Revisiting the best interest standard: uses and misuses

The best interest standard is the threshold most frequently employed by physicians and ethics consultants in challenging a parent's refusal to provide consent for a child's medical care. In this article, I will argue that the best interest standard has evolved to serve two different functions, and that these functions differ sufficiently that they require separate standards. While the best interest standard is appropriate for choosing among alternative treatment options for children, making recommendations to parents, and making decisions on behalf of a child when the legal decision makers are either unable to make a decision or are in dispute, a different standard is required for deciding when to seek state interference with parental decision-making authority. I will suggest that the harm principle provides a more appropriate threshold for determining when to seek state intervention than the best interest standard.     

Should we presume moral turpitude in our children? – Small children and consent to medical research

When children are too young to make their ownautonomous decisions, decisions have to be madefor them. In certain contexts we allow parentsand others to make these decisions, and do notinterfere unless the decision clearly violatesthe best interest of the child. In othercontexts we put a priori limits on whatkind of decisions parents can make, and/or whatkinds of considerations they have to take intoaccount. Consent to medical research currentlyfalls into the second group mentioned here. Wewant to consider and ultimately reject one ofthe arguments put forward for putting medicalresearch into the second category. We willargue that some objections to children'sparticipation in research are either based onan implausibly restrictive conception of whatis in fact in the child's best interests orthat there is an implicit and false premisehidden in this argument; i.e., the premise thatour children have so deeply fallen into moralturpitude that we must assume that they wouldnot want to fulfill their moral obligations,or, that they will grow up to be morallydeficient and will then wish not to have actedwell while a child.     

On medicine, culture, and children's basic interests: a reply to three critics

Margaret Mohrmann, Paul Lauritzen, and Sumner Twiss raise questions about my account of basic interests, liberal theory, and the challenges of multiculturalism as developed in Children, Ethics, and Modern Medicine. Their questions point to foundational issues regarding the justification and limitation of parental authority to make decisions on behalf of children in medical and other contexts. One of the central questions in that regard is whether adults' decisions deserve to be respected, especially when they seem contrary to a child's or adolescent's basic interests. Questions about respect, in turn, focus attention on other's decisions about what seems good for families and children, decisions that may be paternalistic or utilitarian. Such decisions are further complicated by a child's or adolescent's budding autonomy and need for respect and recognition. Pediatric bioethics grounded in an account of a child's basic interests produces a theory of negative and positive rights for assessing adults' actions in relation to children, especially (but not only) when adults demand respect in their expressions of care.     

Interpreting Surrogate Consent using Counterfactuals

Philosophers such as Dan Brock believe that surrogates who make health care decisions on behalf of previously competent patients, in the absence of an advance directive, should make these decisions based upon a substituted judgment principle. Brock favours substituted judgment over a best interests standard. However, Edward Wierenga claims that the substituted judgment principle ought to be abandoned in favour of a best interests standard, because of an inherent problem with the substituted judgment principle. Wierenga's version of the substituted judgment principle and his counterexample to the principle's successful interpretation of valid surrogate consent is presented. A new version of what is meant by the substituted judgment principle is advanced. The new version is not beset with the problems Wierenga initially ascribed to the substituted judgment principle.     

The best interest standard: both guide and limit to medical decision making on behalf of incapacitated patients

In this issue of JCE, Douglas Diekema argues that the best interest standard (BIS) has been misemployed to serve two materially different functions. On the one hand, clinicians and parents use the BIS to recommend and to make treatment decisions on behalf of children. On the other hand, clinicians and state authorities use the BIS to determine when the government should interfere with parental decision-making authority. Diekema concedes that the BIS is appropriately used to "guide" parents in making medical treatment decisions for their children. But he argues that the BIS is inappropriately used as a "limiting" standard to determine when to override those decisions. Specifically, Diekema contends that the BIS "does not represent the best means for determining when one must turn to the state to limit parental action." He argues that this limiting function should be served by the harm principle instead of by the BIS. I contend that we should not reassign the BIS's limiting function to the harm principle. In this article I make two arguments to support my position. First, the BIS has effectively served, and can serve, both guiding and limiting functions. Second, the harm principle would be an inadequate substitute. It cannot serve the limiting function as well as the more robust BIS.     

