Is It Reasonable to Deny Older Patients Treatment for Glioblastoma? Michael K. Gusmano

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s it ever fair to limit treatment for diseases like glioblastoma for which prognosis is poor? Because resources are finite and health care spending limits the other possible uses for those resources, limiting access to an intervention that does not generate benefits is ethically sound. Ignoring the balance of benefits and burdens associated with treatment ignores opportunity costs and leads us to treat some lives as more valuable than others. It also ignores evidence that patients and families, when presented with adequate information about the benefits and burdens of aggressive treatment compared with palliative care, often prefer the palliative care option. Should the limitations we set on the availability of care be greater for older people than younger people? Since the 1980s, scholars have called for strong age rationing of medical care in which Medicare would not pay for anything other than palliative care after they have achieved average life expectancy (usually 75 or 80 years of age).1 I agree with many of the claims that lead to this call for age rationing. Health spending in the U.S. and other countries has been driven by the growth of technology. Rapid increases in health care spending are crowding out other socially valuable goods, including many that have a profound impact on human health. A focus on extending life and treating death as an “enemy” that should be conquered at all costs is foolish, not only because it ignores the declining marginal utility of aggressive treatments for many patients and the opportunity costs of using these resources for little gain, but because a “less ambitious” health care system may be “more humane.”2 Despite my agreement with the points listed above, I do not agree that attending to these problems requires strict age rationing. First, some older patients may benefit significantly from aggressive treatment, and the contributions of older people to society are often substantial. The belief that we should value additional years of life, regardless of age, should be taken seriously. Second, the fair innings argument rests on assumptions that are questionable. The fact that a person has reached average life expectancy in his or her society may not imply that he or she has consumed a “fair share” of resources. Socioeconomic disparities in access to health care services in the U.S. make a broad age criterion for denying care especially problematic. Third, and perhaps most fundamentally, the assertion that population aging drives health care spending is not supported by the Michael K. Gusmano, Ph.D., is a Research Scholar at the Hastings Center and a Lecturer at Yale University. He received his Ph.D. in Political Science from the University of Maryland at College Park and was a Robert Wood Johnson Foundation Scholar in Health Policy at Yale University.

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empirical evidence. There is no relationship between population aging and health spending at the country level. Although the cost of dying is significant and health policy should encourage more sensible care at the end of life, spending at the end of life actually decreases significantly after the age of 80, even in the U.S., in which the Medicare program provides a financial incentive for the health care system to

Glioblastoma: Current Prognosis for Older Patients

The most common form of brain cancer is Glioblastoma multiforme (GBM), and this malignant primary brain tumor is often aggressive. Treatment may involve surgery, chemotherapy, and radiation. Oncologists predict that the number of patients over the age of 65 with newly diagnosed cases of glioblastoma is likely to increase during the coming decades.4 The prognosis for older patients is poor. While I reject the use of an age criterion for limiting The median survival among curative care, I do not reject that the imposition of patients age 70-79 treated with both surgery and radiation is 7.9 limits on medical treatment and relying exclusively months and the average survival on clinical judgment is not a satisfactory response. among patients 80 years and Comparative health system research shows that the over is 5.7 months. 5 Although there has been some improveonly effective mechanism for slowing the rate of ment in prognosis for patients growth in health care costs is the use of a budget. under the age of 70 in recent While this may lead to the sort of implicit age years, whether it will be possible for treatment to extend life rationing that Daniel Callahan and others hope expectancy for older patients to avoid, the evidence is actually more mixed than is unclear.6 Whether gains of a caricatures of “European” health systems suggest. few additional months of life, often accompanied by mild side effects, including fatigue and continue providing intensive services in very old age. thrombocytopenia, but out of pocket costs for drugs Because spending on care at the end of life decreases not covered by insurance, are worth the cost is an extraordinarily difficult question and one that will dramatically after the age of 80 already, adopting this generate significant disagreement. cutoff for curative care would do little to address the fundamental problem of health inflation. Age Rationing and the “Fair Innings” While I reject the use of an age criterion for limiting curative care, I do not reject that the imposition of Argument The so-called “fair innings” argument claims that when limits on medical treatment and relying exclusively on distributing finite health care resources, patients who clinical judgment is not a satisfactory response. Comhave not yet enjoyed a reasonable share of life should parative health system research shows that the only be given higher priority. The fair innings argument effective mechanism for slowing the rate of growth has common sense appeal, but is it workable? Implein health care costs is the use of a budget.3 While this may lead to the sort of implicit age rationing that Danmenting age-based rationing is, at best, challenging. iel Callahan and others hope to avoid, the evidence is What is a reasonable share of life? Should we use averactually more mixed than caricatures of “European” age life expectancy? If so, does that suggest that we health systems suggest. Furthermore, in systems that should value the lives of people in developing counaddress the need for limits at the policy level through tries less than we value the lives of people in wealthier the use of a budget, physicians tend to enjoy greater countries? clinical autonomy than those who practice in the U.S. Along with the problem of determining what it Budget control may eliminate or limit public funds means to have lived a “fair share” of life, the assumpfor some technologies, but when the government tion that people who reach the age of 80 (or any other and other payers have control over aggregate health cut point we may choose) have already consumed expenditures through a budget mechanism, they have their “fair share” of public resources is an empirical less incentive to question individual clinical decisions assertion that may not be correct. People who live that operate within these broad, politically acceptable beyond average life expectancy in their society tend to parameters.

