A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
M.E. Lyon; Wang J
Journal Of Adolescent Health
2014
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).
DOI: 10.1016/j.jadohealth.2013.10.206
Young Children's Ability To Report On Past, Future, And Hypothetical Pain States: A Cognitive-developmental Perspective
Declarative Memory; Randomized-trial; Mental Time-travel; Recall; Needle Pain; Child; Clinical Neurology; Age-children; Cognitive-development; Medical Procedures; Attention; Self-report; Memory; Pain Assessment; Intensity; Neurosciences; Anesthesiology; Self
Children are at times asked by clinicians or researchers to rate their pain associated with their past, future, or hypothetical experiences. However, little consideration is typically given to the cognitive-developmental requirements of such pain reports. Consequently, these pain assessment tasks may exceed the abilities of some children, potentially resulting in biased or random responses. This could lead to the over- or under-treatment of children's pain. This review provides an overview of factors, and specifically the cognitive-developmental prerequisites, that may affect a child's ability to report on nonpresent pain states, such as past, future, or hypothetical pain experiences. Children's ability to report on past pains may be influenced by developmental (age, cognitive ability), contextual (mood state, language used by significant others), affective and pain-related factors. The ability to mentally construct and report on future painful experiences may be shaped by memory of past experiences, information provision and learning, contextual factors, knowledge about oneself, cognitive coping style, and cognitive development. Hypothetical pain reports are sometimes used in the development and validation of pain assessment scales, as a tool in assessing cognitive-developmental and social-developmental aspects of children's reports of pain, and for the purposes of training children to use self-report scales. Rating pain associated with hypothetical pain scenarios requires the ability to recognize pain in another person and depends on the child's experience with pain. Enhanced understanding of cognitive-developmental requirements of young children's pain reports could lead to improved understanding, assessment, and treatment of pediatric pain.
Jaaniste T
Pain
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).
DOI: 10.1097/j.pain.0000000000000666
The Role Of Psychology In Pediatric Palliative Care
Life; Health Care Sciences & Services; Child
Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the United States indicate that team composition almost never included a psychologist. This article presents a model of collaborative care to optimize the integration of psychosocial and medical aspects of treatment in pediatric palliative care, delineating how a psychologist adds to this model. This article argues that psychology brings specialized skills in assessment, intervention, and research that fit with the premise of palliative care as a holistic approach that relieves symptoms. Systematic inclusion of psychologists on pediatric palliative care teams may help to improve effectiveness of services as well as extend the knowledge base of mental health in pediatric palliative care
Edlynn E; Kaur H
Journal Of 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).
DOI: 10.1089/jpm.2015.0175
The Experiences Of Families Living With The Anticipatory Loss Of A School-age Child With Spinal Muscular Atrophy – The Parents’ Perspectives
Adult; Child; Female; Grief; Humans; Interviews As Topic; Male; Middle Aged; Muscular Atrophy Spinal/nursing; Muscular Atrophy Spinal/psychology; Nurse's Role; Parents/psychology; Taiwan
Anticipatory Loss; School-age Children; Spinal Muscular Atrophy
Aims and objectives
To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Background
Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an infection of the lungs. Therefore, family members experience anticipatory loss, which causes grief before the actual loss. Family members feel physically and mentally exhausted, which results in a family crisis. Therefore, it is important to explore their experiences related to anticipatory loss to assist with the adjustment of the families to their circumstances.
Design
This study applied a phenomenology method and purposive sampling.
Participants
The 19 parents who participated in this study were referred to us by two medical centers in Taiwan. Their average age was 32–49 years.
Methods
Using in-depth interviews, this study explored parents’ anticipatory loss. The interviews were recorded and transcribed. Meanings were extracted using Giorgi analysis, and precision was assessed according to Guba and Lincoln, which was treated as the evaluation standard.
