Palliative care for children and young people with stage 5 chronic kidney disease
advance care planning; conservative management; kidney failure; palliative care; Stage 5 chronic kidney disease (CKD 5); symptom management
Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience. Copyright © 2021, Crown.
Craig F; Henderson EM; Patel B; Murtagh FEM; Bluebond-Langner M
Pediatric Nephrology.
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00467-021-05056-1" target="_blank" rel="noreferrer noopener">10.1007/s00467-021-05056-1</a>
Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients
pediatrics; advance care planning; life-limiting illness; communication; qualitative research; stakeholder engagement
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision. OBJECTIVE: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision. DESIGN: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies. RESULTS: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory. CONCLUSION: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values.
Basu MR; Partin L; Revette A; Wolfe J; DeCourcey DD
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.006</a>
Can you tell me why you made that choice?: A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant
Adolescents; Advance care planning; decision making; palliative care; Young adults
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices<sup> R</sup> Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14-27 years) undergoing bone marrow transplant at an academic Midwest children's hospital were involved in the study. RESULTS: Influences on participants' decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant's concern over the perceived negative impact of discontinuing treatment on their families. CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.
Needle JS; Peden-McAlpine C; Liaschenko J; Koschmann K; Sanders N; Smith A; Schellinger SE; Lyon ME
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319883977" target="_blank" rel="noreferrer noopener">10.1177/0269216319883977</a>
Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
child; Humans; Pediatrics; Communication; Family/psychology; Professional-Family Relations; paediatrics; Palliative care; Advance Care Planning; Delphi technique; Stakeholder Participation; prompt list; Reminder Systems/instrumentation
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Ekberg S; Herbert A; Johns K; Tarrant G; Sansone H; Yates P; Danby S; Bradford NK
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319888988" target="_blank" rel="noreferrer noopener">10.1177/0269216319888988</a>
The Effect of FAmily-CEntered (FACE(®)) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families
pediatrics; advance care planning; family intervention; Hiv
Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE(®)) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE(®) (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE(®) intervention than control (β = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (β = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE(®) pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.
Lin CJ; Cheng YI; Garvie PA; D'Angelo LJ; Wang J; Lyon ME
Journal of Family Nursing
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1074840720964093" target="_blank" rel="noreferrer noopener">10.1177/1074840720964093</a>
Factors associated with health professionals decision to initiate paediatric advance care planning: A systematic integrative review
adolescent; Child; terminal care; palliative care; advance care planning; paediatric; infant; decision making
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often avoid or delay initiation. An overview of evidence on the factors that influence and impact on the health care professional's initiation of paediatric advance care planning process is lacking. AIM: To review and synthesise evidence on the factors associated with health care professional's decision to initiate paediatric advance care planning. DESIGN: Systematic integrative review using constant comparison method. DATA SOURCES: Electronic databases (CINAHL, PubMed, PsycINFO, Ovid MEDLINE, EMBASE, Web of Science and Cochrane) using MeSH terms and word searches in Oct 2019. No limit set on year of publication or country. Grey literature searches were also completed. RESULTS: The search yielded 4153 citations from which 90 full text articles were reviewed. Twenty-one met inclusion criteria consisting of quantitative (n = 8), qualitative (n = 6) and theoretical (n = 7) studies.Findings revealed overarching and interrelated themes 'The timing of initiation', 'What makes an initiator, 'Professionals' perceptions' and 'Prerequisites to initiation'. CONCLUSIONS: This review provides insights into the complexities and factors surrounding the initiation of advance care planning in paediatric practice. Uncertainty regarding prognosis, responsibility and unpredictable parental reactions result in inconsistent practice. Future research is required to inform intervention to assist health care professionals when initiating paediatric advance care planning conversations.
