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Role of Law in End-of-Life Decision-Making: Perspectives of Patients, Substitute Decision-Makers and Families 法律在临终决策中的作用:患者、替代决策者和家庭的观点
Pub Date : 2021-03-01 DOI: 10.2139/ssrn.3909636
L. Willmott, B. White, Rachel Feeney, C. Tilse, Jill Wilson, Joanne F. Aitken
The law regulating medical end-of-life decisions aims to support patients to receive high-quality health care. It does so through ensuring treatment received reflects the person's wishes and values and protecting health professionals who provide adequate pain and symptom relief even if that treatment may coincidentally hasten death. However, good decision-making is predicated by those involved, including patients themselves and those supporting patients, being familiar with the law and the role it plays in the decision-making process. This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants' decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.
规范医疗临终决定的法律旨在支持患者获得高质量的医疗保健。它通过确保所接受的治疗反映了个人的愿望和价值观,并保护提供充分缓解疼痛和症状的卫生专业人员,即使这种治疗可能碰巧加速死亡。然而,良好的决策取决于相关人员,包括患者本人和支持患者的人员,熟悉法律及其在决策过程中所起的作用。本文从临终病人及其替代决策者和家属的角度探讨法律在临终决策中的作用。虽然参与者的决策实践往往得到法律框架的支持,但法律的作用在很大程度上是无形的。需要进行社区教育,让公众了解他们的法律权利和责任,并了解法律在支持临终决策方面发挥的作用。
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引用次数: 1
Phasing Out Certificate-of-Need Laws: A Menu of Options 逐步淘汰需求证明法:一个选项菜单
Pub Date : 2020-02-01 DOI: 10.2139/ssrn.3562236
M. Mitchell, Elise Amez Droz, A. Parsons
Certificate-of-need (CON) laws in healthcare are currently found in 36 states and the District of Columbia. These laws require those aspiring to offer certain medical services, acquire certain devices, or open or expand particular medical facilities to first obtain authorization from a regulatory authority. Four decades of research show that CON laws are associated with limited access, diminished quality, and higher costs of care. The most promising CON reform, therefore, is complete repeal, a strategy that has been successfully pursued by 15 states comprising nearly 40 percent of the US population. Complete reform, however, is politically difficult, given the outsized influence of incumbent providers, who have an interest in maintaining the current system. In this policy brief we therefore offer a menu of alternative reforms that can limit the anticompetitive effects of CON laws and illuminate a path toward more comprehensive reform in the future.
医疗保健领域的需求证明(CON)法律目前在36个州和哥伦比亚特区都有。这些法律要求那些有志于提供某些医疗服务、获得某些设备或开设或扩大特定医疗设施的人首先获得监管机构的授权。40年的研究表明,法律与有限的获取、质量下降和更高的医疗成本有关。因此,最有希望的CON改革是彻底废除,这一战略已被15个州成功推行,占美国人口的近40%。然而,全面改革在政治上是困难的,因为现有供应商的影响力过大,他们对维持现有系统感兴趣。因此,在本政策简报中,我们提供了一份可供选择的改革菜单,这些改革可以限制《反竞争法》的反竞争影响,并为未来更全面的改革指明道路。
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引用次数: 2
Prospect Patents, Data Markets and the Commons in Data Driven Medicine. Openness and the Political Economy of Intellectual Property Rights 展望专利、数据市场和数据驱动医学的公地。开放与知识产权政治经济学
Pub Date : 2019-09-23 DOI: 10.1093/scipol/scaa011
K. Sideri
Scholars who point to political influences and the regulatory function of patent courts in the U.S. have long questioned the courts’ subjective interpretation of what ‘things’ can be claimed as inventions. The present article sheds light on a different but related facet: the role of the courts in regulating knowledge production. I argue that the recent cases decided by the U.S. Supreme Court and the Federal Circuit, which made diagnostics and software very difficult to patent and which attracted criticism for a wealth of different reasons, are fine case studies of the current debate over the proper role of the state in regulating the marketplace and knowledge production in the emerging information economy. The article explains that these patents are prospect patents that may be used by a monopolist to collect data that everybody else needs in order to compete effectively. As such, they raise familiar concerns about failure of coordination emerging as a result of a monopolist controlling a resource such as datasets that others need and cannot replicate. In effect, the courts regulated the market, primarily focusing on ensuring the free flow of data in the emerging marketplace very much in the spirit of the ‘free the data’ language in various policy initiatives, yet at the same time with an eye to boost downstream innovation. In doing so, these decisions essentially endorse practices of personal information processing which constitute a new type of public domain: a source of raw materials which are there for the taking and which have become most important inputs to commercial activity. From this vantage point of view, the legal interpretation of the private and the shared legitimizes a model of data extraction from individuals, the raw material of information capitalism, that will fuel the next generation of data intensive therapeutics in the field of data driven medicine.