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be healthy and often consume relative few resources when they are younger. Compression of morbidity, a concept introduced by James Fries, refers to a reduction in the amount of disability among older persons and its compression into fewer years at the end of life. Swedish geriatrician Alvar Svanborg was the first to observe and report on a decline in disability rates among older persons. Based on a study of three cohorts of 70-yearolds in Gothenburg, Sweden, born in 1900, 1905, and 1910, Svanborg found improved functional status and health in each successive cohort. More recently, Kenneth Manton reported reductions in those reporting the need for assistance with instrumental activities of daily life (IADLs) and, to a lesser extent, activities of daily life (ADLs) among older persons in the U.S.7 Between 1992 and 2003 there was an increase in active life expectancy and decrease in years of life spent with severe disability among people 65+ in the U.S.8 Since 1982, there has been a decline in disability among older persons of about 2% per year.9 According to the U.S. Health and Retirement Survey, there was a 30% decline in ADL limitations among persons 75+ between 1995 and 2004, but no change in IADL limitations. Recently, Laura Gordo found that cohorts of older people born between 1931 and 1941 had fewer functional problems, based on an analysis of ADLs and IADLs, than a cohort born between 1924 and 1930.10 Similarly, between 1997 and 2007, the death rates among adults 45-64 decreased by 8 percent.11 The Older Americans 2010 report found that between 1992 and 2007, functional limitations among people age 65 and over “declined from 49 percent to 42 percent.”12 Not only are people who have lived to the age of 80 or beyond likely to be healthy, socioeconomic disparities in access to health care raise important questions about the fairness of denying all older people access to curative care beyond a predetermined age. There are well-known differences in access by ethnicity, gender, income, insurance status, and neighborhood of residence.13 Medicare is successful at narrowing these differences, but the cumulative health deficit that people experience as a result of inequities earlier in life persists in older age.14 Is it fair to limit curative care that may be beneficial to an 80-year-old patient if she received relatively little care earlier in life because the U.S. system rations care on the basis of ability to pay? Providing adequate health care to children and younger adults should not force us to make such a choice. The fair innings argument is part of a broader concern with “intergenerational equity.” This debate focuses on transfers between generations at given neurosciences • summer 2014

