聆聽受苦之聲：從「咱們」關係析究慢性病照顧

Listening to the Chronic Illness Sufferers: A Phenomenological Perspective

本文將從「建構」、「詮釋」和「存有」三重構面，探討慢性病思者的照顧議題。首先，經由慢性病身體作為中介平台，說明慢性病照顧是一種生活經驗的完形關係轉換，故僅著重身體層次的症狀控制照顧模態，其實是一種社會建構下的技術導向產物。其次，回到疾病詮釋模式的討論，還原患者的疾苦病痛之聲。其次，從存有開顯的立場，提出以照顧自己／關切他人為複合體的「咱們」位元作為一種照顧模態，得以回應受苦此有「存在上的掛慮」之召喚；進而呼應慢性病什麼也不是，幾乎可以看作是一種「生命本體意義遭受侵襲之苦」的生存事件論點。最後，本文抵達現象學心理學的園地，反思以「咱們」關係為位元的照顧倫理踐行理由；透過本研究的發聲，相信得以對慢性病患者的活現經驗，注入異質性的理解窗口，使「咱們」的存有遺忘，不再成為人類世界裡失落的連帶。同時，本文以為，在臨床處境下，照顧自己／關切他人所複合的關係，也可說是一種本土脈絡照顧形態的展演。期許文本的立場，可以為建立「以照顧增補於治癒」、「以生活關懷增補於專業治療」及「照顧現象增補於機構診療」的心理照顧領域，奠下一點基礎。

The paper aims to explore issues concerning the care of the chronic illness sufferers from three perspectives. First, from the perspective of social construction, the management of chronic illness is so much focused on the symptom control that the physical, psychological and the social progress of the patient’s gradual loss of integrity as a holistic person is ignored. Second, from the hermeneutics, we will examine the need for the patients of chronic illness to resume their voice, and how it could be done. Third, a “we-ness” care pattern that emphasizes an ontological care is proposed based upon an evocation of the patients’ need for empathy. Last but not least, from the phenomenological psychological perspective, this “we-ness” care pattern will be examined from an ethical point of view. Unlike patients with an acute illness, whose diseases can be cured and their body restored to health within a relatively short time, patients with chronic illness have to start up a new life with a deformed physical situation. In this article, the stories of the chronically ill are reconstructed from two selective narratives in other researches. It is hoped that through attentive listening, a heterogeneous but comprehensive understanding of the needs of the chronic illness patients can be covered. And by enacting a “we-ness” care pattern, we can see the chronically ill patients as variants situated along a continuum of modes of beings in the world and further provide them with an ontological system that can offer healing by taking care of their medical/social/psychological and other needs.