Medicine

Read To Respond: Feminism and Women’s Rights


R2R final logoOur “Read to Respond” series addresses the current climate of misinformation by highlighting articles and books that encourage thoughtful, educated debate on today’s most pressing issues. This post focuses on feminism and women’s rights with articles tackling topics from abortion laws, maternity leave, Islamic feminism, and more. Read, reflect, and share these resources in and out of the classroom to keep these important conversations going.

Feminism and Women’s Rights

These articles are freely available until December 15, 2017. Follow along with the series over the next several months and share your thoughts with #ReadtoRespond.

Personhood Is a Weapon by Eli Clare

Today’s post is an excerpt from Brilliant Imperfection: Grappling with Cure by Eli Clare, with an introduction by the author.

In this political moment as hate violence is on the rise, Trump is trying to ban Muslim refugees from the country, and the Attorney General has blamed disabled students for the lack of civility and disciplinbrilliant-imperfection-covere in public schools; so many groups of marginalized peoples are being treated as unworthy and disposable, essentially denied full personhood. The following meditation on personhood is excerpted from my newly released book, Brilliant Imperfection: Grappling with Cure. I wrote it thinking about white disabled woman Terri Schiavo, who died over a decade ago after a well-publicized and protracted legal struggle over ending her life. But I could as easily have been writing about significantly disabled Black lesbian teenager Jerika Bolan, who after expressing a desire to die wasn’t provided counseling and community support. Rather she was allowed to commit medically sanctioned suicide six months ago. Or I could have written about the unnamed Salvadoran asylum seeker, who in mid-February collapsed at a Texas ICE detention center, was taken to a hospital, diagnosed with a brain tumor, and then in the midst of treatment forcibly taken back to the detention center. If Jerika Bolan had been granted full personhood, she’d still be alive; if the Salvadoran asylum seeker had been granted full personhood, she wouldn’t be locked up in a detention center. More than ever, I believe personhood can be used as a weapon.

Some of us are granted personhood as our birthright, but others are required to prove and defend it every day. And when we fail this perverse test, we’re in trouble. Listen. I want us to remember Terri Schiavo. Debates about her raged in the news in 2004 and 2005.

Whatever happens after we die, our body-minds composting back to earth and air, I hope it’s more peaceful than Terri Schiavo’s last few days as she died of dehydration. Everyone — her parents, her husband, her doctors, the media — had an opinion about her and the feeding tube that had just been removed from her stomach.

She was a white woman who collapsed one day, her body-mind changing radically in a matter of minutes as oxygen stopped flowing to her brain and then started again. Some say she lost her ability to communicate, to think, to feel. Or perhaps we lost our capacity to listen. We’ll never know what floated beneath her skin. I want us to mourn for her.

Pundits and reporters, activists and scholars have written about her endlessly. I don’t know why I’m adding to their pile of words, except my memory of her won’t leave me alone.

She was a heterosexual woman whose husband decided she’d rather die than be disabled. Her hands curled, stiffened, joints freezing into contraction. He asserted his patriarchal ownership, refusing to let nurses slide rolled towels into her hands to help loosen her muscles. Nor would he allow them to teach her to swallow again, even though there was every sign that she could. He spent all his court-awarded settlement money on lawyers rather than care, comfort, and assistive technology. What words or fluttering images did she hold in her muscles and bones?

So many people surrounding Terri Schiavo assumed that she knew and felt nothing. Over and over again neurologists, journalists, judges made decisions about her body-mind based on the beliefs that language and self-awareness make us worthy, that death is better than disability, that withdrawing the basic human rights of food and water can be acts of compassion.

I could ponder self-consciousness, spiritual connection, and the divide between human and nonhuman. I could argue with the bioethicists who separate humanness from personhood, declaring pigs and chimpanzees to have more value than infants and significantly disabled people. But really, I’m not interested. I want us to rage for her.

She was a woman living in a hospital bed, referred to as a vegetable more than once. Did she lie in a river of shadow and light, pressure and sound? That too, we will never know. When she died, did we call her name?

