What impedes timely pediatric palliative care consults? A preliminary report
child; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.
Marell P; Gupta S; Goloff N; Sherva K
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).
The 'good death' in pediatric oncology
adult; advanced cancer; advanced practice provider; aged; avoidance behavior; childhood cancer; clergy; clinical article; cohort analysis; conference abstract; content analysis; controlled study; female; genetic transcription; human; male; medical staff; music; pediatric hospital; physiotherapist; prospective study; semi structured interview; software; sudden death; terminal care; young adult
Background: Empirical descriptions of a 'good death' exist for older adults with cancer, and these have served as the foundation for providing quality end of life care. In contrast, little is known about what, if anything, constitutes a 'good death' from the perspective of Adolescents and Young Adults (AYAs) with advanced cancer, their caregivers, or their medical teams. Pediatric oncology clinicians care for numerous patients at the end of life and can offer a breadth of insight regarding these difficult situations. Incorporating clinician experience can identify common pitfalls as well as successful strategies to inform and improve the delivery of patientcentered end of life care. Ultimately, understanding the intersection between patient, family, and provider values is critical to providing high quality end of life care for AYAs. This study provides a first step toward achieving this goal. Objective(s): This sub-analysis is part of a larger project that includes AYA patients, their parents, and bereaved parents. The objective of the present analysis was to identify factors that healthcare clinicians considered important at the end of life for AYA patients and their families. Design/Method: In this prospective qualitative cohort study, semi-structured interviews were conducted with n = 19 (74% female) oncology medical staff at a large academic pediatric hospital. Staff members included physicians (n = 7), advanced practice providers (n = 6), and other multidisciplinary providers including physical therapists, music/art therapists, and chaplains (n = 5). Interviews were audiorecorded verbatim, de-identified, and transcribed. Two primary coders conducted content analyses to identify relevant themes related to quality end of life care. Coding was reconciled iteratively with each transcript to informsubsequent thematic development and ensure saturation. Data were analyzed using ATLAS.ti software. Result(s): Twenty-seven major themes and 66 sub-themes emerged from provider interviews. Major themes included 'Acceptance,' 'Communication,' 'Meeting Families Where They Are,' and 'Protection.' Providers identified early and transparent communication within families, parental acceptance, and AYA/families maintaining a sense of control as features of a 'good death.' Lack of open communication, an unexpected/sudden death, and family denial or avoidance correlated with providers' experiences of a 'bad death.' Conclusion(s): Healthcare clinicians agree that compassionate and transparent communication are common denominators in good end of life care for AYAs with cancer. These insights may help clinicians caring for patients during a very difficult period of the cancer care trajectory. Future analysis of patient and parent interviews will guide recommendations for the practice of end of life care that is most aligned with patient/family values.
Taylor M; Barton K; Rosenberg A
Pediatric Blood and Cancer
2019
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff
Attitude of Health Personnel; Attitudes; Female; Health Knowledge; Hospital/psychology; Humans; Intensive Care Units; Male; Medical Staff; Neonatal/statistics & numerical data; Nursing Staff; Practice; Professional-Family Relations; Resuscitation Orders/psychology; Retrospective Studies; Surveys and Questionnaires; United States; Withholding Treatment/statistics & numerical data
OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect clinical care is unknown. DESIGN: Retrospective medical record data review and staff survey responses about neonatal ICU do-not-resuscitate orders. SETTING: Four academic neonatal ICUs. SUBJECTS: Clinical staff members working in each neonatal ICU. INTERVENTIONS: Survey response collection and analysis. MEASUREMENTS AND MAIN RESULTS: Participating neonatal ICUs had 14-48 beds and 120-870 admissions/yr. Frequency range of do-not-resuscitate orders was 3-11 per year. Two-hundred fifty-seven surveys were completed (46% response). Fifty-nine percent of respondents were nurses; 20% were physicians. Over the 5-year period, 44% and 17% had discussed a do-not-resuscitate order one to five times and greater than or equal to 6 times, respectively. Fifty-seven percent and 22% had cared for one to five and greater than or equal to 6 patients with do-not-resuscitate orders, respectively. Neonatologists, trainees, and nurse practitioners were more likely to report receiving training in discussing do-not-resuscitate orders or caring for such patients compared with registered nurses and respiratory therapists (p < 0.001). Forty-one percent of respondents reported caring for an infant in whom interventions had been withheld after a do-not-resuscitate order had been placed without discussing the specific withholding with the family. Twenty-seven percent had taken care of an infant in whom interventions had been withdrawn under the same circumstances. Participants with previous experiences withholding or withdrawing interventions were more likely to agree that these actions are appropriate (p < 0.001). CONCLUSIONS: Most neonatal ICU staff report experience with do-not-resuscitate orders; however, many, particularly nurses and respiratory therapists, report no training in this area. Variable beliefs with respect to withholding and withdrawing care for patients with do-not-resuscitate orders exist among staff. Because neonatal ICU patients with do-not-resuscitate orders may ultimately survive, withholding or withdrawing interventions may have long-lasting effects, which may or may not coincide with familial intentions.
