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Sep 13, 2022·Journal of Paediatrics and Child Health
1 cites
Respect for conscientious judgement in health care

Bernadette Tobin

Imagine that paediatricians are asked by the parents of a child with severe developmental disabilities to perform a hysterectomy and mastectomy on their daughter and give her hormones to restrict her growth. Imagine that, though the paediatricians sympathetically appreciate the motivation of the parents for this request – that restricting her growth will enable them to continue to care for her themselves, they think that they should not do these things to the child. Should we compel them to provide the procedures or accommodate their conscientious judgement? Or again. Imagine that a doctor is willing to undertake a first-trimester termination but is reluctant to terminate a pregnancy in the third trimester. Should we compel him to provide the procedure or accommodate his conscientious judgement? The general question to be considered is whether it is ever justifiable to compel performance by a doctor in violation of his or her conscience. Or, to put the question another way: What scope – if any at all – should be given to conscientious judgement in health care? Though there is now an enormous literature on the subject, most views sit on the range between, on the one hand, ‘there ought to be little or no scope for conscientious judgement in healthcare’ and, on the other, ‘there ought to be wide scope for conscientious judgement in healthcare’. Classic expressions of these two views were given some time ago by Julian Savulescu1 and Daniel Sulmasy,2 respectively. Though there are now other contributors to the discussion, and other points of view, a grasp of the early claims of these two doctor-philosophers will orient a newcomer to the shape of the debate. Savulescu argues that ‘[a] doctor's conscience has little place in the delivery of modern medical care. What should be provided to patients is defined by the law and consideration of the just distribution of finite medical resources, which requires a reasonable conception of the patient's good and the patient's informed desires. If people are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it conflicts with their values, they should not be doctors’.1 This view was further elaborated in a ‘consensus statement’ adopted by a group of philosophers and bioethicists (Savulescu among them) who met at the Brocher Institute in Geneva in 2016.3 According to them, ‘[h]ealthcare practitioners’ primary obligations are towards their patients, not towards their own personal conscience. When the patient's well-being (or best interests, or health) is at stake, healthcare practitioners' professional obligations should normally take priority over their personal moral or religious views’.3 When practitioners have a conscientious objection, they ought to refer their patients to another practitioner who is willing to perform the treatment, and in emergency situations perform the treatment themselves. When they have a conscientious objection to providing treatment, they should be required to explain themselves. The burden of proof of the reasonability and sincerity of the objection should be on the practitioner. Reasons offered could be assessed by tribunals who could test their reasonability and sincerity. Hiring authorities should generally be allowed to make hiring decisions on the basis of whether the possible employees are willing to perform procedures to which others have a conscientious objection. Practitioners who are exempted from performing procedures on conscientious grounds should be required to compensate society for their failure to fulfil their professional obligations. Medical students should not be exempted from learning how to perform basic procedures they consider to be morally wrong. Practitioners should be educated to identify the basis of their objections and to reflect on the influence of cognitive bias in their objections. Savulescu gives four reasons for the view that there should be little scope for conscientious judgement in health care. Respect for conscientious refusal is inefficient because it causes patients to waste time, energy and money; it is inequitable because some patients, less informed of their entitlements, will fail to receive a service which they should have received; it is inconsistent with other practices in health care where doctors are not permitted to act on their own views; and it is unprofessional because ‘
 to be a doctor is to be willing and able to offer appropriate medical treatments that are legal, beneficial, desired by the patient, and part of a just health care system’.1 Savulescu's practical recommendation is straightforward. If people are not prepared to offer legally permitted, efficient, and beneficial care to a patient because it conflicts with their values, they should not be doctors.1 Sulmasy defends a very different view. He argues that ‘
 one should not readily empower the state to compel its physicians to alienate themselves from their deepest moral convictions’.2 Rather, we should exhaust every available alternative before requiring a doctor to act against his or her deeply held, self-identifying moral beliefs. Without claiming that conscientious objections can never be trumped by other considerations, he recommends that we set a very high bar before compelling performance in violation of conscience.2 Sulmasy's view is grounded in his account of the nature, and (from which account it follows) the primacy, of conscience itself. Conscience, he says, is the disposition to act in accordance with a commitment to uphold one's deepest, self-identifying moral beliefs. It is an expression of moral agency. Of course, a person's conscience can err, so acknowledging its primacy does not imply a belief in its infallibility. We can expect general agreement about some moral items of moral knowledge because they are so obviously true (e.g. ‘it is wrong to inflict unnecessary pain’). But given the imperfect nature of our moral knowledge and reasoning, moral disagreements between us are inevitable. Thus, because we are all moral agents, we owe each other mutual respect, both in the practice of health care and in the rest of life. How, then, does Sulmasy think we should go about determining whether it is legitimate for a state, a profession or an institution to compel performance by a doctor against his or her conscientious judgement? Sulmasy suggests that we decide the matter, in particular circumstances, by asking three questions about the practice – that is, the action or the refraining from action – for which a doctor seeks tolerance. First, we should consider whether the doctor's practice undermines or contradicts the principle of tolerance itself. If it does, then the practice does not deserve tolerance. So, for example, if a doctor were to refuse to treat a Jehovah's Witness for pneumonia simply because the doctor is hostile to people of that religious persuasion, her refusal would hardly deserve tolerance. But if she refused to operate on a patient because the patient would not allow blood transfusions, her refusal would deserve our tolerance. Second, we should consider whether the doctor's practice entails a substantial risk of serious illness, injury, or death for those who do not share the belief that is said to justify the practice. A serious risk of injury or death to a patient would constitute grounds for compelling the doctor's performance. But (and here's the nub of the current controversy) inconvenience, psychological distress or mild symptoms on the part of a person seeking a service would not constitute grounds for compelling the doctor's performance. For ‘mutual respect for conscience demands that we ought to be willing to be inconvenienced, if necessary, for each other's sake.’2 Third, we should consider whether the practice for which the doctor seeks tolerance is an action or a refraining from action. Greater moral justification should be needed to compel a doctor to perform an action than is, in general, required to compel a doctor to refrain from an action. No one would object if an institution compelled a doctor to refrain from proselytising her patients. But a much stronger ethical justification should be needed if an institution wanted to compel a doctor to perform a procedure to which she had a conscientious objection. It is clear that there is some common ground between the two positions, in particular that an emergency which threatens a serious risk of injury or death to a patient would constitute grounds for compelling a doctor's performance. It is also clear that there are profound differences between the two positions, differences explained or at least reinforced by differing views about (on the one hand) the nature and goals of medical practice and (on the other) about the nature and modus operandi of conscience itself. Savulescu's view treats conscience as a mere personal preference. Sulmasy's view treats conscience as a self-identifying commitment to personal integrity. Since doctors are increasingly being asked to intervene in situations which have little or nothing to do with treating disease, the profession, and indeed the wider society, needs to work out a principled way of resolving disputes about the proper scope of, and proper limits to, respect for conscientious judgement in health care. My hunch is that we will not be able to do this unless we clarify three things. First, the exercise of conscience is not to be understood as an expression of a mere personal preference (like a taste in food or wine): rather it is a serious self-identifying moral commitment, a matter of personal integrity. Second, the role of doctor is not to provide whatever the patient (or consumer) wants: rather it is to (offer to) treat injury or disease. Third, in a well-ordered society, the state's authority over doctors does not extend to compelling them to violate their consciences: on this particular matter, it is to preserve that kind of individual liberty which is at the heart of everyone's flourishing. Open access publishing facilitated by Australian Catholic University, as part of the Wiley - Australian Catholic University agreement via the Council of Australian University Librarians.