Results
Four themes were identified from the parents’ interviews. The themes included enduring the helplessness and pressure of care, suffering due to the child's rare and unknown condition, loss of hope and a reinforcement of the parent–child attachment, and avoiding the pressure of death and enriching the child's life.
Conclusions
The research findings help nurses identify anticipatory loss among parents of school-age children with type I or II spinal muscular atrophy. They enhance health professionals’ understanding of the panic that occurs in the society surrounding the families, family members’ dynamic relationships, and the families’ demands for care.
Relevance to clinical practice
In an attempt to providing intersubjective empathy and support with family having a child with type I and II SMA, nurses may recognize relevant family reactions and enhancing their hope and parent-child attachment. Encourage family members and child go beyond the pressure of death and create customized care plans meeting families’ emotional and medical needs.
Yang
Journal Of Clinical Nursing
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).
DOI: 10.1111/jocn.13312
Storyboarding Used As An Aid To Explore Grief.
Yvonne Dexter, writing in Nursing Children and Young People, discusses the use of storyboarding and its use as a reflective practice aid. As children's nurses are among the child health professionals most directly affected by childhood death, storyboarding can provide nursing students with a safe environment to reflect on their feelings about the death of a child. Ms Dexter considers the potential for its use in practice, for example in clinical supervision and classroom settings, to manage grief.
Yvonne Dexter
Nursing Standard
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).
10.7748/ns.30.45.66.s52
Shifting Focus In Pediatric Advance Care Planning: From Advance Directives To Family Engagement
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP discussion may be an advance directive (AD), a written order delineating explicit wishes regarding medical interventions.
Pediatric palliative care (PPC) is a young field and developed many of its approaches as reflections from adult palliative care. ACP has not been well evaluated in children.1 Often ADs are thought to be synonymous with a “do not attempt resuscitation” (DNAR) order, which in turn has been treated as an indicator for a nonintervention-oriented stance and as a proxy for ACP discussions between families and clinicians.2 Another barrier identified in the literature is physician reluctance to undertake ACP discussions. Clinicians report feeling ill prepared and inadequately trained to carry out such conversations.3
Studies involving parents of children with life-threatening conditions showed that parents are interested in ACP, provided there is emotional support available.3 and 4 The literature indicates that ACP discussions likely need to occur more than once over time.
Siden H; Chavoshi N
Journal Of Pain And Symptom Management
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).
http://dx.doi.org/10.1016/j.jpainsymman.2016.05.010
Patient End-of-life Experiences For Pediatric Trainees: Spanning The Educational Continuum
Terminal Care; Education; Bereavement In Children; Pediatricians; Medical Students; Analysis; Practice; Control
Educational Continuum; End-of-life Care; Grieving; Pediatric Resident Education
Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that facilitated integration of experiences. Methods Medical students (MS4) and pediatric residents (PL-1-3) completed a 30-question survey about experiences with patient deaths and integration of these experiences. Results A total of 307 of 404 residents (76%) participated. Mean number of deaths ranged from 3.0 to 6.5 in the prior 12 months, and the most common location was neonatal intensive care unit or pediatric intensive care unit. In total, 18% to 27% experienced a death in their personal life. Between 26% and 41% of the residents made contact with a family after death, and 15% to 35% attended a funeral. Characteristics of good deaths included good communication and discussion of end-of-life issues. Conclusions Trainees experienced patient deaths along the educational continuum. These findings have implications for the optimal timing and method of end-of-life care education.
K Senthil
Clin Pediatr (phila)
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).
DOI: 10.1177/0009922816631513
Palliative Care In Undergraduate Medical Education—how Far Have We Come?
