Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

Jurrianne C Fahner; Judith A C Rietjens; Agnes van der Heide; Johannes J M van Delden; Marijke C Kars

doi:10.1111/apa.15061

Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

Jurrianne C Fahner, Judith A C Rietjens, Agnes van der Heide, Johannes J M van Delden, Marijke C Kars

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.

Original language	English
Pages (from-to)	1011-1018
Number of pages	8
Journal	Acta Paediatrica
Volume	109
Issue number	5
DOIs	https://doi.org/10.1111/apa.15061
Publication status	Published - May 2020

Keywords

advance care planning
communication
paediatric palliative care
shared decision-making

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title = "Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning",

abstract = "Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.",

keywords = "advance care planning, communication, paediatric palliative care, shared decision-making",

author = "Fahner, {Jurrianne C} and Rietjens, {Judith A C} and {van der Heide}, Agnes and {van Delden}, {Johannes J M} and Kars, {Marijke C}",

note = "Funding Information: This study was supported the Netherlands Organisation for Health Research and Development (Grant number 844001206). The funding source had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; and decision to submit the manuscript for publication. The authors declare that they have no financial relationship with this organisation that sponsored the research We thank all respondents for their contribution to this study. We thank Elmar Hulstijn for his support with NETQ Healthcare. We thank Tony Sheldon for his language editing service. We are grateful to the people with whom we liaised in the centres participating for their assistance in inviting paediatricians to participate in the study. Publisher Copyright: {\textcopyright} 2019 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica",

year = "2020",

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doi = "10.1111/apa.15061",

language = "English",

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AU - Fahner, Jurrianne C

AU - Rietjens, Judith A C

AU - van der Heide, Agnes

AU - van Delden, Johannes J M

AU - Kars, Marijke C

N1 - Funding Information: This study was supported the Netherlands Organisation for Health Research and Development (Grant number 844001206). The funding source had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript; and decision to submit the manuscript for publication. The authors declare that they have no financial relationship with this organisation that sponsored the research We thank all respondents for their contribution to this study. We thank Elmar Hulstijn for his support with NETQ Healthcare. We thank Tony Sheldon for his language editing service. We are grateful to the people with whom we liaised in the centres participating for their assistance in inviting paediatricians to participate in the study. Publisher Copyright: © 2019 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica

PY - 2020/5

Y1 - 2020/5

N2 - Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.

AB - Aim: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. Methods: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. Results: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. Conclusion: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.

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Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning

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