Edward Elgar Publishing, UK and USA, 187 + 7 pp. Price: £55 (hb)
Reviewed by Loane Skene, Melbourne Law School
This book grapples with issues that are world-wide – the rising cost of health services, driven by advances in technology, and an ageing population. Countries cannot afford to provide all health services to everyone. There is often an unfair distribution so that the poor miss out and also many of the sick. Faced with these issues, how are health service providers to achieve ‘distributive justice’ in allocating health resources?
In considering these issues, Professor George P Smith II, Professor of Law at the Catholic University of America Law School in Washington, draws on a lifetime of interdisciplinary experience relating to legal issues arising from health and biotechnology. Smith has not only published a range of books (ten are listed in the Introduction to this book) and numerous articles. He has also travelled extensively in the US, the UK, Europe and Australia. The Introduction to this book lists ten ‘academic affiliations’ from across the globe that he acknowledges as having contributed to the book.
Smith’s answer to the problems posed by limited health resources is to focus on ‘distributive justice’. He says this ‘pertains to what is owed by society to its members in the micro allocation of health care resources’ (p 19, his italics) (whereas general justice is concerned with macro allocation to sustain the public good). This moves the emphasis from individual rights to achieving what is good for the wider community. As Smith says, ‘it is thought unrealistic and impractical to acknowledge an absolute right to health care’ (p 40) and he cites Richard Lamm’s view that ‘the elderly have “a moral duty to forego further health care and to accept their death”’ and not use health resources that will be better utilized by the young; ‘intergenerational equity or justice’ (p 31).
Issues of resource allocation are not new, of course. There is a wealth of literature on ‘health rationing’, much of it canvassed by Smith. His discussion ranges from the view of justice held by Plato, Aristotle and ‘passed down by Aquinas to the Christian tradition … a principle of moral conduct between and among those within human societies’ (p 20); equality of opportunity in the Rawlsian tradition (p 21, though Smith notes that Rawls did not list health care among his primary social goods: p 21); ‘a fair process to establish legitimacy for critical resource allocation decisions’ (pp 22, 37), such as prospective rules by a capital budgets committee (p 24) – a‘ “first come first served” system of queues, random selection, …ability to pay, triage systems based on medical urgency …’ (p 27); and the utilitarian, ‘greatest happiness for the greatest number of citizens’ theory of QALYS (quality adjusted life years, pp 2-3, the Oregon process) focusing on ‘statistical patients’ rather than particular patients (p 25).
Smith himself believes that the best means to ensure distributive justice is ‘the dynamics of gatekeeping ethics and the centrality of the medical healing partnership between patient and physician’ (p 40). He notes that ‘physician-gatekeepers … are responsible for 75 percent of national expenditures for health care’ (pp 23-4), though if a service is not funded, the physician has no discretion to provide it, unless the patient can pay for it (p 25). Indeed, if patients are involved in deciding about services to be provided, that may reduce costs; patients may choose not to have treatment if there is co-payment or it will prolong life for only a short time. But if distributive justice is implemented ‘at the patient bedside without any real societal consensus on how it is defined and practiced’, it is likely to be arbitrary and to depend on ‘the individual value system of the … physician’ (p 24).
The implications of Smith’s argument are evident when he turns the discussion to particular types of treatment – infibrilators, artificial hearts, renal dialysis and heart transplants. His final chapter describes the development of procedures for allocating organs for transplant (noting that ‘On 3 December 2007, there were over 97,800 candidates for organ transplants – with a new name being added every 10 minutes’ (p 141); in the United Kingdom, 8,000 patients need a transplant of one or more organs each year and fewer than 2,000 transplantation procedures are undertaken’ (p 149).
There are long waiting lists for organ transplants but ‘sales’ are prohibited, at least by the donor, though transplant surgeons and hospitals ‘make solid profits from “organ-trading business”, [as well as] … procurement agencies and not-for-profit transplant agencies’ (pp 148, 152-3) – ‘a dead body is worth tens of thousands of dollars for its parts’ (p 151). Also many patients need to have more than one transplant. The ‘prototypical allocative model’ until 1985 was that organs would be allocated to those who had ‘a longer graft survival rate. Debates simply never focused on issues such as access, equity or statistical uncertainty’ (p 145) – yet in practice, people get priority if they live in the local area of the donor (p 146). If those debates did occur, utilitarian arguments might include who has ‘the highest probability of medical success’; or who requires ‘smaller amounts of a particular resource’; or ‘having the largest social responsibilities to dependents …or the greatest actual or potential general social worth’ (p 166). There could be separate waiting lists for patients in different age groups, or without families (p167); or organs could be allocated by lottery or auction (p 169). Although this may seem abhorrent, there is an international market for organs and restricting the sale of organs is inconsistent with the open market for human eggs, sperm and blood (p 149).
Perhaps we could do more to promote organ donation by acknowledging the duty that people have under Smith’s view of distributive justice to ‘give back’ in order to help others. In the US, organ transplant coordinators are trained to approach families of potential organ donors to discuss donation (p 152). Under the Revised Uniform Anatomical Gift Act of 2006, donor cards trump a living will, so that ventilation or medical care can be given even if it has been refused in a living will; and ‘paired exchanges’ have started, where potential donors are not a match and donors come from other families whose family member also needs a transplant (p 156). But in some European countries, under the principle of escheatage, ‘the state simply delegates its ownership rights [in bodies of its citizens] to licensed physicians’, which Smith describes as ‘utilitarianism at its highest order’, though a practice ‘analogized to both slavery and totalitarianism’ (p 158).Other possibilities are ‘mandated choice’ (requiring all individuals to state in advance whether they wish to be organ donors) which would prevail over relatives’ objections (p 158); a futures market in organs (p 159-60); and the development of more artificial organs (p 167).
