrostomy; quality of life; patient care team; Intratracheal; Intubation; Pleurodesis
Pediatric surgeons can play an important role in offering procedures that may improve the quality of life for terminally ill children. As with all palliative interventions, surgical therapies should be evaluated in the context of explicitly defined treatment goals while weighing the risks and benefits of procedures in the context of a shortened life span. It is essential that pediatric surgeons become active members in the multidisciplinary team that provides palliative care.
Shelton J; Jackson GP
The Surgical Clinics Of North America
2011
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Journal Article
<a href="http://doi.org/10.1016/j.suc.2011.01.004" target="_blank" rel="noreferrer">10.1016/j.suc.2011.01.004</a>
Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review
Patient Satisfaction; Psychology; quality of life; Non-U.S. Gov't; Human; Support; Developed Countries; Social; patient care team; Neoplasms/therapy; Outcome Assessment (Health Care); Palliative Care/economics/organization & administration/utilization
The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research. The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design. A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life. Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team. It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.
1998
Hearn J; Higginson IJ
Palliative Medicine
1998
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Journal Article
Challenges in identifying children for palliative care
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
1996
Davies B; Steele R
Journal Of Palliative Care
1996
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Journal Article
Communication with parents of children with cancer
Child; Female; Male; Grief; Adult; Parent-Child Relations; Follow-Up Studies; Defense Mechanisms; adolescent; Preschool; Adaptation; Psychological; patient care team; infant; Human; Professional-Family Relations; Neoplasms/psychology; Truth Disclosure; Interview; Communication; Leukemia/psychology; Parents/education/psychology
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire, interviewed the parents about what and how they had been told, and assessed the stage of parental coping reached at that time. All patients were treated at a regional paediatric oncology centre (RHSCE) and the interviews were conducted preferably in the family home (61%), or in a 'quiet' hospital room (39%). Twenty-five, unselected, consecutive patients with cancer and leukaemia diagnosed and treated at the RHSCE and their families were recruited into the study (1988-1989). One child died during the first three months and one single parent family refused co-operation. Eighteen of the 23 interviews conducted were with both parents, and five were with single parents (all maternal). All 23 sets of parents admitted deep shock and devastation on hearing the initial diagnosis, with 12 sets feeling that they had taken in little or none of the information given. A long interview was conducted a few days after the initial talk with the consultant. The parents of four children (17%) denied that the long interview had occurred whilst 10/19 who remembered it expressed specific lack of understanding of some or all details. All families remembered a large number (10-20) of subsequent talks with a wide range of staff, but 14/23 felt that some of the information was still confusing or conflicting, and 9/14 did not want to ask for further clarification, principally because they did not want to hear more bad news. The majority felt the child understood little of what was going on. At the study interview, most parents were assessed as still being very anxious about their child's illness, whilst two couples, one single mother and one father, were content with what and how they had been told about their child's illness and were in a state of emotional homeostasis. It is concluded that communication of bad news is a two-way process requiring skilled medical staff, but also a receptive audience. The emotional state of the parent determines his or her ability to hear and comprehend the information given. The results imply that repetition and clarification at consultation interviews is required until parents are emotionally able to hear, accept and comprehend complex news. Written material, taped interviews and simple videos can assist in this process.
1994
Eden OB; Black I; MacKinlay GA; Emery AE
Palliative Medicine
1994
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Journal Article
Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.
Humans; Male; United States; Consensus; Treatment Refusal; Aged; Intention; Fluid Therapy; Morals; Food; Suicide; Non-U.S. Gov't; Professional Patient Relationship; Research Support; patient care team; Death and Euthanasia; Psychological; Stress; Ethics; Assisted; Hypnotics and Sedatives/administration & dosage; Double Effect; Palliative Care/legislation & jurisprudence/methods
When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.
