FOR JANE THE TUTOR

the graying of america: challenges and controversies spring 2012 17

Can Health Care Rationing Ever Be Rational? David A. Gruenewald

Case Study Mr. M. was a 77-year-old decisionally incapacitated long-term nursing home resident with chronic schizo- phrenia who was admitted to the hospital with a bacterial pneumonia. His past medical history was notable for deteriorating functional status over the past 2-3 years, urinary retention requiring chronic indwelling bladder catheterization, and two recent hospitalizations for urinary tract infections leading to sepsis. He developed respiratory failure soon after admission and was intubated and placed on mechani- cal ventilation. Follow-up studies suggested worsen- ing pneumonia and acute respiratory distress syn- drome (ARDS), as well as worsening kidney function. The patient was unable to participate in any decision making. His guardian requested that cardiopulmo- nary resuscitation and all other intensive care be pro- vided if necessary, including dialysis should Mr. M.’s kidney failure continue to worsen. After five days of mechanical ventilation, the patient was weaned from the ventilator and extubated. The palliative care ser- vice was consulted following the extubation; his criti- cal care team questioned whether it would be appro- priate to re-intubate the patient if he again developed respiratory failure. The palliative care team contacted Mr. M.’s brother, his only living relative, who felt the patient’s quality of life was poor and believed the patient would not want aggressive medical care. The staff at his nursing home was contacted, as well as the patient’s mental health case manager, who had all known Mr. M. for many years. All concurred with his brother’s assessment. Additionally, the nursing home staff said that Mr. M. would not be able to return there if the plan was to continue more intensive medical management of his worsening health conditions. Hos- pice care was discussed with these parties, and it was thought that choosing hospice would best represent the patient’s wishes under the circumstances. The pal- liative care team contacted his guardian and explained the patient’s medical situation and its implications for his ongoing care (including the need for physical restraints, loss of stable nursing home placement, and confinement to the acute care hospital environment for the duration of his acute illness). Based on this new

David A. Gruenewald, M.D., is an Associate Professor of Medicine at the University of Washington School of Medi- cine in Seattle, Washington, and the Associate Director of the Palliative Medicine Fellowship at the University of Wash- ington. He is the Medical Director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System in Seattle, Washington. He received his Bachelor of Arts (B. A.) degree from Reed College in Portland, Oregon, and his Medical Doctor (M.D.) degree from the University of Chicago/Pritzker School of Medicine in Chicago, Illinois.

18 journal of law, medicine & ethics

S Y M P O S I U M

information, his guardian concurred with the pallia- tive care team’s recommendation for hospice care. The patient’s respiratory status deteriorated again soon after that, and he died comfortably two days later on the medical ward without returning to the intensive care unit.

Introduction

“ The vast machinery of modern medicine, which can be heroically invoked to save a premature baby, when visited upon an equally vulnerable and failing great-grandmother, may not save her life so much as torturously and inhumanely complicate her dying.”

-Dennis McCullough1

Many Americans have come to expect that modern medicine will continually increase both the quality and the quantity of their lives. These expectations are fuelled by reports in the popular media extolling the benefits of the latest medical discoveries. When it comes to their health care, many Americans living today feel there should be no boundaries or limita- tions on their access to the best providers and the lat- est technologies.2 Nevertheless, increasing limitations on health care expenditures are likely to occur sooner rather than later. The United States spends over 16% of its GDP on health care, 2.5 times more per person than any other industrialized country.3 The percent- age of GDP allocated to health care is increasing at the expense of other social needs such as education, pub- lic safety, and environmental protection. If costs con- tinue increasing at the current rate, a fifth of GDP will go to health care by 2018. Federal Reserve Chairman Ben Bernanke warned in 2008 that health care spend- ing was eroding the nation’s overall economic health.4 Over the last 10 years health care insurance premiums have increased by 131%, while wages have grown 38% and inflation has increased by 28%.5 With a projected massive increase in the population of older people who are the heaviest users of health care, a shrinking base of younger taxpayers, continually rising expectations

for living longer and better, enormous expenditures of national capital to rescue the financial system and fund wars, and global resource limits, our current health care spending trajectory is simply unsustainable.