Body-minds have value. Certainly I mean our own human selves, but I also mean heron, firefly, weeping willow. I mean dragonfly, birch, barn swallow. I mean goat and bantam rooster, mosquito and wood frog, fox and vulture — the multitude of beings that make home on this planet. I mean all body-minds, regardless of personhood.

She appeared to track the motion of balloons across her hospital room and grinned lopsidedly into the camera. Her life hung between a husband who said one thing and parents who said another, between legal pronouncements and diagnostic judgments. Do we remember her? I don’t mean the editorials, the pro-life versus pro-choice rhetoric, the religious and secular arguments, the political protest and vigil staged outside her hospice, the last-minute drama as Florida’s governor Jeb Bush and the U.S. Congress tried to intervene. I mean: do we remember her?

Too many of us acted as if Terri Schiavo’s body-mind stopped being her own. Depending on who we were and what stake we had in her life or death, we projected our fear, belief, hope, disgust, love, certainty onto her.

I’m trying to say that life and death sometimes hangs on an acknowledgement of personhood. Trying to say that personhood is used all too often as a weapon. Trying to say that while personhood holds tremendous power, its definitions are always arbitrary. Trying to say—I stutter over the gravity of those words.

Copyright Duke University Press, 2017. To order Brilliant Imperfection from us at a 30% discount, enter coupon code E17CLARE at checkout.

 

Call for Papers: Policy Analysis and the Politics of Health Policy

ddjhppl_41_1How, when, and where does academic policy analysis about the health care system enter the policymaking process?  How have healthcare policymakers seen and used policy analysis in the development, implementation, and perhaps repeal of the Affordable Care Act?  As the US moves from a more technocratic to a more populist administration, how is the role of policy analysis likely to shift? We invite papers for a conference at the Wagner School, New York University in spring 2017 to explore the role of policy analysis in the political process, focusing particularly on the Affordable Care Act. The Journal of Health Politics, Policy and Law will accept five to seven papers from the conference to run in a special issue after undergoing peer review. Sherry Glied, Dean of the NYU Wagner School of Public Service, is Guest Editor of this Special Issue of JHPPL.

Background

The relationship between scholars in health policy and policymakers has long been contested.  Back in 1966, following the passage of Medicare and Medicaid, Odin Anderson, reviewing the relationship between research and policy, reported that he was “pessimistic” and concluded a dispiriting review by asking “what is then the value of social and economic research in the health field?”  In the ensuing 50 years, health policy scholars have continued to publish and policymakers have continued to legislate and implement health policy.  Funders increasingly demand dissemination plans to ensure that the findings of the research they support are influential in the policy process.  A new scholarly field of “knowledge translation” has emerged.  Yet many observers remain pessimistic about the influence of evidence on policymaking.

Many aspects of the Affordable Care Act’s development and implementation offered opportunities for scholarship to influence the process – from the initial decision to focus on health reform, to the design of the exchanges and the Medicaid expansion, to the investment in comparative effectiveness research and delivery system improvements, through the most recent repeal-and-replace debates.  The Law’s path has wound through Congress, the Federal Executive Branch, the Courts, and through State Legislatures and Governor’s Offices.  How, where, and when did policy-related scholarship play a part in these processes?  How, where, and when should it have played such a part?  The purpose of this research conference is to explore these questions both positively and normatively.  While the focus of the conference will be on the Affordable Care Act, we are also open to papers that consider other aspects of health policymaking.

Possible Paper Topics and Target Audience

We seek to cast a broad net and are open to studies by political scientists, economists, sociologists, historians, health services researchers, and others. Papers could examine differences and similarities in how research evidence is used in the various institutions of government (committees, budget agencies, executive branch departments, the judiciary); how evidence plays into lobbying and stakeholder engagement; the uses of evidence in the context of Federal/State relations; the role of the technocracy (expert advisory panels, budget agencies, actuaries, regulatory impact analyses, budget scores); how policymakers address conflicting research findings (for example, in the discussions of job loss); how Congress acts when evidence is sparse (as in the case of the CLASS Act), how partisanship affects the use of evidence; as well as papers that explore more normative issues, such as the relationship between scholarship and accountability.

The target audiences for these papers include academic researchers; funders; and health policy makers at the local, state, and federal levels. Papers should be written so as to be accessible to all of these audiences.

