"More Life and More Days"-Patient and Care Characteristics in a Specialized Acute Pediatric Palliative Care Inpatient Unit
Palliative care; Palliative Care; Pediatrics; Inpatient; Hospital units; Specialized pediatric palliative care
Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016-2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients' age (1-35.5 years, median: 4.8 years) and length of stay (1-186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2-20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients' predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from?>?6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit. CONCLUSION: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families. WHAT IS KNOWN: • Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity. • There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described. WHAT IS NEW: • Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code. • The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.
Stoesslein S; Gramm JD; Bender HU; Müller P; Rabenhorst D; Borasio GD; Führer M
European Journal of Pediatrics
2023
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/s00431-023-04813-8" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-04813-8</a>
"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making
Critical Illness; Decision Making; Infant; parental involvement; prematurity; shared decision making (MeSH); withdrawing treatment; withholding treatment (MeSH)
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.
Beyer M F; Kuehlmeyer K; Mang P; Flemmer AW; Führer M; Marckmann G; de Vos M; Schouten ES
Children
2022
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<a href="http://doi.org/10.3390/children10010046" target="_blank" rel="noreferrer noopener">10.3390/children10010046</a>
How to Open the Door: A Qualitative, Observational Study on Initiating Advance Care Discussions with Parents in Pediatric Palliative Care
pediatrics; advance directives; advance care discussions; communication strategies; pediatric advance care planning
Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation for all participants. Objectives: Our goal was to investigate the first step of ACD and identify its challenges and helpful communication strategies to develop a conversation guide for initiating the pACP process and structure the conversational opening. Methods: We performed a participant observation of 11 initial ACD and 24 interviews with 13 HCPs and 20 parents of 11 children cared for by 3 different palliative care teams in southern Germany. Qualitative data collection was supplemented by a questionnaire. Content analysis and conversation analysis were used for evaluation. Results: Parents and HCPs start the process with different expectations, which can lead to misunderstandings and confusion. HCPs gain parental cooperation when they express the purpose of the meeting clearly and early, provide structure and guidance, and give parents time to talk about their experiences and feelings. Addressing dying and death is hard for both sides and requires a sensitive approach. Conclusions: Initiating ACD is extremely challenging for all participants. HCPs and parents should clarify expectations and aims at the beginning of the conversation. Future research should focus on how HCPs can be trained for this task and how the right timing for introducing ACD to families can be identified. Clinical Trial Registration number 049-12.
Daxer M; Monz A; Hein K; Heitkamp N; Knochel K; Borasio GD; Führer M
Journal of Palliative Medicine
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/10.1089/jpm.2021.0183" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0183</a>
Participatory development of a modular advance care planning program in pediatric palliative care (MAPPS)
Advance care planning; advance directives; decision-making; end-of-life; palliative care; pediatric
CONTEXT: Decision-making in pediatric palliative care concerns mainly children without decision-making capacity. It has to balance the child's best interests, parental responsibility and the impact on the family system. OBJECTIVES: Advance care planning (ACP) supports decision making about future medical care. A consistent pediatric approach is still missing. This study aimed at developing a pediatric ACP program (pedACP) meeting specific needs of children, parents and professionals. METHODS: Bereaved parents of children with life-limiting conditions and professionals involved in pedACP participated. Employing the technique of constellation analysis, they collaboratively assigned content, actors, tools and warning notes about pedACP along a timeline. The researchers analysed, systematized and translated these results into a pedACP program draft, which was revised by the participants. RESULTS: The participants' overall focus was on the children's quality of life and an individualized interdisciplinary communication process along the disease trajectory. The program was conceptualized in modular design with fixed modules at the beginning (to build a trustful relationship and frame the process) and at the end (to summarize results and prepare implementation). The main discussions are structured in flexible modules (About the child, Emergencies, Disease-specific scenarios and End of life care). General themes cover timing, communication, engaging children and structural issues. The participants appreciated the program's comprehensiveness and flexibility. CONCLUSION: Parents and professionals combined their perspectives on reflecting goals of care and the complexity of pedACP. They perceived the resulting modular program as suitable for meeting the individual needs of patients, families and professional stakeholders.