The history of attempts to control health care costs in the United States through explicit rationing of ser- vices (i.e., direct denial of publicly funded health care benefits occurring when insufficient resources are available for all who might benefit) is not encourag- ing. Although many people accept the necessity of explicit rationing in theory, they tend to reject ration- ing when it comes to their own health care or the care of people they are concerned about.6 Indeed, when explicit health care rationing occurred at the point of service under managed care plans in the 1990s and early 2000s, Americans reacted strongly and nega- tively to these restrictions.7 The current public debate

on health care reform is notable for an unprecedented level of rumors, fear-mongering, and misinformation, and much of it is spread at lightning speed via the Internet. This has contributed to confusion and fear of health care reform efforts on the part of the American public, and to heightened concerns about a possible hidden agenda to ration health care to older Ameri- cans.8 Given this recent history, many U.S. health care policymakers have understandably concluded that serious discussions of health care rationing cannot occur in a political context.9

By comparison to explicit rationing, implicit ration- ing based on inability to pay seems attractive because no responsibility or blame can be attached to any par- ticular person or organization, but at the same time it is capricious and discriminatory.10 Although most Americans have some choice in the selection of public or private health plans, for many poor, near-poor, and self-employed people, the choices may be limited or non-existent.

The consequences of implicit rationing by inability to pay have been disastrous for many of the 46 million Americans who have no health insurance (i.e., 15% of the population) and the 25 million who have inade- quate coverage.11 Health outcomes for uninsured peo- ple are significantly worse than for insured people: one

With a projected massive increase in the population of older people who are the heaviest users of health care, a shrinking base of younger taxpayers, continually

rising expectations for living longer and better, enormous expenditures of national capital to rescue the financial system and fund wars, and global resource

limits, our current health care spending trajectory is simply unsustainable.

the graying of america: challenges and controversies spring 2012 19

David A. Gruenewald

study found that uninsured adults have a 25% greater chance of dying than insured adults.12 Noting that the U.S. is the only major industrialized nation that does not provide universal health coverage to its citizens, many believe that our society has a moral obligation to provide some level of basic health care to all regard- less of ability to pay.13 Universal health care coverage would help to correct the worst inequities of our cur- rent system, but improved efficiency in health care delivery and some form of explicit rationing will be required in order to pay for the additional coverage.14 Many would agree that a fairer, above-board approach to allocating health care resources grounded in solid ethical practices would be preferable to implicit ration- ing that lacks such an ethical foundation. However, for the reasons noted above, pressure to cut health care costs either through explicit or implicit rationing will become increasingly intense unless ways acceptable to the public are found to improve the efficiency of the system or to moderate the perceived demand for health care services. Accordingly, approaches must be found to address both the supply side (through fair allocation of health care resources) and the demand side of the equation, and to find greater efficiencies in care delivery.

Age as a Basis for Health Care Rationing It has been argued that explicit age-based health care rationing is required to control costs.15 This belief is understandable; people over age 85 are the nation’s fastest growing age group, and are the heaviest users of health care services. In one study, if health care costs for 25-29-year-olds were indexed at 100, then expen- ditures for the 65-69-year-old group were 387.6, and for those aged 85-89 years, 614.2.16 About a third of Medicare expenditures are spent in the last year of life, much of it for aggressive life-sustaining care. However, serious concerns have been raised about the effects of rationing by age as an official policy, and whether such a policy would ever be accepted by modern society.17

Examples of ethical arguments for age-based rationing of health care include the “fair innings” argument, which holds that priority for scarce health care resources should be given to younger people who deserve the opportunity to live as many years as older people who have already lived most of their anticipated lifespan. This argument is intuitively appealing: if only one ICU bed were available and two people of differing ages with similar capacity to benefit and equal need were being considered for the bed, then it would seem fair to give the bed to the younger person who has had less opportunity to live as many years.18 A second example, the “natural lifespan” argument, asserts that an important goal of health care is to avert premature

death, but when a natural lifespan has been lived, then the goal should become the relief of suffering rather than life prolongation. It is argued that using expen- sive medical technology to prolong the lives of older people harms the health needs of other groups and harms social needs other than health care.19

However, for each of the arguments in favor of age- based rationing, vehement ethical objections and counter-arguments have been raised, including the objection that all people have equal worth regardless of their age, disability status, or other factors outside their own control; that only the individual can judge the value of his own life, and that it cannot be assumed an older person no longer has important life goals that he wishes to achieve.20 Additionally, it would be extremely difficult to determine a specific age beyond which life-prolonging care would no longer be pro- vided, and age-based rationing discriminates against women, who live longer on average than men.

After several decades of strong ethical disagree- ments on age-based rationing, it seems highly unlikely that rationing by age as an official policy would ever be broadly accepted. Furthermore, regardless of the ethi- cal merits of arguments favoring rationing of health care by age, such arguments do not determine which policies and practices would be fair, or whether they could be implemented in practice. In light of these and other longstanding disagreements on principles, what approaches to health care cost control might be broadly acceptable in our pluralistic and independent- minded society, and at the same time achieve better health outcomes for our population at large?