Arzuaga BH; Wraight CL; Cummings CL; Mao W; Miedema D; Brodsky DD
Pediatric Critical Care Medicine
2018
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A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
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<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
End-of-life decision making in Taiwan: healthcare practice is rooted in local culture and laws that should be adjusted to patients' best interests
Female; Humans; Male; Terminal Care; decision making; Attitude of Health Personnel; Medical Staff; Attitude to Death; Resuscitation Orders; Neonatology; Nursing Staff; Hospital
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.
2013-06
Tang Siew Tzuh
Journal Of Medical Ethics
2013
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Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100760" target="_blank" rel="noreferrer">10.1136/medethics-2012-100760</a>
Staff experiences with end-of-life care in the pediatric intensive care unit
Humans; Intensive Care Units; Grief; Medical Staff; Professional-Patient Relations; Medical; Pediatric; Psychological; Stress; Hospital/psychology; Interviews as Topic/methods; Technology; Terminal Care/ethics/methods
The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief. CONCLUSIONS: The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support.
2008
Lee KJ; Dupree CY
Journal Of Palliative Medicine
2008
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Journal Article
<a href="http://doi.org/10.1089/jpm.2007.0283" target="_blank" rel="noreferrer">10.1089/jpm.2007.0283</a>
New and lingering controversies in pediatric end-of-life care
Child; Humans; Analgesics; Data Collection; Attitude of Health Personnel; Medical Futility; Medical Staff; Withholding Treatment; Life Support Care; Medical; Practice Guidelines; ICU Decision Making; Pain/drug therapy; Opioid/therapeutic use; Specialties; Terminal Care/psychology; Nurses/psychology; Hospital/psychology
OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.
2005
Solomon MZ; Sellers DE; Heller KS; Dokken DL; Levetown M; Rushton C; Truog RD; Fleischman AR
Pediatrics
2005
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-0905" target="_blank" rel="noreferrer">10.1542/peds.2004-0905</a>
Practice patterns in pediatric consultation-liaison psychiatry: a national survey
Child; Humans; United States; Health Care Surveys; Medical Staff; Questionnaires; Time Factors; PedPal Lit; Child Psychiatry/economics/statistics & numerical data/trends; data/trends; Hospital/statistics & numerical data/trends; Hospitals/statistics & numerical data/trends; Mental Health Services/organization & administration/trends/utilization; Physician's Practice Patterns/economics/statistics & numerical; Referral and Consultation/economics/trends/utilization
The purpose of this survey was to describe the current status of pediatric consultation-liaison (C-L) services in the United States. A total of 144 pediatric C-L programs were surveyed, with a response rate of 33%. Financial and staffing constraints were cited as common problems; 61% of programs reported an increase in consultation requests over the past 5 years, however, 30% of services reported a decrease in funding. Collection rates for professional billings average 30%; 57% of services reported an increase in clinical service demands at the expense of teaching and liaison activities. Discussion includes recommendations based on the results of the survey.