Knochel K; Zaimovic V; Gatzweiler B; Hein KK; Heitkamp N; Monz A; Reimann D; Borasio GD; Führer M
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.2021.09.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.09.013</a>
Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors
Background:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%?85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.Aim:We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.Design:This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.Setting/participants:A total of 10 professionals from three different pregnancy counseling services participated in the study.Results:The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.Conclusion:A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
Flaig F; Lotz JD; Knochel K; Borasio GD; Führer M; Hein K
Palliative Medicine
2019
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<a href="http://doi.org/10.1177/0269216319834225" target="_blank" rel="noreferrer noopener">10.1177/0269216319834225</a>
Pediatric advance care discussions between health care professionals and parents of children with a life-limiting disease: A qualitative interview study
semi structured interview; child; clinical article; conference abstract; conversation; data analysis; emotion; female; Germany; health care personnel; human; male; medical information; palliative therapy; perception; writing
Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging by all participants. Research objective: We aimed to investigate the perception of ACDs from the perspective of both HCPs and parents and to gain more details on obstacles, barriers and helpful communication strategies during the course of ACDs. Methods: Design: We used an ethnographic approach including (1) participant observation of ACDs between HCPs and parents, and (2) semi-structured interviews with all participants after the discussion. Conversation analysis and descriptive coding were used for data analysis. Setting/participants: We observed 15 discussions and conducted 31 interviews with 15 HCPs and 20 parents of eleven children cared for by three different palliative care teams in southern Germany. Results: HCPs evaluated the quality of ACD based on their perception of the emotional state and capacity of self-reflection of parents, and on the degree of correspondence between the HCP's and the parents' perspectives. In contrast, parents' evaluation focused on (1) perceived support in deciding upon medical treatment for their child, (2) the HCPs understanding of their family situation and (3) the structure provided by HCPs throughout the conversation. They appreciated when HCPs did not have time restrictions and stressed the importance of confidence and sympathy towards their discussion partners. Knowing each other made the discussion easier for parents and HCPs. Both sides supported the idea of two HCPs from different professions participating in ACD, even though parents preferred that physicians lead the conversation in order to provide them with the necessary medical information. Conclusions: HCPs and parents perceive ACD differently. Parents wish for structure and clear instructions that help them to prepare and decide for future crisis situations. Therefore, HCPs should adapt the structure of their ACDs to the parents' needs. In addition, our findings suggest that ACD should be conducted by HCPs familiar to family and child.
Daxer M; Monz A; Heitkamp N; Hein K; Knochel K; Jox R; Borasio GD; Fuhrer M
Palliative Medicine
2018
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<a href="http://doi.org/10.1177/0269216314552091" target="_blank" rel="noreferrer noopener">10.1177/0269216314552091</a>
Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study
DNAR Outcomes
2014-11
Lotz JD; Jox RJ; Borasio GD; Führer M
Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1177/0269216314552091" target="_blank" rel="noreferrer">10.1177/0269216314552091</a>
Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers
Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital. Methods: All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Hausliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p<0.05) and caregivers (p<0.001), as did the patients' perception of quality of palliative care (POS, p<0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p<0.001; HPS, p<0.001). Conclusions: The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.
Groh G; Vyhnalek B; Feddersen B; Führer M; Borasio GD
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2012.0491" target="_blank" rel="noreferrer">10.1089/jpm.2012.0491</a>
Specialized Pediatric Palliative Home Care: A Prospective Evaluation
Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). Conclusions: The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.
2013-10
Groh G; Borasio GD; Nickolay C; Bender HU; von Lüttichau I; Führer M
Journal Of Palliative Medicine
2013
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Journal Article
<a href="http://doi.org/10.1089/jpm.2013.0129" target="_blank" rel="noreferrer">10.1089/jpm.2013.0129</a>
Pediatric Advance Care Planning: A Systematic Review
Child; Humans; Palliative Care; end of life; Pediatric; advance care planning; DNAR; Pediatrics/td [Trends]; Advance Care Planning/td [Trends]; pediatric advance life support [PALS]; Pediatrics/mt [Methods]; Randomized Controlled Trials as Topic/mt [Methods]
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a systematic review on empirical literature on pediatric ACP (pACP) to assess current practices, effects, and perspectives of pACP. METHODS: We searched PubMed, BELIT, and PSYCinfo for empirical literature on pACP, published January 1991 through January 2012. Titles, abstracts, and full texts were screened by 3 independent reviewers for studies that met the predefined criteria. The evidence level of the studies was assessed. Relevant study outcomes were retrieved according to predefined questions. RESULTS: We included 5 qualitative and 8 quantitative studies. Only 3 pACP programs were identified, all from the United States. Two of them were informed by adult programs. Major pACP features are discussions between families and care providers, as well as advance directives. A chaplain and other providers may be involved if required. Programs vary in how well they are evaluated; only 1 was studied by using a randomized controlled trial. Preliminary data suggest that pACP can successfully be implemented and is perceived as helpful. It may be emotionally relieving and facilitate communication and decision-making. Major challenges are negative reactions from emergency services, schools, and the community. CONCLUSIONS: There are few systematic pACP programs worldwide and none in Europe. Future research should investigate the needs of all stakeholders. In particular, the perspective of professionals has so far been neglected.
