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【明報專訊】75歲的文叔是一名單身獨居長者，數年前患上慢性阻塞性肺病，去年確診為晚期肺癌。他感到很絕望，覺得人生唏噓。文叔從沒想過自己臨終安排，只是見步行步。<\/p>\n

末期病人的醫療和照顧安排，如能依從病人意願便最理想；可是踏入臨終階段時，神志可能逐漸不清，倘若病人不曾表達過其意願，突如其來的醫療決定，不但為家人帶來沉重壓力，事後還可能因而悔疚。為維護病人的自主權，「預設醫療指示」及「預設照顧計劃」兩個概念應運而生。<\/p>\n

「預設醫療指示」及「預設照顧計劃」，提倡病人當有精神能力作決定時，及早向家屬和醫護人員表達自己的臨終醫療及照顧意願；一旦病情到了末段，病人失去自決能力，家人和醫護人員便根據病人意願執行療護安排。而兩者的分別是，前者是一個臨終醫療決定，後者是指商討臨終醫療及照顧安排的過程。研究發現，病人、家屬和醫療團隊定期商量病人的意願和照顧安排，能讓病人的臨終醫療意願得以受尊重，且能減少家屬的壓力、焦慮和抑鬱情緒。<\/p>\n

有精神能力時作決定<\/p>\n

說回文叔，起初他也沒有想過自己的臨終醫療意願，每每都是「見步行步」。雖然日常起居生活仍能自理，但每當想起日後病情惡化時，內心便很孤單、不安和迷惘。<\/p>\n

今年初他由腫瘤科轉至紓緩科接受家居護理服務，並參加了「賽馬會安寧頌」的社區安寧服務計劃；在團隊協助下，文叔踏出了與家人商討臨終醫療決定的第一步。護士和社工多次探訪文叔，除了護理，還跟他聊心事。初時文叔非常消極，口邊總掛着「在等死」的話。文叔的兩個妹妹每隔兩三個月會來探望他，為了加強文叔的家庭支援，社工邀請文叔妹妹一同出席家訪；經過數次家訪後，社工看到兄妹的感情躍進了，大妹縱使行動不便，仍堅持定期探望文叔。文叔不太懂表達關懷，於是社工便鼓勵他主動致電問候妹妹，文叔照做了，親情關係進一步拉近。一次家訪時，社工與文叔探討他對臨終及死亡的想法，文叔表示自己孤家寡人，只擔心在最後階段，妹妹也難為他做醫療決定，這有可能令自己和家人承受許多不必要的痛苦。<\/p>\n

訂立「預設醫療指示」 免後顧之憂<\/p>\n

經社工的鼓勵，文叔坦誠地向妹妹表示﹕「當我的病情到末期，神志不清時，不要急救，希望無痛楚。」妹妹聽後，拍拍文叔手背，表示支持明白，文叔感到很安慰；即席文叔和妹妹還商量其他照顧安排，社工將全部記錄到「晚晴心願」內，那是一份記錄「預設照顧計劃」的文件；社工更鼓勵文叔訂立「預設醫療指示」。覆診那天，文叔在妹妹陪同下向醫生呈交「晚晴心願」紀錄，並要求醫生為他訂立「預設醫療指示」，文叔在醫生和妹妹的見證下在指示上簽署，指明當病情到了末期時，拒絕接受心肺復蘇術。<\/p>\n

自此之後，文叔感到如釋重負，更有餘力去關心身邊的人和事。文叔最近學習唱聖詩，他更把唱詩歌的片段送給妹妹聽，得到妹妹讚賞，妹妹還提出在聖誕節一起去報佳音，逗得文叔整天笑容滿面。<\/p>\n

「預設醫療指示」和「預設照顧計劃」是安寧服務重要一環，為晚期病人和家屬免除後顧之憂，透過提早溝通達成共識，讓生死兩相安。然而華人社會對死亡的討論仍存有忌諱，病人在生時，病人和家人都感到難以啓齒討論臨終照顧。「賽馬會安寧頌」計劃的其中一個目標，便是引起社會對「預設醫療指示」和「預設照顧計劃」的廣泛關注和討論，了解它的好處，充分運用它，讓病人的晚晴生活能按其意願而安排，善別人生。<\/p>\n

文：陳君寧（香港大學社會科學學院「賽馬會安寧頌」高級訓練主任）<\/p>\n

編輯：蔡曉彤<\/p>\n

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