Witkamp Erica, Droger Mirjam, Janssens Rien, van Zuylen Lia, van der Heide Agnes
Department of Public Health, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands; Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands; Faculty of Nursing and Center of Expertise in Care Innovations, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands.
Department of Public Health, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands; Department of Metamedica, EMGO+, VU Medical Center, Amsterdam, The Netherlands.
J Pain Symptom Manage. 2016 Aug;52(2):235-42. doi: 10.1016/j.jpainsymman.2016.02.009. Epub 2016 Apr 15.
Hospital care and communication tend to be focused on the individual patient, and decision making is typically based on the principle of individual autonomy. It can be questioned whether this approach is adequate when a patient is terminally ill.
Our aim was to explore the involvement and experiences of relatives in the hospital during the patient's last phase of life.
This study was embedded in a retrospective questionnaire study on the quality of dying of a consecutive sample of patients who died in a general university hospital in The Netherlands. We performed a secondary qualitative analysis of relatives' comments and answers to open questions. Relatives of 951 deceased adult patients were asked to complete a questionnaire; 451 questionnaires were returned and analyzed for this study.
Relatives expressed a need for 1) comprehensible, timely, and sensitive information and communication, 2) involvement in decision making, 3) acknowledgment of their position, 4) being able to trust health care staff, and 5) rest and privacy. When relatives felt that their role had sufficiently been acknowledged by health care professionals (HCPs), their experiences were more positive.
Relatives emphasized their relation with the patient and their involvement in care of the patient dying in the hospital. An approach of HCPs to care based on the concept of individual autonomy seems inadequate. The role of relatives might be better addressed by the concept of relational autonomy, which provides HCPs with opportunities to create a relationship with relatives in care that optimally addresses the needs of patients.
医院护理和沟通往往聚焦于个体患者，决策通常基于个体自主原则。当患者处于绝症末期时，这种方法是否足够值得质疑。
我们的目的是探讨亲属在患者生命最后阶段在医院中的参与情况和经历。
本研究纳入了一项关于荷兰一家综合大学医院连续死亡患者死亡质量的回顾性问卷调查研究。我们对亲属对开放式问题的评论和回答进行了二次定性分析。951名成年死亡患者的亲属被要求填写问卷；451份问卷被收回并用于本研究分析。
亲属表示需要1）易懂、及时且贴心的信息与沟通，2）参与决策，3）对其地位的认可，4）能够信任医护人员，以及5）休息和隐私。当亲属感到医护人员充分认可他们的角色时，他们的体验会更积极。
亲属强调了他们与患者的关系以及他们在照顾临终住院患者中的参与。基于个体自主概念的医护人员护理方法似乎并不充分。亲属的角色或许可以通过关系自主概念得到更好的体现，这为医护人员提供了与亲属建立护理关系的机会，从而能最佳地满足患者需求。
