Adolescent Medical Decisionmaking Rights: Reconciling Medicine and Law.

Dennis Lindberg came into his aunt's care when he was in the 4th grade because his parents struggled with drug addiction and could not provide for him. At thirteen, he was baptized in his aunt's faith as a Jehovah's Witness. Just days after he turned fourteen, on November 6, he was diagnosed with acute lymphoblastic leukemia.The prognosis was that Dennis had a 75% chance of cure with standard oncology treatment. Consistent with the requirements of his new faith, however, Dennis told his doctors, "I do not want to be treated if the requirement is that I would have to take a blood transfusion." His aunt, whose custodial rights seem not to have included medical decisionmaking, was adamant that "[t]his is Dennis's decision."The hospital social worker assigned to Dennis's case assured his aunt that "having just turned 14, [he] could be considered mature enough to make his own decisions." But hospital psychologists declined to evaluate Dennis's maturity because they did "not have the tools for such an assessment." Established hospital policy described the failure to provide a minor with necessary, life-saving care as medical neglect. Hospital ethicists advised that Dennis's autonomy interests were outweighed by the benefits associated with treatment. And, standard oncology practice norms are that doctors should push back against minors' lifesaving treatment refusals. Still, Dennis's doctor agreed with his social worker and aunt, saying, "We owe respect to a 14-year-old[.]" In this view, he was supported by colleagues on staff and by hospital counsel.A county judge got the case only at the eleventh hour, on an emergency motion filed by Dennis's parents and Child Protective Services for a declaration of dependency and to compel the necessary transfusion. Although Dennis was degrading rapidly, his doctor testified that if a transfusion were ordered that day, Dennis still had a 70% chance of survival. The judge had no background in the applicable law and no time to research the issues; nevertheless, he denied the motion concluding, "It is time to do what Dennis has decided." "Seven hours later, at 6 p.m., on Nov. 28, Dennis died."1.

Mila Blooms: A Mobile Phone Application and Behavioral Intervention for Promoting Physical Activity and a Healthy Diet Among Adolescent Survivors of Childhood Cancer.

Objectives: Smartphone applications ("apps") can be used to promote health behavior change and expand the reach of behavioral interventions. To date, only a few existing apps have been developed for health promotion among adolescent survivors of childhood cancer. To address this gap, we developed an app-based intervention, using game design characteristics, theory-based behavioral strategies, and assistance from a health coach to motivate health behavior change for adolescent survivors of childhood cancer. This article describes the development and initial feasibility evaluation of the intervention. Methods: Using a theoretical framework and an extensive formative process, we developed an app-based game ("Mila Blooms") that promotes healthy eating and physical activity among adolescent survivors of childhood cancer. A single-arm 8-week intervention, using this app-based game, with assistance from a health coach, was conducted among a sample of pediatric cancer survivors (n = 15) to evaluate its initial feasibility for promoting health behavior change. Results: Results from the feasibility evaluation were encouraging. The majority of enrolled participants were retained throughout the 8-week intervention (93.8%). Participant satisfaction feedback indicated positive experiences, related to ease of use and enjoyment of the app. Although there was little evidence for behavior change attributable to the app in this first stage of development, there was a solid demonstration of the viability and appeal of the game features, and there were no adverse side effects. Conclusions: Results provide insights into how gamification can be used to promote health behaviors through an app-based intervention. Mila Blooms holds promise for promoting health behavior change. Lessons learned from our experiences could be useful for the future development and implementation of app-based adolescent health interventions.

Can the Case Report Withstand Ethical Scrutiny?

Since antiquity, doctors have employed case reports as an essential and ongoing part in communicating information about patients and their diseases to their colleagues and, at times, to the wider, nonmedical world. Given how useful case reports have been, a legitimate and persuasive argument could be made to retain them in modern medical literature. But there is an emerging problem with case reports. As the ability to publish and disseminate the information contained in them has become easier, the capacity for individuals to maintain their privacy and restrict access to their personal information has become more strained, and it has become more difficult for doctors who tell clinical stories to respect the confidentiality of their patients while still communicating the pertinent details of their cases. Does the acknowledged educational and scientific value of (some) case reports justify the threat to personal privacy that may be entailed by the format itself?

