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Sobre autonomias dirigidas e vestígios do passado : repercussões da gestão autônoma de medicamentos nas narrativas de trabalhadores da atenção básica / Controlled autonomies and remains of the past : effects of autonomous psychotropic medication management in narratives of primary care workersBorges, Luana Ribeiro, 1981- 25 August 2018 (has links)
Orientador: Rosana Teresa Onocko Campos / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-25T05:20:12Z (GMT). No. of bitstreams: 1
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Previous issue date: 2014 / Resumo: No Brasil a prescrição de psicofármacos pode ser considerada uma prática ainda não reformada, tendo em vista que, pesquisas recentes apontam para o baixo empowerment dos usuários em relação a seus tratamentos medicamentosos, deixando o poder desta decisão a critério apenas dos profissionais de saúde. Considerando isso, utilizamos o "medicamento" como gatilho para analisar o conflito de forças existentes em toda escolha clínica, inclusive na gestão da medicação. Conduzimos desta forma, por entender que ele ocupa um lugar importante quando se pretende problematizar as relações de poder existentes entre pacientes e profissionais de saúde. Assim, o objeto desse estudo está pautado nas inter-relações usuário/trabalhador/serviço de saúde, a quais tornam-se reveladoras dos desafios colocados a atual Política Nacional de Saúde Mental. Adotamos como base a estratégia de gestão autônoma de medicamentos (GAM), pois esse dispositivo tem se mostrado um intercessor potente para trabalhar tais questões. Então, buscando reconhecer seus efeitos naqueles que vivem a experiência GAM, desenvolvemos um estudo hermenêutico-narrativo de caráter qualitativo. Esse estudo fundamentou-se no tripé avaliação, participação e intervenção e teve como sujeitos-participantes trabalhadores da rede de assistência à saúde mental e estudantes de especialização em saúde da Unicamp. Foram realizados 9 Grupos de Intervenção GAM (GIs), sendo 4 em Unidades Básicas de Saúde (UBS) e 5 em Centros de Atenção Psicossocial (CAPS). Cada grupo contava com 2 operadores GAM (1 trabalhador e 1 estudante) e 10 usuários de psicotrópicos. Os GIs foram realizados nos serviços de saúde, com encontros semanais e duração média de 7 meses, atingindo nesse período 51 usuários e 29 operadores GAM. A fase de colheita dos dados ocorreu de Julho de 2011 à maio de 2012. Metodologicamente a pesquisa foi construída a partir da triangulação de métodos (entrevista semiestruturada, diário de bordo e oficinas de debate e aprofundamento). As entrevistas foram transcritas e transformadas em metanarrativas através da extração dos núcleos argumentais e após foram validadas por diferentes pesquisadores. O material foi analisado sob a perspectiva Gadameriana. Essa dissertação irá discutir os resultados obtido pelas entrevistas e irá considerar apenas a voz dos trabalhadores da Atenção Básica (8 metanarrativas). A escolha de trabalhar com esse segmento da atenção básica deu-se por entender que a mudança paradigmática resultante da Reforma Psiquiátrica brasileira vem solicitando cada vez mais a atuação desse nível de atenção nos cuidados à saúde mental de sua população adscrita. As falas desses trabalhadores trouxeram à tona a supervalorização do saber científico em detrimento do saber da experiência. Também, desvelaram a existência de modos de restrição da autonomia tanto do usuário como dos profissionais de saúde e as armadilhas que conduzem a medicalização e a restrição da liberdade e do cuidado de si. Ao mesmo tempo, foi possível observar o surgimento de um devir hermenêutico nos participantes do estudo, um movimento de colocar em questão as próprias verdades e as relações de saber/poder existente na clínica / Abstract: In Brazil psychotropic prescription can be considered a practice not yet reformed, given that recent studies show low empowerment of users regarding their drug treatments, letting this important decision only to the health professionals. Considering this, we use "drug" as a start to review the existing conflict