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The cost of end-of-life health care is currently the subject of enormous political, academic, and social debate. Sure, this was big news back in

the early 1980s, when both Alan Greenspan and Gov-ernor Richard Lamm famously articulated the need to limit medical care of the elderly.1 But three decades later, in 2011, the cost of end-of-life health care has an exponentially bigger profile.

President Obama has himself personally addressed the issue in the context of his own grandmother’s treatment.2 And top federal policymakers have tar-geted end-of-life health care costs for reduction. Indeed, such reductions are proposed both to finance expanded insurance coverage and to preserve the country’s fiscal stability and security. Furthermore, discussion of these issues was fueled by the recent (and related) plan to develop critical care triage proto-cols for pandemic influenza.

But notwithstanding all this interest and move-ment, there remains a rather thin clinical, ethical, and policy framework for dealing with costs in end-of-life health care decision making. Currently, the most well developed framework is the promotion of advance care planning for patients with serious, life-limiting illnesses.3 It is a happy coincidence that the medical treatment that most individuals predict they will want when they are known to be dying happens to be less costly.4 So, scholars and policymakers have

devoted significant energies toward developing better tools with which to obtain and document advance care plans (e.g., advance directives, POLST).

Yet these initiatives directed at obtaining consent have been stymied by the nature of decision making under conditions of uncertainty. Consent is conditional upon a notoriously difficult condition to predict with confidence — death — particularly when expensive life-sustaining treatments hold out the promise to “die another day.” Therefore, to reign in cost growth, coverage for medical treatment for serious illness must be curbed, regardless of whether it is for people who are actively dying or just eventually dying — namely, everyone. Here we confront a relative vacuum of standards and criteria. The articles in this symposium help to fill this void.

Framing the Issues: Technology, Cost, and CompassionIn the very first sentence of Principia Ethica, G. E. Moore observes that “in ethics, as in all other philo-sophical studies, the difficulties and disagreements of which history is full, are mainly due to a very simple cause: namely to the attempt to answer questions, with-out first discovering precisely what question it is you desire to answer.”5 Moore’s concern is well-illustrated in legal, medical, and ethical debates over the relationship between cost and medical treatment at the end of life.

Accordingly, this symposium begins with four articles that frame the cost and public policy issues with caring for the seriously ill. In “End-of-Life Care: A Philosophical or Management Problem?,” Daniel Callahan describes two types of serious obstacles for end-of-life care. First, he outlines obstacles at the level of management of the care of the dying and the edu-cation of physicians and patients. Second, Callahan identifies even more serious obstacles. He argues that

introduction

Caring for the Seriously Ill: Cost and Public Policy

Thaddeus M. Pope, Robert M. Arnold, and Amber E. Barnato

Thaddeus M. Pope, J.D., Ph.D., is Associate Professor of Law at Widener University and Adjunct Associate Profes-sor at Albany Medical College. Robert M. Arnold, M.D., is Professor of Medicine and Leo H. Creip Chair of Patient Care at the University of Pittsburgh. Amber E. Barnato, M.D., M.P.H., M.S., is Associate Professor of Medicine, Clinical and Translational Science, and Health Policy and Management at the University of Pittsburgh.

112 journal of law, medicine & ethics

INTRODUCTION

these are created by “a progress-driven, technologi-cally infatuated medicine” that “relentlessly scales the ladders of the trenches to face the enemy.” Callahan, in short, argues that we must change the underlying (death-denying) values of our health care system. Oth-erwise, we will have a system that is not economically and humanly sustainable.

Dan Crippen and Amber Barnato take a more eco-nomic approach to framing the issues in “The Ethical Implications of Health Spending: Death and Other Expensive Conditions.” They focus on the “inter-gen-erational impact of health care spending.” We spend far more on health care for the elderly than we do on education and health care for the young. Crippen and Barnato argue that we may not be spending enough on today’s children to support them in their youth and prepare them for the future.

Moreover, because much of today’s (and yesterday’s) spending on the elderly is (and has been) financed by public debt, the cost of that health care is being pushed onto (and borrowed from) future generations. Leaving today’s children both less educationally prepared and with less money to spend and invest may violate a long-standing societal “compact” between the generations.