Healthcare Rationing Cutoffs and Sorites Indeterminacy.

Rationing is an unavoidable mechanism for reining in healthcare costs. It entails establishing cutoff points that distinguish between what is and is not offered or available to patients. When the resource to be distributed is defined by vague and indeterminate terms such as "beneficial," "effective," or even "futile," the ability to draw meaningful boundary lines that are both ethically and medically sound is problematic. In this article, I draw a parallel between the challenges posed by this problem and the ancient Greek philosophical conundrum known as the "sorites paradox." I argue, like the paradox, that the dilemma is unsolvable by conventional means of logical analysis. However, I propose another approach that may offer a practical solution that could be applicable to real-life situations in which cutoffs must be decided (such as rationing).

When Religion and Medicine Clash: Non-beneficial Treatments and Hope for a Miracle.

Patient and family demands for the initiation or continuation of life-sustaining medically non-beneficial treatments continues to be a major issue. This is especially relevant in intensive care units, but is also a challenge in other settings, most notably with cardiopulmonary resuscitation. Differences of opinion between physicians and patients/families about what are appropriate interventions in specific clinical situations are often fraught with highly strained emotions, and perhaps none more so when the family bases their desires on religious belief. In this essay, I discuss non-beneficial treatments in light of these sorts of disputes, when there is a clash between the nominally secular world of fact- and evidence-based medicine and the faith-based world of hope for a miraculous cure. I ask the question whether religious belief can justify providing treatment that has either no or a vanishly small chance of restoring meaningful function. I conclude that non-beneficial therapy by its very definition cannot be helpful, and indeed is often harmful, to patients and hence cannot be justified no matter what the source or kind of reasons used to support its use. Therefore, doctors may legitimately refuse to provide such treatments, so long as they do so for acceptable clinical reasons. They must also offer alternatives, including second (and third) opinions, as well the option of transferring the care of the patient to a more accommodating physician or institution.

Transplants for non-lethal conditions: a case against hand transplantation in minors.

Human allografts for life-threatening organ failure have been demonstrated to be lifesaving and are now considered to be standard of care for many conditions. Transplantation of non-vital anatomic body parts has also been accomplished. Hand transplantation after limb loss in adults has been shown to offer some promising benefits in both functional and psychological measures in preliminary studies. It has been suggested to expand eligibility criteria to include minors, with one such operation having already been performed. With this in mind, we examine the current state of hand transplantation research in the context of available alternatives. We examine the ethics of carrying out these operations in minors, including under the protections of clinical research. We argue that children should not be considered for this surgery due to the substantial risks of immunosuppressive medication, the likelihood that the graft will need to be replaced during the patient's lifetime and the lack of significant compensatory advantages over modern prosthetics.

Resolving Ethical Dilemmas in a Tertiary Care Veterinary Specialty Hospital: Adaptation of the Human Clinical Consultation Committee Model.

Technological advances in veterinary medicine have produced considerable progress in the diagnosis and treatment of numerous diseases in animals. At the same time, veterinarians, veterinary technicians, and owners of animals face increasingly complex situations that raise questions about goals of care and correct or reasonable courses of action. These dilemmas are frequently controversial and can generate conflicts between clients and health care providers. In many ways they resemble the ethical challenges confronted by human medicine and that spawned the creation of clinical ethics committees as a mechanism to analyze, discuss, and resolve disagreements. The staff of the North Carolina State University Veterinary Hospital, a specialty academic teaching institution, wanted to investigate whether similar success could be achieved in the tertiary care veterinary setting. We discuss the background and rationale for this method, as well as the approach that was taken to create a clinical ethics committee.

Discriminatory Demands by Patients.

Most of us working in health care are concerned-perhaps even appalled-when patients make demands for doctors or nurses or other caregivers that accord with their bigoted sentiments. Even though there may be some reasons to believe that matching certain characteristics of doctors with those of their patients (whether the latter ask for them or not) may produce both more patient satisfaction and even some health benefits, how does one tease apart or distinguish requests that are potentially beneficial from those we find abhorrent? What facts might make it acceptable for an African American patient to request an African American doctor or a Chinese Mandarin-speaking patient to request a physician who is fluent in Mandarin and is also of Chinese ethnicity? At the same time, why do we recoil or find it objectionable that the father of the baby under Tonya Battle's care in Michigan might want a nurse caring for his child with whom he identifies ethnically, or racially or religiously, or based on any other superficial trait(s) that we use to characterize people?

