Most bioethicists and professional medical societies condemn the practice of ?slow codes.? The American College of Physicians ethics manual states, ?Because it is deceptive, physicians or nurses should not perform half-hearted resuscitation efforts (?slow codes?).? A leading textbook calls slow codes ?dishonest, crass dissimulation, and unethical.? A medical sociologist describes them as ?deplorable, dishonest and inconsistent with established ethical principles.? Nevertheless, we believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely (...) to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, we argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual. (shrink)
The growth of managed care was accompanied by concern about the impact that changes in health care organization would have on the doctor-patient relationship. We now are in a “post-managed care era,” where some of these changes in health care delivery have come to pass while others have not. A re-examination of the DPR in this setting suggests some surprising results. Rather than posing a new and unprecedented threat, managed care was simply the most recent of numerous strains on the (...) DPR that have occurred throughout the century. These strains are a constant, inevitable consequence of the varying needs and concerns of patient and physicians as they seek to balance their desires for a certain type of DPR with their simultaneous desire for other aspects of care such as lower costs, greater technological sophistication, and improved outcomes. (shrink)
Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal (...) care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (shrink)
Changes in healthcare financing increasingly rely upon patient cost-sharing to control escalating healthcare expenditures. These changes raise new challenges for physicians that are different from those that arose either under managed care or traditional indemnity insurance. Historically, there have been two distinct bases for arguing that physicians should not consider costs in their clinical decisions?an ?aspirational ethic? that exhorts physicians to treat all patients the same regardless of their ability to pay, and an ?agency ethic? that calls on physicians to (...) be trustworthy advisors to their patients. In the setting of greater patient cost-sharing, physicians' aspiration and agency roles increasingly conflict. Satisfactorily navigating the new terrain of consumer-driven healthcare requires physicians to consider these two roles and how they can best be reconciled so as to maximize quality of care while respecting the heterogeneity of patients' financial resources and willingness to pay. (shrink)
Dominic Wilkinson suggests that one of Schubert’s songs has relevance for neonatologists today. In the song, Schubert suggests that death sometimes comes as a friend. Wilkinson ponders whether the song has a message for doctors and parents, who sometimes struggle to figure out whether death is an enemy or a friend to a dying baby. Wilkinson reflects on the case of baby ‘Hal’, who was born with serious cardiomyopathy. Hal’s parents and doctors disagree about whether to withdraw life-support. Through his (...) recreations of their discussions, Wilkinson shows how hard it is to confront—and maybe even welcome—death for a child. While adults often frame their own decision to forego life-sustaining treatment with thoughts that they have lived a good life, death in childhood can seem unfair because it robs the child of their opportunity to live a good or completed life. Much as we try, we cannot really imagine what a critically ill neonate experiences or desires. We have very little insight into Hal’s interests or subjective experience. Without direct access to the child’s experience, it is impossible to know whether, like an adult, a child would choose to allow death to occur. We cannot verify the claim that the child’s death was good in the sense that it was good for them. Wilkinson proposes that a prolonged dying process …. (shrink)
Written with poignancy and compassion, Do We Still Need Doctors? is a personal account from the front lines of the moral and political battles that are reshaping America's health care system. Using compelling firsthand experiences, clinical vignettes, and moral arguments, John D. Lantos, a pediatrician, asks whether, as we proceed with the redesign of our health care system, doctors will -- or should -- continue to fulfill the roles and responsibilities that they have in the past. Interspersing moving personal stories (...) of his young patients suffering from AIDS, cancer, and other chronic or terminal illnesses with his own stirring dilemmas of truth telling, creative navigation of HMO bureaucracy, and reflections on the identity crisis of medical education, Dr. Lantos reveals how changes in out health care system and new technologies are fostering new ways of understanding and responding to illness. He taps into the public's sense of wanting doctors and hospitals to do something other than what they do now and the frustrating disagreement about what they should do in the future. (shrink)
