Parents and medical professionals: conflict, cooperation, and best interests

Abstract This paper seeks to engage with the ideas expressed by Professor Brazier in her commentary on the Charlotte Wyatt case and to develop contemporary analysis around parental rights, notions of best interests, and shared decision-making between parents and professionals. The article begins by setting the scene in relation to parental/professional conflict and frames the discussion in the context of medical decision-making. Parental rights are then explored before the analysis progresses to how the concept of best interests has recently developed. Finally, the article investigates the benefits of compromise, cooperation, and shared decision-making as the most effective method for resolving disputes concerning children.     

Domestic violence and high conflict are not the same: a gendered analysis

In child custody decision-making experiences of domestic violence and high conflict are not the same. Legislative reform has not yet been guided by the parent voice to inform differentiated responses that keep women and children safe. Available literature in child custody decision-making focuses on outcome research regarding children’s adjustment and well-being. Debates about types of post-separation arrangements have yet to find agreement in three under-researched areas: (a) high conflict, (b) domestic violence; and (c) children under four. Yet, Canadian legislation supports shared parenting arrangements that privilege the dominant, powerful parent in situations of domestic violence. Based on a Canadian study that explores the parent perspectives and experiences of child custody decision-making, this paper privileges a sub-group of participants; five women, all survivors of domestic violence; defined here as both physical violence and coercive control. Data collection includes one-on-one tape-recorded interviews. Thematic analysis reveals that shared parenting is neither the goal, nor does it meet the needs of these women. The findings illuminate the importance of differentiating parent experience as distinct groups, and reinforces the notion of the state’s role in the reproduction of gendered power. Legislative reform and collaborative community practices are critical to facilitate healthy differentiated responses.     

When benefitting a patient increases the risk for harm for third persons — The case of treating pedophilic Parkinsonian patients with deep brain stimulation

This paper investigates the question whether it is ethically justified to treat Parkinsonian patients with known or suspected pedophilia with deep brain stimulation — given increasing evidence that this treatment might cause impulse control disorders, disinhibition, and hypersexuality. This specific question is not as exotic as it looks at a first glance. First, the same issue is raised for all other types of sexual orientation or behavior which imply a high risk for harming other persons, e.g. sexual sadism. Second, there are also several (psychotropic) drugs as well as legal and illegal leisure drugs which bear severe risks for other persons. We show that Beauchamp and Childress' biomedical ethics fails to derive a veto against medical interventions which produce risks for third persons by making the patients dangerous to others. Therefore, our case discussion reveals a blind spot of the ethics of principles. Although the first intuition might be to forbid the application of deep brain stimulation to pedophilic patients, we argue against such a simple way out, since in some patients the reduction of dopaminergic drugs allowed by deep brain stimulation of the nucleus subthalamicus improves impulsive control disorders, including hypersexuality. Therefore, we propose a strategy consisting of three steps: (1) risk assessment, (2) shared decision-making, and (3) risk management and safeguards.     

Informed consent for patient care--VA. Final rule

This document amends VA medical regulations concerning informed consent for patient care. It describes the requirements for obtaining and documenting informed consent. It also describes the types of treatments or procedures for which the patient's or surrogate's signature on a VA-authorized form is required and establishes a list and priority of surrogates authorized to act on behalf of patients who lack decision-making capacity. Further, it establishes an internal decision-making process for patients who lack decision-making capacity and who have no authorized surrogate. This is intended to protect patient rights and ensure that the patient (or the patient's surrogate or representative) receives sufficient information to make an informed health-care decision. authorized form is required and establishes a list and priority of surrogates authorized to act on behalf of patients who lack decision-making capacity. Further, it establishes an internal decision-making process for patients who lack decision-making capacity and who have no authorized surrogate. This is intended to protect patients rights and ensure that the patient (or the patient's surrogate or representative) receives sufficient information to make an informed health-care decision.     