2006
Shaw RJ; Wamboldt M; Bursch B; Stuber M
Psychosomatics
2006
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Journal Article
Grieving the death of a child: supporting health professionals who care for grieving patients may benefit all
Child; Humans; Medical Staff; PedPal Lit; Grief; Parents/psychology; Death; Suicide/psychology; Hospital/psychology; social support
2006
Vrabtchev SV
Bmj
2006
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Journal Article
Nurse-led paediatric pre operative assessment: an equivalence study
Child; Female; Humans; Male; Great Britain; Medical Staff; Nurse's Role; Sensitivity and Specificity; Hospitals; Nursing Evaluation Research; Single-Blind Method; Teaching; Nursing Staff; adolescent; Preschool; PedPal Lit; infant; Comparative Study; Clinical Competence/standards; Hospital/standards; Pediatric Nursing/education/organization & administration; Ambulatory Surgical Procedures/education/nursing; Hospital/education/standards; Medical History Taking/standards; Nursing Assessment/standards; Perioperative Nursing/education/organization & administration; Physical Examination/nursing/standards; Preoperative Care/nursing
AIM: to explore whether nurses can undertake the pre operative assessment of children prior to day case surgery as safely as senior house officers. DESIGN: a randomised controlled trial involving 595 children, using an equivalence methodology (a method which looks for similarity rather than a significant difference). Pre-operative assessment prior to day case surgery was randomised to either a nurse (experimental group) or a junior doctor (control group). Blinded expert verification of nurse/junior doctor performance was ascertained by an experienced anaesthetist (the 'gold standard'). RESULTS: there was equivalence between nurses and senior house officers in their ability to detect clinically significant abnormalities within the sample population. Subgroup analysis also demonstrated equivalence in respect of history taking abilities. The smaller number of clinically significant physical findings within the sample meant that equivalence in respect of physical examination remains uncertain. Although the study was limited to a single setting, the results demonstrate nurses' equivalence with junior doctors in a discrete paediatric context.
2006
Rushforth H; Burge D; Mullee M; Jones S; McDonald H; Glasper EA
Paediatric Nursing
2006
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Journal Article
Clinician predictions of intensive care unit mortality
Female; Humans; Male; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Middle Aged; Respiration; Severity of Illness Index; Survival Analysis; Risk Factors; Predictive Value of Tests; Chi-Square Distribution; Proportional Hazards Models; Nursing Staff; Artificial; Intensive Care Units/statistics & numerical data; APACHE; Nursing Assessment/standards; Likelihood Functions; Clinical Competence/standards; Critical Illness/mortality/therapy; Hospital/standards; Multiple Organ Failure/classification/mortality
OBJECTIVE: Predicting outcomes for critically ill patients is an important aspect of discussions with families in the intensive care unit. Our objective was to evaluate clinical intensive care unit survival predictions and their consequences for mechanically ventilated patients. DESIGN: Prospective cohort study. SETTING: Fifteen tertiary care centers. PATIENTS: Consecutive mechanically ventilated patients > or = 18 yrs of age with expected intensive care unit stay > or = 72 hrs. INTERVENTIONS: We recorded baseline characteristics at intensive care unit admission. Daily we measured multiple organ dysfunction score (MODS), use of advanced life support, patient preferences for life support, and intensivist and bedside intensive care unit nurse estimated probability of intensive care unit survival. MEASUREMENTS AND MAIN RESULTS: The 851 patients were aged 61.2 (+/- 17.6, mean + SD) yrs with an Acute Physiology and Chronic Health Evaluation (APACHE) II score of 21.7 (+/- 8.6). Three hundred and four patients (35.7%) died in the intensive care unit, and 341 (40.1%) were assessed by a physician at least once to have a < 10% intensive care unit survival probability. Independent predictors of intensive care unit mortality were baseline APACHE II score (hazard ratio, 1.16; 95% confidence interval, 1.08-1.24, for a 5-point increase) and daily factors such as MODS (hazard ratio, 2.50; 95% confidence interval, 2.06-3.04, for a 5-point increase), use of inotropes or vasopressors (hazard ratio, 2.14; 95% confidence interval, 1.66-2.77), dialysis (hazard ratio, 0.51; 95% confidence interval, 0.35-0.75), patient preference to limit life support (hazard ratio, 10.22; 95% confidence interval, 7.38-14.16), and physician but not nurse prediction of < 10% survival. The impact of physician estimates of < 10% intensive care unit survival was greater for patients without vs. those with preferences to limit life support (p < .001) and for patients with less vs. more severe organ dysfunction (p < .001). Mechanical ventilation, inotropes or vasopressors, and dialysis were withdrawn more often when physicians predicted < 10% probability of intensive care unit survival (all ps < .001). CONCLUSIONS: Physician estimates of intensive care unit survival < 10% are associated with subsequent life support limitation and more powerfully predict intensive care unit mortality than illness severity, evolving or resolving organ dysfunction, and use of inotropes or vasopressors.