of forces across clinical choice, including the management of medication. We conducted this way, understanding that it plays an important role when we intend to analyze the existing power relations between patients and health professionals. Thus, the object of this study is based in the interrelationships user / worker / health care service, which reveal the challenges to the current National Mental Health Policy. We adopt as a basis the strategy of Autonomous Medication Management (GAM), because this device has proved to be a powerful intercessor to work such issues. So, trying to recognize their effects on those living GAM experience, we developed a hermeneutic-narrative qualitative study. This study was based on tripod evaluation/ participation/ intervention, and had as participating subjects, mental healthcare staff and health specialization students of Unicamp. We performed 9 GAM Intervention Groups (GIs), 4 in Basic Health Units (UBS) and 5 in Psychosocial Care Centers (CAPS). Each group had 2 GAM operators (1 worker and 1 student) and 10 users of psychotropic drugs. The GIs were performed at services with weekly meetings and mean duration of 7 months, reaching in total 51 users and 29 GAM operators. The collection of data occurred from July 2011 to May 2012. The survey was constructed from the triangulation of methods (semi-structured interviews, logbook and workshops for discussion and deepening). The interviews were transcribed and processed in metanarratives through the extraction of argumentation nuclei, and then validated by different researchers. The material was analyzed under the Gadamerian perspective. This dissertation will discuss the results obtained by interviews and will consider only the voice of the Primary Care workers (8 metanarratives). The reason for choosing to work with primary care is related to the fact that it is increasingly being requested in the context of Brazilian psychiatric reform with regard to mental health care for its enrolled population The discourses of these workers have brought to light the overvaluation of scientific knowledge at the expense of learning from experience. Also unveiled the existence of modes of restricting the autonomy for both the users and the healthcare professionals and the pitfalls that lead to medicalization and freedom and self-care restrictions. At the same time, we observed the emergence of a hermeneutic becoming in the study participants, a movement to put into question the very truths and knowledge/power relations existing in the clinic / Mestrado / Política, Planejamento e Gestão em Saúde / Mestra em Saúde Coletiva
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Autonomie vůle pacientky při porodu / Autonomy of the patient's will at childbirthSedláček, Tomáš January 2017 (has links)
Page 1 of 2 Abstract The diploma thesis deals with the topic of autonomy of the mother's will during childbirth. The main goal of the work is to analyze the legal regulation concerning the provision of healthcare in connection with childbirth and the limits of the autonomy of the patient's will in this situation. The aim of the thesis is to examine the issue of the autonomy of the patient's will according to the valid and effective legal regulation in the Czech Republic, with respect to gradual enforcement of the principle of patient and healthcare provider equality, this issue being related to a relatively specific area of childbirth. There is general legal regulation, relating to the position of the patient, healthcare provider and their mutual relationship outlined in this thesis. This legislation is then subsequently used for the provision of healthcare in relation to childbirths. The case law of both domestic courts and the European Court of Human Rights is then applied to specific problems in this area. One of the described problems is the legal nature of the delivery plan as one of the basic means of expressing the autonomy of the patient's will. In particular, the legal nature of the birth plan is handled as institute which is not regulated by law. Possible legal consequences of the delivery plan as...