In Chapter 3, Smith discusses the ‘new medicine and scientific research’, especially genetic technology, and its relationship to health service provision, asking whether there should be ‘limits to the right of scientific investigation’ and, if so what they should be (p 3). For example, should genetic research be allowed when it advances health care but not if it is directed to genetic enhancement? He argues that ‘… Americans might decide to limit ‘halfway’ or exotic, science fiction inspired technologies, such as artificial hearts or brain transfers into robot bodies, [but] it would appear unlikely they would ever approve limitations on medical research whose focus is to discover technologies, drugs and scientific techniques which not only maintain qualitative existence but extend life’ (at p 4). The chapter includes a detailed analysis of the development of genetic and reproductive technology and its regulation in the United States, especially under Presidents Clinton and Bush.
Chapter 4 of the book, dealing with human experimentation, has less focus on distributive justice than the rest of the book, though it is related to the other theme of the ‘medical healing partnership between patient and physician’ (p 40). Smith explains the need for physicians to discuss proposed medical procedures fully with patients; the standard of care for disclosure established in Canterbury v Spence; the physician’s duty to tell patients if an experiment is being conducted; proxy consent; and ethical review by institutional review boards (Smith believes the review process is under resourced and ‘too tilted in favor of the researcher’ (p 155). However, in this chapter, Smith fails to explore resource issues that seem implicit in the material discussed. He says that a very large number of patients participate in medical research each year (p 103). Many of these experimental procedures are therapeutic and may have cost implications for the state, either through payments for health services developed from the research or through funding the research itself (the US federal government was estimated to spend $25 billion on biomedical research in 2000, well under half the amount spent by private sector: p 126). Even if these figures are inflated, one may question whether this money is being spent in an efficient and ‘just’ way. If the majority of the research funding comes from the private sector and it produces new information and treatments, that research would seem to be worthwhile in conserving public funds and producing beneficial results. However, later, the government has extra expense in funding expensive new treatments developed from the research. The distributive justice question is whether it is fair for the government to pay higher costs for these activities – or to give them higher priority over other demands on its resources – not whether potential trial participants have been adequately informed about potential risks etc.
Similarly, with experiments in third world counties, one might ask whether it is fair – when applying the principles of distributive justice – that a wealthy country should obtain a financial advantage from experiments in a third world country that would not meet its own ethical standards. The basic principles of informed consent and the international codes on ethical conduct are a red herring when the real issue is economic discrepancies and the balance of power between different countries. In the context of the book, the questions would perhaps be better considered in relation to the range of ethical principles that Smith outlines in chapters 1 and 2, including the ethics of individual physicians in recruiting patients for clinical trials (p 132). The same is true of some of the discussion on chapter 3 which, as noted earlier, deals with research and treatment for genetic diseases (Smith notes that there are more than 4,000 genetic diseases (p 48). Treating these conditions may involve cost savings for governments (through screening programs to enable early interventions and more effective treatments), but also costs (for treating people who previously would have died, often with expensive procedures). As in chapter 4, however, much of the discussion concerns broad ethical issues (such as ‘degradation of parenthood and the dehumanization of man … sanctity of human life … involuntary cloning’ (p 50)), rather than those directly associated with distributive justice. Those issues are obviously a challenge but how do they relate to resource allocation?
Despite what seem to me missed opportunities to cast new light on old and new issues using the model of ‘distributive justice’ advanced by Smith, this book will be stimulating for a wide audience. I was recently a visitor at Smith’s alma mater, the Indiana University School of Law, now called the Michael Maurer School of Law. Reading Smith’s book, I found myself applying his principles to resource allocation issues that were then in the press in Indiana. For example, Baby Ryan needs a kidney transplant which will apparently cost $65,000 and there were collection boxes in cafes and other public places in Bloomington. Seeing the photograph of Ryan, one’s heart naturally goes out to him and his parents. Yet is follows from utilitarian arguments based on balancing competing health interests, that there are others who may have a greater claim on the limited public funds for health care. This conclusion is, of course, the reason for Ryan’s parents’ emotive pleas for assistance and we all know that individual cases will be the undoing of any planned and logical scheme for optimizing resource allocation.
Another widely publicized case was that of Nadya Suleman, who reportedly used assisted reproductive technology (ART) to conceive octuplets when she already had six children (also conceived by ART). If she was able to pay for the latest procedure herself, does this infringe Smith’s principles of distributive justice? One would perhaps need to consider the cost to the state beyond the initial ART, the delivery and the pediatric care for the infants. How will a single mother pay for the care of fourteen children? If welfare costs are taken into account, state revenue would seem to be better spent on caring for other people for whom there may be greater ‘benefit’. This would accord with Smith’s notion of ‘the dynamics of gatekeeping ethics and the centrality of the medical healing partnership between patient and physician’ to conserve state resources. But would we wish to place such extensive responsibilities on physicians when patients approach them to perform medical procedures?