试论医疗机构及其医务人员的伦理困境与法律对策——以法定医疗伦理损害责任为背景

在医疗伦理损害责任背景下,医疗机构及其医务人员在具体履行医疗告知义务时、患者(特定情况下其近亲属)知情不同意时、以及面临具体法之局限性时,常常陷于对患者的知情权、生命健康权、自主决定权、乃至自身的法律责任风险进行个人抉择的伦理困境。尽管导致伦理困境的原因是多方面的,但从法律视角来看,制定明确、规范的医疗伦理行为指引,建立解决医疗伦理困境的常设机构,健全医疗风险规避、医疗社会保障和医疗伦理督察制度,应是现实可行的应对之策。     

HealthConnect and the duty of care: a dilemma for medical practitioners

This article asks whether medical practitioners' duty of care to their patients will encompass participation in the HealthConnect shared electronic records initiative. Medico-legal aspects of the HeathConnect scheme relating to the nature of shared electronic health record summaries (SEHRS) are examined, focusing on their function as an element of patient care and their ultimate purpose. The analysis is based on the premise that an incomplete and hence inaccurate shared electronic health record summary is clinically and legally more perilous than no record at all.     

Appeals against detention in conditions of excessive security: outcomes and decision-making

The Mental Health (Care and Treatment) Scotland Act 2003 introduced the right for patients to appeal against detention in conditions of excessive security initially to those in high security. Aim: to further investigate appeal outcomes and to examine Tribunal decision-making. Results: responsible medical officer support, being on the transfer list and not having a diagnosis of learning disability increased the chances of a successful appeal. Qualitative analysis of the Tribunal’s decision-making produced 5 themes and 17 subthemes. These were used to develop a ‘checklist’ framework to improve understanding of relevant appeal factors. Conclusions: Neither appeal outcomes nor patient characteristics have changed over time. The checklist may be useful as a training tool and clinical guide. This study is timely given that the Mental Health (Scotland) Act 2015 extended the right of appeal against excessive security to patients detained within medium secure units from November 2015.     

Capacity and medical self-determination in Australia

The expansion of patients' rights and the increasing complexity of the science of medicine raises serious legal and social questions, particularly when they pertain to end-of-life decision-making. Medical science continues to find ways of maintaining or extending life in a body or mind affected by disease or trauma and regular advances in medical technology and practice mean that the natural course of illness or injury will rarely be uninterrupted by some form of medical intervention. This progressive "medicalisation" of death, together with enhanced patient autonomy, means that choices can increasingly be made regarding medical treatment which may ultimately influence both the time and the way in which a person dies. This article examines both legislation and the common law in Australia particularly as it pertains to medical decision-making at end-of-life and the patient's right of self-determination.     

The Dutch Euthanasia Act and related issues

In 2002 the Dutch Euthanasia Act came into force. This Act is the result of a lengthy developmental process. It codifies the requirements that have evolved in case law and medical ethics since 1973. Empirical data indicate that the Dutch euthanasia practice is stabilising. Euthanasia and assisted suicide occur in 2.7% of all deaths. Now that the Act has been passed, the focus is on improving the quality of medical decision-making. From an international perspective, the Dutch legislation is exceptional. However, it appears that other countries and international organisations are considering euthanasia legislation as well. It remains to be seen how influential the Dutch model will prove to be.     

Disclosure of medical information to the surrogate of a patient who lacks decision-making capacity. Final rule

This document amends Department of Veterans Affairs (VA) regulations to reflect changes made by section 504 of the Caregivers and Veterans Omnibus Health Services Act of 2010. Section 504 authorizes a VA practitioner, when the practitioner deems it necessary to ensure an informed medical decision, to share certain, otherwise protected medical information with the representative of a patient who lacks decision-making capacity. This rulemaking amends VA regulations consistent with this new authority.     

Proposed changes to the hospital-medical staff relationship to improve quality of care

Medical staff attorney Snelson answers the Colloquium's charge, "What exactly has to change in the hospital-medical staff relationship for health care quality to be improved?" Her response emphasizes the logic of having clinicians vested with authority to establish policies concerning the clinical decision-making. The article discusses the cases defining the medical staff bylaws as contractual in nature, and the problem of hospital attorneys demanding unilateral amendments to bylaws. Bylaw clauses that would chill medical opinion and communication or denigrate clinical recommendations are discussed. Ms. Snelson advocates for the inclusion of the medical staff organization in exclusive contract and other clinical decision-making, and includes sample bylaw language enacting her recommendations.     