Carr K; Hasson F; McIlfatrick S; Downing J
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216320983197" target="_blank" rel="noreferrer noopener">10.1177/0269216320983197</a>
Anticipating the future of the child and family in pediatric palliative care: a qualitative study into the perspectives of parents and healthcare professionals
Advance care planning; Communication; Goals of care; Pediatric palliative care
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: • Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: • Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. • Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
Verberne LM; Fahner JC; Sondaal SFV; Schouten-van Meeteren AYN; de Kruiff CC; van Delden JJM; Kars MC
European Journal of Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-020-03824-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03824-z</a>
Differences in perspectives of pediatricians on advance care planning: a cross-sectional survey
advance care planning; palliative care; pediatrician; prognosis
BACKGROUND: The increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties. METHOD(S): This study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018. RESULT(S): Of the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%). CONCLUSION(S): The pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.
Song I G; Kang S H; Kim M S; Kim C H; Moon Y J; Lee J
BMC palliative care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-020-00652-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00652-8</a>
Perinatal Palliative Care Birth Planning as Advance Care Planning
advance care planning; birth plan; life-limiting diagnosis; neonatal; perinatal palliative care
Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.
Cortezzo D E; Ellis K; Schlegel A
Frontiers in Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2020.00556" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00556</a>
Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme
advance care planning; education; paediatrics; palliative care; simulation
AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-based education for this topic. METHODS: An electronic learning-needs survey was distributed to medical, nursing and allied health clinicians from departments who provide primary care for children with life-limiting conditions. Results were incorporated into the design of a simulation-based education session which was piloted with the Royal Children's Hospital Oncology Department. RESULTS: A total of 157 learning-needs surveys were included in analysis, and included quantitative and qualitative responses from nursing, allied health, senior and junior medical staff from intensive care, general and subspecialty medical teams. Most (75.0%) participants had participated in ACP discussions previously. Only 40.1% of participants felt confident to assess appropriate timing of, and 45.2% felt adequately prepared to participate in ACP discussions. Barriers identified were both clinician and patient/parent related, including clinicians not knowing when to address issues (43.9%) or what to say (21.0%). Participants indicated that ACP discussions are most frequently initiated when death is clearly imminent. Following a pilot of simulation-based education with the oncology department, 90% of participants expressed confidence to participate in ACP discussions. CONCLUSIONS: Barriers to paediatric ACP, including lack of clinician training, continue to contribute to delayed conversations. Simulation-based education is a valuable and feasible educational tool that can increase clinicians' understanding and confidence in this area.
Katz N T; Sacks B H; Hynson J L; Heywood M; Williams M; Sokol J
Journal of Paediatrics and Child Health
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jpc.15074" target="_blank" rel="noreferrer noopener">10.1111/jpc.15074</a>
Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit
Advance care planning; care goals; communication; decision-making; life-limiting conditions
AIM: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT). METHODS: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them. RESULTS: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP. CONCLUSION: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.
Fahner J; Rietjens J; van der Heide A; Milota M; van Delden J; Kars M
Acta Paediatrica
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.15370" target="_blank" rel="noreferrer noopener">10.1111/apa.15370</a>
Palliative care, resuscitation status, and end-of-life considerations in pediatric anesthesia
advance care planning; code status; goals of care; pediatric anesthesia; pediatric palliative care
PURPOSE OF REVIEW: To familiarize pediatric anesthesiologists with primary palliative care procedural communication skills and recommendations for discussions involving complex medical decision-making or advance care planning, such as discussions about resuscitation status. RECENT FINDINGS: Recent publications highlight the benefits of pediatric palliative care (PPC) for seriously ill patients and their families, and how PPC principles might be applied to perioperative communication and decision-making. Both prospective and retrospective reports reveal improved quality of life, symptom management, and avoidance of unnecessary interventions when PPC is introduced early for a child with serious illness. SUMMARY: Pediatric anesthesiologists will, at some point, care for a child with serious illness who would benefit from PPC. It is important that all members of the perioperative care team are familiar with primary PPC procedural communication skills and models for approaching discussions about goals of care, shared decision-making, and advance care planning. Pediatric anesthesiologists should be incorporated as early as possible in team discussions about potential procedures requiring sedation for seriously ill children.