Open access
Ethics and Legal Issues in Pediatric Healthcare
Ethics in medical practice
Patient Dignity and Privacy
Original source
Jun 24, 2021·Medical Law Review
9 cites
Compulsory Childhood Vaccination: Human Rights, Solidarity, and Best Interests

David Archard, Joe Brierley, Emma Cave

In Vavƙička and Others v the Czech Republic,1 the Grand Chamber of the European Court of Human Rights (‘the Court’) considered for the first time whether compulsory childhood vaccination can be compatible with the European Convention on Human Rights (ECHR). The majority2 found the Czech Republic’s vaccination policy to be ‘fully consistent with the rationale of protecting the health of the population’3 and within the wide discretion (‘margin of appreciation’) given to Member States on health issues.4 The policy struck a fair balance between the protection of children against serious diseases and the protection of families from the consequences of refusal. Dissenting Judge Wojtyczek agreed that mandatory vaccination can be Convention-compliant but argued that the facts did not support such a conclusion in this case. He thought that the majority’s consideration of the public interest did not give adequate weight to the best interests of individual children, as opposed to the interests of children in general, or to the particular risks, costs, side effects and benefits5 of each vaccine as opposed to the ‘general consensus over the vital importance of this means of protecting populations against diseases’.6 Filed before the COVID-19 pandemic, the case will be of broad interest given the long-term political and legal debate around compulsory childhood vaccination. Whilst the UK is one of several European countries7 which maintain a voluntary vaccination programme, a growing number impose restrictions on voluntariness.8 Moreover, there is emerging evidence of a link between mandatory vaccination and a higher uptake of vaccinations and reduction in disease.9 We explore the reasoning in the judgment and its implications for children’s rights and in the debate around COVID-19 vaccination. In the Czech Republic, the Public Health Protection Act 2000 and an implementing ministerial decree require childhood vaccinations against nine diseases.10 If parents do not comply without good reason, they commit an offence and may be subject to sanction. The first applicant, Mr Vavƙička, was fined when he refused to have his 14 and 13-year-old children vaccinated against poliomyelitis, hepatitis B and tetanus as required by the State. The domestic courts dismissed his appeals. The other five applicants refused some or all of the nine vaccinations, resulting in their children’s exclusion from preschool. The Novotnás, for example, declined the measles, mumps, rubella (MMR) vaccine for their daughter, who was consequently refused admission to preschool on the ground that she posed a health risk to the other children. Their challenge in the domestic courts was also unsuccessful. The Chamber relinquished jurisdiction to the Grand Chamber of 17 judges due to the serious and controversial nature of the questions raised. Several governments11 and non-governmental organisations were given leave to intervene. Some of those governments (notably France, Poland and Slovakia) also restrict voluntariness. Indeed, the Court noted a European trend towards mandatory vaccination ‘due to a decrease in voluntary vaccination and a resulting decrease in herd immunity’.12 The Court did not consider there to be ‘any appearance of a violation’ of Articles 2, 6, 13 or 14 of the Convention.13 Nor was there found to be a breach of Article 9, which protects the right to freedom of religion and conscience. Most of the judgment is given over to the potential violation of Article 8. Article 8 is a right in two parts. To show a violation, Article 8(1) must be engaged, and there must be no justification under Article 8(2). Article 8(1) states that ‘Everyone has the right to respect for his private and family life, his home and correspondence’. Previous judgments of the Court make clear that compulsory vaccination constitutes such an interference,14 and the Court accepted that this was so in Vavƙička.15 Article 8(2) qualifies the Article 8(1) right. This means that public authorities can interfere with the right where it is justified on the basis that it is lawful, pursued in accordance with one of the legitimate aims set out in Article 8(2) (which include inter alia the protection of health and the protection of others), and is ‘necessary in a democratic society’. Applying Article 8(2), the Court found there was no violation of Article 8. It was ‘in accordance with law’ because it was based on accessible domestic law, which made the requirement and penalties for non-compliance clear.16 It followed a legitimate aim because it protects the health and the human rights of others: the objective of the relevant legislation is to protect against diseases which may pose a serious risk to health. This refers both to those who receive the vaccinations concerned as well as those who cannot be vaccinated and are thus in a state of vulnerability, relying on the attainment of a high level of vaccination within society at large for protection against the contagious diseases in question.17 The requirement of necessity merits further explanation. An interference with Article 8(1) is ‘necessary’ to achieve a legitimate aim (the protection of health and the protection of others, in this case) if it answers ‘a pressing social need’ in a manner proportionate to the legitimate aim pursued. The Court recognised a wide margin of appreciation in relation to health issues, particularly those involving ‘sensitive moral or ethical issues’, such as compulsion.18 The Court accepted that: there is a general consensus 
 that vaccination is one of the most successful and cost-effective health interventions and that each State should aim to achieve the highest possible level of vaccination among its population 
. Accordingly, there is no doubt about the relative importance of the interest at stake.19 The value of childhood vaccination rendered compulsion an acceptable mechanism in answer to a pressing social need, particularly in the light of the positive obligation of States to protect citizens’ lives and health.20 As we shall explore below, it was pertinent that children’s collective and individual best interests21 ‘are of paramount importance’.22 Also relevant to establishing that an interference is ‘necessary’ is the proportionality of the action to the legitimate aim pursued. Proportionality was of central importance in Vavƙička. It was assessed in relation to the particular facts in the various applications before the Court rather than in a wider abstract sense.23 Relevant factors included (inter alia) the limited number of vaccines mandated (nine), the exemptions that apply with respect to contraindications and conscientious objection,24 the nature of the compulsion which does not force compliance if people are willing to accept the fines and limitations on preschool provision,25 the effectiveness of the vaccinations in question,26 the availability of adequate compensation,27 and their safety record.28 Regarding the last of these, the Court heard that out of 100,000 children vaccinated annually in the Czech Republic, there were five or six cases of serious adverse effects.29 They are rare but serious, and so the Court reiterated30 the importance of taking precautions before vaccination. Precautions include checking for contraindications in each case and safety monitoring. In the case before it, the Court accepted that national methods kept the vaccines ‘under continuous monitoring by the competent authorities’.31 The Court also considered the nature of the penalties imposed for non-compliance. The fine was not excessive and did not impact on Mr Vavƙička’s children’s education.32 With regard to the other applicants, it was accepted that the refusal of a preschool place impacted the opportunities afforded to the young children, but this ‘choice’ could be avoided by accepting the legal duty to vaccinate.33 The Court considered that the impact was time-limited, and the parents in the cases before the Court were able to ensure their children’s development in other ways. In sum, invoking the argument of a duty of easy rescue,34 which applies when the cost of acting is minimal and the benefits to others are significant, the Court said: [I]t cannot be regarded as disproportionate for a State to require those for whom vaccination represents a remote risk to health to accept this universally practised protective measure as a matter of legal duty and in the name of social solidarity for the sake of the small number of vulnerable children who are unable to benefit from vaccination.35 As is evident from this quotation, the Court endorses the basis of the Czech Republic’s compulsory vaccination policy: 36 Solidarity towards the most vulnerable.37 Submissions from the German Government also emphasised the principle of solidarity in the formation of their policy, which requires proof of measles vaccination, immunity or evidence of contraindication as a prerequisite for enrolment in schools, subject to a penalty of EUR 2,500 and exclusion from educational institutions:38 Compulsory vaccination aimed to protect not only those vaccinated but also society as a whole and, in particular, vulnerable persons who cannot be vaccinated themselves on account of their age or state of health.39 The appeal to solidarity is interesting. It has one of its most obvious applications, as here, within the public health context. When we return to the context of the United Kingdom, however, the principle of solidarity is less familiar. It also needs to be carefully distinguished from other notions, such as those of reciprocity and justice. Hence, the claim is not that it is fair to distribute the burdens and benefits of vaccination in a certain way, nor that the vaccination of some is owed in reciprocity to those vulnerable to disease. A helpful definition of solidarity that does distinguish it from these other terms is given in the Nuffield Council on Bioethics Report, Solidarity: Reflections on an Emerging Concept in Bioethics, where it is stated to be ‘shared practices reflecting a collective commitment to carry ‘costs’ (financial, social, emotional or otherwise) to assist others’.40 As the Report makes clear, solidarity is both a description of the nature of certain practices and a prescription of these as ideal. In other words, solidarity characterises what is valuable about certain social forms and what is needed to maintain their valued character. In simpler terms, solidarity is about all being in it together and, as a result, all being prepared to share the burdens of a collective enterprise. On this account, immunising children against infectious diseases is justified because this ensures that everyone—all children and, indeed, the rest of society to which any child belongs—benefits. This is not best understood as being about balancing individual and collective benefits and burdens. Instead, it is about protecting what matters in our society: that we are all bound together by shared ties, and everyone must play their part in maintaining those ties. Solidarity is an important ideal and has had noticeable appeal in the current pandemic, where the need to secure high levels of vaccine take-up across society is pronounced. Judge Wojtyczek, however, points out that the case for social solidarity as a justification for mandate is most robust in relation to infectious disease. It is less relevant to tetanus, one of the nine mandated vaccines in Vavƙička, which is not contagious and where vaccination has no bearing on herd immunity. Solidarity is not wholly irrelevant as long as tetanus remains a public health issue41 and as long as the goal extends to solidarity between countries with the aim of reducing global health inequalities. Nevertheless, this was not explored in Vavƙička, where solidarity is inadequately defined. Moreover, the ideal sits oddly alongside any talk of interests and rights when these are understood in terms of what each individual, considered in isolation, may lay claim to. Indeed, it is hard to see how one might justify the compelled vaccination of children by appeal both to solidarity and to the best interests of the child, especially if the latter is understood to be paramount. In Vavƙička the Court said: It is well established in the Court’s case-law that in all decisions concerning children their best interests are of paramount importance. This reflects the broad consensus on this matter 