Creating an Open and Accountable Process to Ensure That Decisions to Limit Health Care Services Are Fair and Reasonable Establishing a fair process for health care priority set- ting will be easier than agreeing on principles. In rec- ognition of this reality, a middle way between explicit and implicit rationing known as “accountability for reasonableness” has been suggested as a process to reach agreement on what is fair and legitimate.21 A fair rationing process, as for implicit rationing, would not require that principles for rationing be estab- lished in advance. However, in common with explicit approaches to rationing, there would be openness about the rationale that all affected parties can agree is relevant. This process would allow for reasonable disagreement on principles governing the setting of priorities that would be expected in our pluralistic society. There will be disagreements on many issues, including how much to prioritize the needs of the most disadvantaged people, whether to give younger people who have not had a “fair innings” higher prior-

20 journal of law, medicine & ethics

S Y M P O S I U M

ity for health care than older people, and whether to apply market-based approaches or central regulation to allocate resources.

The key elements of a fair accountability for reason- ableness process include full transparency about the grounds for decisions, decision making based on cri- teria that stakeholders agree are relevant to meeting health needs fairly, and procedures to revise decisions in light of new evidence or concerns. Furthermore, the agreed upon decision-making procedures must be both practically feasible and enforceable.22

Maximizing the Efficiency of Health Care Delivery and Minimizing Patient Harm from Inappropriate Medical Interventions Alongside the development of a fair process for alloca- tion of health care resources, economic approaches are needed to minimize wasteful and inappropriate health care spending. About a third of U.S. medical costs are for services that do not measurably improve health outcomes or health care quality.23 Furthermore, strik- ing regional variations in the cost of health care have been documented by the Dartmouth Atlas of Health Care, an ongoing project that uses Medicare data to examine variations in the way health care is provided. These studies show that the likelihood that patients with advanced cancer will spend their final days in a costly intensive care unit or at home depends largely on where they live and the hospital where they receive their care.24 Regional differences in health care spend- ing reflect differences in practice patterns rather than differences in population health or price of services, with more inpatient- and specialist-oriented patterns of care in regions with high per capita expenditures.25

Policymakers have sought approaches to health care cost control with the potential to bring groups with divergent political views and large stakeholders together. It has been difficult to find common ground between those favoring governmental regulation as the best way to control costs — for example, by lim- iting the supply of medical technology and facilities; setting payment rates; or allowing government to negotiate prices with the health care industry — and those favoring market forces, e.g., through competi- tion between health plans and informed choices by health care consumers.26 Concerns remain regard- ing whether market-style approaches can accomplish fair allocation of health care resources in light of the extent to which health care services vary in necessity, demand, and patients’ sensitivity to price.27 However, in a widely read essay, Atul Gawande observed that the most important decision we face in choosing how to control health care costs is not whether we create a single-payer system or a mixture of public and private

insurance — it is whether we choose to reward leaders who put the needs of patients first rather than profits first.28

Studies of the cost-effectiveness of medical inter- ventions demonstrate a huge range of incremental cost per quality-adjusted life years (QALY) gained, ranging from a negative net cost to millions of dollars per QALY gained, leading the American College of Physicians, among others, to call for cost-effectiveness analysis to be a priority for comparative effectiveness research.29 Some believe that health care costs can be controlled at the same time health outcomes are improved if inefficient providers can be induced to adopt cost-effective health practices instead of cost- ineffective ones. However, others have raised concerns about cost-effectiveness research being used by the government to justify health care rationing by lim- iting use of treatments at the margin, i.e., expensive treatments with small benefits. Still others feel that cost-effectiveness arguments need not be used to con- tain costs and that instead, thorough evaluation will reveal that some interventions are of no benefit, or even harmful.30

Receiving more health care services is not necessar- ily better, and may in many cases be worse.31 Higher intensity health care may result in net harm to patients in several ways. For example, overuse of diagnostic testing yields false positive results and exposes patient to unnecessary treatments and emotional harms such as anxiety related to testing and treatment; involve- ment of more specialists results in discontinuity of care; and unnecessary hospitalization exposes patients to iatrogenic infections.32 Additionally, indirect harms result from the opportunity cost of excessive and wasteful health care spending that could instead be spent in other ways to promote health or well-being of the involved population. Providing an expensive intervention of marginal value to one patient may deprive many others of less expensive but more effec- tive care — a form of implicit rationing.33 Expendi- tures to promote health might be more efficiently used in areas other than health care, and indirect harm may result from the diversion of resources away from other determinants of health, such as education, jobs, and income.34

