Physician services and costs after disclosure of diagnostic sequencing results in the NYCKidSeq program.

PURPOSE: To better understand the effects of returning diagnostic sequencing results on clinical actions and economic outcomes for pediatric patients with suspected genetic disorders. METHODS: Longitudinal physician claims data after diagnostic sequencing were obtained for patients aged 0 to 21 years with neurologic, cardiac, and immunologic disorders with suspected genetic etiology. We assessed specialist consultation rates prompted by primary diagnostic results, as well as marginal effects on overall 18-month physician services and costs. RESULTS: We included data on 857 patients (median age: 9.6 years) with a median follow-up of 17.3 months after disclosure of diagnostic sequencing results. The likelihood of having ≥1 recommendation for specialist consultation in 155 patients with positive findings was high (72%) vs 23% in 443 patients with uncertain findings and 21% in 259 patients with negative findings (P < .001). Follow-through consultation occurred in 30%. Increases in 18-month physician services and costs following a positive finding diminished after multivariable adjustment. Also, no significant differences between those with uncertain and negative findings were demonstrated. CONCLUSION: Our study did not provide evidence for significant increases in downstream physician services and costs after returning positive or uncertain diagnostic sequencing findings. More large-scale longitudinal studies are needed to confirm these findings.

"But I Have a Pacer There Is No Point in Engaging in Hypothetical Scenarios": A Non-Imminently Dying Patient's Request for Pacemaker Deactivation.

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker-a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying.

The Uncommon Ethics of the Medical Profession: A Response to My Critics.

In responding to my critics, James Childress, Tom Beauchamp, Soren Holm, and Ruth Macklin, I reprise my arguments for medical ethics being an uncommon morality. I also elaborate on points that required further clarification. I explain the role of trust and trustworthiness in the creation of a profession. I also describe my views on the relationship of the medical profession to the society in which medicine is practiced. Finally, I defend my claim that medical ethics "is constructed by medical professionals for medical professionals" by describing the profession's unique vantage point for regulating and policing the profession's uncommon powers and privileges.

Should Compensation for Organ Donation Be Allowed?

The need for organs to transplant is clear. Due to the lack of transplants, people suffer, they die, and the cost of taking care of them until they die is huge. There is general agreement that it would be good to increase the supply of organs in order to meet the demand for organ transplantation.

Justice in COVID-19 vaccine prioritisation: rethinking the approach.

Policies for the allocation of COVID-19 vaccine were implemented in early 2021 as soon as vaccine became available. Those responsible for the planning and execution of COVID-19 vaccination had to make choices about who received vaccination first while numerous authors offered their own recommendations. This paper provides an account of how such decisions should be made by focusing on the specifics of the situation at hand. In that light, I offer an argument for prioritising those who are likely vectors of the disease and a criticism of the victim-focused priority proposals put forward by the US Centers for Disease Control and Prevention, the National Academies of Sciences, Engineering, and Medicine, the UK National Health Service, and others. I also offer thoughts on how those authors may have gone astray.

Medical Ethics: Common or Uncommon Morality?

This paper challenges the long-standing and widely accepted view that medical ethics is nothing more than common morality applied to clinical matters. It argues against Tom Beauchamp and James Childress's four principles; Bernard Gert, K. Danner Clouser and Charles Culver's ten rules; and Albert Jonsen, Mark Siegler, and William Winslade's four topics approaches to medical ethics. First, a negative argument shows that common morality does not provide an account of medical ethics and then a positive argument demonstrates why the medical profession requires its own distinctive ethics. The paper also provides a way to distinguish roles and professions and an account of the distinctive duties of medical ethics. It concludes by emphasizing ways in which the uncommon morality approach to medical ethics is markedly different from the common morality approach.

Why not common morality?

This paper challenges the leading common morality accounts of medical ethics which hold that medical ethics is nothing but the ethics of everyday life applied to today's high-tech medicine. Using illustrative examples, the paper shows that neither the Beauchamp and Childress four-principle account of medical ethics nor the Gert et al 10-rule version is an adequate and appropriate guide for physicians' actions. By demonstrating that medical ethics is distinctly different from the ethics of everyday life and cannot be derived from it, the paper argues that medical professionals need a touchstone other than common morality for guiding their professional decisions. That conclusion implies that a new theory of medical ethics is needed to replace common morality as the standard for understanding how medical professionals should behave and what medical professionalism entails. En route to making this argument, the paper addresses fundamental issues that require clarification: what is a profession? how is a profession different from a role? how is medical ethics related to medical professionalism? The paper concludes with a preliminary sketch for a theory of medical ethics.

Should living donor liver transplantation be an option when deceased donation is not?

When a liver transplantation candidate is declined for listing to receive a deceased organ, sometimes a loved one comes forward and offers to be a living donor. This raises the ethical question of whether a patient who is not eligible for deceased donor liver transplantation should be eligible for living donor liver transplantation. We compare living organ donation in kidney and liver transplantation and explore key ethical concepts of justice, fairness, and societal trust. Ultimately, because there is no alternative life-preserving therapy in end-stage liver disease, and because transplantation with a living donor organ does not involve removing a resource from the common pool of transplant organs, we argue that a standard of "slightly less benefit" than that required for deceased transplantation should be used to determine the acceptability of living donor liver transplantation.

Medicine and Contextual Justice.

This article provides a critique of the monolithic accounts that define justice in terms of a single and often inappropriate goal. By providing an array of real examples, I argue that there is no simple definition of justice, because allocations that express justice are governed by a variety of reasons that reasonable people endorse for their saliency. In making difficult choices about ranking priorities, different considerations have different importance in different kinds of situations. In this sense, justice is a conclusion about whether an allocation reflects the human interests and priorities that are at stake. The article describes how several principles of justice have a legitimate place in medical allocations. To achieve justice within medical practice, professionals should focus on the human interests and compelling reasons for prioritizing specific principles within their specific medical domain.

Ideology and Palliative Care: Moral Hazards at the Bedside.

Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

Do Not Resuscitate, with No Surrogate and No Advance Directive: An Ethics Case Study.

Do-not-resuscitate (DNR) orders are typically signed by physicians in conjunction with patients or their surrogate decision makers in order to instruct healthcare providers not to perform cardiopulmonary resuscitation (CPR). Both the medical literature and CPR guidelines fail to address when it is appropriate for physicians to sign DNR orders without any knowledge of a patient's wishes. We explore the ethical issues surrounding instituting a two-physician DNR for a dying patient with multiple comorbidities and no medical record on file, no advance directives, and no surrogate decision maker. Through this case we also highlight the issues of poor prognostication and the reversal of a DNR in such circumstances.