Medical decision-making for incapacitated elders: A "therapeutic interests" standard

Some older individuals lack sufficient present cognitive and/or emotional ability to make and express autonomous decisions personally. In those situations, health-care providers routinely turn to available formal or informal surrogates who often must apply the best interests standard in making decisions for the incapacitated person. This article contends that defining the best interests standard of surrogate decision-making for older adults in terms of optimal or ideal choices (truly the patient's "best" interests) frequently sets out an unrealizable goal for surrogates to satisfy. Instead, a decision-making standard based on the incapacitated person's "therapeutic" interests is more realistic and hence more honest to adopt and apply from legal, ethical, and medical perspectives.     

公司共同决策法律制度研究——以“职工满意度”为视角

职工参与共同决策是公司资本民主化和管理民主化的主要实现途径,起源于德国共同体文化的这一制度旨在保护职工权益、协调企业中劳资关系.寻找两者利益的平衡点,通过对不同企业的探索性调研,借助职工满意评价工具分析共同决策制度实施与职工满意之间的联系,探索我国公司法共同决策制度的引入模式.     

British Abortion Law: Speaking from the Past to Govern the Future

This paper analyses the poor alignment of the aging statutory framework and modern understandings of medical best practice in the context of abortion services. With a particular focus on medical abortion, it assesses the significant challenges that the gulf between the two poses for clinicians, service providers, regulators and the courts. Law is said to be at its most effective where there is a shared regulatory community that accepts and endorses the values that underpin it. It is suggested that the example of abortion law provides a marked example of what happens when legal norms once justified by broadly shared moral understandings, concerns for patient safety and requirements of best practice are now either unsupported by or, indeed, sit in opposition to such concerns.     

Reviewable Automated Decision-Making

In this paper we introduce the concept of ‘reviewability' as an alternative approach to improving the accountability of automated decision-making that involves machine learning systems. In doing so, we draw on an understanding of automated decision-making as a socio-technical process, involving both human (organisational) and technical components, beginning before a decision is made and extending beyond the decision itself. Although explanations for automated decisions may be useful in some contexts, they focus more narrowly on the model and therefore do not provide the information about that process as a whole that is necessary for many aspects of accountability, regulatory oversight, and assessments for legal compliance. Drawing on previous work on the application of administrative law and judicial review mechanisms to automated decision-making in the public sector, we argue that breaking down the automated decision-making process into its technical and organisational components allows us to consider how appropriate record-keeping and logging mechanisms implemented at each stage of that process would allow for the process as a whole to be reviewed. Although significant research is needed to explore how it can be implemented, we argue that a reviewability framework potentially offers for a more useful and more holistic form of accountability for automated decision-making than approaches focused more narrowly on explanations.     

Decisional Capacity and Personality Disorders: Substantially Unable or Substantially Unwilling?

Capacity assessments are performed when there is suspicion that a person is unable to adequately care for their physical, medical, or financial well-being. The purpose of these assessments is to inform the legal system as to whether or not guardianship may be necessary. It is well established that certain mental illnesses, such as neurocognitive disorders (dementia) or psychotic disorders (like schizophrenia), may diminish capacity and, in some cases, lead to the need for establishment of a legal guardian. However, personality disorders are another common category of mental illness which may impair decision-making. There is very little information in the literature about how or why these disorders could impair capacity, and thus, it can often be difficult to discern whether clients with personality disorders are substantially unable to care for themselves—versus unwilling to act in a way contrary to their ingrained habits. We present a series of three cases in which clients are determined to lack capacity primarily mediated by a personality disorder diagnosis. They are demonstrated to have mild deficits in cognitive functioning, but they show impaired decision-making out of proportion to these deficits. In all three cases, it is apparent that the personality disorder is substantially impairing their ability to care for themselves. Discussion includes consideration for ways to incorporate evaluations of cognitive function, activities of daily living, and personality considerations into capacity assessments, and how to approach recommendations (such as guardianship vs. less restrictive option) based on both level and scope of impairment.     