Now, systems reforms are receiving renewed atten- tion as a way to contain costs and improve care that may be broadly acceptable politically, including creation of “smarter,” evidence-based health care systems; new models for health care delivery such as the patient- centered medical home and accountable care organi- zation models; and payment incentives such as “pay for performance” to improve quality and lower costs.35 The patient-centered medical home model aims to create

the graying of america: challenges and controversies spring 2012 21

David A. Gruenewald

a strong primary care foundation within health care systems, while the goal of the accountable care organi- zation model is to align incentives and accountability for providers across the care continuum.36 Based on evidence that a strong focus on primary care improves care quality while lowering costs, the patient-centered medical home model emphasizes a coordinated, com- prehensive care approach while incorporating elec- tronic medical information systems, chronic disease management across populations, continuous quality improvement, improved reimbursement for primary

care, and rewards for high performance. Account- able care organizations are provider-driven organiza- tions responsible for a full continuum of care as well as the costs and quality of care for a discrete patient population. These organizations might take several forms, including multispecialty practice groups either with or without hospital ownership, large integrated health care delivery systems, independent practice associations, virtual interdependent networks of phy- sician practices, or physician–hospital organizations. Accountable care organizations would help to address concerns regarding the implementation of patient- centered medical homes such as establishing the financial arrangements to allow primary care provid- ers to benefit financially from improved performance, and providing the capability to measure and monitor care quality and to prevent potential overuse or under- use of medical services.37 These models of care may provide a more coordinated approach to health care that facilitates better and more cost-effective end-of- life care, while creating incentives for physicians and systems to put the needs of their patients first.

Should Clinicians Be Expected to Ration Health Care at the Bedside? It has been observed that global budgeting, which constrains the availability of resources such as operat- ing theatre time or imaging equipment, relies largely

on implicit rationing at the point of service. Such clini- cal priority setting has been acknowledged by some as inevitable.38 In my experience, surgeons and others who manage the clinical use of scarce resources (e.g., organs for transplant) are more comfortable with this role than internists or intensivists. Although many cli- nicians are reluctant to play a role in bedside ration- ing,39 studies have reported that physicians can accept a role in resource allocation when necessary, that they can ration using clinical criteria such as severity of ill- ness and prognosis, and that the public expects physi-

cians to provide leadership in determining resource- allocation policies.40 And even ethicists who argue vigorously against rationing health care services based on age may agree that consideration of a person’s abil- ity to benefit medically from an intervention is accept- able.41 In practice, clinicians are obliged to make their best recommendations for care to patients and their families, who are often ill prepared to make decisions on what should be done. The potential danger is that clinical resource allocation and priority setting will be done haphazardly at best, reflect the personal biases of the clinician, or even be based on judgmental or prejudicial behavior. To safeguard patients against these hazards, clinicians should base such decisions on guidelines grounded in the best available evidence where possible, although clear guidance is not always available. Much more work is needed to improve the accountability and establish the legitimacy of health care resource allocation decisions at both the bedside level and at the level of health care systems.

Encouraging Approaches That Foster Excellent End-of-Life Care: The Demand Side of the Equation All too often medical care intended to treat serious acute illnesses has a markedly negative impact on the way many frail older people spend their last months or years of life. Many medical interventions may be

Accountable care organizations would help to address concerns regarding the implementation of patient-centered medical homes such as establishing the

financial arrangements to allow primary care providers to benefit financially from improved performance, and providing the capability to measure and monitor care quality and to prevent potential overuse or underuse of medical services.

These models of care may provide a more coordinated approach to health care that facilitates better and more cost-effective end-of-life care, while creating incentives for physicians and systems to put the needs of their patients first.

22 journal of law, medicine & ethics

S Y M P O S I U M

marginally beneficial and associated with substan- tial burdens, especially in people near the end of life. While modern medicine excels in managing acute medical crises, it is less successful in the manage- ment of chronic diseases and advancing frailty. Geri- atrician Dennis McCullough observes that by apply- ing standard medical approaches to the care of frail older patients near the end of life, some are subjected to “Death by Intensive Care,” spending their last days sedated, in a state of delirium and hooked up to life- support machines. All too commonly, “elders suffer the accumulating burdens of illness and exhausting medi- cal regimens that extract all their available energy and time, leaving nothing left for living beyond a ‘medical- ized’ life.”42