指出美国专利法院的政治影响和监管功能的学者长期以来一直质疑法院对哪些“东西”可以被称为发明的主观解释。本文揭示了一个不同但相关的方面:法院在规范知识生产中的作用。我认为,最近由美国最高法院和联邦巡回法院裁决的案件,使得诊断和软件很难获得专利,并因各种不同的原因引起了批评,是当前关于国家在新兴信息经济中规范市场和知识生产中的适当角色的辩论的很好的案例研究。这篇文章解释说,这些专利是有前景的专利,可能被垄断者用来收集其他人为了有效竞争而需要的数据。因此,他们提出了熟悉的担忧,即由于垄断者控制了其他人需要且无法复制的资源(如数据集),从而出现协调失败。实际上,法院对市场进行了监管,主要集中在确保新兴市场中数据的自由流动,这与各种政策举措中“释放数据”语言的精神非常相似,但同时也着眼于促进下游创新。在这样做的过程中,这些决定基本上认可了个人信息处理的做法,这些做法构成了一种新型的公共领域:一种可供获取的原材料来源,这些原材料已成为商业活动中最重要的投入。从这个有利的角度来看,对私人和共享的法律解释使从个人中提取数据的模型合法化,这是信息资本主义的原材料,这将推动数据驱动医学领域的下一代数据密集型治疗。
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引用次数: 1
Grandma Got Run Over by the Doctor: An Examination of the End of Life Choice Bill with Reference to the German Approach 奶奶被医生碾了:参照德国方法对生命终结选择法案的审查
Pub Date : 2019-09-02 DOI: 10.2139/ssrn.3623589
M. Noakes
With the advent of the End of Life Choice Bill 2019, the matter of assisted dying has again come to the forefront of current political debate. This Bill, like past attempts to create an assisted dying framework, lacks a strong underlying value guiding its approach. In 2017, Germany confronted the topic of assisted dying. Unlike New Zealand’s legislature-driven approach, the German situation came about following a judicial challenge to laws which impeded the claimant’s wife’s right to uphold her dignity. This paper argues that the German approach to assisted dying, with its underlying value of dignity, results in a better assisted dying scheme than the New Zealand Bill. This focus on dignity leads to two major benefits which this paper investigates. The first is that it results in a process which legalises only medically assisted suicide and not euthanasia. This distinction, if incorporated into the New Zealand Bill, could result in a safer and more Bill of Rights Act-compliant approach. The second benefit is that having dignity as a cornerstone leads to a principled and non-arbitrary set of eligibility criteria. This paper also examines and recommends a further aspect of the German approach: its prohibition on the commercialisation of assisted dying.