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論醫療代理人制度─以同志伴侶之需求為核心 / A Study on Durable Power of Attorney for Health Care—Focusing on the Needs of Same-Sex Couples林芳伃, Lin, Fang Yu Unknown Date (has links)
隨著醫學科技的進步,越來越多病患無法自主進行醫療決定的情況發生。西方國家受病人自主權的概念啟發,發展出預立醫囑(living will)及醫療代理人制度(durable power of attorney for health care)。醫療代理人制度提供個人預先指定醫療代理人,當事人無法自主做出醫療決定時,可由醫療代理人代替當事人作出醫療決定,以補足無預立醫囑或預立醫囑的不足。
我國同志伴侶於目前仍缺乏法律上的實質身分保障,伴侶相關的醫療權利正迫切且無預警的影響許多打算共組家庭而無法受法律上的婚姻制度保障的同志伴侶。雖有論者認為,可適用醫療法上「關係人」以及安寧緩和醫療條例之「醫療委任代理人」,即可滿足同志伴侶於醫療上的需求。然由於關係人的定義模糊,且實務上為避免醫療糾紛,往往要求病患的親屬到場,而不接受其他不具配偶、親屬身分關係者進行醫療行為的同意,「關係人」一詞於實務上難以適用。
本文試圖從醫療代理人制度的角度,期能另闢蹊徑,除強化並保障病人自主權外,提供同志伴侶在與生死攸關的醫療議題上更可能且直接的保障,也為不論是同志或其他愛的關係尋求更多可能,提供在婚姻以外的選擇能有更多彈性。本文除了介紹西方的醫療代理人制度並借鏡美國同志伴侶使用醫療代理人制度的經驗外,也探討醫療代理人制度對於我國家庭觀念、傳統醫療上家屬父權主義以及家庭中心式的醫療決策文化的影響與衝擊。同時更深入討論,同志伴侶必須面臨來自醫療院所、醫護人員對於同志是否友善;以及來自病患原生家庭對於醫療代理人及同志身分的壓力。 / With the advances in medical technology, the situation that patients couldn't determine their medical decisions increasingly occurs in our society. Inspired by the concept of patient autonomy, Western countries developed living will and durable power of attorney for health care, which is as known as health care proxy. Individuals can appoint a trustworthy person as their health care proxy. When the patient is incompetent, the health care proxy can make medical decisions for the patient to complete the inadequacy of living will.
Same-sex couples can’t make medical decisions for their same-sex partners because same-sex marriage is currently illegal in Taiwan. Moreover, family members play an important role in the process of medical decision in Taiwan. Therefore, this article introduces the development of durable power of attorney for health care in Western countries, tries to address the medical issue of Taiwanese same-sex couples, and discusses the impact of durable power attorney for health care on Chinese traditional family values and family-centered medical decision making. While as a health care proxy, same-sex partner has to face the medical staff’s attitude toward homosexual, also has to confront the pressure from the patient’s family-of-origin.
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Aspects méthodologiques, mesure et facteurs associés à l’autonomie des patients utilisant les technologies de dialyse péritonéale à domicileMoqadem, Khalil 03 1900 (has links)
La dialyse péritonéale (DP) est une thérapie d’épuration extra-rénale qui peut se réaliser à domicile par l’entremise d’une technologie. Elle exige, du patient certaines aptitudes, (motivation et compétence) et de l’équipe de soins, une organisation particulière pour arriver à une autonomie d’exécution de l’épuration. Dans un contexte de thérapie à domicile, comme celui de la dialyse péritonéale, le niveau d’autonomie des patients ainsi que les facteurs qui y sont associés n’ont pas été examinés auparavant. C’est l’objet de cette thèse.
En se fondant sur la théorie de l’autodétermination et sur une revue de la littérature, un cadre conceptuel a été développé et fait l’hypothèse que trois types de facteurs essentiels pourraient influencer l’autonomie. Il s’agit de facteurs individuels, technologiques et organisationnels.
Pour tester ces hypothèses, un devis mixte séquentiel, composé de deux volets, a été réalisé. Un premier volet qualitatif - opérationnalisé par des entrevues auprès de 12 patients et de 11 infirmières - a permis, d’une part, d’explorer et de mieux définir les dimensions de l’autonomie pertinente dans le cadre de la DP; d’autre part de bonifier le développement d’un questionnaire. Après validation, ce dernier a servi à la collecte de données lors du deuxième volet quantitatif et alors a permis d’obtenir des résultats auprès d’un échantillon probabiliste (n =98), tiré de la population des dialysés péritonéaux du Québec (N=700). L’objectif de ce deuxième volet était de mesurer le degré d’autonomie des patients, d’examiner les associations entre les facteurs technologiques, organisationnels ainsi qu’individuels et les différentes dimensions de l’autonomie. Des analyses univariées et multivariées ont été réalisées à cet effet.
Les résultats obtenus montrent que quatre dimensions d’autonomie sont essentielles à atteindre en dialyse à domicile. Il s’agit de l’autonomie, sur le plan clinique, technique, fonctionnel (liberté journalière) et organisationnel (indépendance par rapport à l’institution de soins). Pour ces quatre types d’autonomie, les patients ont rapporté être hautement autonomes, un résultat qui se reflète dans les scores obtenus sur une échelle de 1 à 5 : l’autonomie clinique (4,1), l’autonomie technique (4,8), l’autonomie fonctionnelle (4,1) et l’autonomie organisationnelle (4,5).
