The patient who refuses medical treatment: a dilemma for hospitals and physicians

This article reviews recent case and statutory law concerning patients who refuse medical treatment. Among the special cases considered are: the competent adult patient who refuses treatment on religious or privacy grounds; the incompetent patient whose own wishes were never expressed, but whose family refuses treatment; the incompetent patient who expressed the wish not to be treated before becoming incompetent; and parents who refuse treatment on behalf of their child. It is pointed out that recent court decisions have blurred the distinctions between "extraordinary" care and "ordinary" care and between withholding and withdrawing life-sustaining treatment. Reference is made to the recent trend toward allowing the family of an incompetent patient to assert the patient's rights without court intervention either in the form of direct court order or through guardianship proceedings. Finally, the implications of these legal developments for health care institutions are discussed. A protocol pertaining to incompetent patients is proposed. Health care institutions are encouraged to develop formal policies for dealing with patients who refuse treatment, and to work with their professional associations in lobbying for legislation which will clarify the law in this area.     

The relation between autonomy-based rights and profoundly mentally disabled persons

A chapter from his forthcoming book "Deciding for the Profoundly Mentally Disabled," Professor Norman Cantor argues persuasively for the right of incompetent persons to have a surrogate make critical medical decisions on their behalf, particularly in the context of refusing life-sustaining treatment. While abusive surrogate decision-making is always a concern, Professor Cantor recommends both substantive and procedural protections in order to preserve intrinsic human dignity for the profoundly disabled.     

Minors' rights to consent to treatment: navigating the complexity of State laws

State laws recognize that a competent adult patient has the right to consent to or refuse medical treatment. While the law is clear with regard to the right of competent adults, state statutes are more complicated when the patient is a minor. While the law should, and does, attempt to balance the rights and obligations of parents and guardians against the access and privacy rights of minors, complicated state statutory schemes often fail to simultaneously address those contrasting goals in a consistent and uniform manner. The result is a confusing set of seemingly arbitrary and sometimes conflicting provisions that require the detailed attention of healthcare providers to ensure legal compliance. With the aim of helping healthcare practitioners meet their legal obligations, this Article examines state laws governing minor's consent rights byfocusing on the instances in which a minor's parent, guardian, or other authorized adult is permitted to consent to treatment on behalf of a minor and the instances in which a minor is authorized to act independent of adult intervention.     

Surrogate decision-making for incompetent elderly patients: the role of informal representatives

Informal or unofficial representation refers to the practice (more common in some European jurisdictions than in others), that persons not designed by a court or by the patient himself, make medical decisions on the patient's behalf in case of their incompetence. If the law provides for this, it is usually next of kin (spouse, children, brothers and sisters, etc.) who are allowed to act in such a capacity. Informal representation raises several questions. Are family members always familiar with what their relative would have wished, ready to take responsibility, and not too much reigned by their emotions? The basic legal concern is whether there are sufficient procedural and other safeguards to protect the incompetent patient from representatives who do not serve their best interests. In addressing these issues, after a brief survey of the law in the Netherlands as compared with that in Belgium, Germany and England/Wales, we will argue that informal representation as such is not at variance with international and European standards. However, an 'informal' approach to surrogate decision-making should always go together with sufficient protection of the incompetent patient, including procedural safeguards with regard to the decision that the patient is incompetent, limits to the decision-making power of informal representatives and effective forms of conflict resolution.     

Judicial postponement of death recognition: the tragic case of Mary O'Connor

A recent New York Court of Appeals decision seriously impedes the ability of incompetent patients to control their medical care. In the case of Mary O'Connor, the court virtually eliminated an incompetent's rights to bodily integrity and privacy. The court relied on formalistic evidentiary arguments to vitiate the patient's refusal of death-prolonging treatment. This Case Comment examines both the doctrine and policy underlying the O'Connor decision, suggesting that the court erred in its holding and reasoning. An alternative framework is presented, arguing that courts should honor competently expressed patient decisions concerning medical treatment. New York's highest court, instead, posited an incompetent patient who becomes competent for a moment to render a decision. This legal fiction is nothing more than a thinly masked technique for imposition of the judges' values on the patient. This Case Comment argues that in the absence of clear direction from the patient, family and loved ones generally should make care decisions for the patient.     