2013-02
Lotz JD; Jox RJ; Borasio GD; Führer M
Pediatrics
2013
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Journal Article
<a href="http://doi.org/10.1542/peds.2012-2394" target="_blank" rel="noreferrer">10.1542/peds.2012-2394</a>
Neurological palliative care in children
palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017
Fuhrer M
Journal Of The Neurological Sciences
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/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">10.1016/j.jns.2017.08.093</a>
Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals
Journal of Palliative Medicine Briefings
Abstract Objectives: Little data are available on palliative home care for children. The objective of this study was to evaluate the effectiveness of a specialized pediatric palliative home care team (PPHCT) as experienced by parents and health care professionals (HCPs). Methods: Parents and HCPs involved in the care of terminally ill children who died and whom the PPHCT was in charge of were surveyed with questionnaires focusing on satisfaction with the PPHCT, satisfaction with the course of the dying phase, and the development of anxiety, depression, and prolonged grief disorder. Results: Forty-three parent dyads participated (return rate, 88%). Satisfaction with the PPHCT scored a median of 10 (numeric rating scale, 0-10). The child's death was predominantly experienced as very peaceful (median, 9); 71% died at home. According to parents, involvement of the PPHCT led to highly significant (p<0.001) improvements in the children's symptoms and quality of life, as well as in aspects of communication and administrative barrier reduction. Anxiety was detected in 25% of parents, depression in 19%, and prolonged grief disorder in 13%. HCPs (return rate, 83%) evaluated all investigated care domains (particularly cooperation/communication/family support) as being significantly improved (p<0.001). Thirty-five percent of HCPs felt uncertain concerning pediatric palliative care; 79% would welcome specific training opportunities. Conclusions: Involvement of a PPHCT is experienced as a substantial improvement of care by parents and HCPs. Coordination of palliative care during the last phase of life appears to be an important quality factor for the home care of dying children and their families.
Vollenbroich R; Duroux A; Grasser M; Brandstatter M; Borasio GD; Fuhrer M
Journal Of Palliative Medicine
2012
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Journal Article
<a href="http://doi.org/10.1089/jpm.2011.0196" target="_blank" rel="noreferrer">10.1089/jpm.2011.0196</a>
"Let's bring her home first." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care
Act Categories; Diagnosis; Home Care; Nervous System; Place Of Death; Specialized Pediatric Palliative Care
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death. METHODS: Retrospective single center chart analysis of 212 consecutive patients on SPPHC (2009-2015). RESULTS: Main International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place. CONCLUSION: Our data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bender HU; Riester MB; Borasio GD; Fuhrer M
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.jpainsymman.2017.04.006" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.04.006</a>
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Perception; Procedures; Adult; Cross Sectional Study; Death; Dyspnea/di [diagnosis]; Female; Home Care; Human; Male; Pain/di [diagnosis]; Palliative Therapy; Parent; Pediatrics; Psychology; Quality Of Life; Questionnaire; Retrospective Study; Standards; Symptom Assessment
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care. OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
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10.1017/S1478951515000462
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Adult; Cross-sectional Studies; Death; Dyspnea/diagnosis; Dyspnea/psychology; Female; Home Care Services/standards; Humans; Male; Pain/diagnosis; Pain/psychology; Palliative Care/methods; Palliative Care/psychology; Parents/psychology; Pediatrics/methods; Perception; Quality Of Life/psychology; Retrospective Studies; Surveys And Questionnaires; Symptom Assessment/psychology
End-of-life Symptoms; Pediatric Palliative Home Care; Symptom Perception
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.
METHODS:
In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
RESULTS:
Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1017/S1478951515000462
"hope For The Best, Prepare For The Worst": A Qualitative Interview Study On Parents' Needs And Fears In Pediatric Advance Care Planning.
Advance Care Planning; Advance Directive; Decision-making; Pediatrics; Resuscitation Orders; Terminal Care
BACKGROUND:
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning.
AIM:
We aimed to investigate parents' views and needs regarding pediatric advance care planning.
DESIGN:
We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña.
SETTING/PARTICIPANTS:
We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender.
RESULTS:
Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning.
CONCLUSION:
Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families.
Lotz JD; Daxer M; Jox RJ; Borasio GD; Fuhrer M
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316679913