Chacun de ces types d’autonomie est associé à des degrés variables aux trois facteurs du modèle conceptuel : facteurs individuels (motivation et compétence), technologique (convivialité) et organisationnels (soutien clinique, technique et familial). Plus spécifiquement, la motivation serait associée à l’autonomie fonctionnelle. La convivialité serait associée à l’autonomie clinique, alors que la myopathie pourrait la compromettre. La convivialité de la technologie et la compétence du patient contribueraient à une meilleure autonomie organisationnelle. Quant à l’autonomie sur le plan technique, tous les patients ont rapporté être hautement autonomes en ce qui concerne la manipulation de la technologie. Ce résultat s’expliquerait par une formation adéquate mise à la disposition des patients en prédialyse, par le suivi continu et par la manipulation quotidienne pendant des années d’utilisation.
Bien que dans cette thèse la technologie d’application soit la dialyse péritonéale, nous retenons que lorsqu’on transfère la maîtrise d’une technologie thérapeutique à domicile pour traiter une maladie chronique, il est primordial d’organiser ce transfert de telle façon que les trois facteurs techniques (convivialité), individuels (motivation, formation et compétence), et organisationnels (soutien de l’aidant) soient mis en place pour garantir une autonomie aux quatre niveaux, technique, clinique, fonctionnel et organisationnel. / Peritoneal dialysis (PD) is a home-based therapy that purifies blood via a peritoneal membrane to treat patients with end-stage renal disease. It requires from the patient some aptitudes (competence and motivation) and from the caregivers a particular organization to foster patient autonomy. However, in the context of a home-based therapy, such as in peritoneal dialysis, autonomy is a poorly conceptualized entity and has not been specifically measured. The objective of this thesis was to identify the dimensions and the levels of the patient’s autonomy and the factors associated in the context of using peritoneal dialysis.
On the basis of the Self-determination theory and a literature review, a conceptual framework was developed which assumed that three main factors could influence the autonomy: individual (motivation, competence), technological (user-friendliness), and organizational factors (different types of support).
To test the assumptions supported by our framework, a mixed method design composed of two sequential phases was developed. A first qualitative phase - conducted through open-ended interviews with 12 patients and 11 nurses - was performed to explore and better define the dimensions of autonomy of the patients treated by peritoneal dialysis. The data obtained was used to enhance the development of a questionnaire, which was mailed during the second quantitative phase to a random sample of patients. This questionnaire was completed and returned by 98 patients from the population of Québec peritoneal dialysis users (N=700). The objective of this second phase was to assess the patients’ autonomy levels and to examine the relationship between the three factors (individual, technological and organizational) and the four dimensions of autonomy. Data were analysed using univariate statistics and multiple linear regression model.
Our results show that four dimensions of autonomy are essential to achieve peritoneal dialysis at home : clinical autonomy (performing basic clinical tasks), technical (technical tasks), functional (daily freedom) and organizational autonomy (independence from the care centre). The patients gave higher rating for organizational autonomy (4,5 mean score on five-point Likert scale); 4,1 for clinical autonomy; 4,1 score for functional autonomy and 4,8 for technical autonomy.
Each of these dimensions of autonomy was associated with one or more of three factors from the conceptual model : individual, technology and organizational factors. In some cases, the type of the peritoneal dialysis technology (manual or automated) contributed to some dimension of autonomy. More specifically, the motivation could facilitate functional autonomy. The technology user-friendliness might allow greater clinical autonomy, but a muscular disease could compromise it. The patient competence and the user-friendliness might contribute to the organizational autonomy. Finally, all the patients reported being highly autonomous on manipulating the technology.
This result could be explained by adequate training during the predialysis period, continuous support and daily manipulation of the technology. Even though our results were obtained for the peritoneal dialysis application, we retain that when transferring the handling of a home therapy technology to treat a chronic disease, it is essential to coordinate the transfer so that the three factors, the user-friendliness, individual factors such as motivation and competence, and organizational factors (different types of support) are in place to ensure autonomy at the four levels, technical, clinical, functional and organizational.