. It follows that there is an obligation on States to place the best interests of the child, and also those of children as a group, at the centre of all decisions affecting their health and development.42 The decision is based on both the collective and individual interests of children. The Court speaks of the best interests of children being of paramount importance, but refers in the same paragraph to Article 3 of the United Nations Convention on the Rights of the Child, which says ‘In all actions concerning children 
 the best interests of the child shall be a primary consideration’ (our italics). Dissenting Judge Wojtyczek found this aspect of the majority judgment problematic. He argued that: [T]he central question around the best interests of the children is not whether the general health policy of the respondent State promotes the best interests of children as a group, but instead how to assess in respect of each and every specific child of the applicant parents ... whether the different benefits from vaccination will indeed be greater than the specific risk inherent in it.43 Yet, as is public health where what is at is the of to ensure the good health of a population rather than a cannot be rendered in the terms of the of between such as a and or and matters to such is whether the or to the and what is is the value of individual In the case of a young child, there can be no appeal to their children are not of such a child is not competent to parents and the make decisions on their taking the the what is is what is in the best children, their to if they are competent to do In and the a to competent children’s decisions to protect their best at where the decision or at A to a competent refusal of has recognised in the but is in Applying these general to childhood interests we should account of is It can each and every individual child, or it can the children as a collective In a public health what matters is the good of the the population as a This is the case with against infectious disease. the must be in place for a to be what is what a vaccination to to be vaccinated with population immunity In this it does not to in terms of individual of as well as the balance of and benefits to the population as a are also the majority in Vavƙička, this particular child is in their interests and also in the interests of all children, in as as a vaccine both protects against the relevant and to Indeed, if a vaccine does the a child indeed all the interests of who might the if our is a public health and we should account of the balance of and benefits across a whole each child is not justified by its being in their best interests being the we cannot that the best interest of the individual child is paramount where that means of greater weight than other as we have ethical of and of the of a interests are relevant and In and parents can vaccinations for young children. In about child vaccination between those with the must consider each child with his best interests as the paramount In such the courts have recognised that vaccination against the of a but with of or the child is in the is not a disproportionate breach of the Article 8 rights of the or the the courts have found in each case that vaccination is in the best interests of individual In a Court of decision said: vaccinations are not the evidence that it is in the best interests of children to be vaccinated in accordance with Public Health there is a specific in an individual Public Health a collective of the interests of children and on their can the collective interests of children the consideration of the best interests of the particular In what is childhood vaccination was no in Vavƙička because the children in each of the cases were not against their the parents were about the penalties The Nuffield Council on Bioethics Report on Public a the various a Government might to a public health goal should be from the to the most The the and the higher the the greater the required justification of the Public health it further should the means to achieve the required public health the public benefit of a vaccination is population immunity. a collective benefit can be if the benefit to each vaccinated individual is or If the public benefit can only be if of children are the question of what to ensure that this are proportionate and justified being the The question as young children cannot give their to being and in and their best interests are argued to be paramount. Proportionality was central to the but Judge Wojtyczek that greater should have given to the availability of less the Nuffield Council on Bioethics Report in that that and those that nor but and to In Vavƙička, were in both the to have their children vaccinated and the children a to This latter on the child by and on the by their children’s educational but the Court said: that was the of the made by their parents to to comply with a legal the of which is to protect in particular in that age The to a child is by the to the who are consequently not to the of Indeed, on this account, the balance of and benefits the The parents who not to their child have their freedom to make decisions for their Yet, no jurisdiction and no can to do what their the Court’s of a wide margin of appreciation and limited on less the justification of the Czech policy in Vavƙička does not that could breach the Article 8 rights of children or The Court on the of compulsion rather than the but only because those effects were limited in the cases before This can be with justification of the controversial to require vaccination in where it was said: When vaccination is of as it is only in case a child is not vaccinated as by law, a penalty is imposed which may be followed by and The to this penalty no doubt in cases to vaccination where it be whether the penalty is or it does not vaccination in all If a is to the his child remains 
. could be made compulsory only by taking the child from the and it against his if he not or to its The effects of have the potential to the proportionality those who cannot the fine or for whom be without might be compelled in that those with greater some limitations on may pose only an interference with for example, of uptake is by rather than not a child does to serious to the child, the justification of childhood vaccination cannot be only in these as we have what does justify the of children is the fair of and benefits across a whole children from is in the interests of all and not the best interests of the child with The proportionality of is pertinent in the debate over COVID-19 In the vaccine out in not how we do We do by the Government a which will in The potential for of and will be relevant to as will the on that from vaccination to to and children be required to COVID-19 It is the first children to receive COVID-19 vaccination will be and so in the will be competent to their to vaccination. children and young will be children, both the risk of vaccination and the risk of COVID-19 is about the and of what is is the between the justification for childhood vaccination, which is clear and and the limited for the and both and long-term safety of all the individual COVID-19 vaccines in and indeed for the last of these in have in some COVID-19 vaccines that On a of vaccine in some countries for childhood it will be to see whether the to the pandemic, both for and in the vaccine is is whether the of COVID-19 will higher in the population without national If this and their parents may have a claim to vaccine and be willing to accept any of vaccine and have argued for mandatory COVID-19 vaccination in all children. They that it is in children’s individual and collective interests to receive COVID-19 the duty to the child, the duty of easy the duty to protect child by children from the and effects of and this argument is by the current of evidence for safety and in for example, the which is not mandated in countries in child definition is is not the its such State over citizens’ in terms of the of their and has the pandemic, which might public of any of vaccine children the to for is Judge Wojtyczek, in his argued that parents are in the best to children’s best In countries such as the United that a voluntary vaccination policy, the on rights to is in the case of v for example, to to interfere with decisions about their children’s and in said: [I]t is a principle of family in this jurisdiction that for decisions about a child rest with his In most the parents are the best people to make decisions about a child and the State whether it be the or any other public has no with the of the child is or is to as a of the given to the child not being what it be to a to Whilst in and about have thus in of vaccination on the basis that this is the that is in the best the decision in Vavƙička that the to State mandate is but a small Indeed, it is an the UK Government was before the Vavƙička will impact on the of It has a on solidarity that is in the United and which It has individual best interests with the collective interests of In particular, this judgment the that best interest must be considered should be understood both as the individual child and as the collective of all children. is in the interests of the child who is vaccinated and all other children who benefit from the general of a there are of compulsion and should and be and might proportionate and the COVID-19 has the and impact on in the of an Whilst the has not vaccine it has the potential of vaccinations to and social We the support of the which has two of the in a on ethical and in the pandemic,