The right to refuse treatment: An application of the economic principles of decision-making under uncertainty

When courts do not defer to professional judgment, alternative ways must be used to make treatment decisions for persons who are deemed incompetent. Rather than impose the preferences of society on the mentally ill individual, courts have favored alternative procedures. The two most common approaches are substituted judgment and best interests. In using both the substituted judgment standard and the best interest standard the guardian of a patient who is judged incompetent to make a treatment decision tries to make the decision the patient would have made, had he been competent. The guardian must consider the individual's attitude toward risk in making this assessment. Substituted judgment can be used when clear and convincing evidence of the patient's preferences exists. The evidence would come from a study of the patient's expressed attitudes towards medical treatment and behavior before he or she became incompetent. This approach is effective only if the patient has revealed his or her preferences toward relevant medical treatment in the past. The best interest standard is used when no clear and convincing evidence of the patient's treatment preferences exists. The treatment decisions of competent patients whose characteristics are similar to the incompetent patient's, and who have faced a similar situation, can be used as a proxy for the decision the incompetent patient would have made. Using the choice function of similar people may make it possible to develop a reasonably objective basis for determining what course of action is in the patient's best interest.     

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。     

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。     

Litigating life and death.

In cases involving the "right to die," courts are faced with the agonizing task of developing legal standards governing termination of an incompetent patient's medical treatment. In this Article, Professor Rhoden criticizes the two dominant approaches courts have developed--the "subjective" and "objective" tests--and proposes that these standards be abandoned for a legal presumption in favor of family decisionmaking. She maintains that the "subjective" test, which requires the family to provide clear proof that termination of treatment is what the incompetent would have chosen, is often unworkable because a patient's character traits, and even her prior statements about medical treatment, seldom rise to the evidentiary level that courts purport to require. Similarly, she argues that the "objective" test, which requires the family to prove that the burdens of the patient's life, measured in terms of pain and suffering, clearly and markedly outweight its benefits, dehumanizes patients by suggesting that only their present, physical sensations count. Professor Rhoden suggests that the subjective and objective tests are not nearly as distinct as courts have made them. She argues that the rigidity of these legal standards reflects courts' acceptance of the medical profession's presumption in favor of continued treatment, a presumption that places a heavy burden on families seeking to terminate treatment. Drawing on the special qualifications of families as decisionmakers in such cases, Professor Rhoden proposes that courts recognize a presumptive right of families to exercise discretion over treatment decisions. Such a standard would recognize that, although doctors and others can readily prove that terminating the treatment of a patient who can still enjoy life is wrong, it is very hard for families to meet the current standards, which essentially require them to prove that termination is right.     

The Schiavo and Korp cases: conceptualising end-of-life decision-making

An incompetent, terminally ill patient can be viewed in two ways--as a person who is dying, when futile, life-prolonging treatment can be lawfully withdrawn; or a person with a disability, for whom a guardian must be appointed to decide about treatment. Terri Schiavo's husband took the first view and her parents the second. Maria Korp was regarded as dying when treatment was withdrawn. The difference in conceptualising a patient's situation is critical. Where a patient is dying, treatment can be lawfully withdrawn whatever the view of the relatives; they cannot require treatment to be continued. Where a patient has a disability and a surrogate decision-maker is appointed, the focus is on what the patient would have wanted in such circumstances, so that the surrogate can act in accordance with the patient's wishes. That deflects attention from the fundamental legal principle that whatever a patient or the relatives want, they are not legally entitled to demand treatment that doctors consider futile in the circumstances.     