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Aspects méthodologiques, mesure et facteurs associés à l’autonomie des patients utilisant les technologies de dialyse péritonéale à domicileMoqadem, Khalil 03 1900 (has links)
La dialyse péritonéale (DP) est une thérapie d’épuration extra-rénale qui peut se réaliser à domicile par l’entremise d’une technologie. Elle exige, du patient certaines aptitudes, (motivation et compétence) et de l’équipe de soins, une organisation particulière pour arriver à une autonomie d’exécution de l’épuration. Dans un contexte de thérapie à domicile, comme celui de la dialyse péritonéale, le niveau d’autonomie des patients ainsi que les facteurs qui y sont associés n’ont pas été examinés auparavant. C’est l’objet de cette thèse.
En se fondant sur la théorie de l’autodétermination et sur une revue de la littérature, un cadre conceptuel a été développé et fait l’hypothèse que trois types de facteurs essentiels pourraient influencer l’autonomie. Il s’agit de facteurs individuels, technologiques et organisationnels.
Pour tester ces hypothèses, un devis mixte séquentiel, composé de deux volets, a été réalisé. Un premier volet qualitatif - opérationnalisé par des entrevues auprès de 12 patients et de 11 infirmières - a permis, d’une part, d’explorer et de mieux définir les dimensions de l’autonomie pertinente dans le cadre de la DP; d’autre part de bonifier le développement d’un questionnaire. Après validation, ce dernier a servi à la collecte de données lors du deuxième volet quantitatif et alors a permis d’obtenir des résultats auprès d’un échantillon probabiliste (n =98), tiré de la population des dialysés péritonéaux du Québec (N=700). L’objectif de ce deuxième volet était de mesurer le degré d’autonomie des patients, d’examiner les associations entre les facteurs technologiques, organisationnels ainsi qu’individuels et les différentes dimensions de l’autonomie. Des analyses univariées et multivariées ont été réalisées à cet effet.
Les résultats obtenus montrent que quatre dimensions d’autonomie sont essentielles à atteindre en dialyse à domicile. Il s’agit de l’autonomie, sur le plan clinique, technique, fonctionnel (liberté journalière) et organisationnel (indépendance par rapport à l’institution de soins). Pour ces quatre types d’autonomie, les patients ont rapporté être hautement autonomes, un résultat qui se reflète dans les scores obtenus sur une échelle de 1 à 5 : l’autonomie clinique (4,1), l’autonomie technique (4,8), l’autonomie fonctionnelle (4,1) et l’autonomie organisationnelle (4,5).
Chacun de ces types d’autonomie est associé à des degrés variables aux trois facteurs du modèle conceptuel : facteurs individuels (motivation et compétence), technologique (convivialité) et organisationnels (soutien clinique, technique et familial). Plus spécifiquement, la motivation serait associée à l’autonomie fonctionnelle. La convivialité serait associée à l’autonomie clinique, alors que la myopathie pourrait la compromettre. La convivialité de la technologie et la compétence du patient contribueraient à une meilleure autonomie organisationnelle. Quant à l’autonomie sur le plan technique, tous les patients ont rapporté être hautement autonomes en ce qui concerne la manipulation de la technologie. Ce résultat s’expliquerait par une formation adéquate mise à la disposition des patients en prédialyse, par le suivi continu et par la manipulation quotidienne pendant des années d’utilisation.
Bien que dans cette thèse la technologie d’application soit la dialyse péritonéale, nous retenons que lorsqu’on transfère la maîtrise d’une technologie thérapeutique à domicile pour traiter une maladie chronique, il est primordial d’organiser ce transfert de telle façon que les trois facteurs techniques (convivialité), individuels (motivation, formation et compétence), et organisationnels (soutien de l’aidant) soient mis en place pour garantir une autonomie aux quatre niveaux, technique, clinique, fonctionnel et organisationnel. / Peritoneal dialysis (PD) is a home-based therapy that purifies blood via a peritoneal membrane to treat patients with end-stage renal disease. It requires from the patient some aptitudes (competence and motivation) and from the caregivers a particular organization to foster patient autonomy. However, in the context of a home-based therapy, such as in peritoneal dialysis, autonomy is a poorly conceptualized entity and has not been specifically measured. The objective of this thesis was to identify the dimensions and the levels of the patient’s autonomy and the factors associated in the context of using peritoneal dialysis.
