scholarly journals 當代中國家庭醫療決策的倫理策略——一個有關家庭醫療決策的案例研究

Author(s):  
Guobin CHENG

LANGUAGE NOTE | Document text in Chinese; abstract also in English.在當代中國家庭醫療決策過程存在以下幾個特點:第一,病人的自主權並未完全消失,但其實現程度和方式受到了諸多限制;第二,對病人的行為能力和權利限度的判斷上存在家長主義和後果論的特徵,在一定程度上構成了對病人權利的剝奪;第三,病人的最大利益和個人意願仍然是決策依據的重要方面,但對這兩者的解讀體現出了偏重客觀利益和共用價值觀的特點,又受到家庭具體權力結構的影響。在家人做出最終決策的形式背後隱藏著諸多豐富的細節,家庭醫療決策是一個傳統與現代、家庭與個人價值觀共同作用的複雜過程,用任何一個單一的理論模型都很難說清它的本來面貌。This essay points out that informed consent in China today is often replaced by the “family decision” model, which is designed to embody Confucian family ethics and maximize the benefit of family involvement in medical decision making. The author, a physician, uses a specific case he encountered when treating an elderly woman with late-stage colon cancer. Because the patient did not know the whole truth of her condition, most of the medical decisions regarding her treatment were made by her children. Ideally speaking, a “family decision” means that both the patient and his/her close family members will be involved in the decision-making process. Yet, the author’s experiences show that in most cases, decision-making responsibilities shift from the patient to the family, especially when the patient is an elderly parent. Theoretically speaking, the Confucian ethics of humanness (ren) and filial piety (xiao) support family as the most appropriate authority for medical decisions. However, in reality, the author finds that this could be problematic when family members hide medical information from the patient—sometimes with cooperation from the physician. The essay recommends that more respect and autonomy should be given to the patient if the “family decision” policy is truly implementedDOWNLOAD HISTORY | This article has been downloaded 202 times in Digital Commons before migrating into this platform.

Author(s):  
Xiangjin KONG ◽  
Mingjie ZHAO

LANGUAGE NOTE | Document text in Chinese; abstract also in English.在具有家庭主義特徵的中國社會文化語境下,儒家家庭本位思想對病人知情同意權的影響是客觀實在。以自由主義和個人主義為理論基礎的個人自主知情同意原則要想在中國本土的醫療實踐中發揮應有作用,突顯家庭在知情同意過程中的主導地位是重要前提。在中國的醫療實踐中,知情同意的模式必須融入中國儒家家庭本位思想,才能更好地發揮其作用。Opinion polls released recently show that the majority of people in China today think that informed consent in medical practice is necessary, with more than half favoring family decision making over individual, autonomous patient decision making. Based on these opinion polls, this essay argues that the liberalism and liberal individualism that emphasize individual autonomy do not square with the Confucian tradition.The essay submits that the “family decision” model is designed to embody Confucian family ethics and maximize the benefit of family involvement in medical decision making. The family model includes both the patient and his or her close family members in the decision making process. The Confucian ethics of humanness (ren) – the highest moral virtue – and filial piety (xiao) – the foundation of all moral virtue – support family as the most appropriate authority for medical decisions. Further, the essay explores how the family as a unit is better positioned to work with the physician at critical moments to protect the interests of the patient. This means that the family, not the patient, is in authority, and that in some cases, it is acceptable for family members to hide “medical information” from the patient with the cooperation of the physician. The essay concludes that the family is, and should be treated as, a significant moral participant in medical decision making.DOWNLOAD HISTORY | This article has been downloaded 99 times in Digital Commons before migrating into this platform.