points of time. Extrapolation of current spending trends show dramatic increases and “prove” the unaffordability of aging. However, this debate ignores the fact that the policy goal of protecting family incomes against the major risks of unemployment, disability, illness, old age (and large families) entails transfers between population groups as well as transfers over life time. For example, tax subsidies (or tax expenditure) for housing, health insurance, or education aim to reduce financial barriers in access. Mandatory pension savings impose savings over a lifetime. Social insurances and tax transfers thus imply transfers within and between generations. The very term of “intergenerational equity” is misleading when it only considers one element of those transfers. The comparison of public spending levels on older people and young children does not “prove” we are spending the “right” level on either group. It does, however, debunk the claim that spending on older people has crowded out spending on children. It also underlines the importance to examine spending on all age groups before drawing any conclusion. Third, the data reveal substantial transfers from older to younger population group, a fact often ignored in discussion of intergenerational equity. Older people are members of families. The children and grandchildren of current older people, rather than being engaged in a struggle for resources with their parents, benefit from public spending on their older relatives. In addition to their contributions via taxation and direct financial transfers, grandparents often provide valuable services to the family in kind, especially younger members of the household and extended kin.15 The intergenerational justice debate fails to recognize the importance of a life-course perspective. Younger voters support social insurance commitments not only because they agree with the aim to support the elderly but also as they realize that one day, they will become beneficiaries of these programs themselves. Redistribution over the course of a lifetime is, in fact, a major goal of social insurance.16

Does Population Aging Drive Health Care Spending? Beyond the questions of whether it is possible to implement the fair innings idea, it is reasonable to ask whether the focus on biological age is necessary. Calls for using an age standard are often based on inaccurate assertions about the relationship between population aging and health care spending. The argument for age rationing in the U.S. often begins with a recitation of frightening statistics about the implications of population aging for the Medicare program. Projections of the growing number of older people, 185

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the shrinking number of working age people available to support pay-as-you-go social insurance programs, stunning projections of Medicare spending growth over the next few decades are all designed to reinforce the claim that radical action is necessary.17 But as Deb-

The United States spends more on health care than any country in the world. It actually is one of the younger countries in the OECD. In contrast, the Scandinavian countries, Italy, Germany, and France, all with much older populations than the U.S., spend significantly lower percentages of their national income on health care. Likewise, within the European Union, there At an individual level, health care spending is no correlation between population increases as we age, but at a population level, aging and health spending. France and Germany are both younger than Italy and aging itself contributes little to overall health Sweden, for example, but have higher care spending. Technology and price, along levels of health care spending.

with the volume and intensity of treatment, contribute more to health care spending than does population aging. orah Stone reminds us, “There are many possible measures of any phenomenon, and the choice among them depends on the purpose of the measuring.”18 A careful selection of “facts” can help to define problems in ways that make some solutions more attractive than others. The debate over age rationing is no different. The idea that population aging will increase health care spending is compelling. Health tends to deteriorate with age, and older people use more health care resources than do younger people. If everything else is held constant, a society that has more older people should be expected to spend more than would a younger society. Likewise, as the proportion of people age 65 and over increases in a society over time, we should also expect health care spending to increase. The difficulty with this argument is that there is no reason we should hold everything else constant. It is useful, as a thought experiment, to hold everything else constant as a mechanism for reflecting on the longer term implications of current practice, but that does not keep us from changing those practices. At an individual level, health care spending increases as we age, but at a population level, aging itself contributes little to overall health care spending. Technology and price, along with the volume and intensity of treatment, contribute more to health care spending than does population aging. Most health policy experts agree that population aging is likely to increase health care spending over time, but the contribution of aging compared with other factors is actually quite modest. International studies show that there is no correlation between the percentage of the population 65 years and older and the level of health expenditures.19

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Cost of Dying

One particular sensitive theme in the aging debate is the high costs of death that implicitly blames the elderly for living too long and absorbing too many resources during the last months of their lives. A number of studies in Europe and the U.S. conclude that proximity to death, regardless of the age of dying, is associated with high health spending. 20 Callahan notes that “age creep of technological aggressiveness with the elderly continues apace” and points to the use of aggressive interventions among Medicare beneficiaries age 90 and over. The assertion is that most of the expensive interventions in the last six months or year of life are taking place primarily among the “older old” who have already lived beyond average life expectancy and unlikely to benefit greatly from these interventions. While there are certainly examples of high cost interventions among patients age 80 years and over, placing too much emphasis on these cases is misleading. In reality, most spending at the end of life is concentrated on younger patients. More than two decades ago, Marilyn Moon of the Urban Institute pointed out that spending at the end of life was significantly higher among younger Medicare beneficiaries age 65-74 than it was among older beneficiaries. More recent studies confirm that the pattern has not changed. Total spending on older people is greater because they are more likely than younger people to die, but on a per person basis, we spend much less on older people at the end of life than we do on younger people. After the age of 85, spending during the last year of life drops further. Among people 85-89, spending in the last year of life is 17 percent lower than it is among younger Medicare beneficiaries. Spending on people age 90 years and over is 31 percent lower than younger Medicare beneficiaries.21 The Dartmouth Atlas of Health has documented enormous variation in end-of-life care across the U.S. They find that regions with higher end-of-life journal of law, medicine & ethics