2000
Quill TE; Byock IR; Panel ACP-ASIMEnd-of-Life Care Consensus
Annals Of Internal Medicine
2000
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">10.7326/0003-4819-132-5-200003070-00012</a>
Building measurement and data collection into medical practice
Humans; Data Collection; Physician's Role; Clinical Protocols; Outcome and Process Assessment (Health Care); patient care team; RDF Project; Diabetes Mellitus; Cost Control; Practice Management; Medical/standards; Blood Glucose Self-Monitoring; Type 2/therapy; Urinary Tract Infections/therapy
Clinicians can use data to improve daily clinical practice. This paper offers eight principles for using data to support improvement in busy clinical settings: 1) seek usefulness, not perfection, in the measurement; 2) use a balanced set of process, outcome, and cost measures; 3) keep measurement simple (think big, but start small); 4) use qualitative and quantitative data; 5) write down the operational definitions of measures; 6) measure small, representative samples; 7) build measurement into daily work; and 8) develop a measurement team. The following approaches to using data for improvement are recommended. First, begin with curiosity about outcomes or a need to improve results. Second, try to avoid knee-jerk, obstructive criticism of proposed measurements. Instead, propose solutions that are practical, goal-oriented, and good enough to start with. Third, gather baseline data on a small sample and check the findings. Fourth, try to change and improve the delivery process while gathering data. Fifth, plot results over time and analyze them by using a control chart or other graphical method. Sixth, refine your understanding of variation in processes and outcomes by dividing patients into clinically homogeneous subgroups (stratification) and analyzing the results separately for each subgroup. Finally, make further changes while measuring key outcomes over time. Measurement and improvement are intertwined; it is impossible to make improvements without measurement. Measuring and learning from each patient and using the information gleaned to test improvements can become part of daily medical practice in local settings.
1998
Nelson EC; Splaine ME; Batalden PB; Plume SK
Annals Of Internal Medicine
1998
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Journal Article
<a href="http://doi.org/10.7326/0003-4819-128-6-199803150-00007" target="_blank" rel="noreferrer">10.7326/0003-4819-128-6-199803150-00007</a>
Children with cancer talk about their own death with their families
Child; Female; Humans; Male; Parent-Child Relations; Attitude of Health Personnel; Questionnaires; Attitude to Death; Communication; Truth Disclosure; Child Psychology; Self Disclosure; Sibling Relations; Family Health; Preschool; Non-U.S. Gov't; Research Support; patient care team; Neoplasms/psychology
In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the oncology department about their attitude to an open approach in talking about death and their views of how often it occurred. Analysis of 31 children over 3 years old and their families showed that the approach of death was mutually acknowledged by six families (19%); seven (23%) children were felt to know but chose not to discuss death; in two (6%) families, discussion with the child was blocked; nine (29%) children died unaware, and in seven (23%) families, what the children felt was unknown. Staff members (22) all advocated an open, honest approach in talking to children about their death but varied widely and overestimated how often they believed discussion of the child's impending death occurred (range, 10%-80%; median, 45%).
1993
Goldman A; Christie D
Pediatric Hematology And Oncology
1993
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Journal Article
<a href="http://doi.org/10.3109/08880019309029488" target="_blank" rel="noreferrer">10.3109/08880019309029488</a>
Utilization review of hospice: an interdisciplinary team approach
Interdisciplinary Communication; Interprofessional Relations; Hospices; Utilization Review; patient care team; Nursing; Progressive Patient Care; Team
1991
Gill MA
American Journal Of Hospice & Palliative Medicine
1991
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Journal Article
<a href="http://doi.org/10.1177/104990919100800104" target="_blank" rel="noreferrer">10.1177/104990919100800104</a>
Chronic musculoskeletal and other idiopathic pain syndromes
Child; Female; Humans; Male; Attitude to Health; Parent-Child Relations; Risk Factors; adolescent; Syndrome; patient care team; Chronic disease; Cognitive Therapy; Musculoskeletal Diseases/complications/psychology/therapy; Pain/etiology/psychology/therapy
2001
Malleson PN; Connell H; Bennett SM; Eccleston C
Archives Of Disease In Childhood
2001
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Journal Article
<a href="http://doi.org/10.1136/adc.84.3.189" target="_blank" rel="noreferrer">10.1136/adc.84.3.189</a>
Cornerstone care for families of children with life-threatening illness.
Child; Humans; Grief; Professional-Family Relations; Longitudinal Studies; Sick Role; Continuity of Patient Care; Hospices; Adaptation; Psychological; patient care team; Family/psychology; social support; Terminal Care/psychology; Home Nursing/psychology; Brain Diseases/psychology/therapy; Neuromuscular Diseases/psychology/therapy; Public Assistance
Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often distressing job of obtaining that help. They were asked whether they regarded anyone as their co-ordinating cornerstone carer and which qualities of care they most valued. Over three-quarters identified one or more professionals as their cornerstone carer, the most common being paediatricians, domiciliary paediatric nurses and social workers. Nearly a quarter of the families reported not having a cornerstone carer. The ingredients of care especially valued by the parents are described. Families may be better helped and services more rationally used where a cornerstone carer gives support and helps to co-ordinate care in a way that leaves families still feeling in control of their own lives. The issue is raised as to whether patient need or cost/service limitation will be the primary determinant of the way this care is delivered in Britain.