2004
Rocker G; Cook D; Sjokvist P; Weaver B; Finfer S; McDonald E; Marshall J; Kirby A; Levy M; Dodek P; Heyland D; Guyatt G; Level of Care Study Investigators; Canadian Critical Care Trials Group
Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1097/01.ccm.0000126402.51524.52" target="_blank" rel="noreferrer">10.1097/01.ccm.0000126402.51524.52</a>
Certainty and mortality prediction in critically ill children.
Child; Humans; Intensive Care Units; Medical Staff; Hospital Mortality; Prognosis; Prospective Studies; Clinical Competence; Longitudinal Studies; Risk Assessment; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; Hospital; Health Care and Public Health; Critical Illness/mortality
OBJECTIVES: The objective of this study is to investigate the relationship between a physician's subjective mortality prediction and the level of confidence with which that mortality prediction is made. DESIGN AND PARTICIPANTS: The study is a prospective cohort of patients less than 18 years of age admitted to a tertiary Paediatric Intensive Care Unit (ICU) at a University Children's Hospital with a minimum length of ICU stay of 10 h. Paediatric ICU attending physicians and fellows provided mortality risk predictions and the level of confidence associated with these predictions on consecutive patients at the time of multidisciplinary rounds within 24 hours of admission to the paediatric ICU. Median confidence levels were compared across different ranges of mortality risk predictions. RESULTS: Data were collected on 642 of 713 eligible patients (36 deaths, 5.6%). Mortality predictions greater than 5% and less than 95% were made with significantly less confidence than those predictions 95%. Experience was associated with greater confidence in prognostication. CONCLUSIONS: We conclude that a physician's subjective mortality prediction may be dependent on the level of confidence in the prognosis; that is, a physician less confident in his or her prognosis is more likely to state an intermediate survival prediction. Measuring the level of confidence associated with mortality risk predictions (or any prognostic assessment) may therefore be important because different levels of confidence may translate into differences in a physician's therapeutic plans and their assessment of the patient's future.
2004
Marcin JP; Pretzlaff RK; Pollack MM; Patel KM; Ruttimann UE
Journal Of Medical Ethics
2004
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Journal Article
<a href="http://doi.org/10.1136/jme.2002.001537" target="_blank" rel="noreferrer">10.1136/jme.2002.001537</a>
Junior versus senior physicians for informing families of intensive care unit patients
Female; Humans; Male; Intensive Care Units; Adult; Critical Illness; Medical Staff; Prospective Studies; Aged; Middle Aged; Professional-Family Relations; Communication; Internship and Residency; Intensive Care; Comprehension; Family Health; Personal Satisfaction; ICU Decision Making; Hospital
To compare the effectiveness of information delivered to family members of critically ill patients by junior and senior physicians, we performed a prospective randomized multicenter trial in 11 French intensive care units. Patients (n = 220) were allocated at random to having their family members receive information by only junior or only senior physicians throughout the intensive care unit stay; there were 92 and 93 evaluable cases in the junior and senior groups, respectively, with no significant differences in baseline characteristics. Between Days 3 and 5, one family representative per patient was evaluated for comprehension of the diagnosis, prognosis, and treatment in the patient; satisfaction with information and care; and presence of symptoms of anxiety and depression. No significant differences were found between the two groups for any of these three criteria. Family members informed by a junior physician were more likely to feel they had not been given enough information time (additional time wanted: 3 [0-6.5] vs. 0 [0-5] minutes, p = 0.01) and to have sought additional explanations from their usual doctor (48.9 vs. 34.4%, p = 0.004). Specialty residents, if given opportunities for acquiring experience, can become proficient in communicating with families and share this task with senior physicians.