On the Limits of Parental Proxy Consent: Children's Right to Non-Participation in Non-Therapeutic Research

This paper considers what are the appropriate limits of parental or guardian proxy consent for a child's participation in medical or social science research. Such proxy consent, it is proposed, is invalid in regards “non-therapeutic research.” The latter research may add to scientific knowledge and/or benefit others, but any benefit to the child research participant is but a coincidental theoretical possibility and not a primary objective. Research involving children, without intended and acceptable prospect of beneficial outcome to the individual participant, even if with negligible risk, does not meet the test for “best interests.” Proxy consent for children's involvement in research is justifiable only when given for and on behalf of the child in his or her best interest to enhance the child's well-being. Only in the latter case is the parental proxy consent situation analogous in regards key criteria to a competent individual consenting to research participation. This revised version was published online in August 2006 with corrections to the Cover Date.     

Antenatal Genetic Testing and the Right to Remain in Ignorance

As knowledge increases about the human genome,prenatal genetic testing will become cheaper,safer and more comprehensive. It is likelythat there will be a great deal of support formaking prenatal testing for a wide range ofgenetic disorders a routine part of antenatalcare. Such routine testing is necessarilycoercive in nature and does not involve thesame standard of consent as is required inother health care settings. This paper askswhether this level of coercion is ethicallyjustifiable in this case, or whether pregnantwomen have a right to remain in ignorance ofthe genetic make-up of the fetus they arecarrying. While information gained by genetictesting may be useful for pregnant women whenmaking decisions about their pregnancy, it doesnot prevent harm to future children. It isargued that as this kind of testing providesinformation in the interests of the pregnantwomen and not in the interests of any futurechild, the same standards of consent that arenormally required for genetic testing should berequired in this instance.     

Whose harm? Which metaphysic?

Douglas Diekema has argued that it is not the best interest standard, but the harm principle that serves as the moral basis for ethicists, clinicians, and the courts to trigger state intervention to limit parental authority in the clinic. Diekema claims the harm principle is especially effective in justifying state intervention in cases of religiously motivated medical neglect in pediatrics involving Jehovah’s Witnesses and Christian Scientists. I argue that Diekema has not articulated a harm principle that is capable of justifying state intervention in these cases. Where disagreements over appropriate care are tethered to metaphysical disagreements (as they are for Jehovah’s Witnesses and Christian Scientists), it is moral-metaphysical standards, rather than merely moral standards, that are needed to provide substantive guidance. I provide a discussion of Diekema’s harm principle to the broader end of highlighting an inconsistency between the theory and practice of secular bioethics when overriding religiously based medical decisions. In a secular state, ethicists, clinicians, and the courts are purportedly neutral with respect to moral-metaphysical positions, especially regarding those claims considered to be religious. However, the practice of overriding religiously based parental requests requires doffing the mantle of neutrality. In the search for a meaningful standard by which to override religiously based parental requests in pediatrics, bioethicists cannot avoid some minimal metaphysical commitments. To resolve this inconsistency, bioethicists must either begin permitting religiously based requests, even at the cost of children’s lives, or admit that at least some moral-metaphysical disputes can be rationally adjudicated.

     

Deciding in the best interest of clients with dementia: the experience of public guardians