1991
Woolley H; Stein A; Forrest GC; Baum JD
Developmental Medicine And Child Neurology
1991
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Journal Article
<a href="http://doi.org/10.1111/j.1469-8749.1991.tb05110.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.1991.tb05110.x</a>
Forgoing life-sustaining treatments: how the decision is made in French pediatric intensive care units
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Prospective Studies; Professional-Family Relations; Life Support Care; Pediatric; adolescent; Preschool; Empirical Approach; Professional Patient Relationship; patient care team; Death and Euthanasia; decision making; infant; Practice Guidelines; Newborn; ICU Decision Making; France
OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed a prospective study to help the experts. This study documents how children die in French PICUs and how the decision to limit life support is made. DESIGN: A multicenter, prospective, cross-sectional study. SETTING: Thirty-three multidisciplinary PICUs in university hospitals. PATIENTS: All consecutive deaths were recorded over a 4-month period. Children who died after a medical decision to forgo life-sustaining treatment were included in group 1 and children who died from other causes were included in group 1. MAIN RESULTS: A total of 264 consecutive children died, 40.1% from group 1 and 59.8% from group 2. Patients of both groups were primarily admitted for acute respiratory failure (group 1, 50.8%; group 2, 52.6%). Neurologic emergencies were more frequent in patients in group 1, whereas patients with cardiovascular failures were more frequent in group 2. When there was a question of whether to pursue life-sustaining treatment, the parents' opinions were recorded in 72.1% of cases. A specific meeting was called to make this decision in 80.1% of cases. This meeting involved the medical staff in all cases. Parents were aware of the meeting in 10.7% of cases. The conclusion of the meeting was reported to the parents in 18.7% of cases and documented in the patient's medical record in 16% of cases. Experts who were not members of the PICU staff were invited to give their opinion in 62.2% of cases. CONCLUSIONS: The decision to forgo life-sustaining treatment is frequently made for children dying in French PICUs. Guidelines must be available to help the medical staff reach this decision. Knowledge of the decision-making process in French PICUs provides the experts with information needed to elaborate such recommendations.
2001
Devictor DJ; Nguyen DT; Groupe Francophone de Reanimationet d'Urgences Pediatriques
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200107000-00010" target="_blank" rel="noreferrer">10.1097/00003246-200107000-00010</a>
Attitudes toward limitation of support in a pediatric intensive care unit
Child; Female; Humans; Male; Intensive Care Units; Medical Futility; Prospective Studies; Euthanasia; Ethics; Medical; quality of life; Pediatric; patient care team; Caregivers/psychology; ICU Decision Making; Resuscitation Orders/psychology; Passive/psychology; Life Support Care/psychology
OBJECTIVE: To prospectively determine opinions of members of a pediatric intensive care unit (PICU) team regarding the appropriateness of aggressive care. The types of support that caregivers sought to limit and their reasons for wanting these limits were collected over time. DESIGN: Prospective survey of caregiver opinions. SETTING: PICU in an academic tertiary care children's hospital. SUBJECTS: A total of 68 intensive care nurses, 11 physicians attending in the PICU, 10 critical care and anesthesia fellows, and 24 anesthesia and pediatric residents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During a 6-month period, 503 patients were admitted to the PICU. Within this time period, 52.4% of all deaths were preceded by limitation of support, with 100% of noncardiac surgical deaths preceded by limitation of medical interventions. At least one caregiver wished to limit care for 63 of these patients (12.5%). When caregivers wished to limit support they most frequently wished to limit invasive modes of support such as cardiopulmonary resuscitation (94%) and hemodialysis (83%). The ethical rationales identified most often for wishing to limit support were burden vs. benefit (88%) and qualitative futility (83%). Preadmission quality of life was cited less frequently (50%). Caregivers were less likely to limit care on the basis of quality of life. Nurses and physicians in the PICU were very similar to each other in the types of support they thought should be limited and their ethical rationales. CONCLUSIONS: When making decisions about whether or not to limit care for a patient, caregivers were more likely to rely on the perceived benefit to the patient than preadmission quality of life.
