Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families

Kaye, Erica C.; Woods, Cameka; Kennedy, Kendall; Velrajan, Srilakshmi; Gattas, Melanie; Bilbeisi, Tharwa; Huber, Rachel C.; Lemmon, Monica E.; Baker, Justin N.; Mack, Jennifer W.

doi:10.1038/s41416-021-01512-9

Cited by 13 publications

(5 citation statements)

References 39 publications

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“…However, despite this clear endorsement from patients and caregivers, time spent in these discussions remains scant and late. A recent longitudinal study of conversations between oncologists and parents of children with advancing cancer revealed that <5% of time was spent discussing advanced directives and goals of care [ 28 ]. These conversations are difficult, and oncologists may feel unprepared/untrained to have them [ 29 ].…”

Section: Discussionmentioning

confidence: 99%

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology

et al. 2022

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Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider’s perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams’ understanding of bereaved parents’ end-of-life care preferences through narratives. Bereaved parents were recruited from our institution’s Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child’s end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child’s voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. Conclusion: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child’s end of life and to remain in contact with them after death.

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Section: Discussionmentioning

confidence: 99%

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology

et al. 2022

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“…Eligibility criteria, enrollment, and informed consent processes were described previously in detail 9,19–21 and are summarized in Table 1. Briefly, we used the electronic health record to identify pediatric oncology patients with poor‐prognosis cancer and then asked the patient's primary oncologist to estimate the patient's likelihood of survival.…”

Section: Methodsmentioning

confidence: 99%

“…Eligibility criteria, enrollment, and informed consent processes were described previously in detail 9,[19][20][21] and are summarized in Table 1.…”

Section: Data Collectionmentioning

confidence: 99%

Navigating prognostic communication when children with poor‐prognosis cancer experience prolonged disease stability

Porter

Chow

Woods

et al. 2022

Pediatric Blood & Cancer

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Background: Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability. Patients and methods:In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patientparent-oncologist triads for whom the patient's disease remained stable over the 24-month study period.Results: Prognostic communication was absent in >50% of recorded conversations.Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution. Conclusions:Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.

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“…17 It has been recognised that goals of care, quality of life, living life to the fullest and comfort may be useful concepts to structure paediatric consultations around. 29 However, these are quite abstract, and may not be the most accessible constructs. The children and young people in this study frequently talked about their condition as a series of losses, and were particularly focussed on the differences between them and their peers.…”

Section: What This Study Adds?mentioning

confidence: 99%

‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition

Bristowe,

Braybrook,

Scott

et al. 2024

Palliat Med

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Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as ‘experts in their condition’. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a ‘series of (functional and social) losses’, which single them out from their peers as ‘the sick one’. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one’s language towards theirs, may enable more child-centred discussions. Expanding discussions about ‘what matters most’ with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

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Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families

Cited by 13 publications

References 39 publications

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology

Navigating prognostic communication when children with poor‐prognosis cancer experience prolonged disease stability

‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition

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