Submission Guidelines

Interested authors should submit a 1-3 page proposal by March 1, 2017 by email to Jennifer Costanza, Managing Editor of JHPPL, at jhppl[at]brown[dot]edu. Please put “Policy Analysis Conference” in the subject line of the message. JHPPL will respond to the proposals by March 15, 2017.  Accepted authors will present completed papers at the conference at NYU on May 2, 2017.  The papers will then undergo peer review for a special issue of the journal.

Call for Papers: The Political Beliefs and Civic Engagement of Physicians in an Era of Polarization

ddjhppl_41_6To what extent do doctors’ political beliefs, identities, and ideologies influence their professional decisions in the medical exam room? How do these political views shape what doctors do in their role as citizens, including their political participation on contested issues, such as abortion, gun control, and Obamacare? We invite papers for a conference at Tufts University in fall 2017 to explore the political beliefs and civic engagement of physicians in an era of partisan polarization. The Journal of Health Politics, Policy and Law will accept five to seven papers from the conference to run in a special issue after undergoing peer review.

Background

Physicians have substantial autonomy in treating patients according to their best judgment. To be sure, doctors must uphold standards of professional conduct. They are also subject to the incentives and constraints of insurance plans, payment systems, and malpractice rules. Yet the role of a physician is defined loosely enough that doctors can bring to their work predispositions about how their jobs ought to be done. These predispositions can come from many sources, including medical school training, prior experiences, peer effects, individual personality and—the subject of this call for papers—politics.

A recent study in the Proceedings of the National Academy of Science (Hersh and Goldenberg 2016) demonstrates that physicians allow their political worldviews to influence their professional decisions on certain politically salient issues. For example, doctors who identify with the Democratic Party are more likely to urge patients against storing firearms in the home, while Republican physicians are more likely to counsel patients on the mental health risks of abortion and to urge patients to cut down on marijuana use. Yet many questions remain unanswered:  How important and far-reaching is the influence of physicians’ political beliefs? What factors shape the emergence and development of these beliefs? Does the influence of physicians’ political beliefs on their professional behavior benefit or harm patients? Does it significantly affect variation in medical spending and health outcomes? In addition to these questions about how physicians’ political views affect medical practice, there are a range of questions about how physicians engage in politics, such as the level and variety of political activism among physicians and their professional associations.

Possible Paper Topics and Target Audience

We seek to cast a broad net and are open to studies by political scientists, economists, sociologists, health services researchers, and others. Papers could examine how doctors form their political ideologies and identities, whether there are significant differences in beliefs or belief formation across variables such as gender, age, region, training, residency, practice type, or medical specialization, as well as the implications for health outcomes. We are also interested in papers that examine the political participation of doctors in areas including but not limited to voting, testifying, letter writing, participation in agency rulemaking, contributing money to candidates or PACs, bundling donations, running for office, making public speeches and media appearances, and formal or informal lobbying. We are primarily interested in the political views and behavior of U.S. physicians, but papers that offer a comparative perspective are welcome.

The target audiences for these papers include academic researchers; health policy makers at the local, state, and federal levels; and health legal practitioners. Papers should be written so as to be accessible to all of these audiences.

Submission Guidelines

Interested authors should submit a 1-3 page proposal by March 3, 2017 by email to Jennifer Costanza, Managing Editor of JHPPL, at jhppl[at]brown[dot]edu. Please put “Physicians and Politics Submission” in the subject line of the message. JHPPL will respond to the proposals by April 21, 2017. Accepted authors will present completed papers at the conference in October/November 2017, at Tufts University in Boston. The papers will then undergo peer review for a special issue of the journal.

Article Published in Journal of Health Politics, Policy and Law Addresses Informed Consent

A recent study published in the Journal of Health Politics, Policy and Law, “Informed or Misinformed Consent? Abortion Policy in the United States,” by Cynthia R. Daniels, Janna Ferguson, Grace Howard, and Amanda Roberti, found that women considering abortions receive medically inaccurate information nearly one third of the time in states that require doctors to provide informed consent materials to their patients.