Adelaide; Palliative And Supportive Care; Australia And New Zealand; Professional Education; Australia; Medical Education
Palliative Care; Undergraduate Medical Education; Medical School; End-of-life Care
Purpose: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching within medical schools have identified significant variability and lack of consistency in teaching. This review aims to update the literature on the current status of palliative care teaching to undergraduates within medical schools. Method: A systematic review was undertaken on articles published from December 2001 to November 2015 on palliative care teaching for undergraduate medical students. In all, 650 abstract citations were obtained, of which 126 were relevant to the research questions. Thematic analysis was performed on remaining articles according to whether they discussed content and/or methodology of palliative care education, and data collated. Results: There is greater consistency in the content being delivered as part of end-of-life care education within medical schools. The most frequently taught topics include attitudes to death and dying, communication skills, and pain management. Pediatric care and religious/cultural issues are less frequently addressed. Teaching institutions are also utilising a broader range of teaching modalities. Conclusion: There is significant progress in palliative care education within medical schools. Ongoing challenges relate to correlating our current practice in medical education to professional recommendations and the expressed needs of junior doctors to practice competent end-of-life care.
Danielle Fitzpatrick; Rebecca Heah; Simon Patten; Helena Ward
American Journal Of Hospice And 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).
10.1177/1049909116659737
Opinions Of Paediatricians Who Teach Neonatal Resuscitation About Resuscitation Practices On Extremely Preterm Infants In The Delivery Room.
Management; Viability; Decision Making; Attitudes; Born; Ethics; Social Issues; Health; Social Sciences; Biomedical; Obstetricians; Ethics Medical; Care And Treatment; Ethical Aspects; Practice Guidelines (medicine); Cpr (first Aid); Methods; Infant
Clinical Ethics; Decision-making; End Of Life; Neonatology; Perinatal Mortality
Abstract
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Methods Cross-sectional study with an internationally validated electronic questionnaire (December 2011–September 2013) sent to the instructors of the Neonatal Resuscitation Program of the Brazilian Society of Paediatrics on parental counselling practices, medical limits for resuscitation of extremely preterm infants and medical considerations for decision-making in this group of infants. The analysis was descriptive.
Results Among 685 instructors, 560 (82%) agreed to participate. Only 5%–13% reported having opportunity for antenatal counselling parents: if called, 22% reported discussing with the family about the possibility not to resuscitate in the DR; 63% about the possibility of death in the DR and 89% about the possibility of death in the neonatal unit. If the parents did not agree with the advice of the paediatrician, 30%–50% of the respondents would follow the procedures they advised regardless of the opinion of the parents. The higher the gestational age, the lower is the percentage of paediatricians who believed that parents should participate in decision-making. Only 9% participants reported the existence of written guidelines at their hospital on initiation of resuscitation in the DR at limits of viability, but 80% paediatricians reported using some criteria for limiting resuscitation in the DR.
Conclusion The picture obtained in this study of Brazilian paediatricians indicates that resuscitation of extremely preterm infants is permeated by ambivalence and contradictions.
Ruth Guinsburg
Journal Of Medical Ethics
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).
doi:10.1136/medethics-2015-103173
Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective
Child; Nurses; Nursing; Death; Compassion Fatigue; Grief; Professionals; Critical Care Medicine; Experiences; Pediatric Intensive-care; Beliefs; Opinions And Attitudes; Management; Critically Ill Children; Health Aspects; Analysis; Nurses; Intensive Care Units Pediatric; Pediatric Nursing; Family; Practice
BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units.
OBJECTIVES:
To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families.
METHODS:
A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences.
RESULTS:
Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child's death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support.
CONCLUSION:
Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children's families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying.
Stayer; Lockhart; J S
American Journal Of Critical Care
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).
DOI: 10.4037/ajcc2016251
Information And Communication Needs Of Parents In Infant End-of-life: A Qualitative Study
Access To Information; Bereavement; End-of-life Care; Infant Mortality; Intensive Care Units; Neonatal
Background: Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff. Exploration of these needs can help health professionals to provide better healthcare services.
Objectives: The purpose of this study was to explore the information and communication needs of families in neonatal end-of-life and bereavement in the NICU.
