End-of-life Decisions for Fragile Neonates: Navigating between Opinion and Evidence-based Medicine
Ethics; Mortality; Neonatology; Palliative Care; Patient Perspective
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations shed some light on this topic. Durrmeyer et al systematically described the management of 73 delivery room deaths in the EPIPAGE-2 cohort. The vast majority of neonates had LSI withheld, at a median gestational age of 24 weeks. Pain was usually assessed: 50% of infants received comfort medication, the administration of which was not associated with the evaluation of pain but rather with the presence of gasping. Satisfaction of healthcare providers was strongly associated with the occurrence of parent-child contact, which frequently occurred. Aladangady et al describe the short-term outcome of LSI-limitation discussions with parents in a prospective multicentre trial in the UK (the WILST study). Half of the parents did not agree with providers and opted to continue LSI. When this occurred, it was not rare for the neonates to survive. When parents and providers agreed that LSI should be limited, neonates rarely survived.
Janvier A; Farlow B; Verhagen E; Barrington K
Archives of Disease in Childhood
2016
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<a href="http://dx.doi.org/10.1136/archdischild-2016-311123">10.1136/archdischild-2016-311123</a>
Relationship Between Response To Stress & Meaning Making And The Effects On Grief After Child Death
General & Internal Medicine
Learning Objectives: Parents that experience the death of a child are at high risk for complicated grief, which may be related to unsuccessful attempts to find meaning in their loss. Responses to stress include involuntary reactions that reflect temperament or conditioned responses (intrusive thoughts, emotional numbness), as well as coping which refers to responses that are voluntary and involve conscious effort (problem solving, cognitive restructuring). A parent’s ability to find meaning in their child’s death may be influenced by their reaction to stress & coping. In this study we explored the relationship between a bereaved parent’s response to stress and their ability to make meaning of their child’s death. We hypothesized that parents with more meaning making would have less complicated grief. Methods: This was a prospective survey study of bereaved parents whose children died in the PICU & CICU at Nationwide Children’s Hospital from 2012 to 2014. Parents were enrolled 6 months after their child’s death and completed measured that assessed demographics, response to stress (RSQ), prolonged grief (PG-13), grief reactions (Hogan GRC), and meaning making (ISLES). Results: The sample consisted of 26 parents of 17 children. More meaning making was seen amongst parents that demonstrated higher levels of voluntary primary (r=.452, p=.023) & secondary control coping (r=.620, p=.002). Parents with higher levels of involuntary stress response demonstrated lower levels of meaning making (engagement r=-.558, p=.004; disengagement r=-.687, p=<.001). Bereaved parents with higher levels of meaning making demonstrated less symptoms of prolonged grief (r=-.548, p=.005) and less negative reaction to grief (despair r=-.739, p=<.001; panic r=-.612, p=.001; blame/anger r=-.565, p=.003; detachment r=-.653, p=<.001; disorganization r=-.664, p=<.001). Conclusions: Bereaved parents with higher levels of meaning making show less overall symptoms of prolonged grief and less negative reactions to grief. This may be related to higher levels of voluntary coping; whereas higher levels of involuntary response to stress may be detrimental.
Suttle M; Gerhardt C; Fults M; Shultz E
Critical Care Medicine
2016
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Hospitalization Outcomes In Children With End Of-life Care Measures
General & Internal Medicine
Learning Objectives: Care at end of life in adults is known to account for a large proportion of health care resources. Current national estimates of outcomes in hospitalized children with end of life care are unknown. Using a large nationwide sample, we sought to characterize outcomes in hospitalized children who received end of life care measures. Methods: We performed a retrospective analysis of the Nationwide Inpatient Sample for years 2012 and 2013. All patients aged up to 17 years who had End of Life Care (ELC) treatment in the hospital were selected. Demographic characteristics of this cohort were examined. Outcomes examined included: hospitalization charges (HC), length of stay (LOS), and disposition status. Results: During the study period, a total of 9,785 children had ELC in hospitals. The mean age of this cohort was 4 years. Males comprised 53% of patients. Whites (49.8%) were the most frequently reported race followed by Hispanics(21.8%), Blacks(16.8%), Asians/Pacific Islanders (3.8%), Native Americans (1.3%), and other races (6.5%). 90% of this cohort was admitted on an emergency/urgent basis. The major diagnostic categories to which the patients belonged to included: Newborns/Neonates with conditions originating in perinatal period (37.8%), diseases of nervous system (14%), diseases of respiratory system (13.4%), myeloproliferative diseases/poorly differentiated neoplasms(5.7%), and disease of circulatory system(5.6%). Medicaid(53.3%) and private insurance plans(35.8%) were predominating payers. 24.3% were discharged routinely, 1.9% were transferred to another hospital, 4.4% were discharged to long term care facilities, 17.8% were discharged to home health care, and 51.4% died during hospitalization. The mean LOS in hospital was 14.4days and the total hospitalization days across the entire USA was 141,065 days. The mean HC was $183,202 and the total HC across the entire USA for this cohort of patients receiving ELC was $1.7 Billion. Conclusions: End of life care in hospitalized children accounts for considerable resource utilization. Strategies to optimize care, costs and quality at end of life are needed.
