Futility, autonomy, and cost in end-of-life care.

This paper uses the controversy over the denial of care on futility grounds as a window into the broader issue of the role of cost in decisions about treatment near the end of life. The focus is on a topic that has not received the attention it deserves: the difference between refusing medical treatment and demanding it. The author discusses health care reform and the ethics of cost control, arguing that we cannot achieve universal access to quality care at affordable care without better public understanding of the moral legitimacy of taking cost into account in health care decisions, even decisions at the end of life.

Ethics, evidence, and cost in newborn screening.

When deciding what disorders to screen newborns for, we should be guided by evidence of real effectiveness, take opportunity cost into account, distribute costs and benefits fairly, and respect human rights. Current newborn screening policy does not meet these requirements.

The ethics of using quality improvement methods in health care.

Quality improvement (QI) activities can improve health care but must be conducted ethically. The Hastings Center convened leaders and scholars to address ethical requirements for QI and their relationship to regulations protecting human subjects of research. The group defined QI as systematic, data-guided activities designed to bring about immediate improvements in health care delivery in particular settings and concluded that QI is an intrinsic part of normal health care operations. Both clinicians and patients have an ethical responsibility to participate in QI, provided that it complies with specified ethical requirements. Most QI activities are not human subjects research and should not undergo review by an institutional review board; rather, appropriately calibrated supervision of QI activities should be part of professional supervision of clinical practice. The group formulated a framework that would use key characteristics of a project and its context to categorize it as QI, human subjects research, or both, with the potential of a customized institutional review board process for the overlap category. The group recommended a period of innovation and evaluation to refine the framework for ethical conduct of QI and to integrate that framework into clinical practice.

The cost effectiveness of universal versus selective newborn screening for sickle cell disease in the US and the UK: a critique.

We reviewed several cost-effectiveness analyses that modelled the costs and yield of newborn screening for sickle cell disease (SCD) in the US and the UK and discuss the ways in which newborn screening policies in each country evolved with regard to the results of the analyses. Each of the reviewed studies compared the projected cost of universal screening with that of selective screening of children from specific ethnic groups. Despite variability in assumptions, the studies concurred that universal screening in areas with low SCD prevalence would result in a higher cost per case detected, compared with selective screening of children in high-risk ethnic groups. Investigators expressed differing opinions about the economic justification of universal screening, which reflected differences in the understanding of cost effectiveness and in how study questions were framed. Ultimately, policy makers in both countries decided in favour of universal screening, which appears to reflect a growing consensus that ethnically targeted newborn screening is not an acceptable public health strategy. One way to interpret this outcome is that considerations of equity and logistics, including potential stigmatisation, missed cases, and the perceived difficulty and discomfort in ascertaining ethnicity or in separating specimens, trumped economic calculations regarding the relative efficiency of targeted screening. It is not the case that policy makers explicitly favoured equity over economic optimisation; rather, they appear to have given more credence and value to the expert opinion of screening specialists than to the results of economic analyses.

Ethics, economics, and physician reimbursement.

There has been much debate among health care professionals over how physicians should be paid for their services. This paper addresses the topic through an economic and ethical analysis. It starts from the premise that fairness and cost effectiveness should be the goals of a good physician reimbursement system. Using the goals of fairness and cost effectiveness as measures, it examines the current market model. Finding that the current model provides neither fairness nor cost effectiveness, the paper compares the structure of the physician services market to the assumptions made by economists in the idealized market model. Two major imperfections are found in the former. These imperfections are an asymmetry in information between patient and physician, and the uneven and unpredictable distribution of health needs. These two imperfections are examined in light of the goals set out in the beginning of the paper. The paper finds that, given the imperfections, physician reimbursement as it currently exists is incompatible with the goals of fairness and cost effectiveness. In conclusion, several recommendations are made, most significantly a broadening of the interpretation of physician agency, i.e., physician as "agent," and the switch from a fee-for-service physician payment system to a salaried medical practice.

Managed care organizations and the rationing problem.

By and large, neither bioethicists nor economists have offered a satisfactory account of how managed care organizations should ration health care. Both disciplines would like to guarantee adequate care to all without defining adequacy. But it cannot be done. The more we rely on market forces to distribute health care, the more we need a national standard of care.