In 2001, leaders with palliative care convened to discuss the standardization of palliative care and formed the National Consensus Project for Quality Palliative Care. In 2004, the National Consensus Project for Quality Palliative Care produced the first edition of Clinical Guidelines for Quality Palliative Care. The Guidelines were developed by leaders in the field who examined other national and international standards with the intent to promote consistent, accessible, comprehensive, optimal palliative care through the health care spectrum. Within the guidelines there (...) are eight domains to the provision of palliative care. This article focuses on the last, but very significant Domain 8—Ethical and Legal Aspects of Care. (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)

Five years ago, remarkable animal experiments on artificial womb technology (AWT) at Children’s Hospital of Philadelphia (CHOP) got us thinking about the ethical for premature babies. We recognized...

BackgroundPediatricians in developing countries face different ethical dilemmas than do doctors working in settings with more resources. There are very few studies from developing countries analyzing pediatricians’ knowledge and attitudes regarding the ethical dilemmas that arise in such settings. To address this gap, we explored the clinical ethical knowledge, attitude and experience of physicians who are working in the Department of Pediatrics and Child Health of St Paul’s Hospital Millennium Medical College, Addis Ababa, Ethiopia.Study populationAll pediatric resident doctors and pediatric (...) consultants who were working in the DPCH of SPHMMC in December, 2020.MethodA structured pretested self-administered questionnaire was distributed to all 79 of the residents and consultants in the department during the period December 15–27, 2020. The questionnaire assessed the knowledge, attitude and experiences of the study participants regarding a variety of bioethical issues. Data were analyzed using SPSS version 20.0 for windows. The mean, median, standard deviation, and interquartile range of respondents’ scores were determined and compared using Fisher’s exact test.ResultA total of 59/79 physicians completed the questionnaire. The mean age of the participants was 30.7 ± 4.1 years. Thirty six were female. At the time of data collection, more than half served < 5 years as a physician. The mean ethics knowledge score of the respondents was 12.3 ± 2.34 out of 23 knowledge questions. The lowest and highest knowledge scores were 8 and 19 respectively. Scores were highest on questions about confidentiality and lowest on questions about genetic testing and diagnosis. Only 13 physicians agreed with the practice of children should never be treated without consent of the parent. ConclusionTertiary care pediatricians at one hospital in Ethiopia lack knowledge about current standards in bioethics. There is a need for more ethics education in this setting. (shrink)

In May 2019, the Vatican held a conference in Rome that focused on perinatal palliative care. In these troubled times, that would seem to be an arcane topic for the church to address. The speeches at the conference made it clear why the topic was timely and relevant. Speakers included scientists, clinicians, theologians, and advocates for a humane approach to clinical decisions in situations of prenatal diagnosis of fetal anomalies. The Roman Catholic Church, like the rest of us who work (...) in pediatrics or maternal-fetal medicine, is trying to figure out the ethical implications of the technological advances that have taken place in prenatal diagnosis and fetal therapy.Prenatal care changed dramatically in the... (shrink)

Spceial Care explores the moral and legal issues in neonatal intensive care. It is an urgently needed entry in the current discussions of treatment for badly damaged babies.

There are some paradoxes in the way doctors and patients make medical decisions today. Today's patients are more empowered than were patients in the past. They have the right to see their medical records. The law requires doctors to obtain their informed consent for treatment. Patients are told about the options for treatment and the risks and benefits of each option. Their values and preferences are elucidated in order to guide the treatments that are provided.

A commentary on “Were There ‘Additional Foreseeable Risks’ in the SUPPORT Study?,” by Henry J. Silverman and Didier Dreyfuss; “SUPPORT: Risks, Harms, and Equipoise,” by Robert M. Nelson; “The Controversy over SUPPORT Continues and the Hyperbole Increases,” by Alan R. Fleischman; and “SUPPORT and Comparative Effectiveness Trials: What's at Stake?,” by Lois Shepherd, all in the January‐February 2015 issue.

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)

In this issue, Macklin and Natanson examine some of the controversies that arise in randomized clinical trials (RCTs). They are particularly concerned that researchers may misrepresent novel interv...

The ethical principles articulated in the Belmont Report and the regulatory oversight of research based on those principles seem to have served society well. Before Belmont, there were numerous egregious violations of research ethics. Since Belmont, there seem to be fewer—though good data are lacking.A central pillar of the Belmont framework is that a bright line must be drawn between medical practice and biomedical research. The Report stated that to qualify as practice, the following conditions must be satisfied: the purpose (...) of an intervention is to provide diagnosis, preventive treatment, or therapy; the intervention is designed solely to enhance the well-being of an individual... (shrink)