Since 2010, the United States has witnessed a dramatic expansion of state-based restrictions on abortion. The most common of these are informed consent statutes, which require that a woman seeking an abortion receive a state-authored informational packet before the abortion procedure can be performed.

The Rutgers study team defined medical accuracy as information that was both “truthful and nonmisleading,” constitutional standards set by the U.S. Supreme Court in Planned Parenthood of Southeastern Pennsylvania et al. v. Robert P. Casey et al. in 1992. “Our findings suggest these laws may produce ‘misinformed consent’ and may require the court to rethink the constitutionality of abortion-related informed consent laws as a whole,” Cynthia Daniels, lead author and head of the Informed Consent Project, concluded.

Read the article here. For more information, contact Cynthia Daniels.

Farewell to William G. Anlyan

Dr. William G. Anlyan, former dean of the Duke University School of Medicine and Chancellor for Health Affairs, died Sunday at the age of 90.

978-0-8223-3378-4_prAnlyan was the author of nine books with Duke University Press, two of which are still in print. The Future of Medical Education (1973) called for major reforms in U.S. medical education. Metamorphoses: Memoirs of a Life in Medicine (2004) recalled the changes in medicine and medical education in Anlyan’s forty -year career at Duke.

Born in Alexandria, Egypt, in 1925, and schooled in the British tradition, Anlyan attended Yale University as an undergraduate and medical student before coming to the relatively unknown medical school at Duke University in 1949 for an internship in general and thoracic surgery. He stayed on, first as a resident, then as a staff surgeon. By 1961, he was a full professor of surgery. In 1964, Anlyan was named dean of the medical school, the first in a series of administrative posts at the medical school and hospital. Anlyan’s role in the transformation of the Duke University Medical Center into an internationally renowned health system is manifest: he restructured the medical school and hospital and supervised the addition of almost four million square feet of new or renovated space. He hired outstanding administrators and directed a staff that instituted innovative programs and groundbreaking research centers, such as the Cancer Center and the Physician’s Assistant Program.

In Metamorphoses, Anlyan describes a series of metamorphoses in his own life, in the world of medicine, in Durham, and at Duke. At the time of his prep school upbringing in Egypt, medicine was a matter of controlling infectious diseases like tuberculosis and polio. As he became an immigrant medical student and then a young surgeon, he observed vast advances in medical practice and changes in the financing of medical care. During his tenure at Duke, Durham was transformed from a sleepy mill and tobacco town into the “City of Medicine,” a place where patients routinely travel for open-heart surgery and cutting-edge treatments for cancer and other diseases.

In a cover blurb for Metmorphoses, Anlyan’s successor, Ralph Snyderman (whose own memoir comes out from Duke University Press this fall) called Anlyan “a giant at Duke University and an important leader of twentieth-century academic medicine.” Former Surgeon General David Satcher said, “Bill Anlyan has been one of the most outstanding leaders in academic medicine. Knowing him has been one of the great pleasures of my life and career.”

The flags at Duke University have been lowered to half-staff in Anlyan’s honor.

Alternative Medicine: A Poem by Rafael Campo

978-0-8223-5587-8_prToday is World AIDS Day. Poet and doctor Rafael Campo has been caring for AIDS patients for decades and he often writes about his experiences. This poem is from his most recent collection, Alternative Medicine (2013).

 

Alternative Medicine

Wednesday afternoon HIV clinic

I. ADVERSE REACTION
“Pray for me,” she asks, her head covered in
a polyester scarf. She doesn’t hide
herself for shame; she’s lost her hair. We think
it was the AZT. She says that through
the walls of all her suffering, she thinks
she hears God’s distant voice when her young son
reads from his new storybook. She’s so proud
he’s learning English. “Pray for him,” she asks
before she leaves, “that he may have enough
to bury me in a fine new white dress!”

II. FAILURE TO THRIVE
He weighs less than ninety pounds. Years ago,
he was a bodybuilder. Muscular
and tanned, he looks like someone else back then,
the photograph he shows me faded now.
“You know, even my cock has shriveled up,”
he says. “No one would want to fuck me now.”
He undresses very slowly; I count
his ribs while he fumbles with the blue gown.
When I touch him, he avoids my eyes, stares
up at the blank ceiling instead, and cries.

