告知还是隐瞒——直肠癌行肠造口手术患者医患共享决策的真实体验

Inform Consent or Conceal the Truth: A Qualitative Study on the Real Experience of Sharing Decision-making between Doctors and Patients in Rectal Cancer Patients Undergoing Enterostomy

为了探讨直肠癌行肠造口患者关于治疗方案共享决策的现状,了解患者被告知或隐瞒手术方案的真实感受,为制定更有利于患者的共享决策方案提供依据。采用现象学方法,对在西安市某医院因直肠癌行过肠造口术后的12名患者进行半结构化访谈,对访谈数据进行资料分析,提炼主题。共提炼出负性情绪、病情告知不足、造口自我接纳和护理三个主题。发现家属替代式决策模式在直肠癌肠造口患者临床治疗方案确定中占据主导地位,病情告知不足影响了患者对造口的适应与接受,引发负性心理反应。建议医务人员应个体化、客观评价患者参与治疗决策,恰当运用沟通技巧告知病情,在不伤害的原则下尊重患者自主权利,真正维护患者权益。

The purpose of this study is to explore the current situation of the sharing decision-making of treatment plan for the rectal cancer patients undergoing enterostomy,to understand the real experience of patients who are informed or concealed about the operation plan,so as to provide a basis for making a more favorable sharing decision plan for patients.In this study,the phenomenological method was used to conduct semi-structured interviews with 12 patients who had undergone enterostomy for rectal cancer in a hospital in Xi’an city.The interview data were analyzed and the theme was extracted.Three themes were extracted:negative emotion,insufficient information about the disease,self-acceptance of enterostomy and nursing.It was found that the family substitution decision-making model was the dominant position in the determination of the clinical treatment plan of rectal cancer patients with enterostomy.Insufficient information would affect patients’adaptation and acceptance of enterostomy,and lead to negative psychological reaction.Therefore,it is suggested that medical staff should evaluate patients’participation in treatment decision-making individually and objectively,properly use communication skills to inform patients of the disease,respect patients’independent rights under the principle of nonmaleficence and truly safeguard patients’rights and interests.