A recent American Academy of Pediatrics (AAP) clinical report states that it is an acceptable option for pediatric care clinicians to dismiss families who refuse vaccines. This is a clear shift in guidance from the AAP, which previously advised clinicians to “endeavor not to discharge” patients solely because of parental vaccine refusal. While this new policy might be interpreted as encouraging or recommending dismissal of vaccine-refusing families, it instead expresses tolerance for diverse professional approaches. This is unlike the earlier guidance, (...) which promoted a unified response to vaccine refusal. In fact, the resolution (which was presented at the AAP’s Annual Leadership Forum) that led to this clinical report also calls on the AAP “to continue to support pediatricians who continue to provide health care to children of parents who refuse to immunize their children.” However, the shift toward embracing dismissal as an acceptable response to vaccine refusal may erode professional solidarity. Pediatricians are clearly divided on this question; most do not dismiss vaccine-refusing families. By declaring that dismissal is an acceptable option, the AAP has sanctioned a practice that may be unfair to the many clinicians who do not dismiss these families. Clinicians who adopt a policy of dismissal toward families who refuse vaccines might impose burdens on colleagues who remain willing to offer care to those families, and their actions might show insufficient commitment to the efforts of their profession to promote health for all children. (shrink)
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These (...) policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial. (shrink)
There is a debate at the highest levels of government about how to classify the risks of research studies that evaluate therapies that are in widespread use. Should the risks of those therapies be considered as risks of research that is designed to evaluate those therapies? Or not? The Common Rule states, “In evaluating risks and benefits, the IRB should consider only those risks and benefits that may result from the research.” ). By contrast, the Office of Human Research Protections, (...) in a proposed “guidance” states, “The reasonably foreseeable risks of research include already-identified risks of the standards of care being evaluated as a purpose of the research.”.In this paper, I argue that the Common Rule got it right and OHRP got it wrong. When treatments are in widespread use, the risks of those treatments are ever-present for all patients. By enrolling in formal studies that use rigorous methods to compare one treatment with another and that carefully monitor outcomes and adverse events, patients are protected from the risks of idiosyncratic practice variation. Their risks are decreased, rather than increased.If OHRP's approach becomes the law of the land, patients will be misinformed about the relative risks of treatment and research in ways that undermine autonomy rather than promoting it and that make truly informed consent impossible. (shrink)
Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining interventions to babies with these serious conditions. On one side of the debate are those who argue that there is no point in providing invasive, painful, and expensive procedures when the only outcomes are either early death or survival with severe cognitive impairment. (...) Others suggest that, although mortality is high and cognitive impairment universal, babies with these conditions have an acceptable quality of life. In this paper, we will discuss both points of view. We will review the ways in which these conditions are portrayed in pediatrics textbooks and on social media sites that offer support to parents. We will then suggest an appropriate way to deal with clinical decisions for babies with these trisomies. (shrink)
Neonatal intensive care units (NICUs) and medical intensive care units (MICUs) are both very expensive. The cost-effectiveness of NICUs has been extensively evaluated, as has the long-term outcomes of subpopulations of NICU patients. NICU treatment is among the most cost-effective of high-tech interventions. And most patients do well. There are fewer evaluations of cost-effectiveness in the MICU and almost no long-term outcome studies. Policymakers who scrutinize expensive high-tech interventions would do well to study the examples found in the NICU.