Erondu M U; Mahoney D P
Current opinion in anaesthesiology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/ACO.0000000000000860" target="_blank" rel="noreferrer noopener">10.1097/ACO.0000000000000860</a>
Discussing end-of-life issues in an adolescent with a terminal illness
adolescent; advance care planning; end-of-life; terminal illness
Introduction: Adolescent palliative care is especially challenging because of complex developmental, social, clinical, and legal concerns. In adolescents with life-limiting illnesses, developmental tasks of normal adolescence such as developing an awareness of self and others, gaining selfconfidence, independence, and establishing one's own identity are halted. The difficulty lies in balancing the desire to gain independence while experiencing greater dependence on others as their disease progress. Purpose(s): This review discusses the multi-faceted barriers in discussion of end-of-life care with the adolescent and strategies to optimize this discussions. Case description: This case is about a wheelchair-bound 14-year-old boy with Duchenne's Muscular Dystrophy (DMD), and challenges faced discussing end-of-life issues. His condition was complicated by restrictive lung disease requiring nocturnal Bilevel Positive Airway Pressure (BiPAP) and dilated cardiomyopathy with severely reduced biventricular systolic function. His parents did not want the patient's deteriorating condition to be divulged to him, and he struggled to make sense of his medical experiences. This resulted in non-compliance to medication, fluid restriction, and nocturnal use of BIPAP, exacerbating a vicious circle of admissions for fluid overload due to symptomatic congestive cardiac failure. He had difficulty coming to terms with his illness, felt like a burden to his parents, struggled with frequent nightmares about death, and would wake up in a state of panic. Advanced Care Planning (ACP) with the family was challenging due to parental resistance. Results/Discussion: We reviewed the literature and identified challenges in discussing end-of-life issues with the adolescent. Perspectives from main stakeholders such as the parents, the adolescent, and the medical professionals were evaluated. Key strategies for taking on the end-of-life discussion with the adolescent are as follows: (1) Employing a multidisciplinary team approach for supporting decision-making by dying adolescent, including the physician, nurse, psychologist, social worker, and child life specialist; (2) overcoming parental barriers through physician truthtelling and effective communication, and breaking-down of parental self-defense mechanisms through psychosocial support and pediatric palliative care teams; (3) engaging the adolescent and determining their functional competence and decision-making ability; and (4) integrating truthtelling with modern bioethical principles. Conclusion(s): Our clinical case exemplifies the importance of involving the adolescent in the end-oflife discussion. Early involvement establishes trust between the medical team and the family, whilst providing control and independence as the adolescent's needs are incorporated into the treatment plan. As physicians, the aim is to engage the above strategies together with the multidisciplinary team, preserve opportunities for the adolescent and family to create meaningful legacies, say goodbye to each other, or find spiritual peace in end-of-life care.
Chia S Y
Cogent Medicine. Conference: 11th Annual Excellence in Pediatrics Conference. Denmark.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/2331205X.2019.1694205" target="_blank" rel="noreferrer noopener">10.1080/2331205X.2019.1694205</a>
Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child
Advance care planning; Communication; Pediatric palliative care; Shared decision making
Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child.Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians.What is Known:* Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach.* Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning.What is New:* When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past.* There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings.
Fahner J C; Tholking T W; Rietjens J A C; van der Heide A; van Delden J J M; Kars M C
European Journal of Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-020-03627-2" target="_blank" rel="noreferrer noopener">10.1007/s00431-020-03627-2</a>
Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study
adolescent; adult; Advance Care Planning; article; attention; child; clinical article; cross-sectional study; decision making; female; heart graft; human; male; patient participation; pilot study; prognosis; school child; young adult
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences. AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making. DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018. SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital. RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
Cousino M K; Miller V A; Smith C; Uzark K; Lowery R; Rottach N; Blume E D; Schumacher K R
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319874689" target="_blank" rel="noreferrer noopener">10.1177/0269216319874689</a>
Toward an Understanding of Advance Care Planning in Children With Medical Complexity
advance care planning; children; children with medical complexity; healthcare professional perspectives; healthcare professionals; healthcare provider perspectives; healthcare providers; parent perspectives; parental perspectives
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
Orkin J; Beaune L; Moore C; Weiser N; Arje D; Rapoport A; Netten K; Adams S; Cohen E; Amin R
Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2019-2241" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-2241</a>
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescent; Adolescent Behavior/psychology; advance care planning; Attitude to Death; Critical Illness/*psychology; Female; Humans; literature; literature and medicine; Male; Medicine in Literature; Modern; narrative ethics; narrative medicine; paediatrics; Terminal Care/*psychology
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
Kirkman A O; Hartsock J A; Torke A M
Medical Humanities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">10.1136/medhum-2017-011400</a>
Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study
adolescent; advance care planning; article; awareness; child; content analysis; decision making; documentation; emergency health service; female; health care personnel; human; human experiment; living will; male; Palliative therapy; pediatrics; practice guideline; qualitative research; trust
BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS: We included bereaved parents, health care providers and stakeholders of care networks.