2000
Keenan HT; Diekema DS; O'Rourke PP; Cummings P; Woodrum DE
Critical Care Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00003246-200005000-00055" target="_blank" rel="noreferrer">10.1097/00003246-200005000-00055</a>
Communication between physician, patient, and family in the pediatric intensive care unit
Child; Humans; Intensive Care Units; Grief; Physician-Patient Relations; Attitude of Health Personnel; Education; Professional-Family Relations; Communication; Physician's Role; Patient Satisfaction; Internal-External Control; Defense Mechanisms; Power (Psychology); Kinesics; Pediatric; Adaptation; Psychological; patient care team; Parents/education/psychology; ICU Decision Making; empathy; humanism; Medical/methods; Anxiety/prevention & control/psychology
1993
Todres ID
Critical Care Medicine
1993
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00003246-199309001-00053" target="_blank" rel="noreferrer">10.1097/00003246-199309001-00053</a>
Preparation for oncology settings: what hospice social workers say they need
Humans; Attitude of Health Personnel; Cooperative Behavior; Health Services Research; Needs Assessment; Inservice Training; Florida; Professional Competence; patient care team; Neoplasms/nursing; Hospice Care/manpower/methods; Oncologic Nursing/education/manpower; Social Work/education
According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study investigating the influence of their formal academic training, informal on-the-job training, and related professional and personal experiences on their preparation for oncology social work. Findings suggest that social workers view both the generalist or core courses as well as the specialist and elective courses as important in preparing them for oncology social work. In addition, on-the-job training focusing on medical terminology, interdisciplinary, collaboration, death and dying and the integration of personal experiences are important for continuing growth and success in this work. Implications for social work practice, research, and formal and informal educational opportunities are discussed.
1999
Kovacs PJ; Bronstein LR
Health & Social Work
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/hsw/24.1.57" target="_blank" rel="noreferrer">10.1093/hsw/24.1.57</a>
Chronic pain management and the surgeon: barriers and opportunities
Humans; Palliative Care; Pain; Analgesics; Physician's Role; patient care team; Chronic disease; Surgery; Opioid/administration & dosage/therapeutic use; Pain/therapy; Intractable/drug therapy; Neoplasms/surgery; Postoperative/drug therapy
2001
Lee KF; Ray JB; Dunn GP
Journal Of The American College Of Surgeons
2001
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Journal Article
<a href="http://doi.org/10.1016/s1072-7515(01)01091-2" target="_blank" rel="noreferrer">10.1016/s1072-7515(01)01091-2</a>
Task force 1: the changing profile of congenital heart disease in adult life
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Survival Rate; Adult; Prognosis; Aged; Middle Aged; Incidence; adolescent; Preschool; patient care team; infant; Adolescent Transitions; Newborn; United States/epidemiology; Heart Defects; Congenital/mortality/rehabilitation; Great Britain/epidemiology
2001
Warnes CA; Liberthson R; Danielson GK; Dore A; Harris L; Hoffman JI; Somerville J; Williams RG; Webb GD
Journal Of The American College Of Cardiology
2001
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Journal Article
<a href="http://doi.org/10.1016/s0735-1097(01)01272-4" target="_blank" rel="noreferrer">10.1016/s0735-1097(01)01272-4</a>
Between two worlds: bridging the cultures of child health and adult medicine
Child; Humans; United States; Physician-Patient Relations; Adult; Disabled Persons; Patient Participation; Continuity of Patient Care; Survivors; patient care team; decision making; Adolescent Transitions; Chronic disease; Delivery of Health Care/organization & administration; Internal Medicine/organization & administration; Pediatrics/organization & administration
1995
Rosen D
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">10.1016/1054-139X(95)00077-6</a>
Palliative care for children with cancer--home, hospital, or hospice?
Child; Humans; Palliative Care; Terminal Care; Home Nursing; Non-U.S. Gov't; Research Support; patient care team; Neoplasms/therapy; location of death
1990
Goldman A; Beardsmore S; Hunt J
Archives Of Disease In Childhood
1990
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/adc.65.6.641" target="_blank" rel="noreferrer">10.1136/adc.65.6.641</a>
Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers
Child; Female; Humans; Male; Questionnaires; Health Personnel; Patient Satisfaction; Social Work; Preschool; patient care team; infant; Miller 2009 BMC HSR Refs; Parents/psychology; disabled children; London; Hospital Departments; Child Health Services/manpower/organization & administration; Vision Disorders/diagnosis/psychology
2004
Rahi JS; Manaras I; Tuomainen H; Hundt GL
Pediatrics
2004
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-0240" target="_blank" rel="noreferrer">10.1542/peds.2004-0240</a>
Circumstances surrounding end of life in a pediatric intensive care unit
Child; Female; Humans; infant; Male; Intensive Care Units; Adult; Parent-Child Relations; Withholding Treatment; Attitude to Death; Resuscitation Orders; Ontario; Analgesia; Treatment Failure; Pediatric; adolescent; Preschool; patient care team; decision making; infant; Newborn; ICU Decision Making; cause of death; Parents/psychology; Physicians/psychology; Terminal Care/psychology
OBJECTIVE: Approximately 60% of deaths in pediatric intensive care units follow limitation or withdrawal of life-sustaining treatment (LST). We aimed to describe the circumstances surrounding decision making and end-of-life care in this setting. METHODS: We conducted a prospective, descriptive study based on a survey with the intensivist after every consecutive death during an 8-month period in a single multidisciplinary pediatric intensive care unit. Summary statistics are presented as percentage, mean +/- standard deviation, or median and range; data are compared using the Mantel-Haenszel test and shown as survival curves. RESULTS: Of the 99 observed deaths, 27 involved failed cardiopulmonary resuscitation; of the remaining 72, 39 followed withdrawal/limitation (W/LT) of LST, 20 were do not resuscitate (DNR), and 13 were brain deaths (BDs). Families initiated discussions about forgoing LST in 24% (17 of 72) of cases. Consensus between caregivers and staff about forgoing LST as the best approach was reached after the first meeting with 51% (35 of 68) of families; 46% (31 of 68) required >or=2 meetings (4 not reported). In the DNR group, the median time to death after consensus was 24 hours and for W/LT was 3 hours. LST was later withdrawn in 11 of 20 DNR cases. The family was present in 76% (45 of 59) of cases when LST was forgone. The dying patient was held by the family in 78% (35 of 45) of these occasions. CONCLUSIONS: More than 1 formal meeting was required to reach consensus with families about forgoing LST in almost half of the patients. Families often held their child at the time of death. The majority of children died quickly after the end-of-life decision was made.