Providing care for a baby born at 24 weeks of gestation in a neonatal intensive care unit is one of the most expensive medical treatments in the United States today. The cost can easily run over $300,000 for one baby. Furthermore, many extremely premature babies who survive are left with chronic diseases or disabilities that require further medical expenses and other specialized services throughout childhood or throughout life. When all these expenditures are totaled up, it can seem that neonatal intensive (...) care is just not worth it.Concerns about the cost-effectiveness of NICUs have led to persistent critical scrutiny of these specialized units by physicians, economists, and epidemiologists. These analysts have examined NICUs and the patients in them in order to determine whether there are subpopulations of babies for whom neonatal intensive care is so demonstrably ineffective or so costly that it should not be provided. Such examinations have been carried out in many different countries, at many times over the last 30 years, and have analyzed outcomes for babies by gestational age, birthweight, and illness severity. (shrink)
What are we to make of Henrietta Lacks? After dying at a young age more than half a century ago, she has now become immortal twice—once biologically, and once culturally.She was first immortalized when cells from her cervical biopsy were cultured and became the first immortal cell line. The idea that this made Lacks herself immortal illustrates the dangerous temptations of genetic reductionism and literary license. Such literary license is illustrated by the title of Rebecca Skloot’s remarkable 2011 bestselling book (...) about Lacks and her cells. Skloot wrote a treatise that is at once a detective novel, an analysis of the conundrums of research ethics, a call for health system reform, and an exploration of racism in... (shrink)
Background While prenatal surgery historically was performed exclusively for lethal conditions, today intrauterine surgery is also performed to decrease postnatal disabilities for non-lethal conditions. We sought to describe physicians' attitudes about prenatal surgery for lethal and non-lethal conditions and to elucidate characteristics associated with these attitudes. Methods Survey of 1200 paediatric surgeons, neonatologists and maternal–fetal medicine specialists. Results Of 1176 eligible physicians, 670 responded. In the setting of a lethal condition for which prenatal surgery would likely result in the child (...) surviving with a severe disability, most respondents either disagreed or strongly disagreed that they would recommend the surgery. Male physicians were twice as likely to recommend surgery for the lethal condition, as were physicians who believe that abortion is morally wrong. Older physicians were less likely to recommend surgery. For non-lethal conditions, most respondents agreed that they would recommend prenatal surgery, even if the surgery increases the risk of prematurity or fetal death. Compared with MFMs, surgeons were less likely to recommend such surgery, as were physicians not affiliated with a fetal centre, and physicians who were religious. Conclusion Physician’s attitudes about prenatal surgery relate to physicians’ beliefs about disability as well as demographic, cultural and religious characteristics. Given the variety of views, parents are likely to receive different recommendations from their doctors about the preferable treatment choice. (shrink)
Aggressive therapies and the manipulation of life are now commonly applied to children, often including neonates and children who cannot express their consent. This text discusses a range of bioethical dilemmas concerning children and medicine.
Parents respond to the death of a child in very different ways. Some parents may be violent or angry, some sad and tearful, some quiet and withdrawn, and some frankly delusional. We present a case in which a father’s reaction to his daughter’s death is a desire to protect his wife from the stressful information. The wife is in the second trimester of a high-risk pregnancy and so is particularly fragile. We asked pediatricians and bioethicists to discuss the ways in (...) which they might respond to the father’s understandable but troubling request. -/- The death of a young child is one of the most stressful events that can happen to parents. The stress of such a loss is compounded if the parents are in a foreign country, far from home, and without a network of family and friends to provide social support. The stress may be more difficult to deal with if the parents have acute health problems of their own. In this month’s “Ethics Rounds,” we present a case in which a father whose daughter died requested that the doctors delay telling his wife. His reason: She is pregnant, in the second trimester, and on bed rest because of preterm labor. He does not want to add to her stress. We asked both pediatricians and bioethicists to respond to this request. (shrink)
Physicians have special professional obligations to respond to medical emergencies. A bioterrorism attack would be a medical emergency. Thus, it seems that physicians would have an obligation to respond to a bioterrorist attack. However, the scope of those obligations, and their limits, are vexed topics. General rules may be comforting but the details and nuances of particular situations will always be relevant.
In complex societies, there will always be situations in which an individual's deeply held beliefs conflict with the collective norms of the society. When only one individual challenges those norms, the norms generally hold. When challenges come from many individuals, the norms themselves may change. The tolerance for different beliefs will depend upon the political structure of the society and the specific beliefs that are being challenged.The Greek tragedy Antigone is an exploration of the choices that rulers can make regarding (...) such conflicts. They can either tolerate the unpopular and subversive views of an individual or punish the individual in a way that attempts to uphold the existing rules, bolster the... (shrink)
There is a moment in The Immortal Life of Henrietta Lacks that brought tears to my eyes. Henrietta Lacks is the woman whose cervical tumor gave rise to a cell line—brand named HeLa—that became quite useful in many important lines of biomedical research. When the book’s author, Rebecca Skloot, tracks down Lacks’s descendents in a Baltimore ghetto, they are not doing well. Zakariyya, the youngest of her children, has had the toughest life. He was born after his mother’s cancer was (...) already widespread, and she died shortly after his birth. He has drifted in and out of the military and in and out of jail. A moody and violent man, he once killed a man over a girl by stabbing him in the chest with a kitchen knife. Skloot .. (shrink)