End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, De Pintelaan 185, 9000 Gent, Belgium.
Department of Medical Oncology, Ghent University Hospital, De Pintelaan 185, 9000 Gent, Belgium.
Patient Educ Couns. 2018 Jan;101(1):132-138. doi: 10.1016/j.pec.2017.06.034. Epub 2017 Jul 1.
We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients.
Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions.
Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics.
Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease.
Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information.
评估癌症患者的疾病进程、治疗方法、姑息治疗和安乐死相关信息的提供情况和信息需求。
在比利时,向大学医院就诊的癌症患者(N=620)填写了一份问卷。通过治疗肿瘤医生收集他们的癌症相关数据。在比利时,“全民姑息治疗”是一项患者的合法权益,并且在某些条件下可以实施安乐死。
约 80%的患者获得了有关疾病进程和治疗方法的信息。10%的患者获得了姑息治疗和安乐死的信息。大多数关于姑息治疗和安乐死的信息是在患者预期寿命不足六个月时提供的。然而,四分之一处于疾病轨迹早期阶段的患者,特别是那些经历了高疼痛、疲劳或恶心的患者,要求获得更多关于这些主题的信息。
许多患者希望获得比目前更多的姑息治疗和安乐死相关信息,即使是在疾病的早期阶段而非晚期阶段。
医疗保健专业人员应该更加积极主动地满足姑息治疗和可能的临终决策相关信息需求,这应根据患者的具体情况来定制,因为有些患者希望获得更多信息,而有些患者则希望获得更少信息。