2003
Garros D; Rosychuk RJ; Cox PN
Pediatrics
2003
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Journal Article
<a href="http://doi.org/10.1542/peds.112.5.e371" target="_blank" rel="noreferrer">10.1542/peds.112.5.e371</a>
New guidelines for the management of migraine in primary care
Humans; Questionnaires; Medical History Taking; Primary Health Care; Non-U.S. Gov't; Research Support; patient care team; referral and consultation; algorithms; Diagnosis; Differential; Patient Education; Migraine Disorders/diagnosis/prevention & control/therapy
Despite repeated initiatives over the past decade, migraine remains under-recognised, under-diagnosed and under-treated in everyday clinical practice. The Migraine in Primary Care Advisors (MIPCA) group has produced new guidelines for migraine management to attempt to rectify this situation. MIPCA is a group of physicians, nurses, pharmacists and other healthcare professionals dedicated to the improvement of headache management in primary care, who have also worked closely with the Migraine Action Association (the UK patients' group) in the development of these guidelines. The principles of the new MIPCA guidelines are: To arrange specific consultations for headache. To institute a system of detailed history taking, patient education and buy-in at the outset of the consultation. To utilise a new screening algorithm for the differential diagnosis of headache, which can be confirmed by further questioning, if necessary. To institute a process of management that is individualised for each patient, using a new algorithm. Assessing the impact on the patient's daily life is a key aspect of diagnosis and management. To prescribe only treatments that have objective evidence of favourable efficacy and tolerability. To utilise prospective follow-up procedures to monitor the success of treatment. To organise a team approach to headache management in primary care.
2002
Dowson AJ; Lipscombe S; Sender J; Rees T; Watson D; Migraine In Primary Care Advisors (MIPCA) - Migraine Guidelines Development Group
Current Medical Research And Opinion
2002
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Journal Article
<a href="http://doi.org/10.1185/030079902125001164" target="_blank" rel="noreferrer">10.1185/030079902125001164</a>
Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy
Child; Female; Humans; Male; Pain Measurement; Adult; Treatment Outcome; Program Evaluation; Health Status Indicators; adolescent; patient care team; Chronic disease; Psychiatric Status Rating Scales; Cognitive Therapy/methods; Absenteeism; Family Therapy/methods; Pain/rehabilitation; Schools/statistics & numerical data
Aim: To determine the effectiveness of an interdisciplinary cognitive behavioural treatment for adolescents with chronic pain. METHODS: Fifty seven adolescents (mean age 14.28 years) with chronic pain and 57 accompanying adults underwent an interdisciplinary three week residential programme of group cognitive behavioural therapy. Mean chronicity of pain was 4.02 years; 75% were absent from full time education (mean absence 17 months). RESULTS: Post-treatment adolescents reported significant improvements for self report of disability (mean difference 3.37 (95% CI 0.65 to 6.09)), physical function (mean difference timed walk of 2.61 seconds (1.02 to 4.2) and sit to stand of 3.22 per minute (0.79 to 5.65)). At three months post-treatment adolescents maintained physical improvements and reduced anxiety (mean difference 1.7 (0.72 to 2.67)), disability (mean difference 4.3 (1.44 to 7.17)), and somatic awareness (mean difference 4.43 (1.53 to 7.33)). Following treatment adults reported significant improvement in their report of adolescent disability (mean difference 4.43 (2.17 to 6.7)), adult anxiety (mean difference 1.73 (0.54 to 2.92)), depression (mean difference 1.16 (0.34 to 1.98)), and parental stress (mean difference 10.81 (2.91 to 18.78)). At three months significant improvements were maintained. At three months 64% improved school attendance; 40% had returned to full time education. CONCLUSIONS: Interdisciplinary cognitive behavioural pain management (with family involvement) is a promising approach to the management of pain, pain related distress, and disability.