Materials and Methods: A qualitative content analysis method was used for this study. Data were collected through single semi-structured interviews with 24 participants. Sampling was conducted based on the purposive sampling method in five NICU environments in Iran. All interviews were taped and transcribed verbatim.
Results: Data analysis revealed two main themes: information and communication. For information, there were two subthemes (true information about the infant’s health and true information about the infant’s death), and communication needs also developed two subthemes (communication with healthcare professionals and communication with the infant before, during and after the infant’s death).
Conclusions: According to the results, parents need accurate information about the health and the death of their neonates in the NICU. They also need to communicate with healthcare professionals and their babies. Communication is regarded as a channel for obtaining information. Therefore, the healthcare team needs to address these families’ needs and attempt to fulfill their requirements in neonatal end-of-life and bereavement in the NICU.
Keywords: Intensive Care Units; Neonatal; Access to Information; Bereavement; End-of-Life Care; Infant Death
N Sadeghi
Iranian Red Crescent 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).
DOI: 10.5812/ircmj.2566
In What Circumstances Will A Neonatologist Decide A Patient Is Not A Resuscitation Candidate?
Futility; Intensive Care; Social Issues; Social Sciences; Biomedical; Ethics Medical; Slow Code; Uncertainty; Neonatologists; Practice; Decision Making; Analysis; Do-not-resuscitate Orders; Decision Making; Intensive Care; Pediatrics; Ethics; Pulmonary Arteries; Ostomy; Palliative Care; Medical Prognosis
End-of-life Care; Foetal Viability; Neonatology; Newborns And Minors; Palliative Care
Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.
Study design An anonymous survey regarding the permissibility of unilateral DNAR orders for three clinical vignettes was sent to members of the American Academy of Pediatrics Section of Perinatal Medicine.
Results There were 490 out of a possible 3000 respondents (16%). A majority (76%) responded that a unilateral DNAR decision would be permissible in cases for which survival was felt to be impossible. A minority (25%) responded ‘yes’ when asked if a unilateral DNAR order would be permissible based solely on neurological prognosis.
Conclusions A majority of neonatologists believed unilateral DNAR decisions are ethically permissible if survival is felt to be impossible, but not permissible based solely on poor neurological prognosis. This has significant implications for clinical care.
Peter Daniel Murray; Denise Esserman; Mark Randolph Mercurio
Journal Of Medical Ethics
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).
doi:10.1136/medethics-2015-102941
Improved Terminal Care In Pediatric Intensive Care Units
R Abel; J Schirrmeister
Padiatrische Praxis
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).
Home Care For Children With Multiple Complex Chronic Conditions At The End Of Life: The Choice Of Hospice Versus Home Health.
Health Behavior; Home Health Care; Child; Child Care Services; Health Care Services
Clinical Practice: Community And Home Care Hospice Programs; Death; Home Health Care Clinical Practice
Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among children with multiple complex chronic conditions. Using the Andersen Behavioral Healthcare Utilization Model, the predisposing, enabling, and need factors of the child and family were shown to be significant predictors of hospice and home health care use. Hospice and home health care have advantages, and families may wish to use the service that best fits their needs.
Lindley LC
Home Health Care Services Quarterly
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).
DOI: 10.1080/01621424.2016.1208133
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Harris N; Beringer A; Fletcher M
Archives Of Disease In Childhood
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).
doi: 10.1136/archdischild-2015-308769
Dying Later, Surviving Longer
Life; Pediatrics; Child; Death; Mortality; Decision Making; Intensive Care; Chronic Illnesses; Pain; Demographics; Children & Youth
Epidemiology; Ethics; Intensive Care; Mortality
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population expands and as children with chronic conditions live longer. Improvements in public health measures, and in the recognition and management of paediatric critical illness, mean that children with chronic conditions are increasingly the majority population in PICU.