Hein K; Knochel K; Zaimovic V; Reimann D; Monz A; Heitkamp N; Borasio G D; Fuhrer M
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319900317" target="_blank" rel="noreferrer noopener">10.1177/0269216319900317</a>
Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families
adolescent; advance care planning; chronic illness; end-of-life; palliative care
Lyon M E; Dallas R H; Garvie P A; Wilkins M L; Garcia A; Cheng Y I; Wang J
BMJ supportive & palliative care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2016-001224" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2016-001224</a>
Withholding and withdrawal of life-sustaining treatments for neonate in Japan: Are hospital practices associated with physicians' beliefs, practices, or perceived barriers?
advance care planning; article; female; hospital policy; human; human experiment; institutional care; intensive care; Japan; life sustaining treatment; male; neonatologist; newborn; questionnaire
OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices with parents. STUDY DESIGN: A self-reported questionnaire was administered to assess frequency of withholding and withdrawing intensive care at the respondent's facility, the physician's degree of affirming various beliefs about end-of-life care that was compared to 7 European countries, their self-reported ACP practices and perceived barriers to ACP. Three neonatologists at all 298 facilities accredited by the Japan Society for Neonatal Health and Development were surveyed, with 572 neonatologists at 217 facilities responding.
Yotani N; Nabetani M; Feudtner C; Honda J; Kizawa Y; Iijima K
Early human development
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.earlhumdev.2019.104931" target="_blank" rel="noreferrer noopener">10.1016/j.earlhumdev.2019.104931</a>
Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study
advance care planning; article; child; consultation; content analysis; conversation; decision making; Flanders; human; interview; law; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; privacy; qualitative research; uncertainty
Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. Objectives This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses. Methods We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators. Results Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging). Conclusions Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
Dombrecht L; Piette V; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Cornette L; Beernaert K; Cohen J
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.10.007</a>
Approaches to community-based palliative care provision by children's hospices in the UK
advance care planning; child health; palliative nursing; article; child; controlled study; female; human; human experiment; Internet; major clinical study; male; out-of-hours care; prescription; questionnaire; registered nurse; telephone; workforce
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
Tatterton MJ
Nursing children and young people.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2019.e1199</a>
The experiences of bereaved family caregivers with advance care planning for children with medical complexity
death; child; female; human; male; genetic transcription; clinical article; health care personnel; advance care planning; conference abstract; caregiver; human tissue; consultation; perception; semi structured interview; content analysis; conversation; informed consent; personal experience
BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as "the process of discussing life-sustaining treatments and establishing long-term care goals." Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver's views. Bereaved caregivers have the unique ability to reflect upon ACP through their child's whole disease course and end of life experience. OBJECTIVE(S): To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child's death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers' experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULT(S): 13 bereaved caregivers of CMC completed 12 interviews ranging from 40-80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver's feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION(S): Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.
Lord S; Moore C; Netten K; Amin R; Rappaport A; Hellman J; Cohen E; Orkin J
Paediatrics and Child Health (Canada)
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).
Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</a>
Children's unmet palliative care needs: a scoping review of parents' perspectives
advance care planning; paediatric palliative care; review; hospice care; parental experience; service evaluation
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. AIM: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. CHARTING METHODS: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. SOURCES OF EVIDENCE: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. RESULTS: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. CONCLUSIONS: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Constantinou G; Garcia R; Cook E; Randhawa G
BMJ Supportive Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001705</a>
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
death; article; child; female; human; male; palliative therapy; genetic transcription; thematic analysis; pediatrics; clinical article; palliative care; pediatric intensive care unit; advance care planning; decision making; interview; human tissue; national health service; nonverbal communication; paediatric palliative care
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. Setting A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. Participants 17 parents of 11 children who had died in the PICU. Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care. Copyright © 2019 Author(s).
Mitchell S; Spry J L; Hill E; Coad J; Dale J; Plunkett A
BMJ Open
2019
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2018-028548</a>
When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant
advance care planning; adolescent; death; outpatient; prognosis; school child; cancer prognosis; malignant neoplasm; heart failure; conference abstract; human; child; controlled study; perception; conversation; cardiomyopathy; heart graft
Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has been demonstrated, but the ACP preferences of adolescents with heart disease and their parents have not been evaluated. We aimed to describe and compare ACP preferences of adolescents with CMHF/HTx and their parents. Method(s): Outpatient adolescents with CMHF/HTx, aged 12-18y, and their parents completed a self-administered survey from March to May 2018. The survey evaluated preferences regarding the importance of ACP, sharing of prognostic information, and timing of ACP discussions. Participants answered independently. In addition, parents were asked their perception of their child's response. Adolescents' and parents' survey responses were compared. Survey responses were recoded as dichotomous variables and compared using McNemar's test. Result(s): Twenty-five dyads (mean adolescent age 15.0 +/- 1.8 years) completed the survey. Most adolescents (71%) considered their current health to be very good or excellent. ACP importance was ranked moderately or extremely important by 44% adolescents compared to 88% parents (p=0.006). Most adolescents (88%) reported that they wanted their doctor to inform them as soon as their doctor knew they were dying; in contrast, only 44% of parents wanted the doctor to share this information with their child (p=0.003). The majority of parents (84%) and adolescents (80%) wanted the adolescent to be involved in end-of-life (EOL) decisions. Conclusion(s): While many adolescents with CMHF/HTx did not report that ACP was of great importance, they do not want to be kept in the dark if death is near. Adolescents with CMHF/HTx reported that they want to be told as soon as the physician knows they are going to die and want to be involved in EOL decisions. Parents want their adolescent to be involved in EOL decisions, but are less likely to want to share a terminal prognosis with the adolescent. These results highlight discrepancies between adolescent and parent views regarding EOL conversations. More research is needed to inform effective EOL communication between parent, adolescent, and provider.
Hansen K; Edwards L A; Luong R; Yohannes K; Halpern-Felsher B; Cohen H; Kaufman B
Circulation. Conference
2018
Communication about prognosis and end-of-life in pediatric organ failure and transplantation
advance care planning; pediatric; communication; end-of-life; solid organ transplant
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations. METHODS: This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used. RESULTS: Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics. CONCLUSION: Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.
Cousino MK; Schumacher KR; Magee J C; Wolfe J; Yu S; Eder SJ; Fredericks EM
Pediatric Transplantation
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/petr.13373" target="_blank" rel="noreferrer noopener">10.1111/petr.13373</a>
Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
Spirituality; advance care planning; Terminal Care/psychology; Middle Aged; Male; Young Adult; Humans; Adult; Female; Decision Making; Attitude of Health Personnel; Religion; advance directives; hospital-specific palliative care issues; spirituality; religion; Health Personnel/psychology; Advance Care Planning/statistics & numerical data; attitude of health personnel; Clergy/psychology; living wills; Living Wills/psychology/statistics & numerical data; physician patient communication
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.
