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.

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.

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.

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.

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.

Caring for the suffering: meeting the Ebola crisis responsibly.

The current Ebola virus epidemic in Western Africa appears to be spiraling out of control. The worst-case projections suggested that the unchecked spread could result in almost 1.4 million cases by the end of January 2015 with a case fatality rate of at least 50%. The United States and European nations have begun to respond in earnest with promises of supplies, isolation beds, and trained health care personnel in an effort to contain the epidemic and care for the sick. However, there is neither a vaccine nor specific treatment for Ebola infection, and therapy is ideally centered on supportive care. I have previously argued that the provision of palliative care is obligatory during an overwhelming health catastrophe, notably pandemic influenza. Since affected Ebola patients have best outcomes with technologically advanced intensive care--resources in scarce supply in the area--I suggest that the only acceptable approach to large numbers of very sick, dying, and suffering Ebola patients who overwhelm the resources available to successfully manage them is effective palliative care. However, this could hasten death in this vulnerable population and hence, while ethically and medically justifiable, is not without social risk.

In defense of (some) altered standards of care for Ebola infections in developed countries.

The current outbreak of Ebola virus infection in West Africa continues to spread. Several patients have now been treated in the United States and preparations are being made for more. Because of the strict isolation required for their care, questions have been raised about what diagnostic and therapeutic interventions should be available. I discuss the ethical challenges associated with caring for patients in strict isolation and personnel wearing bulky protective gear with reduced dexterity and flexibility, the limitations this may place on available treatments and the permissibility of consequent departures from the standards of care. Restricting access to some interventions such as surgery requiring an operating room, advanced imaging, etc. is reasonable due to concern for protecting other patients, visitors and staff. Cardiopulmonary resuscitation is a special case and the implications for withholding this intervention in situations where it may be desired is discussed, especially with respect to those patients who have suspected, but not proven, infection. These same restrictions are also considered under conditions where there are scarce resources and thus limited numbers of patients may receive care. While it is to be hoped that there is only limited and sporadic infection with Ebola virus in the US, careful thought must be given to the care of these patients under the unusual circumstances demanded by their isolation. I argue that an altered standard of care is reasonable and ethically acceptable under certain conditions.

Trilateral retinoblastoma in a patient with Peutz-Jeghers syndrome.

Germline loss of function mutations in tumor suppressor genes RB1 and LKB1/STK11 are associated with the autosomal dominant cancer predisposing syndromes familial retinoblastoma and Peutz-Jeghers syndrome (PJS), respectively. We present a rare case of a young woman with trilateral retinoblastoma diagnosed as an infant who survived and was then diagnosed with PJS as a teenager. There was no family history of either disorder. Analysis of the LKB1/STK11 gene sequence identified a germline frameshift mutation (c.107del) leading to a nonsense mutation near the N-terminus of the protein, confirming a clinical diagnosis of Peutz-Jeghers syndrome. Extensive RB1 gene analysis failed to detect germline mutations or deletions, and immunohistochemical analysis of her ocular tumors demonstrated nuclear staining of immunoreactive pRB. This result suggests that the RB1 gene is intact. We estimate the chance of trilateral retinoblastoma and PJS occurring in the same individual at approximately 1 in 134 billion live births, and we discuss the possibility that this case could be explained by a putative modifier of pRB action that is associated with the LKB1/STK11 pathway.

Institutional futility policies are inherently unfair.

For many years a debate has raged over what constitutes futile medical care, if patients have a right to demand what doctors label as futile, and whether physicians should be obliged to provide treatments that they think are inappropriate. More recently, the argument has shifted away from the difficult project of definitions, to outlining institutional policies and procedures that take a measured and patient-by-patient approach to deciding if an existing or desired intervention is futile. The prototype is the Texas Advance Directives Act, but similar procedures have been widely implemented both with and without the protection of the law. While this method has much to recommend it, there are inherent moral flaws that have not received as much discussion as warranted. Because these strategies adopt a semblance of procedural justice, it is assumed that the outcomes of such proceedings will be both correct and fair. In this paper, I argue that there are three main irremediable defects in the policy approach: there is the potential for arbitrary decision-making about futility in specific cases; there are structural, pre-ordained consequences for ethnic minorities who would be disproportionately affected by the use of these procedures; and the use of rationing justifications to support the use of these policies. These flaws detract so much from any benefit that could be derived that they make such strategies more harmful than helpful.

Unpredictable drug shortages: an ethical framework for short-term rationing in hospitals.

Periodic and unexpected shortages of drugs, biologics, and even medical devices have become commonplace in the United States. When shortages occur, hospitals and clinics need to decide how to ration their available stock. When such situations arise, institutions can choose from several different allocation schemes, such as first-come, first-served, a lottery, or a more rational and calculated approach. While the first two approaches sound reasonable at first glance, there are a number of problems associated with them, including the inability to make fine, individual patient-centered decisions. They also do not discriminate between what kinds of patients and what types of uses may be more deserving or reasonable than others. In this article I outline an ethically acceptable procedure for rationing drugs during a shortage in which demand outstrips supply.

I'll be a monkey's uncle: a moral challenge to human genetic enhancement research.

The potential for genetic engineering of enhancements to complex human traits has been the subject of vigorous debate for a number of years. Most of the discussion has centered on the possible moral consequences of pursuing enhancements, especially those that might affect complex behaviours and components of personality. Little has been written on the actual process of implementing this technology. This paper presents a 'thought experiment' about the likely form of final preclinical testing for a technology to enhance intelligence as a prototypical multiplex trait. The significance and the potential dangers of implementing enhancements in humans, especially to highly valued traits such as intelligence, would mandate a thorough programme of testing in animals, including non-human primates such as chimpanzees. The implications this would have for researchers, society and, most importantly, the animals themselves are discussed, and the paper concludes with a suggestion for a morally justifiable approach to resolve the tragic question of what to do with research animals who have a cognitive capacity that is close to that of humans.

Associations between leisure-time physical activity and health-related quality of life among adolescent and adult survivors of childhood cancers.

OBJECTIVE: Survivors of childhood cancer are at an increased risk for reduced quality of life (QOL), yet few studies have explored factors associated with improving health-related QOL (HRQOL) in this population. We thus explored the relationship between physical activity (PA) and HRQOL among survivors of childhood cancer. METHODS: A total of 215 survivors of childhood lymphoma, leukemia, and central nervous system cancers completed mailed surveys that elicited information regarding leisure-time PA (LTPA) measured in metabolic equivalents, HRQOL, and diagnostic and demographic factors. Correlations and adjusted regression models were used to explore the relationship between LTPA and HRQOL. RESULTS: In the total sample, modest, yet significant linear associations were observed between LTPA and overall HRQOL (beta=0.17, p<0.01), as well as each of the respective subscales (beta=0.11-0.23 and p's<0.05 to <0.001). Among adolescent survivors of childhood cancer, LTPA was significantly associated with overall HRQOL (beta=0.27), cancer worry (beta=0.36), cognitive function (beta=0.32), body appearance (beta=0.29), and social function (beta=0.27) (all p's<0.05). Among adult survivors of childhood cancer, LTPA was only significantly associated with physical function (beta=0.28, p<0.001). CONCLUSIONS: Significant associations exist between LTPA and HRQOL; however, the association was stronger and observed in more domains for adolescent survivors of childhood cancer. More research is needed to determine the antecedents and consequences of PA in this population.