Some question whether physicians can determine which of their very ill patients will benefit from expen- sive care and which will die regardless of the care they receive, and remain unconvinced that substantial health care cost savings near the end of life are actu- ally achievable without harming patients.43 However, it is clear that patients near the end of life often receive aggressive yet unwanted medical interventions. One study found that only 30% of hospitalized patients older than 80 years wanted care to prolong life, yet 63% received life-prolonging treatments such as car- diopulmonary resuscitation, tube feeding, mechanical ventilation, and dialysis.44 Although this unwanted use of medical interventions is extremely common and rarely is there ill intent, much more must be done to prevent this sort of harm to patients. Dr. Daniel Ber- wick commented that “using unwanted procedures in terminal illness is a form of assault. In economic terms, it is waste.” Berwick notes that “several tech- niques, including advance directives and involvement of patients and families in decision-making, have been shown to reduce inappropriate care at the end of life, leading to both lower cost and more humane care.”45 Advance care planning is good medicine. A recent randomized controlled trial found that advance care planning improved end-of-life care and patient and family satisfaction and reduced stress, anxiety, and depression in surviving relatives.46 Additionally, con- versations about the goals of care between patients with advanced cancer and their physicians are associ- ated not only with better quality of life while dying, but also with fewer life sustaining procedures and lower health care costs in their final week of life.47 In shared decision making, physicians work with patients and families to consider the benefits and burdens of inter- ventions and to make health care decisions, thereby reducing the risk that patients will receive unwanted medical interventions. However, the traditional model of shared decision making assumes that patients and

families can evaluate options with their physicians systematically, apply the available medical evidence dispassionately to possible clinical scenarios, consider the potential benefits and burdens of each option, assess the likelihood of potential outcomes, and agree on clear and rational decisions. Increasingly, it is being appreciated that patients and families do not make decisions in the same way that physicians do.48 By con- trast, decisions made by patients and their families are affected by a host of other factors including their prior experiences of health care, the stresses associated with acute illness, and fears of future complications, which may give the impression that they are “in denial,” or that their hopes are “unrealistic.”49

Newer models of shared decision making have been proposed to take into account the dilemmas patients and their families often face, such as the choice between two unacceptable outcomes such as death and long-term debilitation, and the difficulty in pre- dicting what they both would want in future circum- stances. In one such paradigm, the physician’s role in guiding decisions will change over time in response to changes in the patient’s health and factors such as the predictability of the clinical outcome or the chance of the patient returning to an acceptable quality of life. Another model offers some steps clinicians can take to prepare patients and their surrogate decision mak- ers to make the best possible medical decisions in the moment the decisions are required.50 Although these and other refinements in models of shared decision making still require testing and validation, hopefully they will help improve patient-physician communi- cation and decision making and ultimately minimize unwanted and often costly medical interventions.

Despite the potentially large benefits of some form of shared decision making, the majority of studies show that most physicians engage in very little of it.51 This is especially problematic in light of the fact that older patients may be less likely than younger people to ask clinicians for medical information, and more apt to accept unquestioningly the advice of their physicians.52 Fortunately, examples are available to demonstrate that it is possible at the regional level to provide patients with more information about their health status and to give them a range of options for care in addition to aggressive medical care as usual. The regions that are most successful in accomplishing these goals typically have community-level consensus about the importance of asking about and document- ing end-of-life preferences; they support training phy- sicians to have these conversations with patients; and they have put systems in place to support palliative and hospice care.53 Another factor that contributes to inappropriate health care spending is the clinician’s

the graying of america: challenges and controversies spring 2012 23

David A. Gruenewald

own emotional reaction to the decisions facing their patients, especially when the outcomes of care are uncertain and the consequences are dire. Like patients and families, when the outcomes of medical interven- tion are hard to predict, physicians may be concerned that in the future they will regret or feel guilty for not having done everything possible for the patient. Physi- cians may wonder if there is just “one more thing” that can be done, which may lead them to advise patients and families to continue trying interventions with a small likelihood of benefit, or to frame a choice in a way that makes it more likely they will opt for con- tinuing aggressive care. Physicians may also feel that if aggressive treatment is stopped, then it will mean that all the effort and money expended to that point was wasted.54 Moreover, physicians may bring unrec- ognized and poorly understood countertransference issues to their interactions with patients that can lead to inappropriate treatment recommendations. By being aware of these potential pitfalls, clinicians can consider whether their advice to patients and their families truly honors what patients would want for themselves under the circumstances.

