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Contents - JLME - 2012 Volume 40: 1
Table of Contents
  1. Table Of Contents
Introduction
  1. Introduction: The Graying of America: Challenges and Controversies
Symposium Articles
  1. Must We Ration Health Care for the Elderly?
  2. Can Health Care Rationing Ever Be Rational?
  3. Social Justice, Health Disparities, and Culture in the Care of the Elderly
  4. Looking for Better Health in All the Wrong Places: The Road to "Equality" Hits a Dead End
  5. Testing the Medical Covenant: Caring for Patients with Advanced Dementia
  6. Doing the Right Thing: A Geriatrician's Perspective on Medical Care for the Person with Advanced Dementia
  7. Physicians Should "Assist in Suicide" When It Is Appropriate
  8. Are the Distinctions Drawn in the Debate about End-of-Life Decision Making "Principled"? If Not, How Much Does It Matter?
Independent Articles
  1. Public Health Ethics Theory: Review and Path to Convergence
  2. Conflicts among Multinational Ethical and Scientific Standards for Clinical Trials of Therapeutic Interventions
  3. The Roles and Responsibilities of Physicians in Patients' Decisions about Unproven Stem Cell Therapies
  4. The Impact of Defense Expenses in Medical Malpractice Claims
Columns
  1. Currents in Contemporary Bioethics: Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases
  2. Teaching Health Law: Teaching Law Students to Be Policymakers: The Health and Science Policy Workshop on Genomic Research
  3. Reviews: Medical Problems, Legal Responses Review of Poverty, Health and Law: Readings and Cases for Medical-Legal Partnership, edited by Elizabeth Tobin Tyler, Ellen Lawton, Kathleen Conroy, Megan Sandel, and Barry Zuckerman (Durham, NC: Carolina Academi
  4. Recent Developments in Health Law: Accountability after Guantanamo: The Role of U.S. Health Professionals
Table of Contents
Table Of Contents
ASLME - [PDF] (Free Download)
THE JOURNAL OF LAW, MEDICINE & ETHICS CONTENTS VOLUME 40:1 Spring 2012 Symposium Articles: 6 Introduction Robert M. Sade 10 Must We Ration Health Care for the Elderly? Daniel Callahan Resistance to rationing health care to the elderly is enormous. This article lays out the need for rationing, based on projections of Medicare expenditure in the near future, and the judgment of policy experts that there will be no technological breakthrough that might lower costs. Various forms of rationing possibilities are discussed as well as cultural and political obstacles to needed reform. Some general principles for thinking about health care for the elderly are presented. 17 Can Health Care Rationing Ever Be Rational? David A. Gruenewald Americans' appetite for life-prolonging therapies has led to unsustainable growth in health care costs. It is tempting to target older people for health care rationing based on their disproportionate use of health care resources and lifespan already lived, but aged-based rationing is unacceptable to many. Systems reforms can improve the efficiency of health care and may lessen pressure to ration services, but difficult choices still must be made to limit expensive, marginally beneficial interventions. In the absence of agreement on principles to govern health care resource allocation, a fair, open priority-setting process should be created to allow for reasonable disagreement on principles while being seen as legitimate by all stakeholders. At the patient-care level, careful discussions about the benefits and burdens of medical intervention and support for slow medicine - a gentle, family-centered care approach for frail elders - can do much to avoid harming these patients with aggressive yet unwanted medical care while reducing wasteful spending.
Introductions
Introduction: The Graying of America: Challenges and Controversies
Robert M. Sade - [PDF]

Growth of the world's population is accelerating. It reached one billion people in 1800, and added the next billion by 1930 - 130 years later. The population reached three billion by 1960 - in only 30 years - and ever since then, a billion more people have been added every 12-13 years. The world's population now stands at nearly seven billion, and epidemiologists project that it will rise to 9.3 billion by 2050. The majority of that population, 61%, lives in Asia, mostly China and India, and only 4.5% live in the United States - those proportions will change little by 2050 (see Figure 1). In developing countries, the population's frequency distribution by age is heavily weighted toward youth, while in developed countries such as the U.S., the bulk of the population is in the 30-60 year age group.
Symposium Articles
Must We Ration Health Care for the Elderly?
Daniel Callahan - [PDF]