Allareddy V; Rampa S; Nalliah R; Lee MK
Critical Care Medicine
2016
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DOI: <a href="http://journals.lww.com/ccmjournal/Citation/2016/12001/546___HOSPITALIZATION_OUTCOMES_IN_CHILDREN_WITH.509.aspx" target="_blank" rel="noreferrer">10.1097/01.ccm.0000509224.58519.30</a>
The Relationship Between Bereaved Parental Knowledge Of Events And Satisfaction With Care
Learning Objectives: Parents have described high-quality end of life care as care that involves giving news with sensitivity, giving clear information on what to expect, and generally preparing families for the circumstances surrounding their child's death. Because of the often rapid nature of death in the pediatric intensive care unit, intensivists may have less time to adequately prepare families, leaving them unsatisfied with care. In this study we compared bereaved parents' perceived understanding of the medical events surrounding their child's death to their overall satisfaction with ICU care. We hypothesized that parents that reported higher perceived knowledge would have higher satisfaction with care. Methods: This was a survey study of bereaved parents whose children died in the PICU & CICU at Nationwide Children's Hospital from 2012 to 2014. Parents were enrolled 6 months after their child's death and completed measures that assessed demographics, perceived knowledge of care, and healthcare satisfaction (Peds QL). Results: The sample consisted of 26 parents of 17 children. Parents who rated their understanding of the medical events surrounding their child's death highly, had higher overall satisfaction (r=.485, p=.026); whereas parents with more lingering questions about their child's death had less overall satisfaction (r=-.541, p=.011) and less information satisfaction (r=-.508, p=.022). Parents that relied more on support staff (nurses, social work) and family & friends for understanding medical events had higher satisfaction with regard to their emotional needs (r=.559, p=.047; r=.657, p=.015). Reliance on family & friends for understanding also correlated with higher overall satisfaction (r=.439, p=.036). Conclusions: Bereaved parents with higher perceived knowledge of the medical events surrounding their child's death and less lingering questions about the death have higher overall satisfaction with care. Parents who rely more on support staff and family & friends for understanding of medical events have higher satisfaction of their emotional needs.
Suttle M; Gerhardt C; Fults M; Shultz E
Critical Care Medicine
2016
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Fifteen-minute Consultation: Perinatal Palliative Care
Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary support for families. In this paper we define and describe one model for providing perinatal palliative care, drawing on the personal and professional experience of the authors. Copyright � 2016 BMJ Publishing Group Ltd & Royal College of Paediatrics and Child Health.