III. LEUKOPENIA
I see him sometimes when I’m walking home.
He holds his children’s hands, refuses to
acknowledge me. I know his viral load,
his T cell count, his medication list,
as if these data somehow pinpoint him.
Enveloped in the park’s expanse of snow,
his two small children bobbing next to him
like life preservers, I remember that
he’s leukopenic. Snow begins to fall
again, innumerable tiny white flakes.

IV. ADVANCED DIRECTIVES
The rescue regimen is failing too.
He lives alone in an AIDS SRO,
once had two little shih-tzu mixes he
was forced to give up—the neighbors complained
about the barking. Not depressed, he says.
Not suicidal. Still taking his meds.
He watches Oprah, gets a hot lunch daily.
I write the orders in his chart. He says
it’s funny, since his mother always said
she wished he’d never been born anyway.

V. CARDIOMYOPATHY
He can’t tie his shoes anymore because
his feet are so swollen. Denies chest pain
but says his heart aches, whatever that means.
Ejection fraction less than thirty now.
Strange that it keeps progressing, since the meds
have kept his virus undetectable.
He says he doesn’t drink, is sober now
for fifteen years. Assessing the edema,
I leave the imprint of my fingertips
anywhere I press down on his taut skin

VI. RESISTANCE
I think she must be missing doses, since
she hasn’t yet disclosed her status to
her husband, who she fears will leave her—or
worse, if he finds out she’s positive now.
Good question—he probably exposed her,
but that’s not the point. Here’s her genotype:
clean, no resistance mutations at all.
Her virus is wild-type, and so she should
suppress on her twice-a-day regimen.
Either that, or she’s just not taking it.

VII. IVDU
“I envy you,” he says. “You got it all
figured.” I stare at the computer screen.
“IVDU. That means I’m on dope, right?
Just an addict, right?” Silently, I type.
“You got to write me a prescription, man.
IVDU? A-I-D-S. That’s AIDS.
Can’t you just be happy I’m gonna die
and give me my damn prescription?” I try
to hate him, but write “Percocet” instead.
“Now, that didn’t hurt much, did it?” he asks.

VIII. UNIVERSAL PRECAUTIONS
You tell me that like me you must wear gloves
at work, restoring precious paintings at
the MFA. Imagining you bent
intently over some scarred masterwork,
I wonder whether your light touch might heal,
but in another sense: I must protect
us all should suddenly you bleed, while you
expose us to the curious infection
of what is possible to know by life’s
wounds. Even through my gloves, your skin feels warm.

IX. OPPORTUNISTIC INFECTION
She tells me that her dream involved a cliff—
no, mountain—that she climbed until she reached
its peak. From there, she saw a pristine view:
unending valleys, white-gray glaciers, snow.
The air was thin and she could hardly breathe.
She suddenly began to cough, and blood
poured out of her like song. But in the dream,
she didn’t have tuberculosis yet;
she’s sure she was infected with a lie,
and inside her, it was the dream that died.

X. ALTERNATIVE MEDICINE
I won’t take antiretrovirals, don’t
eat processed foods, and remain celibate.
I will take echinacea for a cold—
I wish all medicines came from the earth
and not some toxic lab where they kill rats
with chemicals they claim “treat” HIV.
I exercise six times a week, and pray
to my own God. I believe that someday
we’ll find the cure, and I’ll be here to say
that one of us survived to celebrate.

Copyright Duke University Press, 2013.

 

New Studies Assess Accountable Care Organizations (ACOs) after the Passage of the Affordable Care Act

JHP404_coverproof1-1Assessing Accountable Care Organizations: Cost, Quality, and Market Power,” a special issue of the Journal of Health Politics, Policy and Law (volume 40, issue 4), is an in-depth look at accountable care organizations (ACOs): networks of hospitals, physicians, or other health care providers that share financial and medical responsibility for the coordinated care of a patient.