We conducted an in-depth interview study of public guardians in three local jurisdictions in the state of Maryland to explore the decision-making process utilized by court-appointed public guardians making medical and EOL care decisions on behalf of their clients with dementia. Overall, public guardians appeared to make their decisions in the context of relevant ethical principles and relevant case law and state statute, and the basis upon which they made informed decisions was dependent on their training and experience. The stated goal of public guardians is to make decisions that they believe are in the best interest of their clients. In the case of a healthcare decision, their goal is to maximize quality of life; and in the case of an EOL care decision, their goal is to minimize pain and suffering. In general, public guardians gathered information in order to identify previous preferences of their now-incapacitated clients, so that they could develop a preference profile to assist both an initial decision on whether an individual ought to have a court-appointed public guardian, and with healthcare and EOL decisions once an appointment was made. When guardians were unable to develop a preference profile for a particular client, they relied on past decisions in similar situations. Healthcare and EOL decisions were most often triggered by a recommendation by the client's healthcare provider. Once a decision-point was identified, the public guardian considered the risks and benefits of the proposed intervention in light of the client's current condition. At times the guardians reviewed informational resources such as textbooks and the Internet. In addition, most guardians sought advice from a medical consultant who is available to all public guardians in Maryland. Some guardians sought the advice of this medical consultant only when faced with more complex decisions. Guardians challenged physicians' recommendations when they believed the physicians were recommending an intervention that was not in the best interest of the client--that is, they advocated against either overtreatment or undertreatment. Ultimately, guardians took particularly difficult issues to the court and obtained a judge's opinion.     

Involuntary sterilization of persons with mental retardation: an ethical analysis

Legitimate concerns on the part of parents and guardians may lead to requests for sterilization of a mentally retarded person in their care. At the same time, mentally retarded persons must be protected from actions that do not serve their best interests. This paper will review the history of involuntary sterilization in the United States and evaluate the ethical arguments that are relevant to decisions about involuntary sterilization. While other, less permanent forms of contraception might be acceptable, involuntary sterilization ought not be performed on mentally retarded persons who retain the capacity for reproductive decision-making, the ability to raise a child, or the capacity to provide valid consent to marriage. Mentally retarded persons who lack capacity in those three areas should be considered for involuntary sterilization only when the procedure is necessary, sterilization would serve the best interests of the mentally retarded person, less intrusive and temporary methods of contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision-making process.     

Respect for the developmentally disabled and forgoing life-sustaining treatment

A developmentally disabled person should be treated at all times as a unique individual and not as some anonymous "disabled person." The developmentally disabled should not be subjected to invasive medical treatment that is unduly burdensome or nonbeneficial, or be forced to endure a quality of life not meaningful to them as individuals. They have a right to refuse or accept treatment that a surrogate must exercise on behalf of each individual in a responsible and careful manner. Three cases and a preliminary approach to the ethical analysis of decisions to allow developmentally disabled persons to die by forgoing medical treatment are offered. The "best interests" of a developmentally disabled individual, properly understood, can serve as a useful and ethically defensible standard for determining the ethical propriety of surrogate decision making about forgoing life-sustaining medical treatment of the disabled.     

酒依赖与酒文化

在医疗过程中,无法取得患者的同意时,通常由他人代其做出同意。但是,代为同意人在代为做出同意时,必须以患者本人的最佳利益为原则。在判断患者的最佳利益时,可以借鉴英国《心智能力法2005》的规定,通过对诸因素的评估,来综合决定何谓患者的最佳利益。我国在制订和修改代为同意的相关规定时,应该考虑如何借鉴英国的规定,制订符合我国国情的代为同意制度。     

Ethical Dimension of Paediatric Cochlear Implantation

In congenitally or prelingually deaf childrencochlear implantation is open to seriousethical challenge. The ethical dimension ofthis technology is closely related to both asocial standard of quality of life and to theuncertainty of the overall results of cochlearimplantation. Uncertainty with regards theacquisition of oral communicative skills.However, in the western world, available datasuggest that deafness is associated with thelowest educational level and the lowest familyincome. Notwithstanding the existence of aDeaf-World, deafness should be considered as ahandicap. Therefore, society should provide themeans for the fulfilment of a deaf child'sspecific needs.For the time being there is no definitiveanswer with regard the best way to rehabilitatea particular deaf child. Therefore,communitarian values may be acceptable. If thedeaf child parents' decide not to implant,their decision should be respected. Guardiansare entitled to determine which standard ofbest interest to use in a specificcircumstance. They are the proper judges ofwhat (re)habilitation process is best for theirdeaf child. However, most deaf children areborn to two hearing parents. Probably, theywill not be acculturated in the Deaf-World. Itfollows that cochlear implantation is awelcomed (re)habilitation technology.If auditory (re)habilitation will in the futureprovide the necessary communicative skills, inparticular oral language acquisition, customs,values and attitudes of the hearing worldshould be regarded as necessary to accomplish adeaf child's right to an open future. Ifcochlear implantation technology will provideall deaf children with the capacity to developacceptable oral communicative skills –whatever the hearing status of the family andthe cultural environment – then auditory(re)habilitation will be an ethical imperative.     