Sidgwick P; Harrop E; Kelly B; Todorovic A; Wilkinson D
Archives Of Disease In Childhood
2016
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Multi-disciplinary Pediatric End-of-life Training Improves Staff Preparedness And Lessens Staff Distress
Background: Children's hospital professionals generally receive standardized training in Pediatric Advanced Life Support (PALS) but they are not regularly trained in the provision of end-of-life care in situations where death is anticipated. To address this training gap, we developed a series of training modules and workshops for the provision of end-of-life (EOL) care and have trained over 500 professionals since 2010. Objectives: To assess whether receiving advanced EOL care training can help caregivers provide more effective care for a dying patient and reduce their own stress and anxiety as they deliver that care. Methods: Likert scale surveys were sent to professionals within forty-eight hours of their having been involved in care of a dying child. The survey assessed the degree of agreement that participation in advanced EOL training or PALS training (1) helped them to participate more effectively in the care of dying child and (2) reduced anxiety or stress in the delivery of end-of-life care. Results: Six hundred ninety three caregivers (mostly doctors and nurses) have responded to 134 post-death surveys. Of 321 respondents who had had PALS training, fifty-four percent agreed or strongly agreed that PALS training helped them participate more effectively in the patient's care; fifty-one percent agreed or strongly agreed that PALS training reduced their anxiety or stress. For those 186 respondents who had had specific palliative-care-team-led EOL training, eighty-nine percent agreed or strongly agreed that EOL training not only helped them participate more effectively, but also reduced their anxiety or stress. Differences in PALS vs. EOL training were significant at p LT 0.01 for both questions. Impact on Practice: Training in advanced end-of-life care may be a useful adjunct in preparing pediatric professionals caring for children in their last hours of life.
Pituch K; Halsey M; Keefer P; Azim J
Journal Of Pain And Symptom Management
2016
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<a href="http://dx.doi.org/10.1016/j.jpainsymman.2016.10.111" target="_blank" rel="noreferrer"><span>http://dx.doi.org/10.1016/j.jpainsymman.2016.10.111</span></a>
Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies
Background: The majority of children die in pediatric hospitals after a decision to withhold or withdraw life sustaining interventions. Tensions and conflicts at the end of life (EOL) are not rare in pediatric hospitals. Objective: To investigate how frequent these conflicts are and how health-care professionals (HCPs) experience, cope and suggest improvements regarding endof- life communications in pediatrics. Design/Methods: Questionnaire sent to all 2300 HCPs who care for patients in a large mother-child university hospital. Results: 946 HCPs answered the questionnaire (nurses, physicians and other disciplines). A majority (70%, 663) had witnessed or cared for at least one dying child over the preceding five years. Of those, 73% experienced at least a conflict at the end of life. Conflict occurred more frequently among HCPs (58%) than between HCPs and parents (33%), p LT 0.05. More than 40% reported the following factors as being frequently associated with end-of-life conflicts: * HCP Related: lack of continuity (physicians and/ or nurses), differences in values and beliefs between HCP. * Patient-Disease Related: precipitated or critical situations, uncertain prognosis. * Parent Related: unprepared parents, emotional load, unrealistic parental expectations, differences in values and beliefs, parents' fear of hastening death. * Institution Related: lack of practical guidelines to deal with difficult end-of-life cases. HCP report using these strategies to solve confrontations: negotiating with parents and patients, educating parents and discussing with peers. Nurses and physicians reported significantly different types of coping strategies. For 66% of respondents, conflicts were resolved by the time of the child's death. Only 25% felt they received adequate training to cope with EOL conflicts. Suggestions for improvement: primary health-care providers or case-managers, interdisciplinary meetings involving the parents, post-death ethics meetings, bereavement follow-up protocols andearlier consultation in pediatric palliative care and/or clinical ethics service. Conclusions: End-of-life conflicts are frequent in pediatrics. The main source of tension is between providers who may have different views and values. Coping mechanisms may be different from one provider to another, but many identify useful strategies to solve conflicts. Future research should investigate whether these perspectives parallel those of parents and patients.