Bowman M; St Cyr S; Stolf I A
American journal of hospice & palliative care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">10.1177/1049909118785891</a>
Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
advance care planning; adolescent; pediatrics; feasibility study; palliative therapy; major clinical study; needs assessment; videorecording; caregiver; nonhuman; Human immunodeficiency virus; human experiment; malignant neoplasm; wellbeing; skill; conference abstract; human; child; female; male; controlled study; interview; comorbidity; uncertainty; medical care; social isolation; rare disease; health disparity; rigor
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as a condition affecting fewer than 200,000 persons. Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP), a key component of pediatric palliative care, has been proven to improve communication and spiritual and emotional well-being for children with cancer and HIV and their families. For providers, pACP, involves preparation and skill development to facilitate discussions about goals of care and future medical care choices. Due to the uncertainty surrounding a rare disease diagnosis, social isolation and the likelihood of parents being asked to make complex medical decisions for their child, rare diseases exact a severe emotional toll on families. There is an urgent need for interventions to ease the suffering of these families, yet few empirically validated interventions exist to address these issues. Moreover, children with rare diseases are a heterogeneous group who because of co-morbidities are often excluded from research, thereby creating a health disparity. Available research lacks scientific rigor. Our consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we pilot tested the innovative FACE-Rare intervention, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). For acceptability, feasibility and safety purposes, we pilot tested the 4-session intervention, conducted exit interviews, baseline and 2-week post-intervention assessments. This session will review the existing research on the palliative care needs of family caregivers of children with rare diseases, introduce this innovative intervention and its components, disseminate findings from the beta testing and pilot testing, and discuss future directions for research. Video clips will also be presented.
Friebert S; Fratantoni K; Wiener L; Needle J; Fraser J; Gaines J; Alderfer M; Lyon M
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.037</a>
Courageous conversations: Advance care planning and family communication
follow up; cooperation; conference abstract; human; controlled study; adult; young adult; advance care planning; conversation; anxiety assessment; anxiety disorder; social media
Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in communicating their preferences for their care while they are living and how they want to be remembered after their death. Research completed at the National Cancer Institute, NIH LED to the development of an advance care planning (ACP) guide, Voicing My CHOiCESTM (VMC). The objectives of this study are to determine 1) the perceived helpfulness of VMC; 2) whether further revisions are needed, and 3) whether engaging in ACP using VMC is associated with reduced anxiety and/or improved communication about ACP with family. Design/Methods: AYA ages 18-39 (NCI definition of AYA) complete a baseline assessment of anxiety and communication. Participants review VMC and rate the helpfulness, stressfulness and changes needed for each page and complete 3 pages of the document. Assessment of anxiety and communication is repeated 1 month later. Results: Ninety AYA participated at baseline; 73 at follow up. Fifty-five percent had not previously discussed their wishes/preferences for EoL care with their family at baseline. Of those, 50% shared what they wrote in VMC at follow-up. For the 45% that had an initial conversation at baseline, 76% discussed what was written in the VMC. Among those who did not have the conversation, specific barriers were identified. Over 90% reported the VMC questions to be somewhat helpful/helpful/very helpful. Several changes were suggested, including remembrance on social media. Both general anxiety and anxiety around end of life planning decreased significantly (p<.01) between baseline and follow up. Conclusions: Introducing a developmentally appropriate ACP guide can facilitate EoL discussions with AYA family members. Our data suggests such discussions can lead to reduced generalized anxiety and anxiety specific to EoL planning.
Wiener L; Zadeh BS; Battles H; Leonard S; Fasciano K; Heath C; Lyon M; Donovan KA;De Arruda Colli MNF; Pao M
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool
advance care planning; quality of life; end-of-life care; decision-making; communication; conjoint analysis
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.
Snaman JM; Blazin L; Holder RL; Wolfe J; Baker JN
Journal of Adolescent and Young Adult Oncology
2018
<a href="http://doi.org/%2010.1089/jayao.2018.0116" target="_blank" rel="noreferrer noopener">10.1089/jayao.2018.0116</a>
Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
advance care planning; death; Germany; semi structured interview; shared decision making; pilot study; morality; conference abstract; human; child; female; male; clinical article; palliative therapy; conversation
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) identify challenges during pediatric advance care discussions and (2) explore the perception of participants about pACP with the final goal of (3) developing a pACP conversation guideline.
