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Advance care planning: a multifaceted contributor to human rights-based care
World Psychiatry ( IF 60.5 ) Pub Date : 2024-09-16 , DOI: 10.1002/wps.21234
Heather Zelle 1
Affiliation  

Galderisi et al1 address advance directives in the section on non-discriminatory mental health law, illustrating the need for better operationalization of concepts such as “will and preferences”, if we are to honor persons’ autonomy consistently and meaningfully. Advance directives provide useful fodder for debating autonomy and decision-making capacity in the midst of health crises. However, I would like to expand here upon their broader relevance to a human rights framework of mental health care.

Advance directives – and the overarching practice of advance care planning – instantiate several of the core principles and concerns of the human rights framework, and do so well before they may be relied upon during a period of decision-making incapacity. Advance care planning is an essential component of person-centered care. It empowers individuals to consider and express their health care values. Its process and products (e.g., an advance directive) are literal exercises in self-determination, autonomy, empowerment and responsibility. Indeed, individuals with mental illnesses who have completed advance directives report increased feelings of self-determination, autonomy and empowerment2.

A corollary of the emphasis on self-direction in recovery is recognition that all individuals have personal responsibility for their own self-care and actively take part in their recovery journey. This focus on responsibility coincides with an understanding of mental illness as a chronic health condition, one that requires ongoing efforts by people to not only attain but maintain their wellness.

Although there is no universal definition of recovery, common elements in addition to autonomy and self-determination include relationships and respect3. Recovery may emphasize and center people in their own care and well-being, but it also recognizes the importance of relationships with loved ones and communities. Among the responsibilities of communities is providing resources and opportunities to address discrimination and to promote inclusion. Respect is included because acceptance of and appreciation for people with mental illnesses by communities and systems, including health care systems and actors, are requisite for achieving recovery. Relatedly, individuals with mental illnesses who have completed advance directives report increased feelings of working alliance with providers2.

Thus, in these ways and others4, the process of advance care planning and the resultant advance directive serve a range of important goals in recovery-oriented, human rights-based care, and do so before acute circumstances raise difficult questions about decision-making capacity, will and preferences, and whether coercive interventions are justifiable. Speaking for a moment to acute circumstances, however, research does suggest that advance directives with instructions for mental health care may contribute to reduced likelihood of experiencing coercive interventions5.

Advance directives, despite their intuitive appeal and relevance to recovery-oriented, person-centered care, continue to be underutilized. Several factors likely contribute, including misunderstandings about administrative requirements, difficulty in sharing copies across providers, provider misapprehensions about restrictive instructions and refusals, and others6, 7.

The idea has endured, however, and improvements in how advance planning is conceptualized (e.g., as more than a form to fill out, but rather a process of exploring and documenting values and preferences) and supported (e.g., facilitators to assist individuals) are helping to realize how this planning, if normative, could enhance public mental health. Rather than circumscribing consideration to only instances in which a decision must be made and an indication of the person's will or preference is sought, the larger process of advance care planning as a regular part of health care serves the prevention and promotion aims of public mental health. A meaningful integration of advance care planning into standard practice, so that it becomes a common point of discussion, and robust resources are available and accessible, would significantly contribute to the culture shift called for by Galderisi et al.

Psychiatrists may rarely be the professionals able to set aside sufficient time to be primary facilitators of advance care planning. Nonetheless, they can and should find ways to support the expansion of this planning. Informing the people they serve about advance care planning opportunities and tools, and encouraging clients’ interest in such topics, will be impactful.

One factor contributing to the slow uptake of advance directives is that some individuals doubt that providers will honor, or even seek out, their advance care planning documents. Psychiatrists can build and maintain trust (incidentally, a public health moral consideration) by validating the worth of undertaking advance care planning to the persons they serve, thus communicating a commitment to recovery-oriented care and respect for persons’ autonomy. In addition to supporting persons they serve, psychiatrists can also further advance care planning in everyday practice by supporting efforts by colleagues in their institutions who are championing the integration of this planning.

In sum, advance care planning and advance directives are practices that enshrine positive rights and the exercise of persons’ autonomy, rather than just “protecting” negative rights of individuals by restricting a State's detention power. That being said, policy establishing and supporting advance care planning has the potential to reify stereotypes about legal capacity and discriminatory practices. The potential of advance directives in the mental health field has long been recognized8, but, for the last several decades, discussion and legislation have tended to segregate planning for mental health care.

While terms such as “psychiatric advance directives” were understandably in line with the generally segregated approach to mental health care, and may have been helpful for making their applicability to mental illnesses explicit, the time has come to de-emphasize the distinction. Enabling legislation that presents advance directives for mental health as separate from existing law about advance care planning reifies a distinction that contemporary conceptualizations of “whole health” have moved past.

Policies that require more steps – such as evaluation by a physician to document capacity – for mental health advance care documents are instances of discriminatory mental health law. Concerns are similarly raised by differential policies and criteria for overriding advance directives that are predicated upon a presumed categorical difference between “medical” and “psychiatric” advance directives.

Less obvious ways by which discriminatory use of advance directives for mental health may arise include a paucity of training and understanding about what decision-making capacity entails and how to assess it7. Relatedly, defensive practices may lead providers to inadvertently and even purposely delay or avoid obtaining and reviewing an advance directive for a person with mental illness out of concern that it will contain impractical and restrictive instructions (a scenario that research suggests is in fact quite rare9).

Advance care planning could be transformational if the process as well as the products and their application receive equal emphasis, if they are widely and consistently integrated into health care systems without discrimination, and if providers “embrace the human rights framework and champion the promotion of mental health and prevention of mental disorders”1. Advance care planning and advance directives are archetypal of a recovery-oriented, human rights-based approach to mental health care, and we should capitalize on all they have to offer.