Payot A; Archambault-Grenier MA; Roy-Gagnon MH; Humbert N; Stojanovic S; Janvier A; Duval M
Journal Of Pain And Symptom Management
2016
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"Scared of Palliative ": Perspectives on Palliative Care from Pediatric Nurses Caring for Children with Progressive Life Shortening Illnesses on Acute Care Units
Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the number of children with PLSIs who require long-term management of their disease condition in hospital is steadily increasing. Accordingly, pediatric nurses on general hospital units frequently care for children with PLSIs and are intensely engagedin controlling pain and managing complex symptoms such as respiratory support, feeding issues, and seizure management. Despite pediatric nurses carrying out the essential aspects of palliative care, specifically pain and symptom management, they typically do not identify their practice as being influenced by the tenets of palliative care and even described feeling "scared of palliative. " Methods: Qualitative data was collected through individual interviews with pediatric acute care nurses, the transcripts of which were analyzed according to the interpretive methodology of philosophical hermeneutics. Results: Participants revealed a limited understanding of the scope and breath of pediatric palliative care. Participants avoided using the language of palliative care in their discussion of their work with children with PLSIs. When they did use the language of palliative care, it was taken up in the sense of end-of-life care: "she was made palliative that day. " Furthermore, participants often deferred to the palliative care consult team when asked about how they understood the role of palliative care in their practice. Conclusions: Nurses working with children with PLSIs and their families could benefit from support and empowerment in their work through an integrative and creative approach with the palliative care consult team. This would include involvement of acute care nurses in decision making conversations and the implementation of an Advanced Practice Nursing role to work as a liaison between the consult team and bedside nurses.
McConnell S; Raffin Bouchal S; Moules N; Rallison L
Journal Of Pain And Symptom Management
2016
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<a href="https://doi.org/10.1016/j.jpainsymman.2016.10.075">10.1016/j.jpainsymman.2016.10.075</a>
A Survey Of Pediatric Critical Care Fellows On Palliative Care Principles Applied In The Icu Setting
Learning Objectives: Pediatric intensivists are often required to practice what has been described as "primary palliative care". This includes providing optimal symptom management, communication and family support for critically ill children with chronic or life threatening illness. However, literature suggests a gap in both knowledge and training among subspecialty trainees in the area of palliative care principles and practice. The purpose of this survey is to evaluate pediatric critical care fellows' attitudes toward and prior experience applying palliative care principles in the PICU as well as their preferences for an educational curriculum. Data collected from this survey is being used in the development of a three year palliative care curriculum targeted specifically for pediatric critical care fellows. Methods: A 14 question Qualtrics survey was e-mailed to all program directors of ACGME accredited pediatric critical care fellowships in the United States for fellow distribution. Participation was voluntary and answers are anonymous. Qualtrics software was used to collect survey data. Results: Data is based on a 50% nationwide response rate. Over half of respondents described palliative care experience, however 30% of respondents acknowledged no training in several areas including withdrawal of technology, family support at the end of life, leading a family meeting and discussing patient prognosis. 65% of the respondents described discomfort with providing resources for hospice and discussing the ethical principles at the end of life. 70% agreed that formal training in palliative care would make them a more skilled intensivist. Greater than 50% also preferred to learn about communication and symptom management in a palliative care curriculum via case discussions or a formal palliative rotation. Conclusions: Pediatric intensivists practice palliative care on a regular basis, however the majority of fellows report the need for more formal training. A dedicated longitudinal palliative care curriculum for pediatric critical care fellows can provide the necessary knowledge and skills to close this training gap.
Jump J; Dickerman M
Critical Care Medicine
2016
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<a href="https://journals.lww.com/ccmjournal/Citation/2016/12001/397__A_SURVEY_OF_PEDIATRIC_CRITICAL_CARE_FELLOWS.360.aspx">10.1097/01.ccm.0000509075.12377.eb</a>
Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review
Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the quality of care provided to children with life-threatening conditions and their families. Objectives: We conducted a systematic review to identify structure, process and outcome indicators of quality palliative care for children with life-threatening conditions and their families, and evaluate how these indicators are measured. Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE, Embase) and a combination of the following key word terms: palliative care, healthcare quality, and quality assessment / improvement / measurement / metrics or preferred practices. Results were limited to studies in children, aged 0-18 years. Book chapters, theses and conference abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full article review for all retained articles. Two reviewers were involved at each level of review. Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance, 1322 full articles were reviewed, and 121 articles were included in the final review. Key indicators included: availability of specialised PPC services (including bereavement care); proportion of children suffering from a variety of symptoms; proportion of families with documented discussions of goals of care; proportion of children dying in their preferred location; and proportion of parents satisfied with PPC service provision. Conclusions: There are a number of indicators and associated measures for assessing the quality of pediatric palliative care, however further work is required to validate these indicators and identify additional outcome indicators. Identification of key quality indicators provides a foundation for critical validation work and assessment of the impact of interventions designed to improve the quality of pediatric palliative care.