2004
Moreau D; Goldgran-Toledano D; Alberti C; Jourdain M; Adrie C; Annane D; Garrouste-Orgeas M; Lefrant JY; Papazian L; Quinio P; Pochard F; Azoulay E
American Journal Of Respiratory And Critical Care Medicine
2004
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Journal Article
<a href="http://doi.org/10.1164/rccm.200305-645OC" target="_blank" rel="noreferrer">10.1164/rccm.200305-645OC</a>
Ethical conflicts between residents and attending physicians
Humans; Medical Staff; Dissent and Disputes; Interprofessional Relations; Conflict (Psychology); Ethics; Medical; ICU Decision Making; Bioethics and Professional Ethics; Hospital/ethics; Internship and Residency/ethics
Conflicts between residents and attending physicians over ethical issues often occur and residents must attempt to navigate these perilous waters. A brief description of a conflict concerning informed consent and professional role expectations in a neonatal intensive care unit is presented. The discussion then explores contextual features that often shape such ethical conflicts and presents ways of understanding ethical conflicts that occur in the course of medical training. Constructive approaches for residents to engage in conflict resolution are offered.
2002
Levi BH
Clinical Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1177/000992280204100904" target="_blank" rel="noreferrer">10.1177/000992280204100904</a>
Evaluation of patient-care protocol use by various providers
Humans; Medical Staff; Medical Audit; Cooperative Behavior; Patient Care Planning; Medical History Taking; Hospitals; Nurse Practitioners; Teaching; Medical; Nursing Staff; RDF Project; Hospital; Fees; General; Laboratory Techniques and Procedures; North Carolina; Personnel; Pharyngitis/diagnosis/therapy; Physician Assistants/education
1975
Grimm R; Shimoni K; Harlan W; Estes E
New England Journal Of Medicine
1975
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/10.1056/nejm197503062921005" target="_blank" rel="noreferrer">10.1056/nejm197503062921005</a>
Work, knowledge and argument in specialist consultations: incorporating tacit knowledge into system design and development
Humans; Medical Staff; Communication; Interprofessional Relations; Non-U.S. Gov't; Research Support; Clinical; Hospital; Pathology; Surgery
To understand how video telephone technology could support consultations between pathologists and surgeons, this study looked at what constitutes 'work' in clinical consultations. Using several methods (participant observation, video and interviews), we found pathologists and surgeons both share and do not share similar understandings of what a consultation is, what one should achieve in a consultation, and what in fact constitutes a 'successful' consultation. Furthermore, the same objects of consultation (the products of 'offstage' work) can be used and defined quite differently depending on how a consultation is framed. Differences and disjunctions like these have to be better understood if computer-supported cooperative healthcare work (CSCHW) applications are to be adopted and accepted.
1993
Nyce JM; Timpka T
Medical & Biological Engineering & Computing
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/10.1007/bf02446887" target="_blank" rel="noreferrer">10.1007/bf02446887</a>
Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit
Child; Cross-Sectional Studies; Humans; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Prognosis; Questionnaires; Euthanasia; Life Support Care; Activities of Daily Living; Linear Models; Nursing Staff; Pediatric; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Family/psychology; ICU Decision Making; Intervention; Interventions; Passive; Hospital/psychology
OBJECTIVE: To explore patient-related factors which influence the decisions of pediatric intensive care unit (ICU) caregivers to restrict life-support interventions. DESIGN: Cross-sectional survey. SETTING: A university-affiliated pediatric ICU. SUBJECTS: All physicians and nurses caring for oncology or cardiology ICU patients. INTERVENTIONS: Seven patient characteristics were systematically presented in 16 theoretical case scenarios. MEASUREMENTS AND MAIN RESULTS: Individual linear regression models were constructed for each participant by calculating the importance caregivers placed on seven patient characteristics when deciding about starting intravenous vasopressors, performing chest compressions, and withdrawing life support. We compared the numerical and descriptive (very low, low, moderate, high) probability of survival. We surveyed 86 caregivers and 56 (65%) responded. The most important factors influencing decisions were family preferences (76% of decisions), followed by probability of survival (50%), and functional status (47%). There was marked variability among respondents in 38 (79%)/48 of the questions; 20% to 50% of caregivers chose opposing directions of patient management when they were asked to indicate the likelihood that they would perform a specific life-support intervention. The same term was never used by all respondents to describe the probability of survival for a scenario. CONCLUSION: Critically ill children and their families could face markedly different attitudes about the restriction of life-support interventions, depending on which nurses and physicians are involved in their care.