Author(s):  
Yu CAI

LANGUAGE NOTE | Document text in Chinese; abstract also in English.本文首先通過引入“家庭決策”揚棄“家屬決策”之概念而統一了家庭、患者和家屬之意願,消弭了長久以來醫療決策領域存在的患者決策和家屬決策之矛盾與紛爭。其後,文章從中國儒家文化中的“仁愛”、“孝悌”與“家庭觀”之視角立論了家庭決策的妥當性與可行性,並在西方倫理的自由主義和主體性思想中找到了家庭決策之落腳點。This paper begins with a definition of “family decisions.” I emphasize that family decisions are made jointly by all close family members on a voluntary basis. This decision-making mechanism is designed to embody the spirit of Confucian family ethics and maximize the benefit of family involvement in medical decision making.Introducing this concept allows us to abandon the outdated concept of “family member decisions” that seems to exclude the patient from the process of decision making. Family decision models should reflect the unity of the family, and should include both the patient and his or her close family members in the proper way in the decision making process. This unity will help to eliminate contradictions or disputes on whether medical decisions should be made by the patient alone or by the patient’s family members only. This paper expounds on the appropriateness and feasibility of the family decision model from the perspectives of benevolence (ren), filial piety (xiao), and family values cherished in the Chinese Confucian culture. First, Confucianism regards benevolence as the highest ethical and moral virtue, with filial piety as the foundation. According to the Confucian concept of filial piety, the rudimentary moral standard for individuals is that they must love their family members. As family decisions involving medical care need to take into account the long-term interests and common development of all family members, those decisions should be more in line with the spirit of reciprocal affection among family members advocated in the concepts of Confucian benevolence and filial piety. At the same time, family members are more likely to reach a compromise among themselves, based on mutual love, that maximizes the interests of the family for every member. Second, in accordance with the Confucian concept of the family, the life and behavior of individuals do not entirely belong to them, but rather to their family. Indeed, individual happiness is greatly dependent on the well-being of the family. Hence, the Confucian concept of the family underpins the family decision model and makes it appropriate in a clinical context. Influenced by the Confucian concept of the family, family decisions are easier to reach in China.This paper also explores the basis for family decisions in Western ethics, and suggests that the family decision model can also be defended from a liberal ethical perspective. In the process of family decision-making, every family member must limit their own behavior so as not to interfere with the freedom of other family members, thereby allowing every member the maximum freedom that they can enjoy in familial life. This reflects the ethical meaning of liberalism in a more comprehensive and in-depth way. Further, when making family decisions, all family members participate in the consultation as moral agents, and the status of each member as a moral agent is fully respected and exhibited. Finally, a family often serves as a moral community, and there are thus few obstacles to joint decision making arising from differing views on values. At the same time, even if family members hold different moral standards, they can still fully understand the needs of other family members in the process of familial decision making through effective mutual communication, so that a consensus is easier to reach through reciprocal compromise.DOWNLOAD HISTORY | This article has been downloaded 122 times in Digital Commons before migrating into this platform.


2009 ◽  
Vol 7 (3) ◽  
pp. 315-321 ◽  
Author(s):  
Marie T. Nolan ◽  
Mark T. Hughes ◽  
Joan Kub ◽  
Peter B. Terry ◽  
Alan Astrow ◽  
...  

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.


