以紮根理論探討年輕晚期癌症病人對生命末期照護模式之決策歷程

Abstract

研究背景： 青少年與年輕成人（Adolescents and Young Adults, AYAs）在罹患晚期癌症後，需面對艱難的生命末期醫療決策。該族群正處於生命發展與建立自主的關鍵階段，對死亡的議題往往感到衝突與抗拒，常陷於醫療選擇與家庭倫理之間的兩難。儘管研究顯示AYAs傾向選擇舒適導向的照護，實際上卻經常接受高強度治療，導致過度醫療使用與生活品質下降，原因值得探討。但是現有文獻多源自西方國家，台灣針對AYAs末期照護決策歷程的本土研究仍付之闕如。 研究目的： 利用紮根理論探究年輕晚期癌症病人的生命末期照護決策歷程，並建立相關的概念架構。 研究方法： 本研究採質性研究設計，運用紮根理論（Grounded Theory）方法學進行資料收集與分析。研究期間自2024年7月至2025年4月，於台灣北部一所醫學中心招募21位癌症病患，參與者於15至39歲之間被診斷為癌症，並曾經歷腫瘤轉移且第一線治癒性治療無效。研究初期採立意取樣，並依資料分析結果進行理論性抽樣，直至資料達飽和為止。資料蒐集方法包含半結構式深度訪談及病歷審查。每位受訪者接受兩次深度訪談，以探討照護偏好的時間變化與影響因素。資料經逐字轉錄後，依紮根理論之三階段編碼流程進行分析（開放性編碼、主軸編碼與選擇性編碼），並運用持續比較法（constant comparative method），自320個初始概念中歸納出30個範疇、9個次主題、4個歷程主題與1個核心主題。 研究結果： 本研究共完成38次訪談，受訪者平均年齡為34歲，女性佔57.1%，多數為未婚(81%)、大學以上學歷(81%)，且父母健在(95.2%)。診斷以惡性肉瘤(28.6%)與大腸癌(19.0%)略多。資料分析歸納出一個核心主題「在我的人生謝幕裡勾勒『我們』的生命末期醫療決策」，四個歷程主題：「將決策行為推到幕前」、「有口難言的決策」、「醞釀共識」與「聚光決策」。病人的醫療決策歷程呈現出隨病情進展、身心變化與社會互動而持續調整的動態特性，反映其在自我照護偏好與家人期待之間的反覆拉鋸與抉擇。影響其決策的關鍵因素包括治療成效、經濟負擔、生活品質、家人照顧負擔、醫病溝通品質與親情牽絆等。儘管AYAs多具備主體性與決策意願，實際選擇常會配合家人意見與醫療建議，但在病情惡化階段，會傾向轉向舒適導向的照護模式。 研究結論： 本研究發現，台灣AYAs的末期照護決策歷程呈現變動性與文化敏感性，其末期醫療選擇並非單一個體決定，而是在家庭與醫療團隊共同互動中逐步形成。決策過程中普遍面臨自主與顧家、舒適與延命等價值拉鋸，顯示醫療團隊在協助平衡個人願望與家人情感中扮演關鍵角色。建議未來實務應重視AYAs族群於末期照護中的特殊需求，發展具文化適切性與在地脈絡的照護模式，強化家庭與醫療團隊的協作機制，以提升其生命末期照護決策的品質與整體照護經驗。

Background: Adolescents and young adults (AYAs) diagnosed with advanced cancer face challenging end-of-life (EOL) medical decisions. Positioned at a critical developmental stage marked by the pursuit of autonomy, many AYAs experience inner conflict and resistance when confronting issues related to death, often feeling torn between medical choices and family expectations. While studies have shown that AYAs generally prefer comfort-oriented care, they frequently receive high-intensity treatments in practice, leading to overtreatment and diminished quality of life—an inconsistency that warrants further investigation. However, most existing literature originates from Western countries, and there is a paucity of research exploring the EOL decision-making process of AYAs in Taiwan. Purpose: This study aimed to explore the end-of-life care decision-making process of young patients with advanced cancer using grounded theory and to construct a corresponding conceptual framework. Methods: This qualitative study adopted a grounded theory methodology for data collection and analysis. Between July 2024 and April 2025, 21 cancer patients were recruited from a medical center in northern Taiwan. Participants were aged 15 to 39 at diagnosis and had experienced tumor metastasis with failure of first-line curative treatment. In the initial phase of the study, purposive sampling was employed, followed by theoretical sampling based on the results of data analysis, until data saturation was reached. Data collection included semi-structured in-depth interviews and medical chart reviews. Each participant was interviewed twice to explore changes in care preferences over time and the factors influencing those changes. Transcripts were analyzed using the three-stage coding process of grounded theory—open, axial, and selective coding—combined with the constant comparative method. From 320 initial concepts, the analysis yielded 30 categories, 9 subthemes, 4 process themes, and 1 core theme. Results: A total of 38 interviews were conducted. Participants had a mean age of 34 years; 57.1% were female, 81% were unmarried, 81% held a college degree or higher, and 95.2% had living parents. The most common diagnoses were sarcoma (28.6%) and colorectal cancer (19.0%). The core theme identified was: "Sketching a collective EOL medical decision in the final act of my life." The four process themes were: "Bringing decision-making to the forefront," "Silenced decisions," " Negotiating consensus," and "Deciding under the spotlight." Participants’ decision-making processes were dynamic, evolving with disease progression, psychosocial changes, and interpersonal interactions. These processes reflected a constant negotiation between personal care preferences and family expectations. Key influencing factors included treatment efficacy, financial burden, quality of life, caregiver strain, communication with healthcare providers, and familial bonds. Although AYAs often demonstrated autonomy and willingness to make decisions, their actual choices frequently aligned with family opinions and medical advice. As illness progressed, they tended to shift toward comfort-focused care. Conclusion : This study reveals that EOL care decision-making among AYAs in Taiwan is both dynamic and culturally sensitive. Their choices are not made in isolation but emerge from continuous interactions with family members and healthcare team. The tension between autonomy and familial duty, as well as between comfort and life prolongation, underscores the critical role of professional teams in helping AYAs and families navigate these complex decisions. Future clinical practice should prioritize the unique needs of AYAs in end-of-life care through culturally sensitive and locally grounded care models. Enhancing family–provider collaboration will be key to improving both decision-making quality and the overall care experience at the end of life.