The cost trajectory of the diagnostic care pathway for children with suspected genetic disorders.

PURPOSE: This study describes the cost trajectory of the standard diagnostic care pathway for children with suspected genetic disorders in British Columbia, Canada. METHODS: Average annual per-patient costs were estimated using medical records review and a caregiver survey for a cohort of 498 children referred to BC Children's and Women's Hospitals (C&W) with unexplained intellectual disability (the TIDE-BC study) and families enrolled in the CAUSES study, which offered diagnostic genome-wide sequencing (GWS; exome and genome sequencing) to 500 families of children with suspected genetic disorders. RESULTS: Direct costs peaked in the first year of patients' diagnostic odyssey, with an average of C$2257 per patient (95% confidence interval [CI] C$2074, C$2441) for diagnostic testing and C$631 (95% CI C$543, C$727) for specialist consultations at C&W. In subsequent years, direct costs accrued at a constant rate, with an estimated annual per-patient cost of C$511 (95% CI C$473, C$551) for diagnostic testing and C$334 (95% CI C$295, C$369) for consultations at C&W. Travel costs and caregiver productivity loss associated with attending diagnosis-related physician appointments averaged C$1907/family/year. CONCLUSIONS: The continuing long-term accrual of costs by undiagnosed patients suggests that economic evaluations of diagnostic GWS services should use longer time horizons than have typically been used.

SCAI/ACVP expert consensus statement on cardiovascular catheterization laboratory economics: If the cath lab is your home you should understand its finances: This statement was endorsed by the Alliance of Cardiovascular Professionals (ACVP) in April 2019.

This article is intended for any physician, administrator, or cardiovascular catheterization laboratory (CCL) staff member who desires a fundamental understanding of finances and economics of CCLs in the United States. The authors' goal is to illuminate general economic principles of CCL operations and provide details that can be used immediately by CCL leaders. Any article on economics in medicine should start by acknowledging the primacy of the principles of medical ethics. While physicians have been trained to act in the best interests of their patients and avoid actions that would harm patients it is vitally important that all professionals in the CCL focus on patients' needs. Caregivers both at the bedside and in the office must consider how their actions will affect not only the patient they are treating at the time, but others as well. If the best interests of a patient were to conflict with any recommendation in this article, the former should prevail. KEY POINTS: To be successful and financially viable under current payment systems, CCL physicians, and managers must optimize the outcomes and efficiency of care by aligning CCL leadership, strategy, organization, processes, personnel, and culture. Optimizing a CCL's operating margin (profitability) requires maximizing revenues and minimizing expenses. CCL managers often focus on expense reduction; they should also pay attention to revenue generation. Expense reduction depends on efficiency (on-time starts, short turn-over time, smooth day-to-day schedules), identifying cost-effective materials, and negotiating their price downward. Revenue optimization requires accurate documentation and coding of procedures, comorbidities, and complications. In fee-for-service and bundled payment reimbursement systems, higher volumes of procedures yield higher revenues. New procedures that improve patient care but are expensive can usually be justified by negotiating with vendors for lower prices and including the "halo effect" of collateral services that accompany the new procedure. Fiscal considerations should never eclipse quality concerns. High quality CCL care that prevents complications, increases efficiency, reduces waste, and eliminates unnecessary procedures represents a win for patients, physicians, and CCL administrators.

Medical crowdfunding in China: empirics and ethics.

Medical crowdfunding has become a popular choice worldwide for people with unaffordable health needs. In low-income and middle-income countries with limited social welfare arrangements and a high incidence of catastrophic health spending, the market for medical crowdfunding is booming. However, relevant research was conducted exclusively in North America and Europe; little is known about medical crowdfunding activities inother contexts. As a first step towards filling this knowledge gap, this study depicts the realities of medical crowdfunding in a middle-income country China through empirical investigation and ethical analysis. We examine 100 randomly selected medical campaigns from a major Chinese crowdfunding platform and analyse the relevance of the previously identified ethical concerns to the Chinese context. The empirical findings show that Chinese campaigns have low and uneven success rates, require legally the participation of charitable organisations and focus on financial distress and family values in appealing for donations. In addition, the ethical analysis suggests that medical crowdfunding in China shares several ethical concerns raised in developed countries such as the veracity of claims and privacy violation. More importantly, our research reveals the inadequacy of current evidence and the lack of indicators to evaluate ethical issues in practice. Additional research is needed to better understand this fundraising practice across different social and cultural contexts.

Newborn health benefits or financial risk protection? An ethical analysis of a real-life dilemma in a setting without universal health coverage.