随着《2019年生命终结选择法案》的出台,协助死亡问题再次成为当前政治辩论的前沿。这项法案,就像过去试图建立一个辅助死亡框架一样,缺乏一个强有力的潜在价值来指导它的方法。2017年,德国面临着协助死亡的话题。与新西兰立法驱动的做法不同,德国的情况是在对妨碍索赔人妻子维护其尊严权利的法律提出司法挑战之后发生的。本文认为,德国的方法协助死亡,其潜在的价值尊严,导致一个更好的协助死亡计划比新西兰法案。这种对尊严的关注带来了本文所研究的两个主要好处。首先,它导致了一个只将医疗辅助自杀合法化而不将安乐死合法化的过程。这种区别,如果纳入新西兰法案,可能会导致更安全,更符合《权利法案》的做法。第二个好处是,以尊严为基石,可以形成一套有原则的、非武断的资格标准。本文还研究并建议了德国方法的另一个方面:禁止协助死亡的商业化。
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引用次数: 0
Credit, Default, and Optimal Health Insurance 信用、违约和最佳健康保险
Pub Date : 2019-07-01 DOI: 10.2139/ssrn.3429441
Youngsoo Jang
How do defaults and bankruptcies affect optimal health insurance policy? I answer this question using a life-cycle model of health investment with the option to default on emergency room (ER) bills and financial debts. I calibrate the model for the U.S. economy and compare the optimal health insurance in the baseline economy with that in an economy with no option to default. With no option to default, the optimal health insurance is similar to the health insurance system in the baseline economy. In contrast, with the option to default, the optimal health insurance system (i) expands the eligibility of Medicaid to 22 percent of the working-age population, (ii) replaces 72 percent of employer-based health insurance with a private individual health insurance plus a progressive subsidy, and (iii) reforms the private individual health insurance market by improving coverage rates and preventing price discrimination against people with pre-existing conditions. This result implies that with the option to default, households rely on bankruptcies and defaults on ER bills as implicit health insurance. More redistributive healthcare reforms can improve welfare by reducing the dependence on this implicit health insurance and changing households’ medical spending behavior to be more preventative.
违约和破产如何影响最优健康保险政策?我使用健康投资的生命周期模型来回答这个问题,该模型带有急诊室账单和金融债务违约的选项。我为美国经济校准了模型,并将基线经济中的最佳医疗保险与没有违约选择的经济中的最佳医疗保险进行了比较。在没有违约选项的情况下,最优健康保险类似于基线经济中的健康保险制度。相比之下,对于违约选项,最优的健康保险系统(i)将医疗补助的资格扩大到22%的工作年龄人口,(ii)用私人个人健康保险加上累进补贴取代72%的雇主健康保险,(iii)通过提高覆盖率和防止对已有疾病的人的价格歧视来改革私人个人健康保险市场。这一结果表明,有了违约选择权,家庭就会依赖破产和急诊账单违约作为隐性健康保险。更多的再分配医疗改革可以通过减少对这种隐性医疗保险的依赖,改变家庭的医疗支出行为,使其更具预防性,从而改善福利。
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引用次数: 5
A Reevaluation of the Effects of State and Federal Dependent Coverage Mandates on Health Insurance Coverage 对健康保险覆盖范围的州和联邦依赖保险授权的影响的重新评估
Pub Date : 2018-07-27 DOI: 10.2139/ssrn.3227212
Scott Barkowski, J. McLaughlin, Alex Ray
State governments have been passing laws mandating insurers to allow young adults to stay on their parents' health insurance plans past the age of 19 since the 1970s. These laws were intended to increase coverage, but research has been inconclusive on whether they were successful. We reconsider the issue with an improved approach featuring three key elements: a new, accurate dataset on state mandates; recognition that effects could differ greatly by age due to take up rate differences; and avoidance of endogenous characteristics when identifying mandate eligible young adults. We find the impact of the state mandates was concentrated among the 19 to 22 age group, for which dependent coverage increased sharply by about 6 percentage points. Overall coverage increased by almost 3 percentage points, with the difference explained by crowd out of public insurance. Crowd out of coverage through young adults own jobs was negligible. For those above age 22, we find little evidence of changes in coverage. We incorporate these insights into analysis of the Affordable Care Act (ACA) dependent coverage mandate, showing its effects were focused among those whom were previously ineligible for state mandates, or were eligible but older than 22. We argue the ACA's impact was broader because it had fewer eligibility conditions that implied parental dependence; young adults could be on their parents' insurance but still be relatively independent.