Open access
Ethics and Legal Issues in Pediatric Healthcare
Child and Adolescent Health
Conflict of Laws and Jurisdiction
Original source
Nov 13, 2013·The Journal of Medicine and Philosophy A Forum for Bioethics and Philosophy of Medicine
3 cites
What Are Our Moral Duties? Critical Reflections on Clinical Equipoise and Publication Ethics, Clinical Choices, and Moral Theory

Mark J. Cherry

Since action for itself requires a particular content and a determinate end, whereas duty in the abstract contains nothing of the kind, the question arises: what is duty? For this definition [Bestimmung], all that is available so far is this: to do right, and to promote welfare, one’s own welfare and welfare in its universal determination, the welfare of others. (Hegel, 1991 [1821], 161, §134) Nothing in particular follows from general concepts of the right, the good, the just, or the virtuous; not even in bioethics. Even to sort useful information from noise, one must first specify a moral context within which to make decisions. Without particular content, morality cannot provide definitive guidance for choosing among different accounts of human flourishing or the proper ranking of virtues, much less how to proceed when the right and the good conflict.1 If morality is to be more than a mere formalism—for example, the empty repetition of rhetorical phrases, such as “respect patient autonomy” or “preserve human dignity”—then particular content must be specified to orient proper decision making.2 Among the challenges is that medicine is an applied science as well as a social endeavor. Medical science and the treatment of patients are always set within particular cultures and human interests. Consequently, the actual practice of health care involves an overlapping set of communities (scientific, moral, religious, and political) striving to understand and to manipulate the world in ways that humans find socially useful, morally appropriate, aesthetically pleasing, or otherwise fitting. As a result, medical reality and the expectations of clinical judgment are inevitably historically and culturally conditioned. In turn, such taken for granted background conditions impact our appreciation of moral obligations. This issue of The Journal of Medicine and Philosophy brings together three clusters of essays, focused in turn on research ethics, clinical ethics, and moral theory. Despite the array of topics, each author carefully explores core questions of bioethics: Which moral standard? Whose account of moral obligations ought to guide health care as both a theoretical and a practical endeavor? The first cluster of articles explores moral standards for guiding medical research. In medicine, one must abandon the assumption that accepted treatments are good simply because they are accepted. Instead, one must critically examine the standard of care together with new and innovative alternatives. Thorough scientific research together with robust scholarly debate is integral to reigning in the untutored human desire to ameliorate pain and suffering so that treatments do more benefit than harm. Moreover, it is difficult to know truly in medicine. Problems such as spontaneous remission and natural cures, physician remembrance of therapeutic triumphs more clearly than failures, the psychology of discovery, and the placebo effect distort judgments of a treatment’s effectiveness. At times and in various ways, patients, physicians, and scientists see what they anticipate. Medicine adds to these challenges the all too human urge to help those in need. Yet, as the history of medicine pays witness, many interventions do more harm than benefit. Human suffering caused by ill-founded but well meaning treatments has been significant. As Gelfand (2013), Meyerson (2013), and Potts et al. (2013) each make clear, rigorous scientific research and open scholarly debate are central to the advancement of medical practice and the protection of patients. Gelfand and Meyerson document, for example, the way in which clinical research with human subjects often involves a conflict between judgments regarding the proper treatment of patients and appropriate methods for obtaining good scientific data. Physicians who are both researchers and clinicians have competing professional interests, for example. The primary goal of clinicians is generally doing what is best for one’s patients within certain constraints, such as informed consent, the standard of care, and resource availability. Clinicians recommend treatments and interventions based on what they believe is in the best interests of particular patients. The primary goal of researchers, however, is the discovery of data to address research questions. The objective in a scientific inquiry is to follow an approved protocol to obtain data, to test research hypotheses or theoretical constructions, and to contribute to the base of scientific knowledge. Researchers are, however, constrained in how they may use subjects who may or may not benefit from the study design. Particular moral standards, such as “clinical equipoise,” the “precautionary principle,” and prohibitions against lying, are routinely identified as essential for fulfilling our duties to protect patients from unethical researcher conduct. Consider, for example, “clinical equipoise” which requires that clinician-researchers terminate a study when accumulated evidence so thoroughly supports one treatment arm that “the committee of investigators believe no open-minded clinician informed of the results would still favor” the other treatments being tested (Freedman, 1987, 145; cited in Gelfand, 2013, 593). Is clinical equipoise an adequate guide to appropriate ethical research on human subjects? Gelfand concludes that clinical equipoise is both morally and conceptually problematic. Morally, the difficulty is that clinical equipoise, if taken seriously, requires shutting down too many well-structured randomized clinical trials as unethical. Conceptually, the challenge lies in attempting to flesh out the ambiguous “open-minded clinician” standard. Although there is some disagreement concerning who should determine whether clinical equipoise exists, I will assume, as do most others, that this determination should be made by the physician-researcher conducting the randomized clinical trial. Presumably, the physician-researcher should begin this process by attributing knowledge of preliminary studies to these clinicians. In addition, she would have to assume that clinicians in her clinical community were aware of the general facts/theories/beliefs relevant to the clinical trial. Put differently, whether one will conclude that clinical equipoise exists depends, among other things, on what beliefs one attributes to members of the clinical community. (Gelfand, 2013, 594–95) Gelfand rightly notes that it is a very common psychological phenomenon to conclude that those who disagree with you “. . . are wrong or unaware of all the relevant facts or for some reason misunderstand the issue. Many of us often assume that if others truly understood the issues, they would agree with us” (2013, 595). Clinical equipoise, he argues, assumes that all “properly open-minded” clinicians who are informed regarding the research data would share the same background information, beliefs, standards for evaluation, and interpretation of results, as well as clinical or research goals. Having reasoned in such a fashion, however, once the physician-researcher conducting the trial concludes that clinical equipoise does not exist, he may terminate important clinical trials before adequate data can be collected. Researchers who disagree with such a conclusion may be easily ruled out as failing to be properly “open minded.” The “precautionary principle” raises related challenges. As with other human endeavors, medicine can become infatuated with the seemingly original and progressive. That technological or surgical innovations are new, however, guarantees neither superiority nor safety. The underlying rationale of the precautionary principle is to treat unproven scientific innovation with appropriate regulatory caution. When there is good reason to conclude that an innovation may cause serious harm, even though uncertainty exists regarding the probability or level of risk, the precautionary principle holds that regulatory action should proceed as if such innovation is in fact dangerous. Meyerson argues that the core difficulty with the precautionary principle is that it is unduly vague. Again, there is a need for the specification of a particular standard. All choices involve risk. How much risk and of what sort is morally acceptable? Taken too weakly, the precautionary principle offers almost no guidance: “. . . if all that is meant by the precautionary principle is that the absence of scientific certainty does not necessarily justify the refusal to regulate risky new technologies, then it is hard to see what is supposed to be distinctive about the guidance it offers” (Meyerson, 2013, 610). On the other hand, understood in a very strong manner, the principle rules out beneficial innovation: “At its strongest, the precautionary principle insists that potential benefits should be foregone unless it can be shown that they pose no risk at all. This is obviously an unacceptable position” (Sunstein, 2005; Meyerson, 2013, 610). Seeking to clarify a more moderate approach, Meyerson argues that there should be a general presumption in favor of restricting innovative technologies when they appear to pose a serious risk of harm. Proponents of the new technology, she concludes, bear the burden of proof to demonstrate the utility and relative safety