1997
Randolph AG; Zollo MB; Wigton RS; Yeh TS
Critical Care Medicine
1997
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/10.1097/00003246-199703000-00011" target="_blank" rel="noreferrer">10.1097/00003246-199703000-00011</a>
Reasons for dissatisfaction: A survey of relatives of intensive care patients who died
Cross-Sectional Studies; Female; Humans; Male; Adult; Medical Staff; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Communication; Death; Non-U.S. Gov't; Research Support; Family/psychology; cause of death; Age Distribution; Hospital; Switzerland; Consumer Satisfaction/statistics & numerical data; Terminal Care/psychology/standards; Intensive Care Units/standards
OBJECTIVE: To describe the reasons for eventual dissatisfaction among the families of patients who died in the intensive care unit (ICU), regarding both the assistance offered during the patient's stay in the hospital and the information received from the medical staff. DESIGN: Cross-sectional descriptive study, which was conducted after a survey using a questionnaire. SETTING: Interdisciplinary ICU (n = 8 beds) at San Giovanni Hospital in Bellinzona (CH). SUBJECTS: Three-hundred ninety families of patients who died in the ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A postal questionnaire (n = 43 questions) was sent to the families of 390 patients who died in the ICU during 8 yrs (1981 to 1989). The results referred to 123 replies: a) 82.6% of the respondents expressed no criticism of the patient's hospital stay; b) 90% considered the patient's treatment was adequate; c) 17% felt that the information received concerning diagnosis was insufficient or unclear; and d) 30% (particularly close relatives and those relatives who were informed of the death by telephone and not in person) expressed dissatisfaction regarding the information received on the cause of death. CONCLUSIONS: Our survey found that the relatives of patients who died were most dissatisfied with the care received according to: a) the type of death (e.g., sudden death vs. death preceded by a gradual deterioration in the patient's condition); and b) the manner in which the relatives were notified of the death (in person vs. by telephone). The personal characteristics of the people interviewed, such as gender and the closeness of their relationship to the deceased, also seem to have some bearing on the opinions expressed. A high percentage of respondents were satisfied with the treatment received by their dying relative and the information conveyed by caregivers. Nevertheless, the dissatisfaction expressed by some respondents indicates a need for improvement, especially in communicating information to the relatives of these patients.
1998
Malacrida R; Bettelini CM; Degrate A; Martinez M; Badia F; Piazza J; Vizzardi N; Wullschleger R; Rapin CH
Critical Care Medicine
1998
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/10.1097/00003246-199807000-00018" target="_blank" rel="noreferrer">10.1097/00003246-199807000-00018</a>
End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses
Child; Cross-Sectional Studies; Humans; United States; Intensive Care Units; Adult; Attitude of Health Personnel; Medical Staff; Questionnaires; Middle Aged; Attitude to Death; Multivariate Analysis; Hospitals; Analysis of Variance; Child Advocacy; Ethics; Medical; Nursing Staff; Practice; Pediatric; Empirical Approach; Death and Euthanasia; Attitudes; decision making; Health Knowledge; ICU Decision Making; Nursing; Pediatrics/methods; Critical Care/organization & administration/psychology; Hospital/education/psychology; Physician's Practice Patterns/organization & administration; Terminal Care/organization & administration/psychology
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric hospitals in the United States. MEASUREMENTS AND MAIN RESULTS: The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%; p < .003); that ethical issues are discussed well within the team (92% vs. 59%; p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%; p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. CONCLUSIONS: Nearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.