Freedom and choice in constitutional law

The constitutional rights of children, the mentally ill, and other legally incompetent persons have been the subject of much litigation in the past twenty years. In this Article, Professor Garvey develops a general theory to explain the different ways in which persons of diminished capacity can be said to enjoy constitutional protections. He first notes that, of the various constitutional provisions, only one kind - freedom, which protect the right to make choices - pose serious difficulties when applied to persons of diminished capacity. He then proposes a hierarchy of ways in which we can attribute freedoms to such persons: the laissez-faire notion that all persons (including incompetents) are to be treated identically, the instrumental idea that granting freedoms to incompetents achieves extrinsic goals such as training, and the surrogate notion that persons who cannot make choices for themselves should be able to have those closest to them choose on their behalf. Professor Garvey concludes that, when these options fail and the state takes an incompetent person under its control, the state owes to the incompetent the full package of duties owed by other guardians to those under their control, including treatment in the case of the mentally ill or education in the case of children.     

Withdrawal of artificial nutrition in the persistent vegetative state: a continuous controversy

The withdrawal of life support from patients in persistent vegetative state (PVS) is a controversial issue, as highlighted by a continuous public debate and recent judicial decisions. In Germany, a topic of particular interest is the abatement of artificial nutrition. First, doubts have come up whether every kind of technically delivered nutrition should be rated identically or whether a distinction between feeding tubes/gastrotomies and intravenous administration should be made. Second, the question is left open whether artificial nutrition is part of basic care and as a consequence may never be discontinued, or if it has to be regarded as life-sustaining treatment which can be refused by surrogates on behalf of the nonautonomous patient. Most recently, controversial judicial decisions have dealt with the question if substituted judgement concerning abatement of artificial nutrition by surrogates or legal guardians is permitted or if the approval of a court is necessary. Forensic evidence is provided which indicates that the withdrawal of artificial nutrition in patients in the persistent vegetative state may become a contributing causative factor or even the immediate cause of death. The legal implications with regard to the above-mentioned issues of controversy are discussed.     

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.     

Reconciling Quinlan and Saikewicz: decision making for the terminally ill incompetent

One of the most perplexing problems in the medicolegal field concerns the criteria on which decisions not to treat terminally ill incompetent patients should be made. These decisions traditionally have been made by physicians in hospitals--sometimes with the assistance of the patient's family--on the basis of their perceptions of the patient's "best interests." Recently, two state supreme courts have ruled on this question. The New Jersey Supreme Court, in the Quinlan case, developed a medical prognosis criterion, and permitted the patient's guardian, family, and physicians to apply it with the concurrence of a hospital "ethics committee." The Massachusetts Supreme Judicial Court, in the Saikewicz case, adopted, on different facts, the test of "substituted judgment" to be applied by a probate court after an adjudicatory hearing. The two cases have been interpreted by many in the medical profession as representing conflicting viewpoints--one supportive of traditional medical decision making and the other distrustful of it. It is the thesis of this Article that Quinlan and Saikewicz are in fundamental agreement and can be reconciled by the next state supreme court that rules on this question. Both courts enunciate a constitutional right to refuse life-sustaining treatment, based on the right to privacy. They agree that incompetents should be afforded the opportunity to exercise this right, and that certain state interests can overcome it. They agree also that physicians should be permitted to make medical judgments, and that societal judgments belong in the courts. The differences in how the opinions are perceived result from the interplay of several factors: the differences in the facts of the cases; the inarticulate use of the term "ethics committee" by the Quinlan court; the literal interpretation of the role of such a committee by the Saikewicz court; a desire for 100 percent immunity on the part of physicians and hospital administrators in Massachusetts; and advice from their counsel on how such immunity can be guaranteed. It is the author's hope that this Article will help to dispel much of the misinformation surrounding these two cases, and to refocus the debate on how decisions should be made for the terminally ill incompetent patient on the real issues regarding criteria and the decision-making process that remain to be resolved.     

Roman concept of mental capacity to make end-of-life decisions

When assessing decisional competence of patients, psychiatrists have to balance the patients' right to personal autonomy, their condition and wishes against principles of medical ethics and professional discretion. This article explores the age-old legal and ethical dilemmas posed by refusal of vital medical treatment by patients and their mental capacity to make end-of-life decisions against the background of philosophical, legal and medical approaches to these issues in the time of the Younger Pliny (c62-c113 CE). Classical Roman discourse regarding mental competency and "voluntary death" formed an important theme of the vast corpus of Greco-Roman writings, which was moulded not only by legal permissibility of suicide but also by philosophical (in modern terms, moral or ethical) considerations. Indeed, the legal and ethical issues of evaluating the acceptability of end of life decisions discussed in the Letters are as pertinent today as they were 2000 years ago. We may gain valuable insights about our own methodologies and frames of reference in this area of the law and psychiatry by examining Classical Roman approaches to evaluating acceptability of death-choices as described in Pliny's Letters and the writings of some of his peers.     

