Background

In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied.

Methods

We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches.

Results

One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient–parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions.

Conclusions

Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.

中文翻译：

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围绕姑息治疗原则和肿瘤学家、患有晚期癌症的儿童和家庭之间的预先护理计划进行沟通

背景

在医学肿瘤学中，姑息治疗原则和预先护理计划通常在疾病后期讨论，从而限制了指导目标一致护理的对话时间。在儿科肿瘤学中，关于姑息治疗原则和预先护理计划的交流频率、时间和内容仍未得到充分研究。

方法

我们记录了肿瘤学家、患有晚期癌症的儿童及其家人在疾病轨迹中的连续疾病重新评估对话，直到死亡或最后一次疾病进展后 24 个月。进行内容分析以确定主题频率、时间和沟通方式。

结果

为 17 名患有晚期癌症的患者-父母二人组录制了 141 次疾病重新评估讨论。从 2400 分钟的记录对话开始，119 分钟（4.8%）包括关于姑息治疗原则或预先护理计划的讨论。大多数对话发生在疾病进展之后。内容分析揭示了不同的沟通方法，用于围绕护理目标、生活质量、舒适度和限制侵入性干预的考虑进行讨论。

结论

姑息治疗原则很少在进展性疾病儿童的进展性疾病中讨论。引导这些对话的沟通策略可以为教育和临床干预的发展提供信息，以鼓励就姑息治疗原则进行早期对话，并为患有高危癌症的儿童及其家人提前制定护理计划。