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spending do not have better outcomes nor do they seem to reflect patient needs.22 Furthermore, satisfaction among patients with serious illness and perceptions of quality among bereaved family members are lower in high spending regions.23 Differences in spending at the end of life do not appear to reflect preferences.24

What Really Explains the High Cost of Health Care, and What to Do about It? Price, technology, and practice patterns, not population age, are the most important factors that drive health care costs.25 Gerard Anderson and colleagues argue that high prices explain why the U.S. health care system is much more expensive than other nations. Despite spending more than any other nation, health

that there are quite different ways to address certain medical conditions, with similar outcomes but much different costs. All countries in Western Europe and North America face growing (public) health expenditure and medical inflation (the phenomenon that the costs of medical care rise faster than general consumption goods). What is the appropriate response? Relying exclusively on clinical judgment is not sufficient. Evidence from the Dartmouth Atlas of Health demonstrates that variations in treatment, including variations in treatment at the end of life, have little to do with patient needs, patient preferences, or outcomes. As Callahan explains, “Rationing should be done by policy, not by individual doctors and patients at the bedside. There would otherwise be too much variation

The focus on individual patients is both understandable and admirable. But doing everything possible for the patient in front of you ignores the reality that, under conditions of scarcity, doing everything possible for one patient will limit what a clinician can do for the next patient. It also limits what other clinicians can do for their patients and limits what we, as a society, can do to promote health and well-being through investments in social and economic determinants of health. service use in the U.S. is actually below the median for the OECD on most measures. Americans spend about 66 percent more per capita on four common diseases than do Germans. Similarly, the U.S. system used about 30 percent more inputs per capita than the British system and spent about 75 percent more per capita on higher prices.”26 While European countries spend much less on health care that the U.S. (on average 10 % of their national income versus 17 % in the U.S.), there are still concerns about the high and rising costs of public pensions and health care. With stronger mechanisms for price controls in place, the attention focuses more on the volume of services and the rapid spread of medical technology. For example, the 2005 health care reform law of France aims to control the volume of medical treatment. A recent comparison of revascularization procedures in New York, Paris, and London confirms that the French system encourages the use of expensive surgical procedures. Parisians receive more bypass surgeries and angioplasty operations than patients with similar conditions in New York.27 Londoners, the study shows, receive the lowest number of procedures of the three cities. This variation illustrates neurosciences • summer 2014

in decision making, discrepancies between doctor and patient values, and the possibility of physician bias.”28 It would be very difficult to alter physician behavior towards individual patients in favor of a system that better distributes the resources. Clinicians are trained to do “everything possible” for the patient in front of them. The focus on individual patients is both understandable and admirable. But doing everything possible for the patient in front of you ignores the reality that, under conditions of scarcity, doing everything possible for one patient will limit what a clinician can do for the next patient. It also limits what other clinicians can do for their patients and limits what we, as a society, can do to promote health and well-being through investments in social and economic determinants of health. Most countries have been successful in restraining health care expenditure by using a mix of traditional cost control measures, including budget and price controls and various ways to restrain the capacity and use of hospitals and other services. In the rich democracies, spending 10 or 16 percent of national income on health care may be unnecessary or wasteful (as the

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level of expenditure does not seem to affect the outcome much), but it certainly is not “unaffordable.” There are different ways to control costs, including a critical assessment of new technology, budget, and price controls. For example, Australia requires pharmaceutical companies to present proof of costeffectiveness of new drugs before allowing them to enter the market. In the UK, the National Institute for Health and Clinical Excellence (NICE) assesses the cost-effectiveness of new medical treatment. In several European countries, as in Canada, central or regional governments set annual budget limits for medical care in hospitals and independent physician offices. Several countries try to control pharmaceutical expenditure by setting prices, defining lists of prescription drugs as entitlements of the social insurance schemes, and bargaining with representatives of hospitals and physicians over payments and fee schedules. They also seek to influence patient behavior by providing information about medical treatment alternatives and healthy behavior. The effectiveness of that range of policy measures depend on the political willingness and power of policymakers to act. There is no magic bullet for any one course of action, but the international experience shows that certain policies have been more effective than others in reining growth of health expenditure. That is not a matter of ideology or political preference, but common sense in using evidence of what works and what does not. The percentage of our resources that we dedicate to health care, compared to other spending categories, is a political, not a technical decision.