自20世纪70年代以来,各州政府一直在通过法律,要求保险公司允许19岁以上的年轻人继续参加父母的医疗保险计划。这些法律的目的是增加保险范围,但研究尚未确定它们是否成功。我们通过一种改进的方法来重新考虑这个问题,该方法具有三个关键要素:一个关于州授权的新的、准确的数据集;认识到由于摄取率的差异,不同年龄的影响可能会有很大差异;在确定符合任务条件的年轻人时,避免内生特征。我们发现,国家强制要求的影响主要集中在19至22岁年龄组,这一群体的依赖覆盖率急剧上升了约6个百分点。总体覆盖率增加了近3个百分点,这一差异的原因是人们纷纷退出公共保险。由于年轻人自己的工作而被挤出医保的比例可以忽略不计。对于22岁以上的人,我们发现几乎没有证据表明覆盖率发生了变化。我们将这些见解纳入对《平价医疗法案》(ACA)依赖的覆盖范围的分析中,显示其影响主要集中在以前没有资格获得州授权的人身上,或者有资格但年龄超过22岁的人身上。我们认为ACA的影响更广泛,因为它的资格条件较少,暗示父母依赖;年轻人可以享受父母的保险,但仍然相对独立。
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引用次数: 2
Reproductive Health: Morals, Margins and Rights 生殖健康:道德、边际和权利
Pub Date : 2018-05-01 DOI: 10.1111/1468-2230.12340
R. Scott
Reproductive interventions and technologies have the capacity to generate profound societal unease and to provoke hostile reactions underpinned by various moral concerns. This paper shows that this position currently goes relatively unchecked by the European Court of Human Rights, which allows the margin of appreciation and consensus doctrines significantly to limit the scope of reproductive rights under the right to respect for private and family life under Article 8. This occurs both in relation to the interest in avoiding reproduction at stake in abortion, and that in achieving it at stake in medically assisted reproduction. The paper demonstrates significant flaws in the Court's framing and deployment of these doctrines in its reproductive jurisprudence. It argues that, as regards existing and upcoming reproductive interventions and technologies, the Court should attend to the concept of reproductive health, long recognised in international conventions and policy materials.
生殖干预和技术有能力产生深刻的社会不安,并引起各种道德关切的敌对反应。本文表明,这一立场目前相对不受欧洲人权法院的制约,它允许升值幅度和共识理论大大限制了第八条规定的尊重私人和家庭生活权利下的生殖权利的范围。这种情况既发生在避免因堕胎而危及生殖的利益方面,也发生在通过医疗辅助生殖实现危及生殖的利益方面。本文显示了法院在其生殖法学中对这些理论的框架和运用的重大缺陷。它认为,就现有的和即将到来的生殖干预措施和技术而言,法院应注意国际公约和政策材料长期承认的生殖健康概念。
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引用次数: 6
Smoke and Mirrors: Barriers to Compassionate-Use of Marijuana in Texas 烟雾与镜子:德克萨斯州同情使用大麻的障碍
Pub Date : 2016-12-15 DOI: 10.2139/SSRN.2893809
Cielo Fortin-Camacho
Last year’s presidential campaign marked one of the most dramatic and unpredictable presidential elections in recent decades. As each party’s campaign became a topic of discussion for families across the country, so did marijuana, with the election marking the first presidential campaign where mainstream candidates openly endorsed ending federal marijuana prohibition. As party candidates battled it out election night — November 8, 2016 — the biggest winner seemed to be marijuana. Nine states voted on marijuana-related measures that night — four related to medical marijuana and five calling for recreational use — eight of them passed. Today, over half of the country has comprehensive medical marijuana laws and one fifth of Americans live somewhere where adults twenty-one and older can legally consume recreational marijuana. The 84th Legislative Session was historic in the movement to regulate marijuana in Texas, with five bills proposed to reduce penalties for possession of marijuana and four additional bills proposed to provide legal access to medical marijuana. Only one bill was signed into law, however, and advocates worry the program may soon prove ineffective. For now, Texans remain among the minority as the largest of nineteen states without legal access to marijuana. In June of 2015, Texas Republican Governor Greg Abbot signed into law the Texas Compassionate-Use Act, allowing for the prescription of low-THC marijuana (“CBD”) to patients with intractable epilepsy. Before signing the bill, Abbot emphasized it would not open