of the innovation. Applied to the example of innovative surgical techniques, Meyerson argues that such a moderate approach helps to avoid the dangers that occur when surgeons are prone to bias in favor of new innovations, especially when they have a financial stake in the use of the invention, while also permitting advocates to demonstrate the safety and effectiveness of new technology. Discerning readers might at this point wish to raise the following questions: What are the risks of a bias in favor of the status quo? How should we assess the dangers of delaying innovation?3 What if, for example, scientific debate is stifled so as to preserve the status quo? In this issue, Potts et al. (2013) explore just such key concerns. For example, should researchers self censure scientific results that might undermine public confidence in medical judgment, such as the diagnosis of brain death? And, should professional journals refuse to publish articles that call into question current medical orthodoxy on such matters? Recent debate has brought brain-oriented criteria for determining death and donation after cardiac death policies into public scrutiny (see, e.g., Bernat, 2010; Iltis and Cherry, 2010; Khushf, 2010; Miller, Truog, and Brock, 2010; Shewmon, 2010; and Veatch, 2010). Some proponents of organ transplantation have argued that responsible scholarship requires refusing to publish any such results. As Potts et al. summarize: Some articles call for a closing of the debate over the criteria for death since such criteria are related to organ donation, and an ongoing debate about death criteria may negatively affect the public’s willingness to donate. They suggest allowing only ‘responsible scholarship’ in the area (according to which ‘irresponsible scholarship’ is considered to be critiquing brain-based criteria for death. . . . (2013, 626) Such debate, critics argue, creates unnecessary doubt among members of the public regarding the certainty of brain-oriented determinations of death and, consequently, for the appropriateness of procuring organs from donors who have been declared dead based on such criteria. To further complicate matters, institutional policy for determining that brain-based criteria for death has been satisfied may vary among institutions. Potts and his colleagues argue that without sustained and open debate, the harms caused by adherence to the status quo may never be adequately exposed. Is it morally appropriate to stifle or otherwise censor open-minded and scientific debate so as to further one’s preferred social goal, such as greater access to organ transplantation (or, perhaps, ever more government action on so-called human-caused global warming)? The next brace of essays turn the discussion to moral duties in clinical ethics. Mills (2013) and Reed (2013) focus on elements of procreative liberty, Stoyles and Costreie (2013) rethink voluntary euthanasia, whereas Cohen and Shapiro explore whether placebo treatment violates moral prohibitions against lying. To begin, Mills argues that reproductive liberty ought to be appreciated as a positive entitlement: “that is, a freedom to make oneself according to various ethical and aesthetic principles or values” (2013, 639). Mills contends that Michel Faucult’s analysis of the “practice of liberty” together with a naturalistic approach to rights entails at least limited positive claim rights in support of reproductive autonomy, “. . . one that requires that reproductive projects are promoted rather than simply honored, for example” (2013, 655). Reed in turn shifts our attention to an exploration of Plan B “emergency” contraception. Reed’s conceptual geography maps the moral location of emergency contraceptive pills relative to the ongoing abortion debates. He argues, for example, that “If we know that there are no postfertilization effects, then emergency contraception becomes morally similar to barrier methods: it prevents pregnancy without interfering with a fertilized egg” (2013, 670). However, insofar as Plan B contraception has a postimplantation effect, resulting in the abortion of a fetus, then abortion is an intended consequence of emergency contraception. As a result, abortion would not rightly be described as an unintended side effect of taking Plan B contraception; utilizing emergency contraception would be morally similar to other forms of early abortion. How should we appreciate reproductive liberty? And, which moral context applies to such choices? Sometimes to gain insight into the proper standards for clinical ethics, we must learn to see moral debates from new perspectives. The next two essays seek to reframe the bioethical debates regarding euthanasia and patient deception in terms of the “patient’s interests.” Stoyles and Costreie (2013) hold that the euthanasia debate has gone astray by emphasizing the importance of such distinctions as voluntary, involuntary, and nonvoluntary euthanasia. The question, they believe, is whether the practice of euthanasia accords with the “patient’s interests.” Insofar as euthanasia advances a patient’s interests, it ought to be appreciated as morally permissible. Similarly, Cohen and Shapiro conclude that while lying to patients is, all things considered, morally wrong, placebos are permissible precisely when they advance the patient’s interests in ways comparable to other forms of therapy. For example: Placebo analgesia refers to the reduction in pain following the administration of an otherwise inert substance, e.g., administering a starch pill (that does not directly alter pain physiology), which is believed by the subject to be an analgesic drug. The administration of a placebo is not inert, however, and its effects far from imaginary. Most strikingly, various findings show that placebo analgesia can under certain conditions mimic the actions of opiates on the opioidergic system, the most potent pain reducing system of the body. (2013, 699) An undue focus on deception, they argue, inappropriately skews the moral analysis. Insofar, as placebo treatment has an appropriate therapeutic effect comparable to other forms of therapy, it should not be morally ruled out. In each case, the authors challenge the reader’s perspective on such bioethical questions so as to assist us to see our moral duties anew. The final two essays take a conceptual step back from applied ethics, actively to engage moral theory. Sjöstrand et al. (2013) argue that preserving the value of patient autonomy may require medical paternalism, whereas Pamental (2013) explores the utility of pragmatism as a moral theory to guide bioethical decision making. On the one hand, Sjöstrand et al. (2013) hold that there are good reasons to support patient autonomy and to promote autonomy as a value in healthcare decision making. As a practical matter, however, sometimes weak forms of paternalism ought to be accepted to promote patient autonomy over the long term. Theoretical clarity regarding autonomy as a value is necessary, they argue, if we are to determine how best to respond to patient choices that appear to limit autonomy. If only capacity is valuable, paternalism is easily justified as soon as a patient acts or decides in a way that threatens her future autonomy. It seems strange to claim that autonomy is valuable, but that there is no value in actually having one’s autonomous decisions regarding important things in life respected. If exercise of autonomy is also valuable, paternalism for the sake of autonomy is less easily justified, since any infringement of a person’s exercise of her autonomy would be of direct negative value. (2013, 719–20) Pragmatism, on the other hand, Pamental argues, embraces the view that the role of philosophy is to change the world. Pragmatism is a form of what he terms “radical empiricism”: “At its heart, radical empiricism presupposes two things: first, that experience is more than simply phenomenological . . . [and second] experience can provide us with both the tools for making things better and the criteria for evaluating what better means” (2013, 728). Moreover, pragmatism is a form of moral contextualism: “. . . any feature of a situation is potentially morally significant, but that even generally accepted moral features are not always so” (2013, 737). As a result, moral principles are not absolutes; they are contingent and relative to the subjective interests of particular individuals, who themselves are situated within particular cultural and social backgrounds. It is this practical starting point, he argues, that both sets the moral context and directs moral inquiry in the clinical setting. What are our moral duties? In terms of which ranking of cardinal human goods and right-making conditions ought we to evaluate the moral significance of medical research on human subjects, reproductive liberty and abortion, organ transplantation, medical deception and euthanasia? As this issue of The Journal of Medicine and Philosophy makes clear, the field of bioethics faces a plurality of moral rationalities that are grounded in various rankings of cardinal values and right-making conditions, calculations of harms and benefits, claims to virtue or vice, as well as competing understandings of human flourishing. Different rankings and accounts of right-making conditions also presume divergent rules of moral evidence and valid moral inference. All such standards also appear to be deeply embedded within and conditioned by particular cultural and social circumstances (see, e.g., Cherry, 2012; Delkeskamp-Hayes, 2012; Engelhardt, 2012). Insofar, as all we have to work with are our and contingent subjective of itself to be once precisely on is the of all