Duc J; Widger K; Johnston K; Rapoport A; Siden H; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
2016
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.294
The Role Of The Emergency Department In Pediatric Palliative Care
Objective: To explore pediatric emergency medicine healthcare providers' perspectives regarding their role in pediatric palliative care. Methodology: A qualitative study was conducted at the CHU Sainte-Justine from January to April 2016. Four interdisciplinary semi-structured focus groups were held: three involved pediatric emergency medicine staff and one interviewed the pediatrics palliative care team. These focus groups were transcribed and analysed in full using NVivo v. 21 (QSR International Inc.) to identify nodes and codes, and facilitate the emergence of themes. Data analysis borrows concepts from grounded theory by using thematic analysis and theoretical sampling. Results: A first group involving 8 pediatric emergency medicine staff members raised several limitations to providing pediatric palliative care in the emergency department (ED). These limitations included the unsuitable physical environment, constrained time and resources, lack of knowledge about the patient and his underlying medical condition, difficulties communicating, with both the patient's primary physicians and the patient's parents, and deficient training. ED staff suggested their role included evaluating the clinical situation, listening to the patient and his family, trying to establish a trusting relationship, supporting the patient and his family, and organising a rapid admission to the ward. Disagreements were encountered about two different approaches in palliative care. Some healthcare providers believed a designated and specialised team should manage all patients in pediatric palliative care. Others suggested a transversal approach, in which all healthcare providers have a role to play in the care of pediatric palliative care patients. Conclusion: Several limitations and barriers have been identified to providing high quality pediatric palliative care in a pediatric ED. The ED's role in caring for these patients remains controversial, and demonstrates two distinct philosophies for providing pediatric palliative care.
Cote AJ; Gaucher N; Payot A
Journal Of Pain And Symptom Management
2016
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Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project
BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse. METHODS: The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months." The opioid bundle includes a urine drug screen, Ohio Automated Rx Reporting System report, pill count, and screening history for drug abuse and mental health disorders. The setting was multiple CCHMC ambulatory clinics. Participants included all PACT members. RESULTS: Since implementing the new system, we have increased risk stratification for opioid misuse among outpatients from 0% to >90%. Results have been sustained for 12 months. Key processes have become reliable: obtaining informed consent and controlled substance agreements for all new patients and obtaining the opioid bundle to enable risk stratification in a consistent and timely fashion. A total of 34% of patients have been stratified as high risk, and an additional 27% have been stratified as moderate risk. CONCLUSIONS: A system to ensure safe opioid prescribing practices to all patients is critical for providers. Identifying key processes and executing them reliably has enabled the palliative care team at CCHMC to risk stratify >90% of patients receiving opioids in the ambulatory setting for opioid misuse.
Thienprayoon R; Porter K; Tate M; Ashby M; Meyer M
Pediatrics
2016
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10.1542/peds.2016-0258
Experiences In Palliative Home Care Of Infants With Life-limiting Conditions
UNLABELLED: The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n=17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved. CONCLUSIONS: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.
Kuhlen M; Holl JI; Sabir H; Borkhardt A; Jansen G
European Journal Of Pediatrics
2016
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Life Transitions Of Adolescents And Young Adults With Life-limiting Conditions
Adolescents; Life-limiting Conditions; Life Transitions; Young Adults
AIMS: A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions. METHODS: The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and AMED. Methodological quality was assessed using an established tool and the final articles included in the study were rated as moderate to high quality. Articles were then assessed based on the insight that they provided into life transitions for adolescents and young adults. RESULTS: Eighteen studies were included in the final review, with two major life transitions identified as pertinent: 'illness transition' and 'developmental transition'. These concurrent transitions were found to be relevant to adolescents and young adults with life-limiting conditions, generating complex needs. Sub-themes within the transitions were also identified. Furthermore, the illness transition was found to also impact significant others, namely family members, having physical, mental and emotional health implications and requiring them to make adaptations. CONCLUSIONS: Future research is needed to focus on adolescent and young adult perspectives to bring further insight into these key transitions, since such perspectives are currently underrepresented. Attention to the impact of the illness on the whole family would be useful to expand findings from this review.