In “Care, Compassion, or Cost: Redefining the Basis of Treatment in Ethics and Law,” Tom Koch cautions against a too-narrow focus on costs. He summarizes the history of the invocation of cost as a criterion for limiting medical care. Koch first examines the rela-tionship between cost and eugenics in the first half of the 20th century. He highlights the “utilitarian tri-age” assumption in Buck v. Bell and in Binding and Hoche’s Nazi-influencing Permitting the Destruction of Unworthy Life. Koch next reviews revitalization of the utilitarian triage assumption in the “duty to die” arguments of the 1980s and 1990s.

Finally, looking to recent (and growing) intersec-tions of bioethics and international human rights, Koch argues for the rejuvenation of compassion and care as an alternative to utilitarian triage. Koch argues that, unless tempered, “economic rationality” too eas-ily justifies limiting care for the seriously ill by placing economic interests above patient needs and wishes.

In contrast to the first three articles, Kathryn Art-nak, Richard McGraw, and Vayden Stanley frame the issue in terms of access more than in terms of cost. In “Health Care Accessibility for Chronic Illness Man-agement and End-of-Life Care: A View from Rural America,” Artnak et al. focus on the special challenges of bringing quality end-of-life care to rural communi-ties. One in five Americans lives in a rural community. Through both data and compelling vignettes, Artnak et al. demonstrate that rural health care is very differ-ent from urban health care.

Residents of rural America face serious obstacles to quality care at the end of life. For example, rural areas are poorer and poverty is a known major risk factor for poor health outcomes. But it is geography, more than any other factor, that most impacts the availability of health care services. Patients (and providers) must travel significant distances and expend substantial time to obtain (and deliver) treatment. Artnak et al. conclude by outlining several ways in which access to providers and professional support can be improved.

Solving the Problems: Deliberation, Education, and ResearchThe next five articles in this symposium turn from framing the issues and defining the problems, to out-lining solutions. They describe and defend a range of constructive approaches to the problematic relation-ship of costs and caring for the seriously ill.

Leonard Fleck argues that the need for health care rationing is inescapable. In “Just Caring: Health Care Rationing, Terminal Illness, and the Medically Least Well Off,” he first takes us through some compelling examples (from LVADs to cancer drugs) that illustrate why we should not spend any amount of money to save all the lives or life-years that medical technology per-mits. To make the necessary rationing decisions Fleck argues that we must devise “rational and fair processes of democratic deliberation.” He outlines how we should approach these Rawlsian-like deliberations about making rationing decisions for our future seriously ill selves.

In “Futility, Autonomy, and Cost in End-of-Life Care,” Mary Ann Baily uses the medical futility debate as a win-dow into the broader issue of the role of cost in decisions about treatment near the end of life. Over its more than two-decade duration, many commentators in the futility debate have carefully avoided the role of cost. For exam-ple, reliance or discussion of cost was conspicuously absent in the Helga Wanglie case that Baily uses.6 Baily argues that this approach is misguided; we must legiti-mize the consideration of cost. Unless the public first understands the very need for cost-based limits on the availability and use of treatment, society cannot reach compromise on the content of cost-conscious medicine. Baily offers some practical suggestions on how bioethi-cists can help validate the cost control enterprise.

While Fleck and Baily focus on the public costs of end-of-life health care, Greer Donley and Marion Danis focus on the personal costs. In “Making the Case for Talking to Patients about the Costs of End-of-Life Care,” Donley and Danis contend that end-of-life costs can be contained not only by limiting choice but also by empowering patients. Specifically, they argue that clinicians should explicitly discuss end-of-life health

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Pope, Arnold, and Barnato

care costs with their patients. While cost is not yet a component of common law informed consent7 or even new statutory right-to-know laws,8 that law is quickly evolving.9 Moreover, Donley and Danis make the ethi-cal dimensions undeniable. Discussing end-of-life costs in the clinical encounter will enable patients to shape the end of life in a manner that is most compati-ble with their values and life plans. And when patients save out-of-pocket costs, they also save societal costs.

In “Costs and End-of-Life Care in the NICU: Lessons for the MICU?” John Lantos and William Meadow explore differences between the cost-effectiveness of patients (usually premature infants) in the neonatal intensive care unit (NICU) with the cost-effectiveness of patients in the medical intensive care unit (MICU). While both types of ICU care are expensive, NICUs are far more cost-effective. In contrast to MICU patients, whose chances of survival falls to 50% and below after 72 hours, NICU patients remaining after ten days have a survival rate of nearly 90%. Moreover, in contrast to patients discharged from the MICU (who still have underlying morbidities), most NICU graduates live unimpaired for decades. Lantos and Meadow argue that comparing and contrasting NICU and MICU economics reveals some valuable lessons for conduct-ing better empirical research and for designing better prognostic tools.