On the basis of the Self-determination theory and a literature review, a conceptual framework was developed which assumed that three main factors could influence the autonomy: individual (motivation, competence), technological (user-friendliness), and organizational factors (different types of support).
To test the assumptions supported by our framework, a mixed method design composed of two sequential phases was developed. A first qualitative phase - conducted through open-ended interviews with 12 patients and 11 nurses - was performed to explore and better define the dimensions of autonomy of the patients treated by peritoneal dialysis. The data obtained was used to enhance the development of a questionnaire, which was mailed during the second quantitative phase to a random sample of patients. This questionnaire was completed and returned by 98 patients from the population of Québec peritoneal dialysis users (N=700). The objective of this second phase was to assess the patients’ autonomy levels and to examine the relationship between the three factors (individual, technological and organizational) and the four dimensions of autonomy. Data were analysed using univariate statistics and multiple linear regression model.
Our results show that four dimensions of autonomy are essential to achieve peritoneal dialysis at home : clinical autonomy (performing basic clinical tasks), technical (technical tasks), functional (daily freedom) and organizational autonomy (independence from the care centre). The patients gave higher rating for organizational autonomy (4,5 mean score on five-point Likert scale); 4,1 for clinical autonomy; 4,1 score for functional autonomy and 4,8 for technical autonomy.
Each of these dimensions of autonomy was associated with one or more of three factors from the conceptual model : individual, technology and organizational factors. In some cases, the type of the peritoneal dialysis technology (manual or automated) contributed to some dimension of autonomy. More specifically, the motivation could facilitate functional autonomy. The technology user-friendliness might allow greater clinical autonomy, but a muscular disease could compromise it. The patient competence and the user-friendliness might contribute to the organizational autonomy. Finally, all the patients reported being highly autonomous on manipulating the technology.
This result could be explained by adequate training during the predialysis period, continuous support and daily manipulation of the technology. Even though our results were obtained for the peritoneal dialysis application, we retain that when transferring the handling of a home therapy technology to treat a chronic disease, it is essential to coordinate the transfer so that the three factors, the user-friendliness, individual factors such as motivation and competence, and organizational factors (different types of support) are in place to ensure autonomy at the four levels, technical, clinical, functional and organizational.
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兒童醫療自主之探討-以病童臨床經驗出發 / Patient autonomy of children - from the clinical experiences on pediatric patients張濱璿, Chang, Pin Hsuan Unknown Date (has links)
因為醫病互動關係的改變,病患自主權在經過歐美數十年來的覺醒與詮釋,並定位於不論是人性尊嚴或是隱私權內涵中之憲法層級,以及在告知後同意於近二十年來引進國內並蓬勃發展之後,病患的自主決定權在現今醫療過程中已經受到相當的重視。青少年也因接近成人的年齡及成熟度,在法律及臨床實務上也逐漸肯認其對於自身的醫療決定擁有自主決定權。然而,兒童不論在法律或是社會觀念之中,均被認定為能力尚未成熟,傳統上認為必須由父母代替其做醫療決定。可是在作者身為一位臨床兒科醫師的臨床實務經驗當中,許多病童往往能表達自己對於醫療決定甚至是臨終決定的自主意見,卻不受到父母或其他成年代理人的採納。
因此,本文將從臨床經驗出發,將所發現許多兒童有能力決定、以及父母無法做出符合兒童利益決定的案例,提出作為本文探討的思考起源。本文主要鎖定未成年人中未滿12歲的兒童進行討論,排除許多文獻早已熱烈討論的青少年人;另外因為立法例上並未賦予未成年人擁有「自主權」,故本文暫不深究兒童法律上的自主權利,而是以探討兒童實質上的「自主性」作為探討的主軸,並以此為未來法律發展的基礎。