Hein K; Monz A; Daxer M; Heitkamp N; Knochel K; Jox R; Borasio GD; Fuehrer M
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.419" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.419</a>
Challenges of palliative care in children with inborn metabolic diseases
decision making; gastrointestinal tract; palliative therapy; major clinical study; retrospective study; preschool child; cohort analysis; home visit; patient referral; human; article; child; female; male; controlled study; adult; gastrointestinal symptom; attention; young adult; resuscitation; advance care planning; neurologic disease; metabolic disorder
Background: Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team. Results: Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU. Conclusions: About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.Copyright � 2018 The Author(s).
Hoell JI; Warfsmann J; Distelmaier F; Borkhardt A; Janssen G; Kuhlen M
Orphanet Journal of Rare Diseases
2018
<a href="http://doi.org/10.1186/s13023-018-0868-5" target="_blank" rel="noreferrer noopener">10.1186/s13023-018-0868-5</a>
Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review
advance care planning; Age Factors; Physician-Patient Relations; Communication; Advance Care Planning/standards; Humans; Pediatrics; palliative care; decision-making; systematic review; serious illness; Practice Guidelines as Topic; Geriatrics; goals of care discussions; Patient Care Planning/standards; point-of-care clinical tools
BACKGROUND: Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations focus on planning for future health care, ensuring that an incapable person's wishes are known and can guide the person's substitute decision maker for future decision-making. Goals of care discussions focus on preparing for current decision-making by ensuring the person's goals guide this process. AIM: To provide evidence regarding tools and/or practices available for use by health-care providers to effectively facilitate advance care planning conversations and/or goals of care discussions. DATA SOURCES: A systematic review was conducted focusing on guidelines, randomized trials, comparative studies, and noncomparative studies. Databases searched included MEDLINE, EMBASE, and the proceedings of the International Advance Care Planning Conference and the American Society of Clinical Oncology Palliative Care Symposium. CONCLUSIONS: Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning or goals of care discussions. Effective advance care planning conversations at both the population and the individual level require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. There is a need for research focused on goals of care discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate goals of care from advance care planning.
Myers J; Cosby R; Gzik D; Harle I; Harrold D; Incardona N; Walton T
American Journal of Hospice and Palliatice Care
2018
<a href="http://doi.org/10.1177/1049909118760303" target="_blank" rel="noreferrer noopener">10.1177/1049909118760303</a>
Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Hospital Mortality; Bereavement; Human; Communication; Anxiety; Stress Psychological; Palliative Care; Canada; Attitude to Death; Emotions; Adult Children; Life Change Events; Interviews; Interpersonal Relations; Memory; Collaboration; Narratives; Home Health Care; Purposive Sample; Support Psychosocial; Life Experiences; Patient Care Plans; Quality of Life; Content Analysis; Thematic Analysis; Advance Care Planning; Patient Attitudes; Accountability; Caregiver Attitudes; Health Facilities -- Canada; Idiopathic Pulmonary Fibrosis -- Prognosis; Idiopathic Pulmonary Fibrosis -- Therapy -- Canada; Pulmonologists; Spouses
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
Pooler C; Richman-Eisenstat J; Kalluri M
Palliative Medicine
2018
<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener">10.1177/0269216318789025</a>
Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
advance care planning; hospice; clinical assessment; pain assessment; education; palliative therapy; major clinical study; lung; prognosis; caregiver; skill; conference abstract; human; child; female; male; controlled study; adult; perception; awareness; depression assessment; Kruskal Wallis test
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering, and code status. Complex symptom management and addressing conflicts around goals and decisions are considered "specialty" PC skills for which PC consultation may be appropriate. We aimed to understand primary PC skills of CF care teams from the perspectives of team members, individuals with CF, and family caregivers. Methods: CF care team members ("providers"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF care teams to provide various aspects of PC using a 5-point scale from "poor" to "excellent." Median ratings were compared between and among groups using Mann-Whitney and Kruskal-Wallis tests. Results: A total of 520 participants, including 70 patients, 100 caregivers, and 350 providers, completed surveys. CF care teams consistently rated their PC skills higher than patients or caregivers rated providers' skills. Providers rated their teams "very good" at pain and depression assessments, discussing lung transplant, and discussing prognosis, and "good" at discussing advance care planning (ACP), code status, end of life, and hospice. Patients and caregivers agreed that teams provide "very good" pain assessment, but rated teams "good" at assessing depression (P<0.001) and discussing prognosis (P=0.006), and "poor" at discussing lung transplant (P<0.001), ACP (P<0.001), code status (P<0.001), end of life (P<0.001), and hospice (P<0.001). Providers, patients, and caregivers affiliated with adult CF care teams rated teams more highly then providers, patients, and caregivers affiliated with pediatric teams at discussing lung transplant (P<0.001), end of life (P=0.006), ACP (P<0.001), code status (P=0.012), and hospice (P=0.016). A majority of patients (69%) and caregivers (60%) felt CF care teams should definitely receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and provider perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. While patients, caregivers, and providers agree that CF care teams are skilled in some "primary" PC skills like pain and depression assessment and discussing prognosis, patients and caregivers feel providers' skills are lacking in discussing lung transplant, ACP, code status, end of life, and hospice. Education for all groups could promote awareness of PC, and CF care teams may benefit from specific PC training to enhance "primary" PC skills as well as understanding when and how to utilize specialty PC services.