For well over 20 years I have been arguing that someday we will have to ration health care for the elderly. I got started in the mid-1980s when I served on an Office of Technology Assessment panel to assess the likely impact on elderly health care costs of emergent, increasingly expensive medical technologies. They would, the panel concluded, raise some serious problems for the future of Medicare. The panel did not take up what might be done about those costs, but I decided to think about that question and wrote a book called, Setting Limits: Medical Goals in an Aging Society. I contended that we would be forced eventually to limit medical care for the elderly, and particularly high-technology procedures for those beyond the late 70s or early 80s. The combination of a sharply growing number of the elderly combined with more and more expensive technology would be financially overwhelming. I did not try to specify when in the future treatment limits should be set. My aim was not to propose immediate rationing but to get the public to anticipate its eventual likelihood and to open a discussion of the problem.
Can Health Care Rationing Ever Be Rational?
David A. Gruenewald - [PDF]

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 limitations on their access to the best providers and the latest technologies. 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. The percentage of GDP allocated to health care is increasing at the expense of other social needs such as education, public safety, and environmental protection. If costs continue 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 spending 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.
Social Justice, Health Disparities, and Culture in the Care of the Elderly
Peggye Dilworth-Anderson, Geraldine Pierre, and Tandrea S. Hilliard - [PDF]

This paper addresses two interconnected concepts - health disparities and social justice - as they pertain to screening, diagnosis of disease, and health care access among minority elders in the American society. Health disparities are defined as differences in treatment provided to members of different racial or ethnic groups that are not justified by the underlying health conditions or treatment preferences of patients. Disparities currently exist in many aspects of American health care. For example, when compared to whites, the infant mortality rate is higher for African Americans; health insurance coverage is lower for Latinos and African Americans; and ethnic minorities experience poorer care and survival rates for HIV, even after controlling for other confounding factors including income, insurance, health status, and severity of disease. Among older Americans, health status varies by race, income, and gender. Older minority Americans have consistently been shown to have worse health than whites of the same age group across measures of disease, disability, and self-assessed health. When compared to whites, elderly Latinos have higher rates of diabetes and disabilities, and older African Americans have more chronic conditions.
Looking for Better Health in All the Wrong Places: The Road to "Equality" Hits a Dead End
Tom Miller - [PDF]

I was initially assigned the working title, "Pursuing Equality in Health Care for the Elderly Is Futile." I prefer to think of that particular dead end of health policy as one of listening to the wrong music for too long. Hence, this article reprises and revises the title song of the early 1980s movie, Urban Cowboy, but with Johnny Lee's original lyrics adapted as "Looking for better health [rather than either 'love' or 'love of equality'] in all the wrong places." The better goal is to achieve more progress in improving health for more people, including (but not limited to) the elderly. It need not be as futile as the pursuit of the elusive abstraction of "equality" for all - but only if we first move away from a path-dependent approach of recent times that remains too narrowly focused on statistical disparities in health care services received by particular groups. A Thin Evidence Base In examining this topic, one finds that the actual evidence base for measures of health inequality among the elderly in the United States remains rather thin. We need to reconsider what, and how, we measure in searching for apparent differences in health across and among different parts of the population. Are we even asking the right questions? Once we begin to do so, we may discover a much more complex set of causes, correlations, and limiting factors facing both researchers and policymakers. They suggest that we proceed with greater caution and humility in setting more feasible priorities and targets of intervention. We should refrain from continuing to search for the lost keys to better health only where the political light appears to be brightest - under a well-funded lamp post called "health disparities" - rather than where those keys actually might be located.
Testing the Medical Covenant: Caring for Patients with Advanced Dementia
William F. May - [PDF]

A word, first, about the religious sensibility that I have found helpful to describe the care professionals owe to dying patients, particularly patients with advanced dementia. That word is covenant. It is a biblical term; but, today, it covers such dubious devices as real estate covenants. A real estate covenant often operates below the moral level of a contract to wall some people out of a neighborhood. Classically understood, however, the word covenant helps probe the obligations of doctors to their patients more deeply than the notion of a contract. Covenants of the sort I have in mind and contracts appear to be first cousins; they both include an agreement and an exchange between parties. But, in spirit, contracts and covenants differ markedly. Contracts are external; covenants are internal to the parties involved. We sign contracts in order to discharge them expediently. Contracts are limited and time-bound - whether a contract to fix plumbing or to charge such and such for a medical procedure. In contrast, a covenant, such as the covenants of religious people before God or the covenants of friendship, marriage, or professionals to patients ratifies and extends forward into the future beyond the particulars of a contractual agreement. Contracts operate at the level of buying and selling; covenants in some measure also interact and augment at the further level of giving and receiving. Commercial contracts demand only what the contract specifies. In contrast, a healer's covenant further commits the practitioner; it does not simply fragment time into billable hours and procedures. It also requires the healer to attend to the patient as a whole rather than simply treat each patient as a skirmish in a generalized war against disease and death or an equally abstract war to perpetuate life.
Doing the Right Thing: A Geriatrician's Perspective on Medical Care for the Person with Advanced Dementia
Muriel R. Gillick - [PDF]