Conclusions It is reasonable to set limits on the availability and use of expensive medical treatments, particularly if they are unlikely to health benefits that outweigh the costs. Failing to do so ignores the reality of finite resources and opportunity costs. It is not clear, however, that the use of an age-based criterion for limiting access to treatment is necessary or practical. Most countries rely on budgets to control aggregate health care spending. Although many people assume that the use of a budget constraint will result in implicit age-based rationing, this is not an inevitable result. Focusing on the contributions of populating aging on health care spending distracts from the more important issues, including the need to set limits on health care spending, control the growth of technology, and improve end of life care. The rules that govern the availability of palliative care limit its use. Hospitals, nursing homes, and physicians have financial and legal incentives to provide intensive care at the 188

end of life, even when the clinical benefits of such care are highly questionable.29 Not surprisingly, these policies sometimes create a gap between what patients want at the end of life and what hospitals and physicians provide. We need policies that encourage and allow clinicians to spend more time speaking with patients about their life goals, including their preferences for end-of-life care. References

1. D. Callahan, Setting Limits: Medical Goals in an Aging Society with “A Response to My Critics” (Washington, D.C.: Georgetown University Press, 1995); M. Fine and J. W. Peters, The Nature of Health: How America Lost, and Can Regain, A Basic Human Value (Oxford: Radcliffe Publishing, 2007). 2. D. Callahan and S. B. Neuland, “The Quagmire: How American Medicine Is Destroying Itself,” New Republic (June 9, 2011): 1-18. 3. T. Marmor and J. Oberlander, “From HMOs To ACOs: The Quest for the Holy Grail in U.S. Health Policy,” Journal of General Internal Medicine 27, no. 9 (2012): 1215-1218; J. White, Competing Solutions: American Health Care Proposals and International Experience (Washington, D.C.: The Brookings Institution, 1995). 4. S. Yovino and S. A. Grossman, “Treatment of Glioblastoma in ‘Elderly’ Patients,” Current Treatment Options in Oncology 12, no. 3 (2011): 253-262. 5. D. R. Johnson and B. P. O’Neill, “Glioblastoma Survival in the United States before and during the Temozolomide Era,” Journal of Neurooncology 107, no. 2 (2012): 359-364. 6. Y. R. Lawrence, M. V. Mishra, M. Werner-Wasik, D. W. Andrews, T. N. Showalter, J. Glass, X. Shen, Z. Symon, and A. P. Dicker, “Improving Prognosis of Glioblastoma in the 21st Century: Who Has Benefited Most?” Cancer 118, no. 17 (2012): 4228-4234. 7. K. G. Manton, “Recent Declines in Chronic Disability in the Elderly U.S. Population: Risk Factors and Future Dynamics,” Annual Review of Public Health 29 (2008): 91-113. 8. J. Fries, “Measuring and Monitoring Success in Compressing Morbidity,” Annals of Internal Medicine 139, no. 5 (2003): 455-459. 9. J. F. Fries, B. Bruce, and E. Chakravarty, “Compression of Morbidity 1980-2011: A Focused Review of Paradigms and Progress,” Journal of Aging Research 2011 (2011), available at (last visited March 24, 2014). 10. L. R. Gordo, “Compression of Morbidity and the Labour Supply of Older People,” Applied Economics 43, nos. 4-6 (2011): 503-513. 11. U.S. National Center for Health Statistics (2011). 12. Federal Interagency Forum on Aging-Related Statistics, Older Americans 2010: Key Indicators of Well-Being (Washington, D.C.: U.S. Government Printing Office, 2010): at xv. 13. M. K. Gusmano, V. G. Rodwin, and D. Weisz, Health Care in World Cities: New York, London and Paris (Baltimore: Johns Hopkins University Press, 2010). 14. S. L. Decker and C. Rapaport, “Medicare and Inequalities in Health Outcomes: The Case of Breast Cancer,” Contemporary Economic Policy 20, no. 1 (2002): 1-11. 15. E. B. Dowdell, “Grandmother Caregivers and Caregiver Burden,” American Journal of Maternal/Child Nursing 29, no. 5 (2004): 299-304; L. N. Grinstead, S. Leder, S. Jensen, and L. Bond, “Review of Research on the Health of Caregiving Grandparents,” Journal of Advanced Nursing 44, no. 3 (2003): 318326; B. Hayslip Jr. and P. L. Kaminski, “Grandparents Raising Their Grandchildren: A Review of the Literature and Suggestions for Practice,” The Gerontologist 45, no. 2 (2005): 262-269.