病人家属参与医疗决定之法律研究

在我国目前的收入结构与医疗体制之下,对于大多数人而言,一旦面对大的病患风险,家属往往是其医疗成本以及医疗后果的直接承担者。当医疗决定牵涉到家庭成员的重大利益时,患者自主权应该受到家属决定权的制约。病人并非如病患自主理论所预设的前提一样是一个自由且理性的选择者,而是一个组织社群所有关系的总和,因此个人自决并不应该豁免其社群义务,尤其是对于家庭之义务。即使是成年具有意思能力病人其家属亦应具有相应的权利。     

Speed of Decision-Making as a Procedural Justice Principle

The uncertainty management theory (Lind and Van den Bos, Research in organizational behavior 24, 181–223, 2002; Van den Bos and Lind, Advances in experimental social psychology, pp. 1–60, 2002) proposes that perceived fairness decreases experienced uncertainty, and, thus, the importance of fairness is enhanced under higher uncertainty. For example, the six procedural justice principles (Leventhal, Social exchange: advances in theory and research pp. 27–55, 1980) can be seen to reduce uncertainty in the long run by producing higher quality decisions. However, the decision-making process itself also may cause uncertainty, especially when the process is prolonged. Thus, we bring the speed of the decision-making process into discussion as one justice principle. We suggest that people use speed-related information as heuristic information and substitute lacking procedures-related information by drawing inferences from the speed of the decision-making. We propose that the speed of decision-making has a twofold effect on perception of procedural fairness: very fast and very slow decision-making processes are perceived to produce more uncertainty than moderate time processes, and consequently, a moderate process is expected to be related with more positive fairness perceptions than very slow or very fast processes. The statement was further tested by examining the mediating role of procedural fairness perceptions in the relationship between speed and its one consequence, perceived legitimacy, with a survey sample (N = 846) in the context of Finnish forest policy. The analysis confirmed the hypotheses. The role of speed as a justice rule and its contribution to the uncertainty management theory is discussed.     

Medical research on minors in Finland

This article concerns the legal regulation of medical research on children in Finland. The topic is covered by the Medical Research Act of 1999 and by the Recommendations issued by the Working group on medical research on children in 2003. The Decisions of the Parliamentary Ombudsman also play an important role in this area in Finland. The article focuses on two specific issues: involvement of guardians in decision-making for the child, and the expansion of the right to self-determination of minors. Two case examples on these topics are also discussed. Overall, the author comes to the conclusion that the Finnish legislation, policy-makers, investigators and the industry have succeeded well in taking into account international legislation in this area, although there is also room for improvement.     

Some implications of the Human Rights Act 1998 for the medical treatment of children

Although the Gillick decision was hailed as an important step in the furtherance of respect for children's autonomy, subsequent judgments seemed to undermine this important principle. While it would be difficult to criticise the outcomes of some of the key cases, the reasoning by which these were achieved is rather more contentious. There have been some interesting discussions suggesting more constructive approaches but there is still a great deal of anecdotal evidence indicating that conservative assessments of children's ability to be involved in decisions about their medical treatment remain the norm. The new Department of Health consent forms should help to create a climate where assessment of a child's competence will become more sophisticated. This paper will argue that the Human Rights Act 1998 offers another opportunity to reassess more traditional approaches to children's capacity; indeed, this could be violation, inter alia, of the right not to be subject to inhuman and degrading treatment under Article 3 in extreme circumstances and the right to private and family life enshrined in Article 8. Clearly, it is not always practicable to carry out assessments rigorously and some health professionals may feel they do not have the expertise to do this, but some basic criteria could assist here; courts are not likely to expect more than a demonstration that best endeavors have been employed in reasoned decision-making. Additionally, other privacy rights may have implications for the medical decision-making process as it affects children and their carers particularly where conflict arises. Disputes may also ensue from the right to manifest religion and other beliefs",' under the Act. This paper will explore how such challenges to those responsible for the medical treatment of children may fare.