Open access
Ethics in medical practice
Ethics in Clinical Research
Ethics and Legal Issues in Pediatric Healthcare
Original source
Aug 1, 2013·Soundings An Interdisciplinary Journal
105 cites
Who Shall Live When Not All Can Live?

James F. Childress

Who shall live when not all can live? Although this question has been urgently forced upon us by the dramatic use of artificial internal organs and organ transplantations, it is hardly new. George Bernard Shaw dealt with it in “The Doctor's Dilemma”: Sir Patrick.Well, Mr. Savior of Lives: which is it to be? That honest decent man Blenkinsop, or that rotten blackguard of an artist, eh?Ridgeon.It's not an easy case to judge, is it? Blenkinsop's an honest decent man; but is he any use? Dubedat's a rotten blackguard; but he's a genuine source of pretty and pleasant and good things.Sir Patrick.What will he be a source of for that poor innocent wife of his, when she finds him out?Ridgeon.That's true. Her life will be a hell.Sir Patrick.And tell me this. Suppose you had this choice put before you: either to go through life and find all the pictures bad but all the men and women good, or go through life and find all the pictures good and all the men and women rotten. Which would you choose?1 A significant example of the distribution of scarce medical resources is seen in the use of penicillin shortly after its discovery. Military officers had to determine which soldiers would be treated—those with venereal disease or those wounded in combat.2 In many respects such decisions have become routine in medical circles. Day after day physicians and others make judgments and decisions “about allocations of medical care to various segments of our population, to various types of hospitalized patients, and to specific individuals,”3 for example, whether mental illness or cancer will receive the higher proportion of available funds. Nevertheless, the dramatic forms of “Scarce Life-Saving Medical Resources” (hereafter abbreviated as SLMR) such as hemodialysis and kidney and heart transplants have compelled us to examine the moral questions that have been concealed in many routine decisions. I do not attempt in this paper to show how a resolution of SLMR cases can help us in the more routine ones which do not involve a conflict of life with life. Rather I develop an argument for a particular method of determining who shall live when not all can live. No conclusions are implied about criteria and procedures for determining who shall receive medical resources that are not directly related to the preservation of life (e.g. corneal transplants) or about standards for allocating money and time for studying and treating certain diseases.Just as current SLMR decisions are not totally discontinuous with other medical decisions, so we must ask whether some other cases might, at least by analogy, help us develop the needed criteria and procedures. Some have looked at the principles at work in our responses to abortion, euthanasia, and artificial insemination.4 Usually they have concluded that these cases do not cast light on the selection of patients for artificial and transplanted organs. The reason is evident: in abortion, euthanasia, and artificial insemination, there is no conflict of life with life for limited but indispensable resources (with the possible exception of therapeutic abortion). In current SLMR decisions, such a conflict is inescapable, and it makes them so morally perplexing and fascinating. If analogous cases are to be found, I think that we shall locate them in moral conflict situations.An especially interesting and pertinent one is U.S. v. Holmes.5 In 1841 an American ship, the William Brown, which was near Newfoundland on a trip from Liverpool to Philadelphia, struck an iceberg. The crew and half the passengers were able to escape in the two available vessels. One of these, a longboat, carrying too many passengers and leaking seriously, began to founder in the turbulent sea after about twenty-four hours. In a desperate attempt to keep it from sinking, the crew threw over board fourteen men. Two sisters of one of the men either jumped overboard to join their brother in death or instructed the crew to throw them over. The criteria for determining who should live were “not to part man and wife, and not to throw over any women.” Several hours later the others were rescued. Returning to Philadelphia, most of the crew disappeared, but one, Holmes, who had acted upon orders from the mate, was indicted, tried, and convicted on the charge of “unlawful homicide.”We are interested in this case from a moral rather than a legal standpoint, and there are several possible responses to and judgments about it. Without attempting to be exhaustive I shall sketch a few of these. The judge contended that lots should have been cast, for in such conflict situations, there is no other procedure “so consonant both to humanity and to justice.” Counsel for Holmes, on the other hand, maintained that the “sailors adopted the only principle of selection which was possible in an emergency like theirs,—a principle more humane than lots.”Another version of selection might extend and systematize the maxims of the sailors in the direction of “utility”; those are saved who will contribute to the greatest good for the greatest number. Yet another possible option is defended by Edmond Cahn in The Moral Decision. He argues that in this case we encounter the “morals of the last days.” By this phrase he indicates that an apocalyptic crisis renders totally irrelevant the normal differences between individuals. He continues, In a strait of this extremity, all men are reduced—or raised, as one may choose to denominate it—to members of the genus, mere congeners and nothing else. Truly and literally, all were “in the same boat,” and thus none could be saved separately from the others. I am driven to conclude that otherwise—that is, if none sacrifice themselves of free will to spare the others—they must all wait and die together. For where all have become congeners, pure and simple, no one can save himself by killing another.6 Cahn's answer to the question “who shall live when not all can live” is “none” unless the voluntary sacrifice by some persons permits it.Few would deny the importance of Cahn's approach although many, including this writer, would suggest that it is relevant mainly as an affirmation of an elevated and, indeed, heroic or saintly morality which one hopes would find expression in the voluntary actions of many persons trapped in “borderline” situations involving a conflict of life with life. It is a maximal demand which some moral principles impose on the individual in the recognition that self-preservation is not a good which is to be defended at all costs. The absence of this saintly or heroic morality should not mean, however, that everyone perishes. Without making survival an absolute value and without justifying all means to achieve it, we can maintain that simply letting everyone die is irresponsible. This charge can be supported from several different standpoints, including society at large as well as the individuals involved. Among a group of self-interested individuals, none of whom volunteers to relinquish his life, there may be better and worse ways of determining who shall survive. One task of social ethics, whether religious or philosophical, is to propose relatively just institutional arrangements—which criteria and procedures of selection is most satisfactory in view of the human condition (man's limited altruism and inclination to seek his own good) and the conflicting values that are to be realized?There are several significant differences between the Holmes and SLMR cases, a major one being that the former involves direct killing of another person, while the latter involve only permitting a person to die when it is not possible to save all. Furthermore, in extreme situations such as Holmes, the restraints of civilization have been stripped away, and something approximating a state of nature prevails, in which life is “solitary, poor, nasty, brutish and short.” The state of nature does not mean that moral standards are irrelevant and that might should prevail, but it does suggest that much of the matrix which normally supports morality has been removed. Also the necessary but unfortunate decisions about who shall live and die are made by men who are existentially and personally involved in the outcome. Their survival too is at stake. Even though the institutional role of sailors seems to require greater sacrificial actions, there is obviously no assurance that they will adequately assess the number of sailors required to man the vessel or that they will impartially and objectively weigh the common good at stake. As the judge insisted in his defense of casting lots in the Holmes case: “In no other than this [casting lots] or some like way are those having equal rights put upon an equal footing, and in no other way is it possible to guard against partiality and oppression, violence, and conflict.” This difference should not be exaggerated since self-interest, professional pride, and the like obviously affect the outcome of many medical decisions. Nor do the remaining differences cancel Holmes' instructiveness.Which set of arrangements should be adopted for SLMR? Two questions are involved: Which standards and criteria should be used? And, Who should make the decision? The first question is basic, since the debate about implementation, e.g. whether by a lay committee or physician, makes little progress until the criteria are determined.We need two sets of criteria which will be applied at two different stages in the selection of recipients of SLMR. First, medical criteria should be used to exclude those who are not “medically acceptable.” Second, from this group of “medically acceptable” applicants, the final selection can be made. Occasionally in current American medical practice, the first stage is omitted, but such an omission is unwarranted. Ethical and social responsibility would seem to require distributing these SLMR only to those who have some reasonable prospect of responding to the treatment. Furthermore, in transplants such medical tests as tissue and blood typing are necessary, although they are hardly fully developed.“Medical is not as as many since there is debate in medical about the relevant and Although can contribute little or nothing to this two may be in First, should be used only to determine the group from which the final selection will be and the attempt to of to should be Medical would exclude some but would not as a of between those who the first For example, if two for were the physicians would not choose the one with the better medical selection would be made on other Second, and should be to an absolute and should be only when they are without related to medical the to with the of which might to most significant moral questions when we to the final the of has been and the number is than the other criteria should be used? should the final selection be First, I shall examine some of the that from to make the final selection in of social these about the and of the I shall the possible for selection or criteria of social on but most they are The and to the society is although this obviously be from his of and the of his to society an is in of these social and has been to suggest the of that affect social value or we encounter the first major of this do we determine the relevant criteria of social of various social are only too does one and the of the life, that day we may how to or or the value in in the same and way that has I am not that we can or that we should attempt to do if the various social and human in could be how do we determine how much we will to Which will have in case of more in the light of which values and principles do we social possible way of determining the values which should be in selection has been by He that our medical decisions about allocating resources are on an of values by there is no way of we should be and about it. should we He that we the values that most in our society and use them as criteria for distributing SLMR. values can be by or if in this put a greater on than men would have a greater on our SLMR than of is significant and the who was SLMR in might be in as the greatest American since George is criteria that could be applied but at the and as well as individual the criteria of social value that are used in is this more than in the and decisions of the selection committee of the where such as and have been significant for determining who shall As two conclude after these criteria and they who the the way but who have so much to the making of The is no for a with bad to this first of determining social values is a only is it if not to on social but it is easy to our will be in a few and the of actions will it is to which persons will their in in and the of of For these as has might be a but we simply the to the which we must is more than when we think in make us that such an approach to SLMR is the of but this should not be The on another the approach would in the person to his social and it and the of the his as a person which be to his or to It is not at all that we are to live with these of who the artificial has we to the principle that social should determine we patients to be with only when they are go to have have a a good and to the that any for for selection is a to the of view which The is not to all but to that SLMR cases are which involve The however, can have and for from by and can go and seek for criteria for the question of life or death in the of the artificial these criteria to the of human the to which they can be little more than that at by casting The he will be to those in American medical is most to a certain or in of which when is this of the and where it only as a and It only us how all selection criteria and procedures the to us in the of the human condition and its This approach is with his view of the task of us how to and ethics, I would can help us the and in light judgments can be made. Even if all actions in SLMR should involve some may human to a greater than others. that a on any criteria is more than that at by casting selection by would the to the moral and values that we are to maintain a of is that we use some of or such as first or such as a to determine who shall be as a to when and judgments can and must be made. Edmond Cahn who the casting of lots as Cahn it, crisis involves too for and too for other as a to which human these values are with the of it is to have persons rather than determining who shall they are with the outcome of the the such as and of being which make human life it is are to be and in the the it must be that the use of seems and the of criteria in SLMR to make their as and as possible so that does not determine who shall however, the moral and values which might be supported by selection by or A more is that the procedure that I develop the relevant moral too That so the argument might the society and its and not the individual with his illness and upon SLMR. is that the values and principles at work in the may well over those in the both of their and and of the of selection in of social As “The more is the to be made of an and the more the life and the more the for human as a moral principle I is in certain conflict situations, it a significant of by of it be as a and procedure without an the including human which might it. this about the Holmes case: of our upon as the all the and the in our should think rather of of as the of the of those individuals to one another that might have been and by casting The and which on the approach would be in his social role and can be and to by a recognition of his equal to be a is by procedures which of selection by more the by human than does It is not but it is to the of letting all die or only those who have the greatest social and argument can be by values other than individual and of value in the medical is the of between and Which selection criteria are most in with this of Which will and it? is that selection by or is from this which is to for human is an of about It is not simply the that another will a particular but more that another will him in certain will him as a As Although has to do with on a of another person, it is on a of a the to to with or live to and so to another is first of all to him to the principle of morality in his with to as a person, This be in situations when a person decisions about him to be made in of his social for such decisions his as a on of in social value or would have reason for that his had been the that one is being not as an in himself but as a means in medical progress or the of a greater social good is with and of this in the which was after the after the first heart The of between the and is not only an value in the of being an in the treatment. It is to be of its as a the related values of individual and are maintained in selection by other the argument for this Which criteria and procedures would men have to a in which several men are to determine for themselves and their the criteria and procedures by which they would to be to and from SLMR if the need need to two and ask which set of criteria and procedures would be as the most and, indeed, the The are The men are are interested in their own that of members of their and of they are not by Furthermore, they are of their own and to the social do not how they would in a the for SLMR in of social these which would be all or the use of Which would seem the most The By which set of criteria would they to be in or from the of those who will be The choice in this and of would be selection or since this of A possible is that one would to a and choose the I think especially since I that the in this are for their as well as for selection or could be more to the It would make more for men who are self-interested but about their to society to a set of criteria which would in of would selection by as relatively just and for or The and those who are would be greater if the is on social than if it is on and be in these situations, but they would be by the of being relatively by makes this A to would make for the and those who have a specific in It would be for them to his by relatively of criteria in is involved. the of life have us to the of and to the of or human life is an after has an absolute to most of us would that we have as much to it as in Although it is as selection by is in in I am not of any which some of its patients from kidney in to make for later who are better in of social Furthermore, few would it. few would a person from a kidney on the that a person better had just In a of the of by at the of from to patients but were not the had its of in and is at least certain is that we extend this principle first to determine who the patients shall live or that we artificial such as a or first would be more than a since the make their over a of time rather than as a group at one This procedure would be in with at least one principle in our and with our of individual and in to these values can be by how the can be to the one easy way of this task is to maintain the of which to a patients are not that they are being for SLMR in to the treatment. whether is or not is not the significant it is rather for would be most to the is that can be more if of and are and that they are by selection by or has another since it would the need for a committee to examine in of their social This responsibility can be there is a possible of use of selection which is interesting to although I do not it as a good reason for It can be as of the of has that SLMR cases would if these scarce resources were rather than on social would no be a the of and would make certain that they would not be by a selection they would help to or so that medical would be and the that I have are the of to be without If we would we not just after we had in it The direction of argument has been against any and I would this as the way to me one possible way of while at the same time them so that they would be of the approach is that which make it necessary to that one man is indispensable for a society in view of a particular set of it the when the is a for the argument to this has that the of would on those who think that the social in this is so that they simply by the outcome of a or a first first the reason must be rather than that is, we from in this not we to of this to the of our but his would be the in a social value the should be used as a of exception in for example, only if it would a reason to another person from a kidney if all were this to the has been made to we would be to put this of another for a only if we would be in which all are being to a by from it. would make an exception I do not this procedure of I think that one can it while about selection by or If it is a lay committee would be upon to with the since the or others would in be the outcome of or This lay committee would determine whether this was so indispensable at this time and that he had to be saved by the values by It would make it that exception is if at only as the of two a defense would be only if and so many moral and values in SLMR