As a palliative medicine physician and geriatrician, many times I have heard dying and frail older patients say, “I just want to go home,” or “I don’t want to be kept alive on machines,” or “If I had known then what I know now, I never would have started the treat- ment.” As in the case of Mr. M., further exploration of the patients’ or their surrogates’ concerns often reveals that they would rather be made as comfortable as pos- sible and allowed to live at home even if that means forgoing treatments that could prolong their lives. For these patients, the apparent “demand” for medically intensive health care is false: it is simply that no one took the time to find out what they really wanted, nor were they offered a choice of anything more suited to their needs. By attending to patients’ understanding of the clinical situation and tailoring communications to their needs, providers can help patients assess the benefits and burdens of medical interventions, and develop care plans that best meet their needs. When aggressive life-prolonging treatments would more likely prolong the dying process than enhance the quality of a person’s remaining life, palliative medicine and geriatrics providers often recommend withhold- ing or withdrawing life-sustaining treatments. These recommendations are often accepted if not welcomed by patients, as well as by their surrogate decision mak- ers who may feel burdened by the responsibility of decision making for their loved one. In many but not all cases, these goal-setting and care-planning discus- sions result in avoidance of unwanted and expensive

interventions, and placement of the patient in a more comfortable care environment.

Many frail elders, patients, and their families may wish to consider “slow medicine” as an alternative to medical care as usual (or its cousin hospice care when appropriate). Slow medicine is a gentler, less aggres- sive care approach intended to ease the inevitable, irreversible decline of advanced age, rather than to attempt to prolong life at the expense of quality of life. McCullough describes slow medicine as a strategy “where family, friends, and neighbors team up with an elder and with health-care providers — including vis- iting nurses and other home-based care providers — to improve the quality of care and avoid inappropriate, sometimes harmful care.”55 With slow medicine, the focus is on excellent chronic care — attending to the day-to-day needs of the patient “by offering emotional support and social stimulation, supplying better nutri- tion, and making sleeping, moving, bathing, dressing, and voiding easier.”56 Families assisting their loved ones in the slow medicine approach must raise the dif- ficult subjects of advance care planning and surrogate decision making with the patient’s physician, before an acute crisis is upon them. Questions about the patient’s ability to drive and to manage at home must be addressed, and strategies devised to compensate for problems that arise with independent function- ing. Plans must be made in the event the frail elder becomes unable to manage at home any longer, and placement in a more supportive living environment is needed. Meanwhile, the elder’s regimen of medica- tions and other medical tests and treatments must be subjected to regular, critical scrutiny; and time-tested, low-risk interventions are often preferred over high- tech but more exhausting regimens (e.g., home fecal occult blood testing vs. colonoscopy). Slow medicine is very hard work for families and other concerned helpers who struggle to care for their aging and frail loved ones. Most long-term care is uncompensated care, falling on the backs of family members and sig- nificant others. For patients and their families who lack the time and resources to care for their loved ones at home, slow medicine may not be possible. One of the opportunity costs of spending so much on usual care to prolong life is that correspondingly less money remains to support home care by family and other informal caregivers providing slow medicine.

To make it possible for more elders who want slow medicine to have it, not only do we need more support for family caregivers, we also need to pay providers to have conversations with patients about their care preferences. Ideally, these conversations about goals of care near the end of life would happen over a longer period of time with a trusted primary care provider.

24 journal of law, medicine & ethics

S Y M P O S I U M

And more clinicians need to be trained how to have these conversations effectively in a variety of settings, from primary care clinics to nursing homes to intensive care units. Palliative care physicians and geriatricians may play a valuable role in training other clinicians to have care planning conversations, although there are still far too few practitioners of either specialty, and too few in positions to train others. However, to ensure that advance care planning and slow medicine do not become additional tools to ration health care covertly, we must take care not to use either as cost containment strategies.57 They are appropriately used only to ensure that the patient’s wishes for care are understood and honored.

We now know that most Americans over the age of 80 years prefer comfort-oriented care over measures intended to extend life.58 More must now be done to ensure that medical care we provide to our elders con- forms to the informed choices of patients and their families. And in doing the right thing for them, we may also find that the costs of unwanted and inappro- priate health care interventions go down.

Note The opinions expressed herein are those of the author and are not those of the Department of Veterans Affairs Health Care System.

References 1. D. McCullough, “Grand Rounds: Slow Medicine,” Dartmouth

Medicine Magazine 32, no. 3 (Spring 2008), available at <http://dar tmed.dar tmouth.edu/spring08/html/grand_ rounds.php> (last visited November 16, 2011).

2. A. Owen-Smith, J. Coast, and J. Donovan, “‘I Can See Where They’re Coming From, But When You’re on the End of It…You Just Want to Get the Money and the Drug’: Explaining Reac- tions to Explicit Healthcare Rationing,” Social Science and Med- icine 68, no. 11 (2009): 1935-1942; D. Mechanic, “The Rise and Fall of Managed Care,” Journal of Health and Social Behavior 45, Supp. (2004): 76-86.