Now numbering over 700 throughout the United States, ACOs were rare prior to the passage of the Affordable Care Act. Their increased presence has sparked a debate about issues important to patients, providers, and taxpayers throughout the nation. “Integrated health delivery systems and accountable care organizations are becoming ubiquitous in our health care system,” Richard Scheffler, special issue co-editor, states. “They potentially could bend the cost curve and improve the quality of care, but they also present a threat to the competitiveness of health care markets.”

Contributors to this issue analyze the current landscape of ACOs from a national and state perspective and assess whether ACOs meet the expectations of patients for lowering costs, increasing the quality of health care, and impacting population health. The authors also identify the current status of ACO accountability and enforcement with insight into antitrust laws.

The issue also includes a Point-Counterpoint section in which Laurence Seidman (University of Delaware) and Harold Pollack (University of Chicago) debate the merits of a Medicare for All reform.

Much of the work in this issue was supported through the Nicholas C. Petris Center with funding from the California Attorney General’s office.

For more information about the Journal of Health Politics, Policy and Law, published by Duke University Press, please visit dukeupress.edu/jhppl. For more information about the special issue, please contact Colleen Grogan, journal editor and special issue co-editor (cgrogan[at]uchicago[dot]edu) and Richard Scheffler, special issue co-editor (rscheff[at]berkeley[dot]edu).

Q&A with Sharon R. Kaufman

Photo by Susan Merrell

Photo by Susan Merrell

Sharon R. Kaufman is Professor Emerita and Chair, Department of Anthropology, History and Social Medicine at the University of California, San Francisco. Ordinary Medicine: Extraordinary Treatments, Longer Lives and Where to Draw the Line is an ethnography about the dilemmas 21st century American health care poses.  Centered on the intersection of medicine, our aging society and the concerns raised by today’s treatment options, the book is about the structure and culture of the entire biomedical health care enterprise, from research funding for treatments, to what is reimbursed by insurance companies, to what is considered standard and necessary and why, to what, ultimately, patients and doctors talk about and decide to do. It reveals how the organization of the system determines so much of what happens to everyone and why it is so difficult to see the line between ‘enough’ and ‘too much’ medical intervention.

What is the medical-industrial complex and is there a way to counteract its effects on how we experience illness and death?

In 1980 Arnold Relman, then editor of the New England Journal of Medicine, coined the phrase “medical-industrial Ordinary Medicinecomplex” to describe the ways science, medicine, profits and politics were becoming entangled and were beginning to have a growing impact on health care.  Inspired by President Eisenhower’s earlier coinage of the term military-industrial complex, Relman defined that new health care complex as “a large and growing network of private corporations engaged in the business of supplying health-care services to patients for a profit.”

I draw attention to that complex in Ordinary Medicine.  The worries Relman articulated in 1980 were about the corporatization of health care, the rise of the medical marketplace and the demise of medicine as a social good.  His worries were prescient of course.  The contemporary medical-industrial complex I describe in Ordinary Medicine shows the ways in which the commercial business of health care has grown enormously since the 1980s.  For example, biomedical research in the United States is a $100 billion enterprise today, largely funded by private industries.  The market-driven, market-expansion goals of the pharmaceutical, device and biotech companies have a greater influence on the development and use of treatments than ever before.  Private industry largely determines which therapies will be investigated in clinical trials and other studies and which patient-consumer markets will be exploited. As a consequence, its role in shaping what doctors recommend and what patients ask for has increased dramatically in the past several decades, and it continues to increase.

Because the medical-industrial complex shapes the clinical trials enterprise and what we have come to regard as evidence-based medicine, because that complex churns out new diagnostic procedures and therapies at an unprecedented rate, and because it guides physicians and patients in their thinking about treatment options, there is no way to counteract its effects, per se, on how we experience illness and advanced age.   We can, however, be mindful of those effects when we consider whether to employ every new treatment modality that comes along to fight the ills – and the inevitability– of old age and approaching death.

 How do we reconcile the fact that developed countries like the US are “overmedicated” while countries in Africa and Asia can be in urgent need of better health care? Should we pursue progress in health care as a global goal?