the door for broader marijuana legalization, but would “provide healing and hope for children that are afflicted by unrelenting seizures.” Critics, however, warned the bill was “unworkable” as enacted, pointing predominantly to its requirement that doctor’s ‘prescribe’ the CBD treatment its patients, which is federally illegal and unlikely to entice physicians to participate in the program. Since then, administrative rules and proposed amendments to the rules have further complicated the law’s potential. This article identifies the law’s shortcomings and ultimately suggest for Texas legislators reconvene to amend the law’s wording and for rule-makers to revert back to the rules proposed in December of 2015. Part I of this article describes the law’s history and legislative intent. Part II briefly describes the law’s basic structure and purpose. Part III discusses the financial barriers to the laws effectiveness, focusing on unreasonable security standards, market potential, and the burden of passing cost down to critically ill patients. Part IV discusses the criminal barriers to the Act’s effectiveness, focusing on the administrative seed sourcing requirements, the prescription requirement, and the law’s registry program.
去年的总统竞选是近几十年来最具戏剧性和最不可预测的总统选举之一。随着各党派的竞选活动成为全国各地家庭讨论的话题,大麻也成为了热门话题。这次选举是主流候选人首次公开支持结束联邦大麻禁令的总统竞选。在2016年11月8日的大选之夜,各党派候选人展开了激烈的角逐,最大的赢家似乎是大麻。当天晚上,9个州就大麻相关措施进行了投票,其中4个与医用大麻有关,5个呼吁娱乐用途,其中8个通过了。今天,超过一半的国家有全面的医用大麻法律,五分之一的美国人生活在21岁及以上的成年人可以合法消费娱乐性大麻的地方。第84届立法会议在德克萨斯州的大麻监管运动中具有历史意义,其中有五项法案提议减轻对拥有大麻的处罚,另有四项法案提议提供合法获得医用大麻的途径。然而,只有一项法案被签署成为法律,倡导者担心该项目可能很快就会被证明是无效的。目前,在19个没有合法获取大麻的州中,德州仍然是最大的少数族裔。2015年6月,德克萨斯州共和党州长格雷格·阿博特签署了《德克萨斯州同情使用法案》,允许为顽固性癫痫患者开具低thc大麻(“CBD”)处方。在签署该法案之前,阿博特强调,它不会为更广泛的大麻合法化打开大门,但会“为那些遭受持续癫痫发作折磨的儿童提供治疗和希望”。然而,批评人士警告说,该法案“行不通”,主要是指它要求医生“开”CBD给病人治疗,这在联邦政府是非法的,不太可能吸引医生参与该计划。从那时起,行政法规和拟议的规则修正案使法律的潜力进一步复杂化。本文指出了该法律的缺点,并最终建议德克萨斯州立法者重新召开会议,修改法律的措辞,并建议规则制定者恢复到2015年12月提出的规则。本文第一部分阐述了该法律的历史沿革和立法意图。第二部分简要介绍了该法的基本结构和目的。第三部分讨论了法律生效的经济障碍,重点是不合理的安全标准、市场潜力和将成本转嫁给危重病人的负担。第四部分论述了制约该法案生效的刑事障碍,重点论述了行政种子来源要求、时效要求和法律登记程序。
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引用次数: 0
The Effect of Health Insurance Mandate on Labor Market Activity and Time Allocation: Evidence from the Federal Dependent Coverage Provision 健康保险授权对劳动力市场活动和时间分配的影响:来自联邦依赖保险条款的证据
Pub Date : 2016-11-11 DOI: 10.2139/ssrn.2584093
Vinish Shrestha, Otto Lenhart
The primary goal of the federal dependent coverage mandate was to increase health insurance coverage among young adults, the group with the lowest prevalence of health insurance coverage. To understand the full impacts of the federal dependent coverage mandate, it is important to evaluate how the mandate affects labor market activities and time spent away from work among young adults. Using data from the Consumer Population Survey (CPS) and the American Time Use Survey (ATUS) and implementing a difference-in-differences framework, we find: 1) Young adults substitute employer sponsored insurance for dependent coverage, 2) Affected individuals reduce their work time and switch from full- to part-time employment, and 3) The additional time from reduced labor market activity is reallocated towards more time spent on leisure activities. The effects of the mandate on labor market activities are stronger in later years. Furthermore, we show that young adults do not increase the time they spend on activities that could enhance their human capital such as education and health, which reemphasizes potential unintended consequences of the mandate. These findings suggest that future work is necessary to fully understand the overall welfare effects of the policy.