INTRODUCTION: High healthcare costs make illness precarious for both patients and their families' economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood. METHODS: Using a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse the acceptability of limiting treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection. RESULTS: Giving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties-the newborn, family members and health worker-cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people's substantive freedoms. CONCLUSION: In settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty.

Controlling Healthcare Costs: Just Cost Effectiveness or "Just" Cost Effectiveness?

Meeting healthcare needs is a matter of social justice. Healthcare needs are virtually limitless; however, resources, such as money, for meeting those needs, are limited. How then should we (just and caring citizens and policymakers in such a society) decide which needs must be met as a matter of justice with those limited resources? One reasonable response would be that we should use cost effectiveness as our primary criterion for making those choices. This article argues instead that cost-effectiveness considerations must be constrained by considerations of healthcare justice. The goal of this article will be to provide a preliminary account of how we might distinguish just from unjust or insufficiently just applications of cost-effectiveness analysis to some healthcare rationing problems; specifically, problems related to extraordinarily expensive targeted cancer therapies. Unconstrained compassionate appeals for resources for the medically least well-off cancer patients will be neither just nor cost effective.

Research on HIV cure: Mapping the ethics landscape.

In an essay, Karine Dubé and coauthors discuss the ethics of preclinical and clinical studies relevant to achieving an HIV cure.

Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns.

Medical crowdfunding is growing in terms of the number of active campaigns, amount of funding raised and public visibility. Little is known about how campaigners appeal to potential donors outside of anecdotal evidence collected in news reports on specific medical crowdfunding campaigns. This paper offers a first step towards addressing this knowledge gap by examining medical crowdfunding campaigns for Canadian recipients. Using 80 medical crowdfunding campaigns for Canadian recipients, we analyse how Canadians justify to others that they ought to contribute to funding their health needs. We find the justifications campaigners tend to fall into three themes: personal connections, depth of need and giving back. We further discuss how these appeals can understood in terms of ethical justifications for giving and how these justifications should be assessed in light of the academic literature on ethical concerns raised by medical crowdfunding.

The ethics of insurance limiting institutional medical care: It's all about the money.

Dr F. Inest practices surgery at a renowned medical center but is concerned because increasing numbers of medical insurers are excluding his institution from coverage. Many of his former referring physicians are beginning to send their patients elsewhere for this reason. The marketing people have been busy increasing their advertising buys and exploring new business models. There is even talk about reducing expensive clinical trials. However, regardless of his affiliation, he has little control over these and other organizational decisions that directly impact his practice clinically and fiscally. What should he do?

Use of power of attorney in Scotland.

BACKGROUND AND AIMS: Power of Attorney as a form of surrogate decision making was introduced within the Adults with Incapacity, Scotland Act (2000) to help individuals who lack mental capacity due to illnesses like dementia. Even after a decade, little was known if it has been useful. We sought to find out how useful the power of attorney document has been so far in supporting people when they lose their capacity and identify any barriers. METHODS AND RESULTS: We did a survey and approached a random sample of 5000 attorneys in Scotland. A total of 1226 attorneys responded; 59% of the respondents had never used their powers but still considered it useful for 'peace of mind'. For the majority, the costs of arranging a power of attorney ranged in between £150 and £300. CONCLUSIONS: The study confirms that power of attorney is useful to safeguard interests of people when they lose capacity. Costs remain a big barrier. Further studies are required to understand the long-term impact of providing financial support to arrange a power of attorney at an early stage on reducing delayed discharges in hospitals.

The elephant in the room: ethical issues associated with rare and expensive medical conditions.

The treatment of rare and expensive medical conditions is one of the defining qualities of paediatric cardiology and congenital heart surgery. Increasing concerns over healthcare resource allocation are challenging the merits of treating more expensive forms of congenital heart disease, and this trend will almost certainly continue. In this manuscript, the problems of resource allocation for rare and expensive medical conditions are described from philosophical and economic perspectives. The argument is made that current economic models are limited in the ability to assess the value of treating expensive and rare forms of congenital heart disease. Further, multi-disciplinary approaches are necessary to best determine the merits of treating a patient population such as those with significant congenital heart disease that sometimes requires enormous healthcare resources.

The high cost of organ transplant commercialism.