Dellon EP; Basile M; Hobler M R; Georgiopoulos A; Goggin JL; Chen E; Goss CH; Hempstead SE; Faro A; Kavalieratos D
Pediatric Pulmonology
2018
<a href="http://doi.org/10.1002/ppul.24152" target="_blank" rel="noreferrer noopener">10.1002/ppul.24152</a>
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions
advance care planning; quality of life; end-of-life care; palliative care; complex chronic conditions; parental perspectives
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with cancer where it is correlated with high-quality end-of-life care. The impact of advance care planning on end-of-life outcomes for children, adolescents, and young adults with complex chronic conditions is unknown, thus we sought to evaluate parental preferences for advance care planning and to determine whether advance care planning and assessment of specific family considerations during advance care planning were associated with differences in parent-reported end-of-life outcomes. Design: Cross-sectional survey. Setting: Large, tertiary care children's hospital. Subjects: Bereaved parents of children, adolescents, and young adults with complex chronic conditions who died between 2006 and 2015. Interventions: None. Measurement and Main Results: One-hundred fourteen parents were enrolled (54% response rate) and all parents reported that advance care planning was important, with a majority (70%) endorsing that discussions should occur early in the illness course. Parents who reported advance care planning (65%) were more likely to be prepared for their child's last days of life (adjusted odds ratio, 3.78; 95% CI, 1.33-10.77), to have the ability to plan their child's location of death (adjusted odds ratio, 2.93; 95% CI, 1.06-8.07), and to rate their child's quality of life during end-of-life as good to excellent (adjusted odds ratio, 3.59; 95% CI, 1.23-10.37). Notably, advance care planning which included specific assessment of family goals was associated with a decrease in reported child suffering at end-of-life (adjusted odds ratio, 0.23; 95% CI, 0.06-0.86) and parental decisional regret (adjusted odds ratio, 0.42; 95% CI, 0.02-0.87). Conclusions: Parents of children, adolescents, and young adults with complex chronic conditions highly value advance care planning, early in the illness course. Importantly, advance care planning is associated with improved parent-reported end-of-life outcomes for this population including superior quality of life. Further studies should evaluate strategies to ensure high-quality advance care planning including specific assessment of family goals.
DeCourcey DD; Silverman M; Oladunjoye A; Wolfe J
Critical Care Medicine
2018
<a href="http://doi.org/10.1097/ccm.0000000000003472" target="_blank" rel="noreferrer noopener">10.1097/ccm.0000000000003472</a>
A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
advance care planning;decision making;Child;clinical audit;conference abstract;conversation;death;education;England;human;information retrieval;intensivist;landscape;palliative therapy
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. An ACP in PICU simulation programme for clinicians in our large quaternary centre. A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.
Sidgwick P;Randle E;Petros A
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537859.14793.d8</a>
Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Yotani N;Kizawa Y;Shintaku H
BMJ Paediatrics Open
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</a>