探討家屬代理維生醫療決策之道德基礎、標準與決策形成模式

Abstract

背景 自1980年代以來，維生醫療科技的發展逐漸改變人們與醫療的關係。隨著醫療技術維持生命的能力提昇，人們也逐漸從避免死亡的唯一目標，演變為爭取死亡權利的新篇章。縱使透過預立醫療決定等方式可讓人們避免以不可欲的方式被維繫生命，但多數人通常不會事先預立醫療決定，以及預立醫療決定未必適用實際情況，導致人們在生命終點之前，仍很可能需要他人代為進行醫療決策。在我國，以家屬代理決策為最常見的決策型態；然而，對家屬代理維生醫療決策的規範及討論並不充足。如〈安寧緩和醫療條例〉允許家屬為末期病人代理維生醫療決策，但至於應如何決策、若遇決策紛爭與對決策有疑義等，則無配套規範或指引；近期實施的〈病人自主權利法〉則未涉及家屬代理決策。此落差，推測與規範之發展主要師法其他國家，未從我國社會文化脈絡觀點探討所致。有鑒於此，本研究針對以下三個問題進行探究：(1)家人為什麼能為無決定能力的病人做維生醫療決策？（代理決策的道德基礎）；(2)家人應如何為無決定能力的病人做決策？（代理決策的決策標準）；(3)該決策的決策程序為何？（代理決策的決策形成模式）。 研究方法 本研究有兩部分，針對三個研究問題分別以質性與量性方法進行探究。質性研究採半結構式訪談（semi-structured interview）收集資料，主要以主題分析（thematic analysis）方法分析結果；量性部分採網路問卷調查，分析方法以描述性統計為主。 研究結果 質性研究部分，訪談進行於2023年11-12月間，共有84位受訪者，納入分析82位受訪者之訪談資料。經分析後，道德基礎部分有四個次主題（貫徹個人自我決定；能做出最好的決定；最受該決定影響者；依法律規定），決策標準有三個次主題（被代理者的自我決定；為對方做最好的決定；為自己考慮），決策形成模式有四個次主題（被代理者的自我決定；家庭關係取向；客觀導向；依法律規定）。決策標準的部分，進一步根據受訪者所屬的配對關係（配偶、親子、手足）分組，並觀察到親屬關係的種類會影響個人採取之代理決策標準。 量性研究部分，網路問卷調查期間為2024年10月至2025年1月，共收集2,000份有效問卷。調查結果指出，家屬可為病人做維生醫療決策的道德基礎，最重要的理由為「因為家人可能需要承擔經濟或照顧壓力」與「家人是最會受到這個決定影響的人」。決策標準部分，「病人自主」與「最佳利益」皆為重要標準，較特別的部分是，「投射式（projected）」決策的重要性分數與前二標準不分軒輊；此部分進一步以代理決策之對象進行分組（為配偶、為父母、為子女、為手足），結果發現與對方之關係種類對特定決策標準的重要性有顯著影響，其中又以為配偶與為父母決策最為明顯。決策形成模式的部分，「依本人預立醫療決定」是意願最高的方式，其次是「由本人指定」以及「由家人和醫師一起決定」。 結論 根據本研究之結果與討論，提出以下建議。在道德基礎的部分，台灣社會脈絡肯定家屬為是當然的代理決策者，此正當性並不會因病人「末期」與否而有差別。基於台灣社會最重要的道德基礎為「關係取向」，當病人失去決定能力時，首要之務將是由家庭成員討論與提出決策人選，而在無法推派出人選時，由最可能負擔後續照顧責任者決定，則是符合此脈絡的作法。在決策標準的部分，建議有由官方或專業學會公告的指引或報告書，闡明應如何為無決定能力病人做維生醫療決策，以軟性的方式提供支持與引導。「投射」式觀點決策，雖非當前倫理建議的決策標準，本研究認為應於未來研究中持續探討其於本土脈絡的倫理評價。最後關於決策形成模式，現行〈安寧緩和醫療條例〉的家屬代理決策機制必須進行修正，因其設計並不適用於本土脈絡，而由〈病人自主權利法〉所涵蓋的其他臨床條件也應設計相應的家屬代理決策機制。最後，考量台灣社會「關係取向」或「社會取向」的脈絡，應重新思考如何透過非硬性規定與在家庭內部的私領域裡，發展有利於個人自主意願表達、同時也兼顧家庭關係的方式，以實質提高民眾預先向家人交待醫療選擇的意願。