2003
Eccleston C; Malleson PN; Clinch J; Connell H; Sourbut C
Archives Of Disease In Childhood
2003
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Journal Article
<a href="http://doi.org/10.1136/adc.88.10.881" target="_blank" rel="noreferrer">10.1136/adc.88.10.881</a>
Do hospital-based palliative teams improve care for patients or families at the end of life?
Humans; Outcome and Process Assessment (Health Care); Palliative Care; Family; Hospitals; patient care team; Quality of Health Care; Terminal Care
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the sample's standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice. [References: 66]
2002
Higginson IJ; Finlay I; Goodwin DM; Cook AM; Hood K; Edwards AG; Douglas HR; Norman CE
Journal Of Pain And Symptom Management
2002
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(01)00406-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00406-7</a>
Survey of specialized tertiary care facilities for adults with congenital heart disease
Female; Humans; Male; Adult; Health Care Surveys; Questionnaires; Middle Aged; Treatment Outcome; Program Evaluation; Survival Analysis; Quality of Health Care; adolescent; patient care team; Adolescent Transitions; Hospitalization/statistics & numerical data; Heart Defects; Resource Allocation; Cardiac Care Facilities/organization & administration/utilization; Congenital/diagnosis/mortality/surgery; Europe/epidemiology; North America/epidemiology; Patient Admission/statistics & numerical data; Reoperation/utilization
BACKGROUND: Specialized tertiary care facilities developed in response to the increasing numbers of adults with congenital heart disease (CHD). Because this patient population comprises a relatively new area of specialized cardiovascular interest, the first facilities necessarily evolved without preexisting guidelines or interaction. OBJECTIVES: To characterize the major features of the six original and largest tertiary adults CHD facilities. METHODS: Written questionnaire sent to six participating facilities in North America and Europe. Information was analyzed centrally. RESULTS: All but one facilities was established over 20 years ago, and each cares for over 1500 patients. Hospital admissions ranged from 100 to 660 patients/unit/year. Of the total number of registered patients, 52-81% had undergone one or more reparative surgeries. Reoperations constituted 25-80% of the 50-170 operations/unit/year. Overall mean surgical mortality was 1.9%/year. Inpatient and outpatient care was provided in adult (n = 4) or both adult and pediatric (n = 2) settings. All six facilities enjoyed close collaboration between adult and pediatric cardiologists, cardiac surgeons, nurse specialists and cardiac and non-cardiac consultants. Training and research were pivotal activities. CONCLUSIONS: Provision of comprehensive care by multidisciplinary teams including adult and pediatric cardiologists, cardiac surgeons, specialized nurses and other cardiac and non-cardiac consultants was the unifying feature for all six tertiary care facilities reported here. There were minor differences among them based on available resources, local expertise and national health care policies. There appears to be a significant shortfall in tertiary care provision for the adult with CHD that requires further planning and resource allocation. These data may be useful for new and evolving adult CHD services.