The MacArthur Treatment Competence Study. III

Three instruments assessing abilities related to legal standards for competence to consent to treatment were administered to 6 groups: patients recently hospitalized for schizophrenia, major depression, and ischemic heart disease, as well as three groups of non-ill persons in the community who were matched with the hospitalized patients on age, gender, race, and socioeconomic status. Significant impairments in decisional abilities were found for only a minority of persons in all groups. Both the schizophrenia and depression groups manifested poorer understanding of treatment disclosures, poorer reasoning in decision making regarding treatment, and a greater likelihood of failing to appreciate their illness or the potential benefits of treatment. Deficits were more pronounced, however, among patients with schizophrenia. Implications are discussed for policy designed to protect the rights and welfare of patients with mental illness who are at risk of incompetent refusal or consent when making treatment decisions.     

中国法律早期现代化的保守性价值评析

对如何评价中国晚清修律中保守性价值问题进行讨论。对晚清时期中国社会的法律价值重新评价,与西方国家法律现代化进行比较,考虑近代中国国家和民族的政治功利性,考虑民族心理,考虑当时的历史背景、学术水准以及东方国家现代化的共同规律,认为中国早期法律现代化中包含某些保守性价值是具有历史合理性的存在。     

Contested views of expertise in children’s care and permanence proceedings

In this article, we consider different perspectives on who is best able to provide relevant and helpful expertise in public law cases where the long-term care of children is under consideration. Opinions vary and sometimes conflict on the respective importance of legal, child development, and lay understandings. These opinions relate to views on rights, appropriate procedures, decision-making processes, and the effects of decisions on children. Firstly, we summarise literature relevant to the knowledge and skills of three key groups of decision-makers within the Scottish child care system: legal professionals, child care professionals and lay decision-makers, and outline literature about guardians ad litem and their counterparts. We then discuss issues of expertise emerging from a study exploring the reasons for, and impact of, the appointment of safeguarders (who, in Scotland, perform a similar role to guardians). We conclude that there may be an increasing tendency for disagreement and a lack of clarity about who brings the most relevant and helpful expertise to hearings; this may have negative effects for children.     

Substituted consent: from lunatics to corpses

This analysis traces the origins and evolution of the doctrine of surrogate or substituted judgment, especially its application to medical treatment, including non-therapeutic sterilisation, decisions regarding life and death choices, and more recently, removal of sperm or eggs from incompetent, dying or dead males and females. It argues that the doctrine, which has been acknowledged to be a legal fiction, has an effect of devolving legal and moral responsibility for life and death choices, as well as non-consensual, non-beneficial intrusive procedures, from the competent decision-makers to the incompetent patient. It focuses on the subjective nature of the substituted judgment standard; the problematic nature of evidence propounded to establish the putative choices of the incompetent person; lack of transparency relating to the conflict of interest in the process of substituted judgment decision-making; and the absence of voluntariness, which is an essential element of a valid consent.     

Young children as regenerative tissue donors: considering the need for legal reform in light of divergent ethical approaches

In Australia, young children who lack decision-making capacity can have regenerative tissue removed to treat another person suffering from a severe or life-threatening disease. While great good can potentially result from this as the recipient's life may be saved, ethical unease remains over the "use" of young children in this way. This article examines the ethical approaches that have featured in the debate over the acceptability and limits of this practice, and how these are reflected in Australia's legal regime governing removal of tissue from young children. This analysis demonstrates a troubling dichotomy within Australia's laws that requires decision-makers to adopt inconsistent ethical approaches depending on where a donor child is situated. It is argued that this inconsistency in approach warrants legal reform of this ethically sensitive issue.