America is aging. But even more striking than the rise in the proportion of the population over age 65 is the unprecedented number of individuals who are living into their eighties and nineties. While many people remain robust well into advanced age, the dramatic increase in the number of the oldest old has brought with it an epidemic of Alzheimer's disease and other dementias. Dementia is a highly prevalent condition - currently 5.4 million Americans have Alzheimer's disease, a number which may rise to 16 million by 2050 if there is no breakthrough in the prevention or treatment of the disease - but it disproportionately affects those over age 85, striking between one-third and one-half of this cohort. Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. Dementia deserves special attention, in a way that other diseases such as cancer or heart disease do not, quite apart from the numbers of those affected. By its very nature, individuals afflicted with Alzheimer's disease can participate to only a limited degree, if at all, in decisions about their care. And although dementia is an incurable, ultimately fatal disease, its duration is long: while recent estimates indicate that survival is considerably shorter than the 5-10 years traditionally cited, median survival from diagnosis to death is nonetheless greater than three years. Dementia therefore does not fit the mold of a typical "terminal illness" for which programs such as hospice have been developed. Because individuals with dementia tend to be old, they are at high risk of developing other acute or chronic illnesses such as cancer or heart disease or infections, illnesses for which life-prolonging treatment is often recommended. As a result, discussions about what to do if a new, life-threatening medical problem develops are not merely theoretical; the chance of actually needing to make a decision about how best to treat an inter-current illness is high.
Physicians Should "Assist in Suicide" When It Is Appropriate
Timothy E. Quill - [PDF]

In my career as a primary care physician and as a palliative care consultant, I have assisted many patients to die with their full consent. None of them wanted to die, and all would have chosen other paths had their disease not been so severe and irreversible. To a person, none of these patients thought of themselves as "suicidal," and they would have found that label preposterous and demeaning. In fact, the kind of personal disintegration that the label implies is just what is trying to be prevented by those choosing this possibility. So on behalf of patients who have chosen this option, I reject the title of this debate as it unnecessarily tars the discussion with the suggestion of mental illness. In my primary care practice, I have also met many patients who were "suicidal" in the mental health sense of the word, and rest assured I have assisted none of them to die. In fact, I have at times had them involuntarily hospitalized to prevent them from carrying out their wishes. Admittedly there have been a few gray cases, where dying patients with severe irreversible illness also appeared to have mental illness that contributed to their readiness to die, and I have worked hard with my psychiatric colleagues to sort out what is being asked for and why before responding. But for the most part, genuine requests for assisted dying stem from irreversible, overwhelming suffering toward the very end of life. I would therefore reframe my position in this debate as: Physicians should (and do) appropriately assist (some) patients to die, but it is unevenly and unpredictably available.
Are the Distinctions Drawn in the Debate about End-of-Life Decision Making "Principled"? If Not, How Much Does It Matter?
Yale Kamisar - [PDF]

I sometimes wonder whether some proponents of physician-assisted suicide (PAS) or physician-assisted death (PAD) think they own the copyright to such catchy phrases as "death with dignity" and "a good death" so that if you are against PAS or PAD, then you must be against a dignified death or a good death. If one removes the quotation marks around phrases like "aid-in-dying" or "compassionate care for the dying," I am not opposed to such end-of-life care either. Indeed, how could anybody be against this type of care? I do not want to abandon dying patients anymore than Dr. Timothy Quill does. Although, unfortunately, it will not always be easy to achieve the desired result, I agree with him that it ought to be a goal of medicine "to help people die well, to help them receive a good death" - or at least "the best possible" death under the circumstances. I part company with Professor Quill, however, when he urges us to change the law in the majority of our states so that in some circumstances patients may achieve a "good death" or a "dignified" one by means of lethal drugs.
Independent Articles
Public Health Ethics Theory: Review and Path to Convergence
Lisa M. Lee - [PDF]

For over 100 years, the field of contemporary public health has existed to improve the health of communities and populations. As public health practitioners conduct their work - be it focused on preventing transmission of infectious diseases, or prevention of injury, or prevention of and cures for chronic conditions - ethical dimensions arise. Borrowing heavily from the ethical tools developed for research ethics and bioethics, the nascent field of public health ethics soon began to feel the limits of the clinical model and began creating different frameworks to guide its ethical challenges. Several public health ethics frameworks have been introduced since the late 1990s, ranging from extensions of principle-based models to human rights and social justice perspectives to those based on political philosophy. None has coalesced as the framework of choice in the discipline of public health. This paper examines several of the most-known frameworks of public health ethics for their common theoretical underpinnings and values, and suggests next steps toward the formulation of a single framework.
Conflicts among Multinational Ethical and Scientific Standards for Clinical Trials of Therapeutic Interventions
Jacob M. Kolman, Nelda P. Wray, Carol M. Ashton, Danielle M. Wenner, Anna F. Jarman, and Baruch A. Brody - [PDF]