3. J. Greene, “Who Will Get Care?” Trustee 61, no. 9 (2008): 8-11.

4. Id. 5. D. Altman, “Simple Arithmetic,” Pulling It Together, no. 24,

September 15, 2009, available at <http://www.kff.org/pullin- gittogether/091509_altman.cfm> (last visited November 16, 2011).

6. See Owen-Smith et al. and Mechanic, supra note 2; D. Calla- han, “Cost Control: Time to Get Serious,” New England Journal of Medicine 361, no. 7 (August 13, 2009): e10.

7. See Mechanic, supra note 2. 8. P. Barry, “Health Care Reform: The Assault on Truth,” AARP

Bulletin 50, no. 7 (September 2009): 12-16. 9. See Mechanic, supra note 2. 10. D. Callahan, “Symbols, Rationality, and Justice: Rationing

Health Care,” American Journal of Law & Medicine 18, nos. 1 and 2 (1992): 1-13; N. S. Jecker and R. A. Pearlman, “Ethical Constraints on Rationing Medical Care by Age,” Journal of the American Geriatrics Society 37, no. 11 (1989): 1067-1075.

11. See Greene, supra note 3. 12. K. Trotochaud, “Ethical Issues and Access to Healthcare,” Jour-

nal of Infusion Nursing 29, no. 3 (2006): 165-170.

13. See Callahan, supra note 10; N. S. Jecker and R. A. Pearlman, “An Ethical Framework for Rationing Health Care,” Journal of Medicine and Philosophy 17, no. 1 (1992): 79-96.

14. See Callahan, supra note 10. 15. D. Callahan, Setting Limits (New York: Simon & Schuster,

1987): at 23. 16. Productivity Commission, Economic Implications of an Age-

ing Australia, April 12, 2005, at 148, 155, available at <http:// www.pc.gov.au/projects/study/ageing/docs/finalreport> (last visited November 16, 2011).

17. R. ter Meulen, “Are There Limits to Solidarity with the Elderly?” Hastings Center Report 24, no. 5 (1994): 36-38.

18. C. M. Clarke, “Rationing Scarce Life-Sustaining Resources on the Basis of Age,” Journal of Advanced Nursing 35, no. 5 (2001): 799-804.

19. See Callahan, supra note 15, at 118. 20. S. Giordano, “Respect for Equality and the Treatment of the

Elderly: Declarations of Human Rights and Age-Based Ration- ing,” Cambridge Quarterly of Healthcare Ethics 14, no. 1 (2005): 83-92; J. G. Evans, “The Rationing Debate: Rationing Health Care by Age: The Case Against,” BMJ 314, no. 7083 (March 15, 1997): 822.

21. N. Daniels, Editorial, “Accountability for Reasonableness: Establishing a Fair Process for Priority Setting Is Easier Than Agreeing on Principles,” BMJ 321, no. 7272 (November 25, 2000): 1300-1301.

22. Id. 23. E. S. Fisher, Editorial, “More Medicine Is Not Better Medicine,”

New York Times, December 1, 2003. 24. M. McKinney, Editorial, “Where You Live = How You Die,”

Modern Healthcare 40, no. 47 (2010): 6-8. 25. E. S. Fisher, Editorial, “Medical Care – Is More Always Better?”

New England Journal of Medicine 349, no. 17 (2003): 1665- 1667.

26. D. Altman, “The ‘Third School’ for Controlling Health Care Costs?” Pulling It Together, no. 27 (October 23, 2009), avail- able at <http://www.kff.org/pullingittogether/102909_altman. cfm> (last visited November, 2011).

27. S. D. Gould and N. M. Baum, Editorial, “Where Are We in the Rationing Debate? Improved Tools and Public Participa- tion Can Inform Fair Systems,” BMJ 337, no. 7675 (October 18, 2008): 883-884.

28. A. Gawande, “The Cost Conundrum: What a Texas Town Can Teach Us about Health Care,” New Yorker, June 1, 2009.

29. M. C. Weinstein and J. A. Skinner, “Comparative Effectiveness and Health Care Spending – Implications for Reform,” New England Journal of Medicine 362, no. 5 (2010): 460-465.

30. Id. 31. See Gawande, supra note 28. 32. C. M. Kilo and E. B. Larson, Editorial, “Exploring the Harmful

Effects of Health Care,” JAMA 302, no. 1 (2009): 89-91; see Fisher, supra note 25.

33. See Gawande, supra note 28; id. (Kilo and Larson); C. Donald- son, A. Bate, P. Brambleby, and H. Waldner, “Moving Forward on Rationing: An Economic View,” BMJ 337, no. 7675 (October 18, 2008): 905-906.

