施設内看取りを代理意思決定し看取る過程で家族が経験した精神的負担と代理意思決定に対する想い―介護老人福祉施設に入所する認知症高齢者の家族の場合

Mental Burden Experienced by, and Factors Affecting the Emotions of, Surrogate Decision-makers for Older Adults with Dementia Residing in Long-term Care Welfare Facilities

抄録

　本研究の目的は，介護老人福祉施設内での看取りを認知症高齢者に代わって決断した家族が看取りに至るまでの過程で経験する精神的負担，および代理意思決定に対する想いに影響する要因を明らかにすることである．家族16人に対する半構成的面接のデータを，修正版グラウンデッド・セオリー・アプローチを用いて分析した．分析の結果，家族は施設内看取りの決定時期には，選択の迷いと高齢者本人や親族の意向が不明ななかで決断せざるを得ないことへの重責，看取り決断後は，高齢者が次第に痩せ細る姿への悲しみとそれに伴う決断の動揺，臨終のときが近いと覚悟する悲哀を経験していた．これら精神的負担がありながらも，代理決定者の家族が代理意思決定を後悔なく納得したものにできた要因は，実際に代理意思決定した時期だけでなく，決定後の期間にも存在しており，代理意思決定後においても継続的な支援をする必要性が示唆された．

　There is a lack of empirical studies in the existing literature investigating families in Japan who chose hospice care in long-term care welfare facilities. Therefore, this study aimed to: (1) explore the aspects of the mental burden experienced by family members who chose hospice care for older adults with dementia residing in long-term care welfare facilities; and (2) identify the factors affecting family members' emotions about surrogate decision-making. Data from semi-structured interviews with 16 family surrogate decision makers were analyzed using the modified grounded theory approach. Results regarding the aspects of mental burden indicated that: (1) at the time of surrogate decision-making, family members experienced indecision and felt great responsibility at having to make a choice where the wishes of the older adult or other relatives were unknown; and (2) subsequent to decision-making, the family experienced sadness at the older adult becoming progressively thinner, resulting in ambivalence about the decision, and felt sorrow over the older adult's impending death. Results for the factors affecting emotions about surrogate decision-making indicated that family members' emotions were influenced by the decision-making process as well as by satisfaction with hospice care at the facility. These findings suggest the need for continuous support even subsequent to surrogate decision-making.