There has been a growing concern over establishing norms that ensure the ethically acceptable and scientifically sound conduct of clinical trials. Among the leading norms internationally are the World Medical Association's Declaration of Helsinki, guidelines by the Council for International Organizations of Medical Sciences (CIOMS), the International Conference on Harmonization's standards for industry (ICH), and the CONSORT group's reporting norms (Consolidated Standards of Reporting Trials), in addition to the influential U.S. Federal Common Rule, Food and Drug Administration's (FDA) body of regulations, and information sheets by the Department of Health and Human Services. There are also many norms published at more local levels by official agencies and professional groups. Any account of international standards should cover both scientific and ethical norms at once - the two are conceptually intertwined. Recent sources recognize that "[s]cientifically unsound research on human subjects is unethical in that it exposes research subjects to risks without possible benefit." Normative guidance for conducting simultaneously valid and ethical trials have not been as comprehensive as they could be, which may contribute to evaluations of the high number of methodologically suspect trials.
The Roles and Responsibilities of Physicians in Patients' Decisions about Unproven Stem Cell Therapies
Aaron D. Levine and Leslie E. Wolf - [PDF]

Stem cell science, using both embryonic and a variety of tissue-specific stem cells, is advancing rapidly and offers promise to improve medical care in the future. Yet, with the notable exception of hematopoietic stem cell transplantation, a long-established approach to treating certain cancers of the blood system, this promise is long term and most stem cell research focuses on basic scientific questions or the collection of pre-clinical data. Although some clinical trials are underway, most are focused on safety, and novel effective therapy is likely a long way off. Despite the preliminary nature of most stem cell research, however, numerous clinics around the world offer stem cell "therapies" to patients today outside the context of a clinical trial. Although the number of patients who have received these stem cell-based interventions (SCBIs) is unknown, anecdotal reports suggest a substantial population of patients is willing to try them, despite unresolved questions about their safety and efficacy. Because patients typically travel from their home countries to receive these unproven SCBIs abroad, the practice is commonly known as "stem cell tourism."
The Impact of Defense Expenses in Medical Malpractice Claims
Aaron E. Carroll, Parul Divya Parikh, and Jennifer L. Buddenbaum - [PDF]

Whenever health care reform is debated, the state of the medical professional liability (MPL) system (i.e., medical malpractice system) in the United States re-emerges as an issue of importance. What exactly is broken with the MPL system and what the implications are is a point of contention among different stakeholder groups. Recent data demonstrate that medical liability premiums have been improving in recent years and the majority of premiums remained flat in 2010. General agreement still exists, however, that medical professional liability insurance premiums have become unaffordable for many physicians, and coverage has become less available, especially for certain medical specialties and in specific areas of the country. Multiple factors go into the determination of medical professional liability insurance premiums including return on investments, reinsurance costs, claims frequency, average amount paid out on malpractice claims, defense expenses, and administrative costs such as underwriting expense. These factors all interact with each other and, in general, evidence exists that each of these factors has played a role in the escalating cost of medical professional liability insurance.
Columns
Currents in Contemporary Bioethics: Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases
Yann Joly, Clarissa Allen, and Bartha M. Knoppers - [PDF]

Genomic research has been hailed as a scientific advancement that will significantly improve the diagnosis, prevention, and treatment of human diseases. Population projects in which thousands of DNA samples are linked to phenotypic and genealogical data promise to provide important insight into the gene-environment interactions implicated in many complex diseases. Accordingly, a number of large-scale public population database projects have been initiated to generate data regarding the interrelatedness of genotype, phenotype, and environmental factors, and to serve as research infrastructures for future exploratory and translational research initiatives (see figure 1). Such projects present a promising new model for advancing health research, but they also raise challenging ethical, legal, and social questions. Among these is how the benefits of the genomic revolution can be allocated so as to acknowledge the joint contributions of researchers and research participants. One proposed strategy is benefit sharing, which involves putting mechanisms into place to ensure that the benefits stemming from genomic research profit whole population groups rather than researchers alone. In this paper, we propose that in the domain of large-scale genomic databases, providing rapid, unrestricted access to their research data is a suitable way to ensure that the benefits of these projects are equitably shared with the individuals, communities, and populations from which they are derived.
Teaching Health Law: Teaching Law Students to Be Policymakers: The Health and Science Policy Workshop on Genomic Research
Benjamin E. Berkman and Karen H. Rothenberg - [PDF]