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Michael K. Gusmano 16. T. R. Marmor, J. L. Mashaw, and P. L. Harvey, America’s Misunderstood Welfare State: Persistent Myths, Enduring Realities (New York: Basic Books, 1990). 17. Centers for Medicaid & Medicaid Services, available at (last visited April 4, 2014). 18. D. Stone, Policy Paradox and the Art of Political Decision Making, 4th ed. (New York: Norton and Co., 2009): at 183. 19. C. Propper, “Expenditure on Health Care in the UK: A Review of the Issues,” CMPO Working Paper Series No. 01/030 (2001). 20. M. Moon, Medicare Now and in the Future, 2nd ed. (Washington, D.C.: Urban Institute Press, 1996); P. Zweifel, S. Felder, and M. Meier, “Ageing of Population and Health Care Expenditure: A Red Herring?” Health Economics 8, no. 6 (1999): 485-496. 21. L. R. Shugarman, D. E. Campbell, C. E. Bird, J. Gabel, T. A. Louis, and J. Lynn, “Differences in Medicare Expenditures During the Last 3 Years of Life,” Journal of General Internal Medicine 19, no. 2 (2004): 127-135. 22. E. S. Fisher, D. E. Wennberg, and T. A. Stukel et al., “The Implications of Regional Variations in Medicare Spending. Part 1: The Content, Quality, and Accessibility of Care,” Annals of Internal Medicine 138, no. 4 (2003): 273-287. 23. J. M. Teno, V. Mor, and N. Ward et al., “Bereaved Family Member Perceptions of Quality of End-of-Life Care in U.S. Regions

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with High and Low Usage of Intensive Care Unit Care,” Journal of American Geriatrics Society 53, no. 11 (2005): 1905-1911. 24. A. E. Barnato, B. M. Herndon, D. L. Anthony, P. M. Gallagher, J. S. Skinner, J. P. W. Bynum, and E. S. Fisher, “Are Regional Variations in End-of-Life Care Intensity Explained by Patient Preferences? A Study of the US Medicare Population,” Medical Care 45, no. 5 (2007): 386-393. 25. G. R. Anderson, U. E. Reinhardt, P. S. Hussey, and V. Petrosyan, “It’s the Prices Stupid: Why the United States Is So Different from Other Countries,” Health Affairs 22, no. 3 (2003): 89-105; J. Skinner and J. Wennberg, “How Much Is Enough? Efficiency and Medicare Spending in the Last Six Months of Life,” in D. Cutler, ed., The Changing Hospital Industry: Comparing For-Profit and Not-for-Profit Institutions (Chicago: University of Chicago Press, 2000): at 169-194. 26. Id. (Anderson et al.). 27. See Gusmano et al., supra note 13. 28. D. Callahan, “Must We Ration Health Care for the Elderly?” Journal of Law Medicine & Ethics 40, no. 1 (2012): 10-16. 29. M. K. Gusmano, “End of Life Care for Patients with Dementia in the United States: Institutional Realities,” Health Economics Policy and Law 7, no. 4 (2012): 485-498.

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Is it reasonable to deny older patients treatment for glioblastoma?

Is it ever fair to limit treatment for diseases like glioblastoma for which prognosis is poor? Because resources are finite and health care spending l...
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