2004
Niwa K; Perloff JK; Webb GD; Murphy D; Liberthson R; Warnes CA; Gatzoulis MA
International Journal Of Cardiology
2004
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Journal Article
<a href="http://doi.org/10.1016/j.ijcard.2003.06.019" target="_blank" rel="noreferrer">10.1016/j.ijcard.2003.06.019</a>
The comprehensive care team: a controlled trial of outpatient palliative medicine consultation
Female; Humans; Male; Questionnaires; Aged; California; Outcome and Process Assessment (Health Care); quality of life; Office Visits/statistics & numerical data; Advance Care Planning/statistics & numerical data; Chronic Obstructive/complications/psychology/therapy; Heart Failure/complications/psychology/therapy; Hospital/organization & administration/utilization; Neoplasms/complications/psychology/therapy; Outpatient Clinics; Palliative Care/organization & administration; patient care team; Primary Health Care/organization & administration/utilization; Pulmonary Disease
BACKGROUND: Little is known about the use of palliative care for outpatients who continue to pursue treatment of their underlying disease or whether outpatient palliative medicine consultation teams improve clinical outcomes. METHODS: We conducted a year-long controlled trial involving 50 intervention patients and 40 control patients in a general medicine outpatient clinic. Primary care physicians referred patients with advanced congestive heart failure, chronic obstructive pulmonary disease, or cancer who had a prognosis ranging from 1 to 5 years. In the intervention group, the primary care physicians received multiple palliative care team consultations, and patients received advance care planning, psychosocial support, and family caregiver training. Clinical and health care utilization outcomes were assessed at 6 and 12 months. RESULTS: Groups were similar at baseline. Similar numbers of patients died during the study year (P =.63). After the intervention, intervention group patients had less dyspnea (P =.01) and anxiety (P =.05) and improved sleep quality (P =.05) and spiritual well-being (P =.007), but no change in pain (P =.41), depression (P =.28), quality of life (P =.43), or satisfaction with care (P =.26). Few patients received recommended analgesic or antidepressant medications. Intervention patients had decreased primary care (P =.03) and urgent care visits (P =.04) without an increase in emergency department visits, specialty clinic visits, hospitalizations, or number of days in the hospital. There were no differences in charges (P =.80). CONCLUSIONS: Consultation by a palliative medicine team led to improved patient outcomes in dyspnea, anxiety, and spiritual well-being, but failed to improve pain or depression. Palliative care for seriously ill outpatients can be effective, but barriers to implementation must be explored.
2004
Rabow MW; Dibble SL; Pantilat SZ; McPhee SJ
Archives Of Internal Medicine
2004
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Journal Article
<a href="http://doi.org/10.1001/archinte.164.1.83" target="_blank" rel="noreferrer">10.1001/archinte.164.1.83</a>
Nutrition support for neurologically impaired children: a clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition
Child; Humans; North America; Bone Diseases; Medical; patient care team; Nutritional Status; Nutritional Failure; Children W/SNI; Nutrition Assessment; Societies; Nutritional Support/methods; Micronutrients/deficiency; Growth Disorders/diet therapy; Malnutrition/diet therapy; Metabolic/diet therapy; Nervous System Diseases/diet therapy
Undernutrition, growth failure, overweight, micronutrient deficiencies, and osteopenia are nutritional comorbidities that affect the neurologically impaired child. Monitoring neurologically impaired children for nutritional comorbidities is an integral part of their care. Early involvement by a multidisciplinary team of physicians, nurses, dieticians, occupational and speech therapists, psychologists, and social workers is essential to prevent the adverse outcomes associated with feeding difficulties and poor nutritional status. Careful evaluation and monitoring of severely disabled children for nutritional problems are warranted because of the increased risk of nutrition-related morbidity and mortality.
2006
Marchand V; Motil KJ; Committee on Nutrition NASPGHAN
Journal Of Pediatric Gastroenterology And Nutrition
2006
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Journal Article
<a href="http://doi.org/10.1097/01.mpg.0000228124.93841.ea" target="_blank" rel="noreferrer">10.1097/01.mpg.0000228124.93841.ea</a>
Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering
Child; Humans; Hospitals; Pediatric; patient care team; bereavement; Pediatrics/education; Intervention; Interventions; Quality of Health Care/organization & administration; Palliative Care/methods/psychology
OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for dying children. SETTING: A children's hospital in an urban academic medical center. PARTICIPANTS: Pediatric health care professionals of all disciplines caring for children with life-threatening conditions. INTERVENTIONS: We initiated a quality improvement program of professional education and support consisting of four interdisciplinary activities facilitated by the pediatric palliative care team. The Compassionate Care Network (CCN) provides an open forum for interdisciplinary networking and education. Palliative Care Rounds (PCR) provides education through monthly case-based discussions on selected units. Patient Care Conferences (PCC) facilitate communication and care planning for selected patients with palliative care needs on any unit in the children's center. Bereavement Debriefing Sessions (BDS) offer health professionals the opportunity to manage their responses to grief after a patient's death. EVALUATION MEASURES: From February 2002 to September 2003, we prospectively tracked the frequency of sessions conducted, the number and discipline of attendees, the age and diagnosis of patients discussed, and themes raised at each session. Participants evaluated each session. RESULTS: One hundred one sessions were conducted (PCR = 31, PCC = 23, CCN = 9, BDS = 38) for 950 participants (PCR = 312, PCC = 188, CCN = 193, BDS = 257). All units and disciplines participated in one or more sessions. Evaluations report that sessions are informative and will influence future professional practice. CONCLUSIONS: A program of interdisciplinary interventions can successfully educate and support health care professionals in providing palliative and end-of-life care for children. This program model can be applied in diverse pediatric health care settings.