Open access
Organ Donation and Transplantation
Ethics in medical practice
Ethics and Legal Issues in Pediatric Healthcare
Original source
May 14, 2013·The Journal of Medicine and Philosophy A Forum for Bioethics and Philosophy of Medicine
17 cites
The Decisional Capacity of the Adolescent: An Introduction to a Critical Reconsideration of the Doctrine of the Mature Minor

B. C. Partridge

Do adolescents have the decisional capacity of adults? Or, are they in crucial ways still immature, that is, are they deficient decisionmakers? This question has been answered in quite different ways in medical versus criminal law. In medical law, an exception from the requirement of parental consent was crafted to allow adolescents to make decisions in restricted circumstances associated with quasi-medical emergencies. Over the last few decades, this exception has grown into an almost blanket acceptance of the decisional capacity of adolescents under the age of 18 and generally over the age of 14 to give valid consent to treatment. At the same time, a seemingly contrary view of the decisional capacity of minors developed in American criminal law, especially around cases such as Eddings v. Oklahoma (1982), Johnson v. Texas (1993), Roper v. Simmons (2005), Graham v. Florida (2010), Jackson v. Hobbs (2012), and Miller v. Alabama (2012). These Supreme Court decisions recognize adolescents as having a substantive lack of maturity and an underdeveloped sense of responsibility that distinguishes adolescents from adults. The Court in Graham v. Florida (2010) noted, for example, that “developments in psychology and brain science continue to show fundamental differences between juvenile and adult minds . . . [in] parts of the brain involved in behavior control” (560 U.S., at __ [slip op., at 17]). The result is that courts have accepted the view that the decisional capacity of adolescents is not fully developed and that as a consequence adolescents cannot have the same degree of criminal culpability as adults. In evaluating the decisional capacity of minors, one thus faces the challenge of how to harmonize these two quite different trends in the assessment of adolescent decision making. This issue of The Journal of Medicine and Philosophy brings together psychological and neurophysiological data with philosophical–bioethical reflections on what should count as decisional capacity or decisional agency. Some of the articles address as well the issue of the authority of parents over their children and how this bears on the question of whether adolescents under the age of 18 should generally make medical decisions without the involvement of their parents. The conclusions one reaches on these matters regarding adolescent decisional capacity and parental authority will determine the concrete character of medical law and public policy. In particular, it will determine whether the default position should be that of presuming that minors over the age of 14 do or do not possess decisional capacity equivalent to that of adults. Where one places the burden of proof will also turn on empirical data regarding the contribution of authoritative, even authoritarian, parenting to the successful maturation of minors into adults, for this will give a further indication of the importance of parental involvement. This issue of The Journal of Medicine and Philosophy opens with a paper from a psychologist who has been involved in developing briefs to the Supreme Court (Miller, 2012) that have influenced holdings that recognized the diminished legal culpability of adolescents (Miller v. Alabama, 2012). Laurence Steinberg in his article “Does Recent Research on Adolescent Brain Development Inform the Mature Minor Doctrine?” argues that, because adolescents are less mature than adults, when making decisions characterized by emotional arousal and peer pressure as when committing crimes, culpability is diminished (Steinberg, 2013). However, Steinberg also argues that recent studies of the adolescent brain and of behavioral development do not undermine the mature minor doctrine. Instead, the data indicate important ways in which the doctrine should be applied. First, Steinberg stresses the difference between adolescents and children, making plausible the old rule of 7’s (i.e., infants under 7 years, children 7–14, and adolescents over 14). He holds that adolescents in the right circumstances have decisional capacity equivalent to that of adults. Second, Steinberg takes the view that healthcare practitioners can enhance the ability of adolescents to make informed and knowledgeable decisions by being involved in the decisional process and by creating a context that circumscribes impulsive decision making (i.e., decision making that does not take into account long-term as well as short-term consequences of alternative courses of action). Thus, given peer pressure and circumstances in which impulsive decision making is not counteracted, adolescents lack adult decisional capacity and, therefore, adult culpability with regard to criminal acts. However, Steinberg argues that in the context of most medical decision making, adverse influences on the decisional capacity of minors can be counteracted so that adolescents can function as mature minors. In contrast, Evan Wilhelms and Valerie Reyna advance grounds to restrict the mature minor exception to quasi-emergency situations. They come to this decision because they find a more fundamental qualitative difference between adolescent and adult decision making. In “Fuzzy Trace Theory and Medical Decisions by Minors: Differences in Reasoning between Adolescents and Adults,” they report data that show that it is not merely impulsive behavior or even the failure of adolescents to take into account long-term as well as short-term consequences that makes adolescents bad decisionmakers (Wilhelms and Reyna, 2013). More importantly, it is their failure to grasp the gist of what is at stake in making a decision. Wilhelms and Reyna develop their argument through engaging “fuzzy trace theory”: Fuzzy trace theory (FTT) is a comprehensive theory of reasoning, judgment, and decision-making that integrates the prior standard reactive model with documented cognitive developmental differences to explain risk-taking behavior in adolescents. . . . According to FTT, deliberative, analytic reasoning and impulsive reactivity are distinct routes to risk taking, and, surprisingly, the former accounts for a great deal of risk-taking in adolescence. . . . Thus, adolescents are not just more emotional and impulsive than adults; their understanding of the gist of such decisions is not mature. (Wilhelms and Reyna, 2013, 272) The point is that it is “gist processing” that appears to be a necessary condition for mature decision making. Even when adolescents can intellectually analyze and lay out long-term as well as short-term consequences of their decisions, they still fail crucially to apprehend what is at stake in the decisions they face. Although adolescents are capable of encoding mathematical probabilities about risks and rewards, they still do not have the mature appreciation for the meaning of those risks and rewards, and their implications for their future adult lives. Put another way, it could be said that some adolescents know “the price of everything but the value of nothing.” (Wilhelms and Reyna, 2013, 279) Adolescents, in short, differ qualitatively from adult decisionmakers, so that Wilhelms and Reyna “conclude that circumstances in which adolescents are equivalent to consenting adults are unusual” (Wilhelms and Reyna, 2013, 270). They, therefore, recommend that “if [mature minor] exception is necessary for an emergency situation, the physician or medical experts involved should emphasize the bottom-line gist of risks involved during the process of consent or deciding on treatment options” (Wilhelms and Reyna, 2013, 279). The next essay in this issue, “The Mature Minor: Some Critical Psychological Reflections on the Empirical Bases” (Partridge, 2013), takes a position closer to that of Wilhelms and Reyna than to that of Steinberg. This essay concludes that there are grounds to bring into serious question the advisability of exempting minors from parental authority and guidance, save in emergency or quasi-emergency circumstances, given the qualitatively different character of adolescent decision making. These differences are not just due to differences in decisional behavior, such that adolescents tend more than adults to be impulsive decisionmakers, who often inadequately take account of the long-term consequences of their choices and who very frequently fail fully to apprehend the significance of near- and long-range consequences of decisions. In addition, the brains of adolescents are simply different from those of adults. One can through brain imaging literally see the differences. When adolescents make decisions, there is a greater engagement of limbic structures with less of an engagement of prefrontal cortical areas in comparison with adults making the same decisions. These data justify a strong but rebuttable presumption that, in general, minors lack mature decisional abilities, and that they would benefit from the guidance of those who know them well, in particular parents and guardians. A second body of data is also relevant, which shows the importance of effective parenting for the maturation of adolescents (Baumrind, 1989; Adaljarnardottir and Hafsteinsson, 2001; Huver et al., 2007). These findings indicate that one should be more concerned about false positives than false negative determinations of decisional capacity, given the benefits from parental involvement. Here matters are complex, in that the character of the family in the West is changing, with some 41% of children in the United States now being born outside of a traditional marriage (Martin et al., 2011, 2). Any actual approach to adolescents will need frankly to take into account their social context. The papers by Rachelle Barina and Jeffrey Bishop, by Mark Cherry, and by Ana Iltis locate the examination of the mature minor exceptions more explicitly within moral and bioethical concerns. In their paper, “Maturing the Minor, Marginalizing the Family: On the Social Constitution of the Mature Minor, Sexual Politics, and the Family,” Barina and Bishop address the historic and social context in which the formation of the mature minor doctrine develops, and in doing so illustrate the adversarial nature between the goals of the state and the contextual role played by families. Barina and Bishop embed their analysis of this development within a “phenomenological account of the care of the body in the family” and its subsequent application to reproductive health policy. They argue that, legally and medically, the concept of the mature minor does not actually depend upon the notion of maturity. Instead, the invocation of the doctrine of “mature minor” in the context of adolescent reproductive health has become a means to assert better health outcomes for the state. A careful consideration of maturity is unnecessary because contraception is an unqualified good in the case of every teen. Socially destructive and expensive health risks, more than the adolescent’s mature ability to understand and appreciate health information, merit the provision of reproductive health services without parental consent. (Barina and Bishop, 2013, 306) They also argue that the focus on public health to the exclusion of all other factors creates a clear conflict between state interests and parental authority. In so doing, the state is interrupting the conveyance of “the moral, social, and existential goods that belong to the particular family within which the child’s life-world is formed.” (Barina and Bishop, 2013, 309) Mark Cherry takes a stronger stand against the universal application of the mature minor doctrine in his paper “Ignoring the Data and Endangering Children: Why the Mature Minor Standard for Medical Decision Making Must Be Abandoned.” Unlike Steinberg who is able to reconcile the apparent differences in the medical and legal understanding of adolescent decision making with the neuropsychological evidence, Cherry contends clearly that the mature minor doctrine must be abandoned. In his analysis of the neuropsychological data, Cherry argues in support of the Supreme Court’s interpretation that adolescents make decisions qualitatively differently than adults. He writes: Current trends in pediatric decision making in support of the “mature minor” standard constitute moral and legal movement in direct opposite to what the science bearing on the matter demonstrates to be reasonable and the United States Supreme Court judges to be constitutionally appropriate. To put the matter bluntly, the “mature minor” standard for medical decision making ignores the scientific data and endangers children. (Cherry, 2013, 326) Ana Iltis examines both the decisional capacity of adolescents as well as the authority of parents over their children and the implications this has for adolescents giving consent. In her paper, “Parents, Adolescence, and Consent for Research Participation,” Iltis (2013) concludes that adolescents often do not possess a decisional capacity that will allow sufficient appreciation of information so as to be able to give valid consent for participation in research, and indeed for consent to medical treatment generally. In part, she embraces this conclusion because of data that show that, although adolescents understand the information relevant to making a treatment decision, their appreciation or evaluation of reasonable and foreseeable consequences is usually different from that of adults. Here, Wilhelms and Reyna’s reflections through fuzzy trace theory regarding the importance of getting the gist of what is at stake in a decision may be crucial. Iltis advances as well a second claim, a moral one, that minors even if they are mature are still children, and that there are, therefore, strong principled arguments for recognizing parents as being in authority to guide their children. We confront again the complexity of the issues at stake in assessing the status of the mature minor. In controversy are not merely the facts of the matter regarding how adolescents make decisions but also moral and social issues, namely, how we should regard the relationship between children and their parents. The intersection of these two areas of contention compounds the disputes in pediatric bioethics regarding the status of children. The articles in this issue are not unanimous on any point. However, all the authors appear to concur that judgments regarding the decisional capacity of an adolescent will depend on the particular adolescent and the particular context. There are clearly significant variations among persons with respect to decisional capacity. In addition, persons do not take a uniform journey from infancy to mature adulthood. Some persons become mature decisionmakers much earlier than others, while others appear never fully to achieve this status. Sorting matters out will in part require further philosophical reflection on what we want to mean by mature decisionmakers. That is, we will need to reflect on the moral issue as to what characterizes a person who has decisional capacity. Bernat, Culver, and Gert (1981) in reflecting on the definition of death developed a distinction among concepts of death, criteria for death, and tests for death. A concept of death for them is a philosophical issue, a view of what it means to be dead (e.g., loss of personhood). A criterion of death involves an intersection of philosophy and physiology (e.g., a neurological criterion such as the irreversible cessation of all functions of the brain as an indicator of death). Tests for death are the actual diagnostic determinations employed by physicians in declaring death. We will likely need to fashion similar distinctions with regard to competency, so as to be clearer as to what should be compassed by the concept of decisional capacity as well as what should serve as criteria for crucial elements of decisional capacity such as, perhaps, “gist-processing.” We will need as far as possible to determine the necessary and sufficient capacities that can serve as criteria for competent decision making. Then we need to determine what one should look for when making the judgment that a person under the age of 18 but over the age of 14 has decisional capacity. These essays point the way to further work.