Plunkett and Parslow describe a shift in the timing of death in PICUs in England and Wales over the last decade.2 They observed an increase in the average length of stay for children who died (about 3 days longer, on average, in 2013 than in 2003) and a corresponding increase in the proportion of children dying after more than 4 weeks of intensive care; in 2013, approximately 12% of deaths in PICU occurred late (after 28 days), compared with only about 8% a decade earlier.
What should we make of this finding? Does it represent a failure of end-of-life decision-making? Plunkett and Parslow point to this, suggesting that children with life-limiting illnesses are now dying after a long PICU admission rather than experiencing an early death in PICU.
Wilkinson D; J Weitz
Archives Of Disease In Childhood
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).
doi:10.1136/archdischild-2016-310637
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
Pediatrics; Life-saving Apparatus; Severe Combined Immunodeficiency; Research; Parents; Analysis; Methods
If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this disease. Although potentially lifesaving, prognosis of HSCT in SCID is variable depending on a number of host and donor factors. Of the survivors, many develop secondary problems such as chronic graft-versus-host disease or even second malignancies. Posttransplant care is complex and requires great effort from parents to adhere to difficult treatment regimens. In this article, we address the difficult ethical question of what to do if parents choose not to have their child with SCID undergo HSCT but prefer palliative care.
Andrew S Nickels; G Douglas Myers; Liza-Marie Johnson; Avni Joshi; Richard R Sharp; Lantos J
Pediatrics
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 Qualitative Examination Of Physician Gender And Parental Status In Pediatric End-of-life Communication
In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL). The findings presented here emerged from a larger qualitative study that explored physician narratives surrounding pediatric EOL communication. The current study includes 17 pediatric critical care and pediatric emergency medicine physician participants who completed narrative interviews between March and October 2012 to discuss how their backgrounds influenced their approaches to pediatric EOL communication. Between April and June of 2013, participants completed a second round of narrative interviews to discuss topics generated out of the first round of interviews. We used grounded theory to inform the design and analysis of the study. Findings indicated that physician gender is related to pediatric EOL communication and care in two primary ways: (1) the level of physician emotional distress and (2) the way physicians perceive the influence of gender on communication. Additionally, parental status emerged as an important theme as it related to EOL decision-making and communication, emotional distress, and empathy. Although physicians reported experiencing more emotional distress related to interacting with patients at the EOL after they became parents, they also felt that they were better able to show empathy to parents of their patients.
Bateman LB; White ML; Tofil NM; Clair JM; Needham BL
Health Communication
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/10.1080/10410236.2016.1196412">10.1080/10410236.2016.1196412</a>
A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review
Brain-damaged Children; Home Enteral Nutrition; Quality Of Life; Video-assisted Gastrostomy; Percutaneous Endoscopic Gastrostomy; Randomized Controlled-trials; Severe Cerebral-palsy; Single-center Experience; Clinical-trials; Pediatrics; Gastroesophageal-reflux; Neurologic Manifestations Of General Diseases; Research; Child; Health Aspects
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
OBJECTIVE: To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes.
DATA SOURCES: Medline, Embase, and Cochrane Register databases searched from inception to March 2014.
STUDY SELECTION: Articles examining health outcomes of neurologically impaired children living with feeding tubes.
DATA EXTRACTION: Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development.
RESULTS: We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: “pathophysiological manifestation” outcomes (n = 83) in 79% of articles; “growth and development” outcomes (n = 13) in 55% of articles; “death” outcomes (n = 3) and “life impact” outcomes (n = 17) in 39% and 37% of articles, respectively; “resource use” outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes.
LIMITATIONS: We were unable to investigate effect size of outcomes because quantitative data were not collected.
CONCLUSIONS: The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.
Mufiza Z Kapadia; Kariym C Joachim; Chrinna Balasingham; Eyal Cohen; Mahant Sanjay; Katherine Nelson; Jonathon L Maguire; Astrid Guttmann; Martin Offringa
Pediatrics
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).
10.1542/peds.2015-3967