It used to be futile to try to save babies born at 23 weeks. It isn’t anymore. It used to be futile to try to keep patients with end-stage congestive heart failure alive. It isn’t anymore. Futility is a moving target. Thus, it is not surprising that doctors, patients, and families often disagree about which treatments are efficacious or futile, appropriate or inappropriate, obligatory or obligatorily withheld. The goalposts keep moving. Yesterday’s impossibility is today’s routine. Why should a patient believe (...) a doctor who says that treatment is futile, inappropriate, or likely to cause more harm than good? Could it just mean that the doctors are unwilling to try everything that is available? When... (shrink)

The Surfactant, Positive Pressure, and Oxygenation Randomized Trial (SUPPORT) has been the focal point of many different criticisms regarding the ethics of the study ever since publication of the trial's findings in 2010 and 2012. In this article, we focus on a concern that the technical design and implementation details of the study were ethically flawed. While the federal Office Human Research Protections focused on the consent form, rather than on the study design and implementation, OHRP's critiques of the consent (...) form reveal views about the study design and implementation that we believe are fundamentally flawed. These criticisms about the design and implementation of SUPPORT, if generalized, become relevant concerns about these aspects of many comparative effectiveness research studies.Our analytical approach will be to use SUPPORT as a prime example of comparative effectiveness research and show why it challenges some prevailing assumptions about the riskiness of research. We will address five aspects of the study design and implementation: 1) randomization, 2) treatment by protocol, 3) choice of endpoints, 4) lack of a “standard care” control group, and 5) the use of altered oximeters. Examining these aspects will allow us to answer two specific central questions. The first is a methodological question with ethical implications: was the study designed in such a way as to answer the primary study question? The second question is whether the study design added or decreased risk to the babies enrolled in the study compared to babies who were not in the study. (shrink)

I am currently caring for a child named Priscilla who is ventilator-dependent and whose care confronted me with questions of justice. Priscilla was born at the County Hospital after a normal pregnancy to a 17-year-old single mother. At birth, she was noted to have some dysmorphic features: widely spaced eyes, low-set ears, and a cleft palate. Her chest X-ray showed hypoplastic ribs and scapulae. Her chromosome studies were normal. Eventually, a diagnosis of a rare dwarfing syndrome campomelic dysplasia – was (...) made. (shrink)

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)

The dust-jacket photo of Eric Cassell portrays him as a magician. He wears a dark suit, a bow tie, and big dark-rimmed glasses. His head is tilted down; his forehead is massive; his eyes are intense. It is an interrogating look that is crucial to the central theme of his most recent books, The Nature of Healing: The Modern Practice of Healing and The Nature of Clinical Medicine: The Return of the Clinician.

It has become increasingly difficult to place a value on the work that doctors do. Yet fiscal pressures have lead to economic incentives for performing certain kinds work instead of others. So the question arises: what are the ethics and consequences of trying to objectively compare the many services physicians offer?

It is astoundingly difficult—and may not be desirable—to be rational about decisions to let our babies die. Parents in these situations are caught in a maelstrom of overpowering and often contradic...

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)

Henry K. Beecher’s famous 1966 article on ethically problematic medical research was a pivot point. It came at the end of two decades of soul-searching among researchers and philosophers. It ushered in an era of legislation and regulation to address the complex issues that had been extensively discussed by Beecher and others. That soul-searching began with the Nuremberg trials and the disturbing recognition of how far the Nazi doctors had strayed from professional ethical norms. It led, eventually, to the creation (...) of the system of oversight that we have today.During these years, there were heated arguments about what sort of research ought or ought not to be permitted and with what sort of oversight. Often... (shrink)

In current American medical practice, autonomy is assumed to be more valuable than human life: if a patient autonomously refuses lifesaving treatment, the doctors are supposed to let him die. In this paper we discuss two values that might be at stake in such clinical contexts. Usually, we hear only of autonomy and best interests. However, here, autonomy is ambiguous between two concepts—concepts that are tied to different values and to different philosophical traditions. In some cases, the two values (that (...) of agency and that of authenticity) entail different outcomes. We argue that the comparative value of these values needs to be assessed. (shrink)

I was recently invited to talk about ethics with the staff of a level‐three neonatal intensive care unit. They presented a case featuring a full‐term baby born by emergency caesarean‐section after a cord prolapse that caused prolonged anoxia. Her initial pH was 6.7. She was intubated and resuscitated in the delivery room. Her Apgar score remained at 1 for ten minutes. Further evaluation over the next two days revealed severe brain damage. Her prognosis was dismal.The doctors recommended a do‐not‐resuscitate order. (...) The parents agreed. The doctors suggested a gastrostomy tube. The parents disagreed. Instead, they requested that fluid and nutrition be discontinued. The emotions in the room, as we started to discuss the case, were strong and discordant. Eventually, the conversation wound down. They turned, expectantly, to the visiting bioethicist. (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)

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)

“Facts don’t come with their own meaning attached.” Tzvetan Todorov Alex John London is frustrated by the commonly encountered situation of doctors thinking that they know what is bes...