There comes a time, often towards the end of college, when young adults start thinking about their career paths. Science and medicine are popular areas of interest, but the reality of blood and cadavers, or pipettes and centrifuges, has a tendency to discourage some potential doctors or scientists from pursuing these options. There has thus emerged a trend of using law school as a vehicle for engaging in a health- or science-related field. However, this legal career path is not as well traveled as the more common law firm route. Many students interested in combining law and health or science express an interest in "doing health policy," yet often have little understanding about what that entails and how to best develop the analytic skills needed to succeed in a policy environment. This should not be surprising, given the disagreement about how to define policy and how best to teach students to do policy analysis. Nevertheless, law schools have a responsibility to prepare these students for a variety of legal roles (e.g., drafting and implementing legislation and regulations, advocating on behalf of clients, working with industry, etc.) by finding creative ways to expose them to the complex (and often messy) world of policymaking. They also have a responsibility to do so in a structured and mentored environment that emphasizes learning and skill development. Classroom education, and its emphasis on legal theory, is insufficient to prepare law students with an interest in health and science policy for future careers in this field.
Reviews: Medical Problems, Legal Responses Review of Poverty, Health and Law: Readings and Cases for Medical-Legal Partnership, edited by Elizabeth Tobin Tyler, Ellen Lawton, Kathleen Conroy, Megan Sandel, and Barry Zuckerman (Durham, NC: Carolina Academi
Marshall B. Kapp - [PDF]

Physicians and attorneys have interacted professionally for a long time. Ordinarily, such interaction has taken several forms. Physicians personally hire attorneys, or are assigned an attorney by an employer or insurer, to advise or represent them regarding the physician's own legal needs. Physicians may refer a patient to an attorney when the physician sees the need for such a referral (for instance, when the physician tells a patient with a terrible prognosis to "put your affairs in order"). In both criminal and civil litigation contexts (including claims for medically triggered public or private insurance benefits and probate and guardianship matters), physicians frequently serve as consultants to and witnesses (both fact witnesses and expert witnesses) for attorneys in evaluating and helping to prove or dispute issues such as the applicable standard of care, the existence and extent of injury, and causation. Similarly, in at least some (althoughnot nearly enough) academic settings, medical students and law students have shared the same air. As a law student in the early 1970s taking the only course offered in legal medicine at my university, I had the opportunity to sit in a classroom at the university hospital with a few other unusual law students and several curious medical students to discuss emerging issues at the intersection of medicine and law. Sometimes the law students and medical students in the class acknowledged and occasionally spoke with each other, albeit usually through the instructors. Many law schools today, as part of either doctrinal or clinical courses, arrange for law students to visit and observe what goes on in hospitals and other health care delivery venues. In my own law school course, for example, I was required to observe an operation. Additionally, some law school externship programs allow law students to work in the legal departments of health care providers or regulators, where they may have a chance to rub elbows with practicing physicians and other hands-on clinicians.
Recent Developments in Health Law: Accountability after Guantanamo: The Role of U.S. Health Professionals
Deeona Gaskin - [PDF]

Health professionals around the world have played an integral role in state-sponsored torture during numerous historical episodes, at times providing "expertise and a veneer of legitimacy to a process that involved violations of basic human rights." These incidents demonstrate why legal and ethical standards among health professionals should be upheld, no matter the context. For example, health professionals during the Third Reich in Germany notoriously worked with the Nazi government to perform painful medical experiments on individuals without their consent and to supervise systematic killings. During the dictatorships in Brazil, Chile, and Uruguay and during apartheid in South Africa, medical professionals also participated in torture. In recent years, government documents, news reports, articles, books, and testimonies by detainees and health professionals have exposed the involvement of health professionals in the abuse and torture of detained individuals at U.S. detention facilities around the world. Health professionals have not only allegedly failed to either report or stop the mistreatment of detainees, but have reportedly in some cases designed interrogation tactics, falsified medical records, helped sustain abuse5 and revealed confidential health information to interrogators. This article explores current accountability efforts connected with such allegations, focusing on the recent case of Reisner v. Catone, 929 N.Y.S.2d 403 (N.Y. Sup. 2011). The case involves an effort by one psychologist, Dr. Steven Reisner, to hold another, Dr. John Leso, accountable for his actions at Guantánamo.