Author(s):  
S.Yu. Zhuleva ◽  
A.V. Kroshilin ◽  
S.V. Kroshilina

The process of making a medical decision is characterized by a lack of knowledge and inconsistency of the available information, the lack of the possibility of attracting competent medical experts, limited time resources, incomplete or inaccurate information about the patient's condition. These aspects may be the causes of medical errors, which lead to further aggravation of the problem situation. Purpose – it is necessary to define and justify managerial medical decisions and types of medical information in conditions of uncertainty, when each variant of the sets of outcomes of the situation (recommendations) has its own unique set of values. The fundamental difference between this process for medical use is the concept of the "best medical solution", in which the key role is given to the patient's state of health in obtaining and evaluating alternatives, as well as the need to take into account the time, adverse reactions of the body and the costs of implementing this solution. In the medical field, support for medical decision-making can be classified as organizational-managerial and therapeutic-diagnostic, but both are determined by the position of the person making the medical decision and are aimed at effective management of the medical institution as a whole. The article describes the causes and factors of the nature of uncertainty in the tasks of supporting medical decision-making in medical-diagnostic and organizational-managerial areas. The analysis of the features of supporting medical decision-making in conditions of uncertainty is carried out. Approaches and directions in this area, as well as the concept of “solution”, are considered. The essence of the management medical decision is reflected. The classification of management medical decisions is given, the requirements that are imposed on them are highlighted. The features of the development of management medical solutions in the conditions of incompleteness and uncertainty, the problems that arise when they are implemented in information systems are presented. The general scheme of the process of creating a management medical solution is shown. The features of making group and individual decisions are reflected. The algorithm of actions of the person making the medical decision in the conditions of uncertainty, incompleteness and risk in medical subject areas is presented.


2019 ◽  
Vol 34 (7) ◽  
pp. 1260-1260
Author(s):  
A Mejia ◽  
G D Smith ◽  
R E Curiel ◽  
W Barker ◽  
R Behar ◽  
...  

Abstract Objective Little is known regarding the values that patients with mild cognitive impairment (MCI) incorporate into healthcare decision-making or how culture may affect such values. Even if values overlap across cultures, cultural groups may emphasize the importance of specific values differently since values emanate, at least in part, from cultural and life-long learning. The aim of this study was to explore and compare values that older adults of different ethnicities and cognitive statuses incorporate in their medical decisions. Participants and Method Four focus groups were established by identifying older adults as, a) Hispanic or non-Hispanic, and with b) normal cognition or MCI. Participants were recruited from the 1Florida Alzheimer’s Disease Research Center. Focus groups were audio-recorded and transcribed using a professional transcription service. Results There were a total of 23 participants (Age: M = 70.9, SD = 6.4). MCI groups had briefer discussions (Time M = 44 minutes) than the normal cognition groups (Time M = 62 minutes). Qualitative analysis of discussions was used to explore the values identified across the focus groups. The MCI groups valued spirituality, doctor recommendations, and family involvement when facing medical decisions. Normal cognition groups valued the necessity of proactive involvement as healthcare consumers and the relationship between the quality of patient-clinician interaction and their health care related decisions. Cultural themes involving perceptions of gender and generational differences emerged from the Hispanic normal cognition group. Conclusions This study identified many determinants influencing the medical decision-making process of diverse older adults: including past experiences, family involvement, healthcare barriers, and cultural background. These results have the potential to impact patient-clinician discussions, decisions made by surrogates, and the development of decision aids with a broader range of relevant patient values.


Author(s):  
Mingxu WANG ◽  
Wen ZHANG ◽  
Xueliang WANG

LANGUAGE NOTE | Document text in Chinese; abstract also in English.從儒家倫理的視角解讀中國新實施的《人體器官移植條例》,以第8 條中“共同表示同意”為著力點,認為,儒家的家庭倫理不僅深刻地影響者中國人的思維方式和行為方式,而且至今被人們認為是構建家庭倫理的最根本原則,有著廣泛的社會基礎和現實根據。分析了儒家倫理支持器官捐獻的理據,結合案例指出:家庭的知情同意並不違背個人的知情同意;應當在儒家的家庭倫理的基礎上探討這一條例的相關問題,從而幫助完善和實施這一條例,使我國有關人體器官移植和屍體捐獻的立法更加完備,為推動器官移植技術的發展建立更為有效的法律保障機制。並提出在在條例實施過程中還有五個相關問題需要澄清和解決。Organ donation is the gift of an organ to help someone else who needs a transplant. Hundreds of people’s lives are saved each year by organ transplants. Yet the question remains: Who should give the priority in terms of donation procedures - the individual who feels a strong, personal commitment to offer his/her organ or the legal next-of-kin, i.e., the priority order of the family members? This has been greatly debated bioethical issue in China in recent years. Rather than emphasizing the right of individuals to decide what will happen after they die, or removing the burden of making a decision about organ donation from families dealing with the traumatic death of a loved one, the policy of family consent indicates the signif icant role of family in making the decision. That is to say, the consent, or lack of objection, of those closest to the patient is always sought before organs can be donated. The family involvement could avoid discomfort with the process on the one hand, but also cause conf licts when there is a disagreement between the donor and family members on the other.This paper focuses its discussion on the context and impacts of the“ Rules regarding Organ Transplant” implemented in China since 2007. Then, it turns to traditional Confucian ethics to talk about the meaning of life and Confucian concept of family to show that Confucianism would support the idea of organ transplant. To prove the claim, the paper offers two recent examples of organ donation. Organ transplant should be advocated but the rules should be tighten in order to prevent unqualified doctors and profithungry hospitals from abusing patients and organ donors.DOWNLOAD HISTORY | This article has been downloaded 301 times in Digital Commons before migrating into this platform.