本文將首先從「醫病關係的演進」開始,探討一般性「病患自主決定權」之倫理與法律。醫學倫理上涉及包括「生物醫學倫理四原則」以及「告知後同意」;多數國家也將「自主決定權」在法律上定位為憲法層級之人權保障。聯合國兒童權利公約則為現今國際上兒童人權維護的重要指引,也是對於兒童一般自主權正當性的重要依據。至於兒童的自主決定與其決定能力相關,也涉及父母代理決定的討論,故從法律上對於父母子女關係及未成年人保護的討論出發,探討代理決定時的最佳利益判斷,思考兒童醫療決定的問題及衝突,以及在不同年齡適合該年齡得以決定的事項。
在兒童醫療決定上,難題包括為何要重視兒童自主、何人有權決定、如何決定等等,在此議題受到各國重視並不斷發展之下應如何運作。在本文中主要參考了美國以及英國的發展經驗以及建議,提出對於臨床操作的看法。本文認為,可以用兒童醫療「表意權」的行使作為對兒童自主性的肯認,從兒童決定能力的判斷開始,對於具有決定能力的兒童表達其合理意見應充分尊重;若是缺乏決定能力的兒童,則在考量其最佳利益後由父母代理其做出醫療決定。醫療人員基於必須對於病童負責的角色及責任,亦應檢視父母決定是否合理,適時地介入決定以維護兒童最佳利益。
至於在兒童的最佳利益的判斷上,除了要考慮所面對的病況以外,還需要針對兒童未來生理發育和心智發展的影響,整體考量其未來的生活品質;對於臨終的兒童,則應考量是否得到有尊嚴的死亡,此與成年人的思考並無相左。最後,本文將進一步探討較為特殊的臨床狀況,包括面對重症以及急症的病童應如何操作及思考,並重新檢視本文所提出之實際臨床困難案例,建議較為適合的做法,以作為更多臨床個案判斷的參考指引。 / Patients' awareness of self-determination has raised and their rights have been taken into account in clinical consideration because of the change of doctor-patient relationship in recent decades. The right to autonomy was highly positioned at the constitutional level no matter it is contained in the concept of human dignity or the right of privacy. It is also highly valued after “the doctrine of informed consent” was introduced into our country with vigorous development in recent years.
Because adolescents’ age and maturity approach adults, they have been recognized to have sufficient ability and right to make their own medical decisions as well as adults. Children, in the general idea of the society, are concerned not to have sufficient decision making ability and therefore need their parents’ help to make their own medical decisions. However, from clinical experiences, many children could not only express their autonomous opinions but even have the ability to consent to their medical treatments, including life-saving treatments. Unfortunately, children’s opinions were usually ignored, and sometimes their parents could not make decisions in their best interest.
This study will discuss the patient autonomy of children whose ages are under 12 years old. We acknowledge that children do not have legal “right” to autonomy but they still have their own autonomous expression. The ethical and legal bases of patient autonomy are firstly illustrated, including “the four principles approach to bioethics”, “the doctrine of informed consent”, the legal status of “the right to autonomy” at the constitutional level, and the United Nations Convention on the Rights of the Child which is an international guide to children’s human right.
Children’s autonomy is closely related to their decision-making capacity or competence and their age. Furthermore, surrogate decision making plays an important role in children’s affairs. When there is a conflict between the parents and children, the principle of best interest of children should be the leading concern.
Regarding the medical decision of children, difficult problems are: why children’s patient autonomy is vital, who has the right to decide, and how to make a decision. I have reviewed the experiences and suggestions from concept leading countries such as the United States and the United Kingdom. I proposed my own viewpoint and suggest some guidelines on the clinical decision process. My opinion is that children’s right to express should be taken as the confirmation of children’s autonomy. For the children with decision making capacity, we should fully respect his rational decision; for the children without it, parents could make the decisions according to the children’s best interest. Medical staffs, including doctors and nurses, also need to reexamine the parents’ decisions suitable for children’s best interest. At the end of the thesis, I re-examine the clinical cases proposed at the beginning of this thesis, to present my resolution to the cases as guides for future clinical situation.
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