The Declaration of Istanbul defines organ transplant commercialism as '…a policy or practice in which an organ is treated as a commodity, including by being bought or sold or used for material gain.' It is this treatment of the organ that inevitably leads to its financial value being placed before the welfare of either its donor or its recipient or others in need of organ transplantation. International experience over the past two decades has proven this point and outcomes of commercial donation for both organ donors and their recipients have been poor. Commercial organ donation also comes at the expense of, not in addition to, unpaid, 'altruistic' donation. Other consequences of commercial donation are discussed in addition to a review of measures taken by the international community to put an end to the exploitation of vulnerable organ donors and the provision of ethically acceptable options for those in need of organ transplantation.

Which newborn infants are too expensive to treat? Camosy and rationing in intensive care.

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the 'social quality of life (sQOL)' model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal 'quality of life' and Camosy's 'sQOL' should factor into these decisions, and I outline two practical proposals.

Survival is not enough.

Survival is not enough is a yearly international event started in 2007 in Naples, Italy, in the week of the World Kidney Day to discuss the needs of renal patients and the quality of life of a category of patients living a machine-dependent life. Renal patients and their associations, philosophers, economists, nephrologists, and health care managers are enrolled to discuss about the possibility to grant the best cures and care without reducing the quality and the quantity of the services the patients need. Various quests have arisen for (1) a new cadre of managers capable of keeping health accounts in balance without cutting expenditure but by reducing waste of resources, (2) the promotion of prevention as the only measure capable of reducing costs in the long run, and (3) the promotion of clinical and translational research. The changes occurring in the health system should be viewed as a window of opportunity, including the advent of the medical-industrial complex firstly described in 1980, an event originating in the United States of America and now spreading worldwide.

Rationing: the loss of a concept.

In the literature on the subject there is a trend towards understanding the idea of rationing in healthcare very broadly, to include any form of restriction in supply. It is suggested in this paper that there are good reasons to resist this move, since it would both render the concept redundant through being trivially true and displace an earlier, egalitarian one that retains great moral significance for the supply of healthcare. The nature and significance of the narrower, egalitarian conception is set out, drawing particular attention to the fact that it marks a contrast with the idea of prioritising certain people or groups over others and to the fact that it is a form of rationing that is plausibly regarded as a morally desirable response to severe shortages. It is contrasted with the broad conception and arguments in favour of this latter are considered and rejected.

Bioethics in a clinic for women with psychosis.

Clinical ethics takes on a special cast in a rehabilitation clinic for psychosis where many patients come from severely disadvantaged backgrounds and many suffer from fluctuating decisional capacity. This paper illustrates several ethical issues-truth telling and partiality, prescribing concealed medication, questionable billing practices, industry collaboration, limits of confidentiality, grounds for abandonment and the primacy of autonomy-in the hope that discussing such matters will lead to a clearer framework for work with this population.

Why do parents enroll their children in research: a narrative synthesis.

OBJECTIVE: Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enroll their children in clinical research. METHODS: We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method. RESULTS: 16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents. CONCLUSIONS: A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation.

Problems with prioritization: exploring ethical solutions to inequalities in HIV care.

Enormous gaps between HIV burden and health care availability in low-income countries raise severe ethical problems. This article analyzes four HIV-priority dilemmas with interest across contexts and health systems. We explore principled distributive conflicts and use the Atkinson index to make explicit trade-offs between health maximization and equality in health. We find that societies need a relatively low aversion to inequality to favor treatment for children, even with large weights assigned to extending the lives of adults: higher inequality aversion is needed to share resources equally between high-cost and low-cost treatment; higher inequality aversion is needed to favor treatment rather than prevention, and the highest inequality aversion is needed to favor sharing treatment between urban and rural regions rather than urban provision of treatment. This type of ethical sensitivity analysis may clarify the ethics of health policy choice.

Estimating the economic burden of racial health inequalities in the United States.

The primary hypothesis of this study is that racial/ethnic disparities in health and health care impose costs on numerous aspects of society, both direct health care costs and indirect costs such as loss of productivity. The authors conducted three sets of analysis, assessing: (1) direct medical costs and (2) indirect costs, using data from the Medical Expenditure Panel Survey (2002-2006) to estimate the potential cost savings of eliminating health disparities for racial/ethnic minorities and the productivity loss associated with health inequalities for racial/ethnic minorities, respectively; and (3) costs of premature death, using data from the National Vital Statistics Reports (2003-2006). They estimate that eliminating health disparities for minorities would have reduced direct medical care expenditures by about $230 billion and indirect costs associated with illness and premature death by more than $1 trillion for the years 2003-2006 (in 2008 inflation-adjusted dollars). We should address health disparities because such inequities are inconsistent with the values of our society and addressing them is the right thing to do, but this analysis shows that social justice can also be cost effective.