Author(s):  
Hanhui XU

LANGUAGE NOTE | Document text in Chinese; abstract also in English.儒家家庭本位思想對於中國傳統社會有著極其深刻的影響,而這種影響直到今天仍然發揮著巨大的作用,並由此形成了中國特有的社會結構和家庭觀念。在中國家庭中,家庭成員之間的關係更加密切,遇到重大事情,往往會由家庭成員共同做出決定。由於這種特殊的文化氛圍,在臨床決定的時候,應該用家庭共同決定代替個人自主決定,這種模式既能保障個人權利,維護個人利益,同時也是尊重家庭決定,營造和諧的家庭關係。Family involvement in medical decision making is a common practice in China due to the influence of Confucianism, which emphasizes the family as an organic unit. Instead of speaking of the individual’s right to choose and make a decision, the Confucian model for “informed consent” calls for “family co-decision making” or “co-determination.” The essay argues that China has long-standing moral traditions such as Confucianism, with its inherent ethical views toward family values that are still pertinent to a person’s daily life in general and bio-medical issues in particular.The author points out that those who acknowledge the role of the family in medical decision making feel much more satisfied. Sometimes both medical and non-medical burdens related to family roles and relationships are taken into consideration, but a patient who has good family relationships would rather family members be actively involved in the decision making. In addition, as young people are becoming increasingly individualistic under the influence of Western culture, family medical co-decision making can promote the Confucian values of family, family responsibility, and the well-being of individuals.DOWNLOAD HISTORY | This article has been downloaded 1791 times in Digital Commons before migrating into this platform.


2020 ◽  
Vol 32 (1) ◽  
pp. 45-71
Author(s):  
Elena Link ◽  
Doreen Reifegerste ◽  
Christoph Klimmt

If medical decision-making about complex treatment options (such as surgical procedures) is challenging for patients, family members can provide them with advice and health information. Previous research about family involvement in health communication has largely focused on cancer patients. Thus, it lacks an examination of family involvement in surgery decision-making in the context of non-life-threatening chronic diseases like arthrosis. In particular, we focus on the role of social support for family involvement in these situations. Against this background, we conducted semi-structured qualitative interviews with arthrosis patients and their family members (n = 32 patients; n = 8 relatives). To better understand family involvement in surgery decision-making, three research questions were analyzed: (1) What are the perceived characteristics of the arthroplasty decisional process? (2) Which patterns of family involvement exist with regard to social support? (3) What general circumstances are relevant for family involvement? Our results demonstrate that social support plays an important role in the patterns of family decision-making. Instrumental, emotional, and informational support can indirectly enhance family involvement in decision-making. In addition, relatives are also directly involved in decision-making processes and may instigate the decision. The type of family involvement is influenced by characteristics of the decision-making situation. In addition to personal factors and the relationship with the physician, which is perceived as less supportive, the need for familial decisional support intensifies.


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