Surrogate medical decision making on behalf of a never-competent, profoundly intellectually disabled patient who is acutely ill

With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making authority on their behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients.     

Ethics in health care and medical technologies

In this paper a case is used to demonstrate how ethical analysis enables health care professionals, patients and family members to make treatment decisions which ensure that medical technologies are used in the overall best interests of the patient. The claim is made and defended that ethical analysis can secure four beneficial outcomes when medical technologies are employed: (1) not allowing any medical technologies to be employed until the appropriate decision makers are identified and consulted; (2) insisting that medical technologies be employed not merely to promote the medical interests of the patient but rather on the basis of their ability to contribute to the overall well-being of the patient; (3) challenging caregivers to reflect on the dynamic interplay between their conscious and unconscious values and consequent determinations of what is in the patient's best interests; and (4) providing a justification for selected interventions which makes possible rational dialogue between caregivers espousing different viewpoints about treatment options.     

Getting Obligations Right: Autonomy and Shared Decision Making

Shared Decision Making (‘SDM’) is one of the most significant developments in Western health care practices in recent years. Whereas traditional models of care operate on the basis of the physician as the primary medical decision maker, SDM requires patients to be supported to consider options in order to achieve informed preferences by mutually sharing the best available evidence. According to its proponents, SDM is the right way to interpret the clinician-patient relationship because it fulfils the ethical imperative of respecting patient autonomy. However, there is no consensus about how decisions in SDM contexts relate to the principle of respect for autonomy. In response, I demonstrate that in order to make decisions about what treatment they will or will not receive, patients will be required to meet different conditions depending on the approach proponents of SDM take to understanding personal autonomy. Due to the fact that different conceptions of autonomy yield different obligations, I argue that if physicians and patients satisfied all the conditions described in standard accounts of SDM, then SDM would undermine patient autonomy.     

Child custody in historical perspective: A study of changing social perceptions of divorce and child custody in Anglo-American law

The history of divorce law in England and America shows that child custody decisions have tended to be made on the basis of social biases about the nature of men and women, rather than on the basis of the competence of the individual parents or of the best interests of the children. This article traces the history of divorce law with particular attention to child custody from twelfth century England to modern America. The historical flipflop from paternal custody to maternal custody is documented, and the assumptions underlying the prejudices toward paternal and maternal custody are reviewed and compared. Joint custody, when possible, provides a solution to the custody problem. However, sexual stereotypes provide no substitute for meticulous fact-finding when parents cannot agree.     

论临床试验中的治疗性误解及对策

研究和临床治疗在根本目的、基本方法、风险的正当性,以及应遵循的伦理原则等多方面都存在着根本性的区别。在临床试验的理论与实践中,混淆治疗与研究两者的区别,就会造成治疗性误解,从而违背科研伦理的知情同意原则,损害受试者的利益。以研究和治疗的区分为出发点,对治疗性误解的原因、引起的主要伦理问题及对策加以讨论。     

Medical malpractice and the legal standard of care

In this essay, I examine the relationship between lawsuits for medical malpractice and the legal standard of care. I suggest that there is an insidious, dynamic relationship between physicians' reactions to the recent increase in malpractice litigation and an artificial elevation of the legal standard of care. Since, that is, the legal standard for proper medical care is based upon the community standard of care rather than the reasonable person standard, to the extent that overtreatment or “defensive” medicine becomes widespread as a reaction to malpractice litigation, the legal standard becomes elevated as well. Thus, it will increasingly be the case that unless a physician practices defensive medicine, and hence practices unreasonably, she risks being found liable for medical malpractice.