2006
Rushton CH; Reder E; Hall B; Comello K; Sellers DE; Hutton N
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.922" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.922</a>
A framework for integrated pediatric palliative care: being with dying
Child; Female; Humans; Male; Palliative Care; patient care team; decision making; Parents; Cooperative Behavior; Goals; Nurse's Role; Pediatric Nursing; Interprofessional Relations; Conflict (Psychology); Holistic Health; Self Care; Self-Assessment; Benchmarking; Leukemia; Philosophy; Uncertainty; Myeloid; quality of life; PedPal Lit; Models; PEDI Study; Acute; Nursing; Organizational
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.
2005-10
Rushton CH
Journal Of Pediatric Nursing
2005
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Journal Article
<a href="http://doi.org/10.1016/j.pedn.2005.03.003" target="_blank" rel="noreferrer">10.1016/j.pedn.2005.03.003</a>
A comparison between telephone and bedside consultations given by palliative care consultation teams in the Netherlands: results from a two-year nationwide registration
patient care team; Adolescent Adult Aged Aged; PedPal Lit; methods; 80 and over Child Child; methods Male Middle Aged Netherlands Palliative Care/; Preschool Comparative Study Female Humans Interviews/; Referral and Consultation Registries; Telephone
2005
Schrijnemaekers V; Courtens A; Kuin A; van der Linden B; Vernooij-Dassen M; van Zuylen L; van den Beuken M
Journal Of Pain And Symptom Management
2005
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2004.09.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.09.002</a>
Recruitment and retention in a longitudinal palliative care study.
Female; Humans; Male; Palliative Care; Adult; Data Collection; Middle Aged; Focus Groups; Longitudinal Studies; Patient Selection; Feasibility Studies; patient care team; caregivers; Neoplasms/therapy; Acquired Immunodeficiency Syndrome/therapy; Clinical Nursing Research/organization & administration; Patient Dropouts
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data relevant to the development of a larger study. At the completion of the study, a focus group consisting of the members of the palliative care research team was convened to identify barriers to and facilitators of the research process based on their research experience. The purpose of this article is to (1) describe recruitment, mortality rates, attrition rates, and compliance with data collection of patients and family caregivers experiencing an advanced illness and to (2) examine the researchers' perspectives regarding barriers to and facilitators of the research process that relate to patients and family caregivers, institutions, the data collection process, and their personal experiences. Implications for palliative care research are discussed.
2005
Sherman DW; McSherry CB; Parkas V; et al
Applied Nursing Research
2005
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Journal Article
<a href="http://doi.org/10.1016/j.apnr.2005.04.003" target="_blank" rel="noreferrer">10.1016/j.apnr.2005.04.003</a>
Role of palliative care in adolescent and young adult oncology
Humans; Young Adult; Palliative Care; Behavior; adolescent; patient care team; Neoplasms/psychology/therapy
Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary clinical team, which should include palliative care (PC), psychology, social work, oncology, and nursing representatives. The function of PC is to provide impeccable pain and other symptom control and to coordinate care as the disease progresses. Features unique to AYAs with cancer include the psychosocial developmental phases, a young person facing death, grief, and bereavement. Pharmacologic and medical interventions by PC in AYAs are broadly similar to adults. Developing trust and being flexible are key skills that PC must use with AYAs. There is a paucity of high-quality controlled studies in the PC literature in general and AYA-PC in particular. Therefore, the methodology of this article is largely based on the narrative and clinical experience. The experience is based on clinicians' work with AYAs with cancer in Israel and Australia. Clinical lessons will be drawn by comparing and contrasting the cultures. Nevertheless, most PC clinical interventions, both pharmacologic and psychosocial, are derived from literature where there is a good evidence base. Future development of PC within AYAs should be coordinated at a national level via appropriate palliative and oncology professional organizations.
2010
Wein S; Pery S; Zer A
Journal Of Clinical Oncology
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2009.22.4543" target="_blank" rel="noreferrer">10.1200/JCO.2009.22.4543</a>
What we know (and do not know) about raising children with complex continuing care needs
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
2008-03
Carnevale FA; Rehm RS; Kirk S; McKeever P
Journal Of Child Health Care
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</a>
Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service
Child; Humans; Terminally Ill; Critical Illness; Family Health; Western Australia; patient care team; Q3 Literature Search; Parents/psychology; social support; Quality of Health Care/organization & administration/standards; Community Health Nursing/organization & administration/standards; Palliative Care/organization & administration/psychology/standards
OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.
2007
Monterosso L; Kristjanson LJ; Aoun S; Phillips MB
Palliative Medicine
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216307083032" target="_blank" rel="noreferrer">10.1177/0269216307083032</a>