Background Since the 1980s, advances in life-sustaining treatment (LST) technologies have gradually transformed the relationship between individuals and medicine. As medical technologies have improved the ability to sustain life, the sole goal of avoiding death has evolved into a new discourse emphasizing the right to die. Although policies such as advance decisions allow individuals to avoid being maintained in undesirable conditions, most people do not complete advance decisions in advance, and such decisions may not always apply to real-life situations. As a result, individuals are still likely to require surrogate decision-making before the end of life. In Taiwan, family-based surrogate decision-making is the most common form; however, domestic regulations and discussions regarding family surrogate decision-making for LST remain insufficient. For example, the Hospice Palliative Care Act permits family members to make LST decisions on behalf of terminally ill patients, yet there are no corresponding regulations or guidelines regarding how such decisions should be made, or how to handle disputes or uncertainties. The recently implemented Patient Right to Autonomy Act does not address family surrogate decision-making. This discrepancy may be attributed to the fact that the original framework was modeled after those of other countries, without sufficient consideration of Taiwan's unique sociocultural context. In light of this, the present study investigates the following three questions: (1) Why are family members entitled to make LST decisions for patients who lack decision-making capacity? (the moral ground of surrogate decision-making); (2) How should family members make LST decisions on behalf of patients who lack decision-making capacity? (the standards of surrogate decision-making); (3) What decision-making process should be followed in such cases? (the model of decision formation in surrogate decision-making).

Methods This study adopted a convergent mixed-methods design to investigate the three research questions using both qualitative and quantitative approaches. The qualitative component employed semi-structured interviews for data collection, and thematic analysis was used for data analysis. The quantitative component collected data through an online survey, and analytical methods included descriptive statistics, bivariate analysis, and analysis of variance (ANOVA).

Results For the qualitative component, interviews were conducted between November and December 2023. A total of 84 participants were interviewed, and data from 82 participants were included in the analysis. The analysis identified four subthemes for moral grounds (respecting individual self-determination; being able to make the best decision; being the most affected by the decision; acting in accordance with the law), three subthemes for decision-making standards (the patient’s self-determination; making the best decision for the patient; considering own need), and four subthemes for decision-making models (the patient’s self-determination; family relationship orientation; objective orientation; acting in accordance with the law). Regarding decision-making standards, participants were further grouped according to their dyads category (spouses, parent–child, siblings), and it was observed that the type of kinship relationship influenced the standards adopted in surrogate decision-making. For the quantitative component, the online survey was conducted from October 2024 to January 2025, yielding 2,000 valid responses. The findings indicated that the most important moral grounds for family members to make surrogate LST decisions were “because family members may bear financial or caregiving burdens” and “because family members are the ones most affected by the decision.” Regarding decision-making standards, both “patient autonomy” and “best interests” were considered important. Notably, the importance of “projected” decision-making was comparable to these two standards. For decision-making standards, further subgroup analysis based on the relation categories of surrogate decision-making (spouse, parents, children, siblings) revealed that the type of relationship significantly influenced the importance assigned to specific decision-making standards, especially when making decisions for spouse and parents. In terms of decision-making models, the most preferred approach was following the patient’s advance decision, followed by a surrogate designated by the patient, and then joint decision-making by family members and physicians.

Conclusions Based on the findings and discussion of this study, several recommendations are proposed. Regarding the moral grounds for surrogate decision-making, the Taiwanese sociocultural context recognizes family members as the natural and legitimate surrogates for patients who lack decision-making capacity, and this legitimacy does not differ according to whether the patient is terminally ill. Given that relational orientation constitutes the most fundamental moral ground in Taiwanese society, when a patient loses decision-making capacity, the preferred approach is for family members to discuss and identify the appropriate surrogate decision-maker. If no consensus can be reached, the decision should be made by the family member who is most likely to assume primary responsibility for the patient's subsequent care, as this approach is most consistent with the local sociocultural context. Regarding the decision-making standard, official guidance or professional society statements are recommended to clarify how life-sustaining treatment decisions should be made for incapacitated patients, thereby providing support and practical guidance through non-binding recommendations. Although the projected perspective is not currently recognized as an ethically recommended decision-making standard, this study suggests that its ethical significance within the Taiwanese context warrants further investigation. Finally, with respect to the decision-making model, the current family surrogate decision-making mechanism under the Hospice Palliative Care Act should be revised, as its design is not well suited to the Taiwanese sociocultural context. Corresponding family surrogate decision-making mechanisms should also be established for the additional clinical conditions covered by the Patient Right to Autonomy Act. More broadly, in light of the relational and socially oriented nature of Taiwanese society, policymakers should reconsider how to foster opportunities for individuals to communicate their treatment preferences with family members through non-coercive approaches within the private sphere of family life. Such efforts would better promote the expression of individual autonomy while preserving family relationships, thereby increasing the likelihood that people will discuss and communicate their future healthcare preferences with their families in advance.