It is indeed difficult to contemplate the disparity between overtreatment, the exorbitant cost of treatments and the intensive therapies given to those near the end of life in the U.S. while so many others – within our nation as well as throughout the developing world — cannot gain access to what are today considered preventive and curative interventions.  Yes, we should pursue progress in health care as a global goal.  But the American experience, especially our culture of complaint about too much technology near the end of life, should be viewed as a cautionary tale for other locales.  What do we mean by medical progress in the first place?  As the most advanced technologies in the industrialized world come to be taken up elsewhere (for example, ventilators in intensive care units; costly cancer drugs; cardiac implantable devices; expensive diagnostic and surgical tools) the question, “what kind of progress?” looms large.   This is a rich area of study for anthropologists, sociologists and public health scholars and will continue to be so in the future.

 What are “living donors”?

“Living donors” are individuals who decide to give a kidney or a portion of their liver to a sick person in need of an organ.  There are at least several reasons why transplantation with organs from living donors is occurring with increasing frequency today. Medical science has shown that most individuals can live healthy lives with just one kidney, and giving away a portion of one’s liver does not undermine health. Demand for organs far outpaces the deceased donor organ supply. Today over 100,000 people are on the U.S. national waiting list for a deceased donor kidney. Yet the number of available kidneys has remained static, at about 13,000, for more than a decade.  Older persons now contribute to the growing demand, and approximately 15% of the deceased donor supply goes to persons age 65 and over.  Studies reveal that recipients of kidneys from living donors live slightly longer on average than those who get kidneys from deceased donors. Taken together, these facts put enormous pressure on families, friends, acquaintances and sometimes strangers to offer to donate a kidney to someone in need.  Finally internet solicitation of living donors has emerged in recent years, contributing to the ordinariness of asking for, offering, and accepting a kidney from a living person.

Are quandaries about options, costs, obligations, and risks also present in medical arenas other than terminal illness, such as pediatrics or obstetrics? 

Yes. The value of patient autonomy in health care, together with the demise of physician paternalism, has placed the onus for decision-making on patients, and often on their families.  Quandaries arise for patients and sometimes for doctors in all branches of medicine when more than one treatment option for a particular problem is available. And there is always the potential choice of no treatment.  Which option to choose is particularly troublesome in the case of life-threatening illness, regardless of age. For example, are the risks of one treatment greater than another, or greater than no treatment? Will the costs of all treatments, especially experimental therapies, be covered by insurance?

 Are all life-prolonging procedures negative?

Certainly not!  Medicine’s ability to prolong wanted life through both low-tech and high-tech interventions is positive.  The problem of where to draw the line arises because of the perfect storm we find ourselves in today. The socio-medical imperative to employ those life-prolonging and death-defying techniques now exists in an ever-aging society in which private industry churns out greater numbers of interventions than ever before; in which no age or cost limits exist for Medicare reimbursement of those procedures; in which many older persons, their families and their health providers must consider whether additional treatment will bring with it pain and suffering; and in which saying ‘no’ to advanced, expensive or new procedures seems somehow suspect or ethically wrong. These features of American society and health care organization have spurred our currently lively national conversation about whether staving off death is always the best thing to do.

 Where should we draw the ethical line between putting a brake to excessive treatment and the patients’ and their family members’ wish to stay alive?   

There is no easy or precise answer to this question.  The reasons this question has become a pressing socio-cultural theme today are the subject of Ordinary Medicine.  Our insurance industry has not been able to create guidelines for such a line. When Medicare, our national health insurance system for citizens age 65 and above, was established in 1965-66, no cost or age limits were set on reimbursement for therapies. Though the subject of limits to reimbursement – one means for drawing such a line — has been broached in the years since then, there has not been the political will to change the status quo. Neither physicians nor consumers of health care have been able to effectively draw such a line either, and both groups show great variation in on-the-ground practice.  For more than two decades doctors have complained that some patients and their families demand treatments that are futile and may cause suffering at life’s end. On the other hand patients and families also complain that physicians pursue aggressive treatments way too long, sometimes against their wishes. In my experience both views are correct and both groups are culpable.

 How would you relate Ordinary Medicine to your previous book, And a Time to Die?