2001
Burns JP; Mitchell C; Griffith JL; Truog RD
Critical Care Medicine
2001
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/10.1097/00003246-200103000-00036" target="_blank" rel="noreferrer">10.1097/00003246-200103000-00036</a>
Variability in physician opinion on limiting pediatric life support
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Medical Staff; Prognosis; Questionnaires; Euthanasia; Fellowships and Scholarships; Regression Analysis; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Pediatrics/statistics & numerical data; ICU Decision Making; Neoplasms/therapy; Terminal Care/psychology; Passive/psychology; Intensive Care/psychology; Hospital/psychology/statistics & numerical data; Medical Oncology/statistics & numerical data
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients. DESIGN: Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios. SETTING: A total of 29 American pediatric ICUs. PARTICIPANTS: Pediatric intensive care and oncology attendings and fellows. INTERVENTION: Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a /=10% of respondents chose full aggressive management as the most appropriate level of care, whereas another >/=10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. (ABSTRACT TRUNCATED)
1999
Randolph AG; Zollo MB; Egger MJ; Guyatt GH; Nelson RM; Stidham GL
Pediatrics
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/10.1542/peds.103.4.e46" target="_blank" rel="noreferrer">10.1542/peds.103.4.e46</a>
Reviewing audit: barriers and facilitating factors for effective clinical audit
Physician-Patient Relations; Great Britain; Medical Staff; Leadership; Physician's Role; Interprofessional Relations; Patient Satisfaction; Quality of Health Care; Job Satisfaction; Hospitals; MEDLINE; Family Practice; Primary Health Care; Non-U.S. Gov't; Comparative Study; Evaluation Studies; retrospective studies; Databases; Hospital; Support; General; Attitude of Health Personnel; Nursing Audit; Bibliographic; Medical Audit/standards; Medical Records/standards; Partnership Practice
OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a thorough review of Medline and CINAHL databases using the keywords of "audit", "audit of audits", and "evaluation of audits" and a handsearch of the indexes of relevant journals for key papers. RESULTS: Findings from 93 publications were reviewed. These ranged from single case studies of individual audit projects through retrospective reviews of departmental audit programmes to studies of interface projects between primary and secondary care. The studies reviewed incorporated the experiences of a wide variety of clinicians, from medical consultants to professionals allied to medicine and from those involved in unidisciplinary and multidisciplinary ventures. Perceived benefits of audit included improved communication among colleagues and other professional groups, improved patient care, increased professional satisfaction, and better administration. Some disadvantages of audit were perceived as diminished clinical ownership, fear of litigation, hierarchical and territorial suspicions, and professional isolation. The main barriers to clinical audit can be classified under five main headings. These are lack of resources, lack of expertise or advice in project design and analysis, problems between groups and group members, lack of an overall plan for audit, and organisational impediments. Key facilitating factors to audit were also identified: they included modern medical records systems, effective training, dedicated staff, protected time, structured programmes, and a shared dialogue between purchasers and providers. CONCLUSIONS: Clinical audit can be a valuable assistance to any programme which aims to improve the quality of health care and its delivery. Yet without a coherent strategy aimed at nurturing effective audits, valuable opportunities will be lost. Paying careful attention to the professional attitudes highlighted in this review may help audit to deliver on some of its promise.
2000
Johnston G; Crombie IK; Davies HT; Alder EM; Millard A
Quality In Health Care
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
Barriers to conducting advance care discussions for children with life-threatening conditions.
Child; Female; Humans; Male; United States; Adult; Medical Staff; Questionnaires; Hospitals; Practice; Pediatric; Attitudes; DNAR; DNAR Outcomes; Palliative Care/st [Standards]; Advance Care Planning/og [Organization & Administration]; Critical Illness/th [Therapy]; Attitude of Health Personnel; Communication Barriers; Health Knowledge; Medical Staff; Hospital/es [Ethics]; Hospital/px [Psychology]; Hospital/st [Standards]
BACKGROUND AND OBJECTIVE: Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions., METHODS: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD., RESULTS: A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course., CONCLUSIONS: Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
Durall A; Zurakowski D; Wolfe J
Pediatrics
2012
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Journal Article
<a href="http://doi.org/10.1542/peds.2011-2695" target="_blank" rel="noreferrer">10.1542/peds.2011-2695</a>
Palliative Care
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Pediatric Oncology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</a>
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