Prognostic awareness, will to live and health care expectation in patients with terminal cancer

Abstract

目的: 透过对末期癌患者的访问和研究,探讨他们对病情严重度的认知和预后自觉程度,如何影响其生存意志,及其在生命的晚期的医护期望。 对象与方法: 对象是首次入住安宁护理病区的20名病人,共6男14女,平均年龄是68.9岁,全确诊为扩散性末期癌症。以半结构的面谈方式,让癌患者诉说其疾病及生活经验,内容包括住院的期望,及身、心、灵等方面的关注。采用范甘的“查验解说”进行了资料分析。 结果: 所有病人均能说出所患疾病,但没有一人是直接从医生口中确定自己的诊断。病人从自己的病征病状,院方给予的诊疗方案、及医护人员/家属的神情等途径“意会”到自己的病情严峻。病人的生存意志有三种表现: 拼命求生、无奈接受现实和要求加速死亡。生存意志与病人的生存质量相关,也影响他们对医护的期望。 结论: 医护人员要在“保密避谈”及“坦诚沟通”间取得平衡,给予病人最佳临终护理。研究结果显示医护人员跟终末期病患者“坦诚沟通”并非不可行,也不一定如传统观念般带来不良后果。反之,能够了解病人所关注和关心的事情,帮助他们安然走过最后一段日子,才符合临终关怀的宗旨。医护人员跟病人坦诚交谈有助增强彼此的互信关系,建立合理的医护期望和改善病人的生存质量。 Objective: Under the protective medical system,health care professional incline not to disclose the medical information to vulnerable patients in order to protect them from any unpleasant stimuli which might worsen their illness condition.This study aims to understand how patients’ perceived illness severity and prognostic awareness impact on their will to live and healthcare expectations. Participants & Methods: twenty newly admitted patients,6 men and 14 women,with confirmed diagnosis of metastasis cancer in a hospice ward in Shanghai participated in the study.Semi-structured interviews were used to illicit the patients’ view and experience.The interview questions include the patients’ understanding of their illness condition,concerns in different aspects of life and expectation on treatment and care.Audio-recorded interviews were verbatim transcribed and analyzed using vanKaam’s method of controlled explication. Result: although the patients did not learn their illness directly from others,they were able to capture their illness severity by observing the reaction of doctors or family members.Among them,9 patients actively sought evidence to confirm their illness condition.Although all 20 patients considered themselves gravely ill,their will to live ranged form very strong to very weak,which can be categorized into three major kinds of responses: struggling for life,letting-it-to-happen and pleading for death.The patient’s level of prognostic awareness did not have a strong association with their will to live,but the will to live was associated with their expressed quality of life concerns.The patients with more negative emotion,weaker family ties and more physical discomforts had weaker will to live.The patients who had unfinished business such as young children had the strongest will to live.The letting-it-go-happen patients were complacent that they had fulfilled their life responsibilities.Both patients who struggled for life and who pleaded for a hastened death had unrealistic healthcare expectations.The former hoped the medical staff could cure their illness whilst the latter preferred the medical staff to end their life.This is inconsistent to the concept of hospice care as dying should be treated as a natural process. Conclusion: This study shows that empathetic and open interactions with terminally cancer patients are possible.No untoward emotional reactions were noted after the interviews.The patients could receive better psychological support form the health care providers,and their needs were more realistically addressed.Furthermore,it can facilitate the family and healthcare providers to fulfill patients’ last wishes and help them to pass their last days in peace,comfort and dignity.