联邦受抚养人保险任务的主要目标是增加年轻人的健康保险覆盖面,年轻人是健康保险覆盖率最低的群体。要了解联邦依赖保险强制令的全面影响,重要的是要评估强制令如何影响劳动力市场活动和年轻人离开工作的时间。利用消费者人口调查(CPS)和美国时间使用调查(ATUS)的数据,并实施差异中的差异框架,我们发现:1)年轻人替代雇主赞助的保险,2)受影响的个人减少了工作时间,从全职工作转向兼职工作,3)劳动力市场活动减少的额外时间被重新分配给更多的时间用于休闲活动。该指令对劳动力市场活动的影响在以后几年会更强。此外,我们表明,年轻人并没有增加他们在教育和卫生等可增强其人力资本的活动上花费的时间,这再次强调了任务可能带来的意想不到的后果。这些发现表明,未来的工作是必要的,以充分了解该政策的整体福利效应。
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引用次数: 1
Public Support for the Right to Euthanasia: The Competing Roles of Values and Religiosity Across 35 Nations 公众对安乐死权利的支持:35个国家价值观和宗教信仰的竞争角色
Pub Date : 2016-04-01 DOI: 10.2139/ssrn.2757670
M. Rudnev, Alexandra Savelkaeva
The determination of moral views has been frequently reduced to the effects of religiosity, although the effect of human values was acknowledged. This paper attempts to answer the question whether traditional religiosity is still the major regulator of moral attitudes and whether non-religious values have an independent impact. This is studied using attitudes toward euthanasia as a representative case of moral attitudes, since it is still widely discussed. At first, four hypotheses regarding the justifiability of euthanasia are reformulated regarding traditional religiosity, the values of autonomy, their interactions and effects of vulnerability. The multilevel analysis of the data from the 5th wave of World Values Survey showed that across 35 countries both traditional religiosity and human values have significant and independent impacts on the recognition of the right to euthanasia. Multilevel path analysis demonstrated that the effect of religiosity is partially mediated by the both values of autonomy and conservative ones. In addition, as a result of the low level of general public awareness of the topic, different kinds of capital have an inconsistent impact. We conclude with a discussion of the competing and additive roles of religiosity and the values of autonomy as modern regulators of public moral attitudes
尽管人类价值观的影响是公认的,但道德观的决定常常被归结为宗教信仰的影响。本文试图回答传统的宗教信仰是否仍然是道德态度的主要调节器,以及非宗教价值观是否有独立的影响。这是用对安乐死的态度作为道德态度的代表性案例来研究的,因为它仍然被广泛讨论。首先,从传统的宗教性、自主性的价值、它们之间的相互作用以及脆弱性的影响等方面,对安乐死的正当性进行了重新表述。对第五次世界价值观调查数据的多层次分析表明,在35个国家中,传统宗教信仰和人类价值观对安乐死权的承认都有显著而独立的影响。多层次路径分析表明,宗教信仰的影响部分中介于自治价值观和保守价值观。此外,由于公众对该话题的认知水平较低,不同类型的资本对该话题的影响并不一致。最后,我们讨论了宗教虔诚和作为现代公共道德态度调节器的自治价值的竞争和附加作用
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引用次数: 1
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