While Lantos and Meadow encourage researchers in the MICU and the NICU to learn from each other, Robert Blank encourages researchers to look even farther away for lessons and guidance. In “End-of-Life Decision Making across Cultures,” Blank calls for additional study of how end-of-life issues are handled in different cultural settings across countries. Too much of the debate over these issues has been framed by western practices and values. Cross-country com-parison, Blank argues, can identify a greater variety of options and can provide insight into what works or does not work within different institutional and value contexts. To illustrate the point, Blank summarizes end-of-life policies in 12 countries that represent a range of cultural, economic, and ideological dimen-sions (Brazil, China, Germany, Israel, India, Japan, Kenya, Netherlands, Taiwan, Turkey, the United States, and the United Kingdom).

Cautioning against Flawed Solutions: Hope and HospiceThe final two articles in this symposium raise the red flag of caution. In “The Value of Life at the End of Life: A Critical Assessment of Hope and Other Factors,” Paul Menzel observes that while health care costs at the end of life may be high, so is the value that people place on extending life at the end of life. He first reviews seven psychological factors that boost the marginal value of

life-extending care at the end of life. Menzel then nor-matively assesses those factors, especially the role of hope. He cautions that unless we appreciate how addi-tional life at the end of life has disproportionate worth, we may follow a “crude, uniform cost-effectiveness for-mula that glosses over real variations in value.”

Much of the discussion of end-of-life medical costs focuses on the expense of aggressive, curative-directed treatment. Whether such interventions are limited involuntarily (by restricting Medicare coverage) or voluntarily (through better patient education about options and costs), more of tomorrow’s patients will die in hospice.10 Indeed, Joshua Perry and Robert Stone demonstrate that hospice has already been growing at a dramatic pace. But in “In the Business of Dying: Questioning the Commercialization of Hospice,” Perry and Stone argue that hospice presents its own risks.

Much of the growth in the hospice industry has been driven by for-profit providers. These providers gener-ate higher revenues than their nonprofit competitors. For-profit hospice providers do this through the selec-tive recruitment of longer-term patients and through the payment of lower salaries and benefits to less skilled staff. Perry and Stone are careful to observe that there is no evidence of inferior care at for-profit hospice provid-ers. More data examining potentially negative correla-tions are needed. But, by analogizing to for-profit expe-rience in other health sectors, Perry and Stone argue that the for-profit model may become problematic.

ConclusionAmericans are engaged in an earnest and profound debate about how to consider costs in caring for the seriously ill. This symposium not only advances the ongoing debate but also offers a number of fresh ideas on the subject.

References1. Associated Press, “Gov. Lamm Asserts Elderly, If Very Ill, Have

‘Duty to Die,’” New York Times, March 29, 1984; J. Schulte, “Terminal Patients Deplete Medicare, Greenspan Says,” Dallas Morning News, April 26, 1983.

2. D. Leonhardt, “After the Great Recession,” New York Times Magazine, April 28, 2009.

3. See, e.g., Massachusetts Expert Panel on End-of-Life Care, Patient-Centered Care and Human Mortality: The Urgency of Health Systems Reforms to Ensure Respect for Patients’ Wishes and Accountability for Excellence in Care, October 2010; G. Kolata, “Asking Kidney Patients to Forgo a Free Lifeline,” New York Times, April 1, 2011.

4. The National POLST Paradigm Task Force, Statement of the Fiscal Impact of the POLST Paradigm (2010).

5. G. E. Moore, Principia Ethica (1903).6. See A. M. Capron, “In re Helga Wanglie,” Hastings Center

Report 21, no. 5 (Sept.-Oct. 1991): 26-28.7. See, e.g., Arato v. Avedon, 858 P.2d 598 (Cal. 1993).8. See, e.g., Cal. Health & Safety Code § 442.5; N.Y. Pub. Health

L. § 2997-c.9. See, e.g., M. A. Hall and C. E. Schneider, “When Patients Say

No (To Save Money): An Essay on the Tectonics of Health Law,” Connecticut Law Review 41, no. 3 (2009): 743-780.

10. Dartmouth Institute for Health Policy and Clinical Practices, Trends and Variation in End-of-Life Care for Medicare Benefi-ciaries with Severe Chronic Illness, April 2011.