Laryionava Katsiaryna, Hauke Daniela, Heußner Pia, Hiddemann Wolfgang, Winkler Eva C
Department of Medical Oncology, National Center for Tumor Diseases, Programme for Ethics and Patient-Oriented Care in Oncology, Heidelberg University Hospital, Heidelberg, Germany.
Institute for History and Ethics of Medicine, Centre for Health Sciences, Martin Luther University Halle-Wittenberg (Saale), Germany.
Oncologist. 2021 May;26(5):e831-e837. doi: 10.1002/onco.13557. Epub 2020 Oct 26.
Family communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists' and nurses' perceptions of family involvement in decision making about forgoing cancer-specific treatment in patients with advanced cancer.
Qualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.
We could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients' autonomy: (a) a patient-focused approach in which a patient's independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients' family in decision making and strived for building consensus and resolving conflicts.
The main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient's family in understanding of a patient's incurable condition and to identify a patient's preference for therapy.
This study focused on oncologists' and oncology nurses' perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients' emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.
家庭沟通在临终决策中日益被视为一个重要因素。然而，在肿瘤学环境中，家庭在决策中的作用研究较少，在这种环境中，大多数患者直到临终时仍保持意识并能够交流。本研究的目的是探讨肿瘤学家和护士对晚期癌症患者放弃癌症特异性治疗决策中家庭参与的看法。
根据扎根理论方法，对22名肿瘤学家和7名肿瘤学护士进行了定性半结构化访谈，并对结果进行了分析。研究结果是在临终时家庭角色的临床和伦理辩论背景下进行讨论的。
我们可以确定肿瘤学家和护士在家庭参与方面共有的两种方法。这些方法可以部分地通过对患者自主权概念的不同理解和定义来解释：（a）以患者为中心的方法，其中患者决策的独立性是肿瘤学家的首要任务；（b）以家庭为重点的调解方法，其中肿瘤学家和护士在决策中赋予患者家庭积极作用，并努力达成共识和解决冲突。
主要挑战在于让家庭参与进来，增强他们对患者的积极影响，避免消极影响。因此，肿瘤学家和肿瘤学护士的任务是支持患者家庭理解患者的不治之症，并确定患者对治疗的偏好。
本研究关注肿瘤学家和肿瘤学护士对晚期癌症患者（能够在医院环境中交流）治疗限制决策中家庭参与的看法。肿瘤学家和肿瘤学护士应意识到家庭参与的积极方面和挑战。积极方面包括患者的情感支持以及在理解和管理治疗决策信息方面的支持。挑战包括家庭在治疗目标方面的不同偏好，这可能成为高级护理计划的障碍，以及家庭可能增加的心理负担。尤其具有挑战性的是让年轻患者的家庭参与进来，因为需要更多关注、更多时间投入和详细讨论。