Ordinary Medicine is the companion volume, or prequel, if you will, to ...And a Time To Die.   I examined one feature of the quandary about enough or too much treatment and when to stop in …And a Time to Die. There I described hospital death and the social and structural forces that shape the ways many Americans die in the United States.  I explained how, unless and until someone says stop, the bureaucracy of the American hospital itself “moves things along” by channeling doctors and patients toward the most intensive, aggressive treatments, even when people claim they do not want those treatments, and even when death (which is rarely mentioned or expected) is imminent.  But what happens in the hospital when a patient is near death provides only one piece of the answer to why the default setting of medicine is more treatment.   Ordinary Medicine examines the upstream forces, beyond hospital walls, that are at the source of the standard more-is-better approach and that shape the organization of medical treatments.  The new book focuses on the multi-billion dollar research enterprise, especially the ascendance of the value of evidence-based medicine and the surge in clinical trials that shape so much about health care delivery since the turn of the millennium.

Those developments, in turn, determine insurance reimbursement, standards of care, and what physicians and patients agonize over and decide to do.

 How has the medical scene changed in the past ten years?

The good news is that despite the increased influence of the drug and device companies in promoting the use of aggressive treatments in later life, and even though the technological imperative in medicine remains a powerful driver, the medical scene has changed in the past decade for the better and continues to do so.  Palliative care has been accepted by greater numbers of doctors, patients, families and hospitals than in the past.  It is taught in medical schools.  A groundswell of books, medical articles, and reports in mainstream media outlets has appeared describing the problem of too much technological intervention for persons in later life and what needs to change.  The right-to-die consumer movement in health care has gained adherents and makes front-page news. Solutions to waste, overtreatment, futile intervention and patient and family suffering have been implemented in many medical centers and physician groups.  Hospitals, patient advocacy groups, and regional health care systems are working in various ways to change the default away from more so that age, comfort, meaning and mortality are acknowledged.  Yet there is still a long way to go because of the contradictory fact that we desire advanced, even experimental medical interventions without limit at the same time that we deplore the overuse of those tools and the suffering they sometimes cause.  In that way the quandary of the line continues to have profound effects.

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New Books in May

Happy May Day! We are delighted to bring in the new month with a list of great new books that will be coming out in May.

Ferguson_cvr_front_REVIn Give a Man a Fish: Reflections on the New Politics of Distribution, James Ferguson  examines the rise of social welfare programs in southern Africa in which states give cash payments to their low income citizens. These programs, Ferguson argues, offer new opportunities for political mobilization and inspire new ways to think about issues of production, distribution, markets, labor and unemployment.

Reading across archives, canons, and continents, Lisa Lowe examines the relationships between Europe, Asia, and the Americas in the late eighteenth- and early nineteenth- centuries in The Intimacies of Four Continents. She argues that Western liberal ideology, African slavery, Asian indentured labor, colonialism and trade must be understood as being mutually constitutive.

Sharon R. Kaufman examines the quandary of patients, families and doctors not knowing the point where enough medical treatment becomes too much treatment in in Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. A hidden chain of drivers among science, industry, new technology, and insurance spur this quandary, serving to obscure the ability to identify the difference between extraordinary and ordinary medicine.

Erjavec cover image, 5872-5

Aesthetic Revolutions and Twentieth-Century Avant-Garde Movements, a collection edited by Aleš Erjavec, categorizes aesthetic avant-garde art as art that seeks to politically transform society and argues that such art is essential for political revolution. It provides seven in-depth analyses of twentieth-century aesthetic avant-garde art movements and examines them in relation to revolutionary politics.

In Revolt of the Saints: Memory and Redemption in the Twilight of Brazilian Racial Democracy, anthropologist John F. Collins explores shifts in racial identification in Brazil by examining the transformation of a celebrated Afro-Brazilian neighborhood in Salvador, Brazil from a red light district into an idealized UNESCO World Heritage Site, wherein its residents were celebrated yet stigmatized and expelled.

Ma cover image, 5876-3Jean Ma shows how the rise and domination of singing actresses—or songstresses—in Chinese cinema attests to the changing roles of women in urban modernity, the complex symbiosis between the film and music industries, and the distinctive gendering of lyrical expression in Sounding the Modern Woman: The Songstress in Chinese Cinema.