精神分裂症病友家屬參與醫療決策之初探

Abstract

家庭是我國醫療的基本單位，不論從衛生政策、就醫文化、家庭倫理，家屬都被視為責無旁貸的照顧者，扮演醫療中重要第三者的角色，協助生病家人的就醫與生活照顧等事務。近年來家屬充權的概念逐漸受到重視，國內外均有協助家屬參與醫療及使用能力提升的充權方案，但長久以來，病友被視為醫療照顧的主體，文獻探討時也發現，過去醫療決策參與的相關研究多以病友為主要探討對象，缺乏家屬聲音的呈現。考量我醫療文化的特殊性，家庭才是醫療決策的基本單位，本研究期待凸顯照顧者在醫療決策的參與角色，透過照顧者觀點了解家屬參與醫療決策的歷程。 本研究以個別深入訪談的方法蒐集九位照顧者的生命故事，透過他們對照顧經驗的回溯，來了解家屬面對醫療決策時機時，如何考量醫用互動和病友療自主權、如何平衡家庭整體和病友的個人需求、以及如何因應父權的醫療體系取得滿足的醫療內容等。 研究結果發現，家庭角色是選擇照顧者的主要條件，我國家庭通常是父母優先、長兄姐接替。照顧者以多元的型態展開醫療決策的參與行動，透過搜尋知識、表達意見和選擇決策來進行參與，疾病的階段影響照顧者與醫療專業面對決策時互動形態。參與決策時，病友的病情穩定、醫療配合度、自主求醫能力、決策議題等，影響照顧者對病友自主權的考量，但不可否認的事實是，面對疾病可能復發的焦慮，讓照顧者很難真正放手讓病友自主決策。不同家庭對於醫療決策的運作受到家庭權力結構和互動關係的影響，而有不同的參與型態，同時發現病友的居住安排是最容易受到家庭脈絡影響的決策議題。從個別專業人員的服務態度或是醫療體系的管理制度，都影響照顧者對服務使用的感受，照顧者嘗試不同的回應方式來爭取病友的醫療權益，但病友的配合意願卻是照顧者採取發聲或出走等積極回應行動能否成真的主要關鍵。研究最後依據上述的研究發現與結論，提出以下幾點建議： （一）從基礎教育扎根：建構生物醫學和社會人文並重的養成教育。 （二）由臨床訓練落實：強化面對服務對象時的互動與會談技巧。 （三）不只是家屬，專業人員也需要充權。 （四）建構全面與多元的醫療照護服務：增加醫療體系與家屬/病友團體的連結 （五）從醫療政策作起：正視照顧者的保健工作 （六）重新檢討服務流程，以多元的管道增加服務的可及性

Family is the basic unit for national medical policy in Taiwan. Family members are recognized as the caregiver from the standpoints of national medical policy, medical culture, and family ethic. Family members are being portrayed as an important third party, and are responsible for the patients seeking medical and daily cares. In recent years as the family empowerment becomes more emphasized, there are empowering methods designed, both in domestic and international environments, to assist the family members to enhance their participation in medical cares. However, the patients have been treated as the main party in the medical care system for a period of long time; the scenario that the patients are being treated as the main party of the medical decision and involvement of decision making while lack of participation from the family members is also shown during the process of this research. According to the special criteria that the family members are actually the basic party of the medical decision in our medical culture, it is expected that this research will emphasize the role of caregiver in the process of medical decision making, and to understand the process of medical decision making of family members from the caregivers’ point of view. In this research, nine cases of Schizophrenia patients are being studied through the method of individual depth interview. By reviewing from their experiences of care giving, it is the goal to understand how professional-user interaction and patient rights come into place when the family members are facing the moment of making medical decisions. It is also the intention of this study to understand how to reach balance between the needs of the patients and his/her families, and it is also important to understand how to access satisfying medical care under the patriarchy medical system. As the research reveals, parents of the family usually are recognized as the first priority to give care in our naiton’s families, followed by elder brothers and sisters. Various of methods such as researching (for options), expressing (ideas) and selecting (decisions) are being applied to by the caregiver in order to participate in the medical decisions. However, the phase of the sickness would usually affect the interaction between the patients and caregivers when it comes to making medical decisions. The stability of the patients, his/her cooperation to the medical process, his/her mobility to seek for medical care, issues of medical condition and knowledge level of medical information would play roles when evaluating the level of medical autonomy the patients would be given from the caregiver’s point of view. However, it is undeniable that the anxiety of the possibility of the sickness to return usually makes it difficult for the caregiver to grant the privilege of making medical decision to the patient him/herself. The family power structure and member-interaction within in families are the elements to affect the process and participation of making medical decisions. It is clear to see from the research that the living arrangement is affected the most by the family network. Professional care giving methods and medical system management can both make impact on how the care giver feels about the medical care. The care giver would try to apply different kinds or response to the current medical system in order to access most medical rights for the patients. According to the above findings and conclusions, the following suggestions are being made. （一）Ground root education is needed. It is important to provide the education that emphasizes both bio-medical profession and social humanitarian. （二）Hands-on training is vital. It is also vital to give the training of communication skills to the professionals. （三）Empowerment to professionals is also needed. Family members are not the only party who needs empowerment. （四）Establish all-around and varsity medical care system. It will increase the bond between the medical care system and patients/patients families. （五）Medical policy review is crucial. The mental health of care giver is undeniable. （六）Service process review is fundamental. Service should be equipped with more channels and should be more reachable.