Johnston B; Jindal-Snape D; Pringle J
International Journal Of Palliative Nursing
2016
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10.12968/ijpn.2016.22.12.608
End-of-life Care For Children With Medical Complexity: Does Advance Care Planning Matter?
Learning Objectives: For many children with medical complexity (CMC), early death is an inevitable outcome of their illness, making advance care planning (ACP) a vital component in the optimal care of this population. Studies evaluating the relationship between access to ACP and important end of life (EOL) care outcomes for CMC are lacking. We evaluated whether ACP prior to death was associated with differences in parental perceptions of suffering, quality of life (QOL), and EOL care patterns for CMC. Methods: Single center cross sectional survey study of bereaved parents of CMC < 21 years of age who received care at Boston Children's Hospital and died between 2008 and 2015. Results: 108 bereaved parents responded (65% response rate) a mean of 4.3 years after their child's death. Median age at death was 10 years [1.3-19.7], 61% died in the hospital, 27% received intensive life-sustaining therapies in the last 2 days of life, and 66% parents reported having ACP for their child. Parents of CMC who had ACP were more likely to rate their child's QOL at EOL as good to excellent (60% vs 38%; p=0.04), more likely to feel prepared about what to expect at EOL (81% vs 36%; p<0.01), and more likely to have their child die in a preferred location (83% vs 65%; p=0.05). CMC who had ACP prior to death were more likely to have documented resuscitation orders (77% vs 33%; p< 0.01) and less likely to have intensive life-sustaining therapies in the last 2 days of life (19% vs 39%; p=0.03). ACP did not impact perceived suffering at the EOL (32% vs 32%; p=0.96). Conclusions: Access to ACP is associated with improved EOL care outcomes for CMC including superior quality of life, improved parental preparedness for death, increased documentation of resuscitation orders, decreased intensive life-sustaining therapies in the last 2 days of life, and a larger proportion of children dying in a preferred location. According to their parents, however, one third of children experience suffering at EOL and this experience is not impacted by ACP. Further studies are needed to evaluate communication around symptom management at the EOL.
DeCourcey D; Silverman M; Oladunjoye A; Wolfe J
Critical Care Medicine
2016
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DOI: 10.1097/01.ccm.0000509223.50896.82
'I Have to Live with the Decisions I Make': Laying a Foundation for Decision Making for Children with Life-limiting Conditions and Life-Threatening Illnesses
Communication; Cystic Fibrosis; Decision-making; Oncology; Qualitative Research
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician-parent relationship at progression or deterioration of LLCs or LTIs. We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.
Bluebond-Langner M; Hargrave D; Henderson EM; Langner R
Archives Of Disease In Childhood
2016
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<a href="http://dx.doi.org/10.1136/archdischild-2015-310345">10.1136/archdischild-2015-310345</a>
Religion And Spiritual Care In Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual And Religious Inquiry
Decision-making; Pediatric Intensive Care Unit; Religious Belief; Spiritual Care; Spiritual History
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. MATERIALS AND MAIN RESULTS: A total of 162 surveys from parents of children hospitalized for >48 hours in pediatric intensive care unit in a tertiary academic medical center were analyzed. Forty-nine percent of all respondents and 62% of those who identified themselves as moderate to very spiritual or religious stated that their beliefs influenced the decisions they made about their child's medical care. Although 34% of all respondents would like their physician to ask about their spiritual or religious beliefs, 48% would desire such enquiry if their child was seriously ill. Those who identified themselves as moderate to very spiritual or religious were most likely to welcome the discussion (P < .001). Two-thirds of the respondents would feel comforted to know that their child's physician prayed for their child. One-third of all respondents would feel very comfortable discussing their beliefs with a physician, whereas 62% would feel very comfortable having such discussions with a chaplain. CONCLUSION: The study findings suggest parental ambivalence when it comes to discussing their spiritual or religious beliefs with their child's physicians. Given that improved understanding of parental spiritual and religious beliefs may be important in the decision-making process, incorporation of the expertise of professional spiritual care providers may provide the optimal context for enhanced parent-physician collaboration in the care of the critically ill child.
Arutyunyan T; Odetola F; Swieringa R; Niedner M
American Journal Of Hospice And Palliative Medicine
2016
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10.1177/1049909116682016