34. See Kilo and Larson, supra note 32. 35. See Altman, supra note 26. 36. D. R. Rittenhouse, S. M. Shortell, and E. S. Fisher, “Perspective:

Primary Care and Accountable Care – Two Essential Elements of Delivery-System Reform,” New England Journal of Medicine 361, no. 24 (2009): 2301-2303.

37. Id. 38. See Gould and Baum, supra note 27. 39. D. Strech, G. Persad, G. Marckmann, and M. Danis, “Are Physi-

cians Willing to Ration Health Care? Conflicting Findings in a Systematic Review of Survey Research,” Health Policy 90, no. 2 (2009): 113-124.

40. See Gould and Baum, supra note 27. 41. See Giordano, supra note 20; see Evans, supra note 20. 42. See McCullough, supra note 1.

the graying of america: challenges and controversies spring 2012 25

David A. Gruenewald

43. M. Feldstein, Editorial, “Obama’s Plan Isn’t the Answer,” Wash- ington Post, July 28, 2009.

44. E. Somogyi-Zalud, Z. Zhong, M. B. Hamel, and J. Lynn, “The Use of Life-Sustaining Treatments in Hospitalized Persons Aged 80 and Older,” Journal of the American Geriatrics Society 50, no. 5 (2002): 930-934.

45. R. Pear, “Obama Returns to End-of-Life Plan that Caused Stir,” New York Times, December 25, 2010.

46. K. M. Detering, A. D. Hancock, M. C. Reade, and W. Silvester, “The Impact of Advance Care Planning on End of Life Care in Elderly Patients: Randomised Controlled Trial,” BMJ 340, no. 7751 (2010): c1345; id. (Pear).

47. A. A. Wright, B. Zhang, A. Ray, J. W. Mack, E. Trice, T. Balboni, S. L. Mitchell, V. A. Jackson, S. D. Block, P. K. Maciejewski, and H. G. Prigerson, “Associations between End-of-Life Dis- cussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment,” JAMA 300, no. 14 (2008): 1665-1673; B. Zhang, A. A. Wright, H. A. Huskamp, M. E. Nilsson, M. L. Maciejewski, C. C. Earle, S. D. Block, P. K. Maciejewski, and H. G. Prigerson, “Health Care Costs in the Last Week of Life: Associations with End-of-Life Conversa- tions,” Archives of Internal Medicine 169, no. 5 (2009): 480- 488.

48. N. E. Goldstein, A. L. Back, and R. S. Morrison, “Titrating Guidance: A Model to Guide Physicians in Assisting Patients and Family Members Who Are Facing Complex Decisions,” Archives of Internal Medicine 168, no. 16 (2008): 1733-1739.

49. Id.; G. B. Chapman and A. S. Elstein, “Cognitive Processes and Biases in Medical Decision Making,” in G. B. Chapman and F. A. Sonnenberg, eds., Decision Making in Health Care: Theory,

Psychology, and Applications (New York: Cambridge Univer- sity Press, 2000): at 183-210.

50. See Goldstein et al., supra note 48; R. L. Sudore and T. R. Fried, “Redefining the ‘Planning’ in Advance Care Planning: Preparing for End-of-Life Decision Making,” Annals of Internal Medicine 153, no. 4 (2010): 256-261.

51. J. L. Hanson, Editorial, “Shared Decision Making: Have We Missed the Obvious?” Archives of Internal Medicine 168, no. 13 (2008): 1368-1370.

52. S. Turk-Charles, B. E. Meyerowitz, and M. Gatz, “Age Differ- ences in Information-Seeking among Cancer Patients,” Inter- national Journal of Aging and Human Development 45, no. 2 (1997): 85-98; V. Jenkins, L. Fallowfield, and J. Saul, “Infor- mation Needs of Patients with Cancer: Results from a Large Study in UK Cancer Centres,” British Journal of Cancer 84, no. 1 (2001): 48-51; Z. Chouliara, N. Kearney, D. Stott, A. Molas- siotis, and M. Miller, “Perceptions of Older People with Cancer of Information, Decision Making and Treatment: A Systematic Review of Selected Literature,” Annals of Oncology 15, no. 11 (2004): 1596-1602.

53. See McKinney, supra note 24. 54. See Goldstein et al., supra note 48. 55. See McCullough, supra note 1. 56. Id. 57. D. Callahan, “Controlling the Costs of Health Care for the

Elderly – Fair Means and Foul,” New England Journal of Medi- cine 335, no. 10 (1996): 744-746.

58. See Somogyi-Zalud et al., supra note 44.

Copyright of Journal of Law, Medicine & Ethics is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.