中文翻译:


预先护理计划:对基于人权的护理的多方面贡献



Galderisi 等人1在非歧视性心理健康法部分阐述了预先指示,说明如果我们要一致且有意义地尊重个人的自主权,就需要更好地实施“意愿和偏好”等概念。预先指示为在健康危机中讨论自主权和决策能力提供了有用的素材。然而,我想在此详细阐述它们与精神卫生保健人权框架的更广泛相关性。


预先指示——以及预先护理计划的总体实践——具体化了人权框架的几项核心原则和关切,并在决策无能力期间可以依赖它们之前就很好地做到了这一点。预先护理计划是以人为本的护理的重要组成部分。它使个人能够考虑和表达他们的医疗保健价值观。其流程和产品(例如,预先指示)是自决、自主、授权和责任的字面练习。事实上,完成预先医疗指示的精神疾病患者的自决、自主和赋权感有所增强2


强调康复中的自我指导的必然结果是认识到所有个人都对自己的自我护理负有个人责任,并积极参与他们的康复之旅。这种对责任的关注与对精神疾病作为一种慢性健康状况的理解不谋而合,这种疾病需要人们不断努力才能获得并维持健康。


尽管康复没有通用的定义,但除了自主和自决之外,共同要素还包括关系和尊重3 。康复可能会强调并集中人们对自己的照顾和福祉,但它也认识到与亲人和社区的关系的重要性。社区的责任之一是提供资源和机会来解决歧视问题并促进包容。其中包括尊重,因为社区和系统(包括卫生保健系统和行为者)对精神疾病患者的接受和赞赏是实现康复的必要条件。与此相关的是,完成预先医疗指示的精神疾病患者表示,与医疗服务提供者的工作联盟感有所增强2


因此,通过这些方式和其他方式4 ,预先护理计划的过程和由此产生的预先指示服务于以康复为导向、基于人权的护理的一系列重要目标,并且在紧急情况引发有关决策的困难问题之前实现这一目标。能力、意愿和偏好,以及强制干预是否合理。然而,就紧急情况而言,研究确实表明,包含精神卫生保健说明的预先指示可能有助于降低经历强制干预的可能性5


尽管预先指示具有直观的吸引力并且与以康复为导向、以人为本的护理相关,但仍然没有得到充分利用。有几个因素可能会造成这种情况,包括对管理要求的误解、在提供商之间共享副本的困难、提供商对限制性指示和拒绝的误解以及其他6, 7


然而,这个想法已经持续存在,并且预先计划的概念化(例如,不仅仅是一个需要填写的表格,而是一个探索和记录价值观和偏好的过程)和支持(例如,帮助个人的促进者)方面的改进正在得到改善。帮助认识到该规划如果规范的话,可以如何增强公众的心理健康。预先护理计划作为医疗保健的常规部分,不仅限于必须做出决定并寻求个人意愿或偏好的指示的情况,而是服务于预防和促进公众心理健康的目标。将预先护理计划有意义地整合到标准实践中,使其成为讨论的共同点,并提供充足的资源,将极大地促进 Galderisi 等人所呼吁的文化转变。


精神科医生可能很少是能够留出足够时间作为预先护理计划的主要促进者的专业人士。尽管如此,他们可以而且应该找到方法来支持这一计划的扩展。向他们服务的人们通报预先护理计划的机会和工具,并鼓励客户对这些主题的兴趣,将会产生影响。


导致预先医疗指示采用缓慢的一个因素是,一些人怀疑提供者会尊重甚至寻求他们的预先护理计划文件。精神科医生可以通过验证向他们所服务的人进行预先护理计划的价值来建立和维持信任(顺便说一下,公共卫生道德考虑),从而传达对以康复为导向的护理的承诺和对个人自主权的尊重。除了支持他们所服务的人之外,精神科医生还可以通过支持其机构中倡导整合该计划的同事的努力,进一步推进日常实践中的护理计划。


总之,预先护理计划和预先指示是体现积极权利和行使个人自主权的做法,而不仅仅是通过限制国家拘留权来“保护”个人的消极权利。话虽如此,制定和支持预先护理计划的政策有可能具体化关于法律能力和歧视性做法的陈规定型观念。预先指示在精神卫生领域的潜力早已得到认可8 ,但在过去的几十年里,讨论和立法往往将精神卫生保健的规划分开。


虽然“精神病学预先指示”等术语符合普遍隔离的精神卫生保健方法,并且可能有助于明确其对精神疾病的适用性,但现在是时候不再强调这种区别了。立法将心理健康预先指示与预先护理计划的现行法律分开,体现了当代“整体健康”概念已经超越的区别。


需要更多步骤(例如由医生评估以记录精神健康预先护理文件的能力)的政策是歧视性精神健康法的实例。同样,基于“医疗”和“精神病学”预先医疗指示之间假定的类别差异而制定的凌驾预先医疗指示的不同政策和标准也引发了担忧。


心理健康预先指示的歧视性使用可能会出现的不太明显的方式包括缺乏对决策能力所需内容以及如何评估决策能力的培训和了解7 。与此相关,防御性做法可能会导致医疗服务提供者无意中甚至故意延迟或避免获取和审查针对精神疾病患者的预先指示,因为担心其中包含不切实际和限制性的指示(研究表明这种情况实际上相当罕见9) )。


如果流程、产品及其应用受到同等重视,如果它们不受歧视地广泛、一致地纳入卫生保健系统,如果提供者“拥抱人权框架并倡导促进心理健康”,那么预先护理计划可能会带来变革。健康与精神障碍的预防》 1 .预先护理计划和预先指示是以康复为导向、基于人权的精神卫生保健方法的典型,我们应该充分利用它们所提供的一切。

更新日期:2024-09-21
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