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Ethics and Legal Issues in Pediatric Healthcare
Child and Adolescent Health
Child and Adolescent Psychosocial and Emotional Development
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Jun 16, 2008·SSRN Electronic Journal
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Those Privileges Long Recognized: Termination of Parental Rights Law, the Family Integrity Right and the Private Culture of Family

Joan Catherine Bohl

The first section of this paper discusses the scope and nature of the familial rights at stake in a termination of parental rights action. This section demonstrates that familial rights are defined as relational rights throughout our Anglo American tradition and constitutional jurisprudence and thus protect the relationship between the parent and child rather than an individual right of either. The second section of this paper establishes that life is a which, like culture viewed on any scale, shares learned behavior among members and functions as a means of protecting the group and insuring the continuity of its values, beliefs and organization. This section describes United States Supreme Court decisions which expressly protect the familial activities constituting and reflecting the private culture of the family. In view of the United States Supreme Court's recognitions of private culture, this second section concludes by suggesting that a family's private culture is entitled to the same deference accorded to larger cultural groups in other contexts. Taken together, then, the first and second section stand for the proposition that the proper inquiry is never whether removal from parental custody is in the child's best interest but rather whether a family exists, in the constitutional sense. If a exists, the inquiry must end. There should be no inquiry into whether the child's emotional needs are fully met, whether some future likelihood of harm exists or whether it would be better for the child to spend some time with grandmother, or indeed with anyone else. The state is neither permitted to evaluate the of a functioning nor, as an impersonal political institution is it qualified to do so.The third section of this paper provides a selective overview of termination of parental right statutes focusing on recent trends which have increased the incidence of both procedural and substantive due process problems within the statutes. This third section also describes Congress' own, quite different response to some of the criticism of child welfare legislation, a response which is embodied in the Indian Child Welfare Act (hereinafter ICWA). The third section concludes by proposing a more constitutionally acceptable approach to child welfare legislation utilizing the general principles embodied in the ICWA.The fourth and final section of this paper argues that the appropriate burden of proof to place on state actions to remove a child from his or her parents' custody or to terminate parental rights to the child is proof beyond a reasonable doubt. The ICWA requires proof beyond a reasonable doubt in termination of parental rights actions falling within its jurisdiction; the principles Congress endorsed in enacting the ICWA should be applied to all families. This paper reaches this conclusion despite Santosky v. Kramer's apparently different resolution of the issue of the burden of proof required in parental termination actions.

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Legal Systems and Judicial Processes
Ethics and Legal Issues in Pediatric Healthcare
Multicultural Socio-Legal Studies
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