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We need to consider the ethical challenges inherent in implementing machine learning in health care if its benefits are to be realized. Some of these challenges are straightforward, whereas others have less obvious risks but raise broader ethical concerns.

The cases of Jahi McMath and Marlise Muñoz have reopened public debate about brain death. But the law and ethics have long recognized that deferring to medical expertise regarding the diagnosis of brain death is the most reasonable way to manage the process of dying. Two cases in which patients have been determined to be dead according to neurologic criteria (“brain death”) have recently garnered national headlines. In Oakland, California, Jahi McMath's death was determined by means of multiple independent neurologic examinations, including one ordered by a court. Her family refused to accept that she had died and went to court to prevent physicians at Children's Hospital and Research Center in Oakland from discontinuing ventilator support. Per a court-supervised agreement, the body was given to the family 3 weeks after the initial determination. The family's attorney stated that ventilatory support was continued and nutritional support . . .

According to the mainstream conception of research involving human participants, researchers have been trained scientists acting within institutions and have been the individuals doing the studying, while participants, who are nonscientist members of the public, have been the individuals being studied. The relationship between the public and scientists is evolving, however, giving rise to several new concepts, including crowdsourcing and citizen science. In addition, the practice of gamification has been applied to research protocols. The role of gamified, crowdsourced citizen scientist is new in the domain of scientific research and does not fit into the existing taxonomy of researchers and participants. We delineate and explicate this role and show that, while traditional roles are governed by well‐established norms and regulations, individuals engaged in gamified, crowdsourced citizen science—gamers—fall through the cracks of research protections and regulations. We consider the issues this raises, including exploitation and the absence of responsibility and accountability. Finally, we offer suggestions for how the current lack of appropriate norms may be rectified.

In the context of serious or life-limiting illness, pediatric patients and their families are faced with difficult decisions surrounding appropriate resuscitation efforts in the event of a cardiopulmonary arrest. Code status orders are one way to inform end-of-life medical decision making. The objectives of this study are to evaluate the extent to which pediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions. Nurses, trainees (residents and fellows), and attending physicians from pediatric units where code status discussions typically occur completed a short survey questionnaire regarding their knowledge of code status options and perceptions surrounding code status discussions. Single center, quaternary care children's hospital. 203 nurses, 31 trainees, and 29 attending physicians in 4 high-acuity pediatric units responded to the survey (N = 263, 90% response rate). Based on an objective knowledge measure, providers demonstrate poor understanding of available code status options, with only 22% of providers able to enumerate more than two of four available code status options. In contrast, provider groups self-report high levels of familiarity with available code status options, with attending physicians reporting significantly higher levels than nurses and trainees (p = 0.0125). Nurses and attending physicians show significantly different perception of code status discussion timing, with majority of nurses (63.4%) perceiving discussions as occurring \"too late\" or \"much too late\" and majority of attending physicians (55.6%) perceiving the timing as \"about right\" (p<0.0001). Attending physicians report significantly higher comfort having code status discussions with families than do nurses or trainees (p≤0.0001). Attending physicians and trainees perceive families as more receptive to code status discussions than nurses (p<0.0001 and p = 0.0018, respectively). Providers have poor understanding of code status options and differ significantly in their comfort having code status discussions and their perceptions of these discussions. These findings may reflect inherent differences among providers, but may also reflect discordant visions of appropriate care and function as a potential source of moral distress. Lack of knowledge of code status options and differences in provider perceptions are likely barriers to quality communication surrounding end-of-life options.

Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements (e.g., “This is a treatable condition,” “We have treatments for your loved one”) in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory—in particular, H.P. Grice’s notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: (1) the literal meaning, (2) the physician’s intended meaning, and (3) the patient’s received meaning. The divergence between the physician’s intended meaning and the patient’s received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area.

We are delighted to introduce this symposium of the Cambridge Quarterly of Healthcare Ethics addressing communication, one of the most challenging issues in healthcare. The difficulty of discussing treatment options with seriously ill patients is not “new.” What is new here is the application of linguistic theory to empirical research findings in the area of physician-patient communication in serious illness. The insights afforded by linguistic theory unveil how challenging it can be for physicians and patients to communicate effectively when stakes are high. While this line of thought has the potential to improve communication between physicians and patients, it also has the potential to challenge our foundational understandings of informed consent and shared decision making, leading us to question what is possible. Thus, we believe it is important for everyone who participates in discussions with the seriously ill—patients, family members, physicians, and clinical ethicists—to consider the communication challenges explored in the articles that follow.

Discussion of the “dead donor rule” is challenging because it implicates views about a wide range of issues, including whether and when patients are appropriately declared dead, the validity of the doctrine of double effect, and the moral difference between or equivalence of active euthanasia and withdrawal of life‐sustaining treatment. The DDR will be defined here as the prohibition against removal of organs necessary for the life of the patient—that is, the prohibition of intentionally ending the life of a patient through organ removal. At a minimum, it is difficult not to see the DDR as grounded in a set of laws, norms, values, and practices that are firmly entrenched and have a great deal of philosophical, religious, and legal support. Obviously, the primary argument against the DDR is that it is highly desirable that we continue to procure organs for transplantation, combined with the belief that those from whom we often and possibly typically procure organs are not “really” dead. If donors are not really dead, then we are left with a dilemma: either we abandon organ procurement, or we abandon the DDR. Such a move should be taken only if the way we currently delineate the dead (those from whom it is acceptable to remove organs) cannot be maintained or defended. I will suggest that this is not the case.

A commentary on “SUPPORT and the Ethics of Study Implementation: Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies,” by John D. Lantos and Chris Feudtner, in the January‐February 2015 issue.