Compulsory Organ Retrieval: Morally, But Not Socially, Justified.

The number of patients with organ failure who could potentially benefit from transplantation continues to exceed the available supply of organs. Despite numerous efforts to increase the number of donors, there remains an enormous mismatch between demand and supply. Large numbers of people still die with potentially transplantable organs remaining in situ, most frequently as a result of family objections. I argue that there are no persuasive moral arguments against mandated organ retrieval from all dead individuals who meet clinical criteria. However, because of continuing endemic prejudice in United States society and its healthcare system and the distrust this engenders, I conclude that proceeding with a policy of compulsory organ retrieval, even if morally unobjectionable, would not be warranted.

Do Pediatric Patients Have a Right to Know?

In Western medicine, a central component of respecting a person's ability to make decisions governing what happens to herself is ensuring that she is provided with sufficient relevant information to make a rational choice. For patients who lack the cognitive capacity to do so because of either inborn or acquired deficits or because of youth, the extent to which they can participate in medical decisions is variable. Minors present a unique challenge, as their ability to understand and process information usually increases with age. The case presented here poses special problems because of the parents' desire to shield their child from certain information deemed important by his physicians. I consider whether minors, particularly older ones, have a right to know that supersedes their parents' wishes.

Who Should Ration?

A principal component of physician decision making is judging what interventions are clinically appropriate. Due to the inexorable and steady increase of health care costs in the US, physicians are constantly being urged to exercise judicious financial stewardship with due regard for the financial implications of what they prescribe. When applied on a case-by-case basis, this otherwise reasonable approach can lead to either inadvertent or overt and arbitrary restriction of interventions for some patients rather than others on the basis of clinically irrelevant characteristics such as ethnicity, gender, age, or skin color. In the absence of systemwide reform in which the resources saved from one patient or group of patients are reallocated for the benefit of others, prudence is urged in the application of "bedside rationing."

Irrational Exuberance: Cardiopulmonary Resuscitation as Fetish.

The Institute of Medicine and the American Heart Association have issued a "call to action" to expand the performance of cardiopulmonary resuscitation (CPR) in response to out-of-hospital cardiac arrest. Widespread advertising campaigns have been created to encourage more members of the lay public to undergo training in the technique of closed-chest compression-only CPR, based upon extolling the virtues of rapid initiation of resuscitation, untempered by information about the often distressing outcomes, and hailing the "improved" results when nonprofessional bystanders are involved. We describe this misrepresentation of CPR as a highly effective treatment as the fetishization of this valuable, but often inappropriately used, therapy. We propose that the medical profession has an ethical duty to inform the public through education campaigns about the procedure's limitations in the out-of-hospital setting and the narrow clinical indications for which it has been demonstrated to have a reasonable probability of producing favorable outcomes.

Brain death determination: the imperative for policy and legal initiatives in Sub-Saharan Africa.

The concept of brain death (BD), defined as irreversible loss of function of the brain including the brainstem, is accepted in the medical literature and in legislative policy worldwide. However, in most of Sub-Saharan Africa (SSA) there are no legal guidelines regarding BD. Hypothetical scenarios based on our collective experience are presented which underscore the consequences of the absence of BD policies in resource-limited countries (RLCs). Barriers to the development of BD laws exist in an RLC such as Kenya. Cultural, ethnic, and religious diversity creates a complex perspective about death challenging the development of uniform guidelines for BD. The history of the medical legal process in the USA provides a potential way forward. Uniform guidelines for legislation at the state level included special consideration for ethnic or religious preferences in specific states. In SSA, medical and social consensus on the definition of BD is a prerequisite for the development BD legislation. Legislative policy will (1) limit prolonged and futile interventions; (2) mitigate the suffering of families; (3) standardise clinical practice; and (4) facilitate better allocation of scarce critical care resources in RLCs. There is a clear-cut need for these policies, and previous successful policies can serve to guide these efforts.

Licensing Surrogate Decision-Makers.

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people (children). In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates' generally unchallenged power should be reconsidered.