Title: Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line
Author: Sharon R. Kaufman
Publisher: Duke University Press
Publication date: May 29, 2015
Price: $26.95 paperback, 336 pages
Medicine has changed radically over the past 15 years. Who doesn’t welcome the availability of cholesterol-lowing drugs, joint replacements and arthroscopic surgery, and the antiretroviral drugs that have made AIDS a chronic, manageable disease? In oncology, advances in therapeutic options have greatly improved the 5-year survival rates and the quality of life of patients with cancer.
However, medical advances also prove problematic, in that they sometimes have unintended consequences that create ethical dilemmas. For instance, trauma care has reached a point of technical skill that saves lives that just a decade or so ago would have been lost. The most dramatic examples of these medical advances are seen on the battlefield, where soldiers survive breathtaking physical trauma.
Moreover, sometimes the quality of life after surviving catastrophic brain trauma, for instance, can raise ethical questions, such as Where do we draw the line and factor in a person’s quality of life as a survivor before initiating heroic medical efforts? Or is that a question doctors should not have to answer? Is it the profession’s charter to save lives at any cost? This is the thorny and intellectually fertile terrain that author Sharon R. Kaufman tackles in her fine new book Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line.
The Line Between Enough and Too Much
Ms. Kaufman, a medical anthropologist at the University of California, San Francisco, is also the author of the well-received book And a Time to Die: How American Hospitals Shape the End of Life. In this new book, Ms. Kaufman builds on the basic theme that most humans want medical advances that extend their lives, contending that the line between life-giving therapies and too much treatment is difficult to see, as it is often obscured by a perfect storm created by the pharmaceutical and biomedical industries, along with insurance companies.
Even deeper, the author investigates what drives that “perfect storm,” laying much of the blame on our country’s more-is-better approach to medicine; in her view, this approach has created a chain of social, economic, and bureaucratic forces that has ultimately made once-extraordinary medical treatments seem ordinary, necessary, and desirable. In the preface, Ms. Kaufman states that since 2002, she has listened to “hundreds of older patients, their physicians, and family members express their hopes, fears, and reasoning as they faced the line between enough and too much intervention.”
This is a well-researched book about vital public policy, which much of the lay public will have little interest in. In style, it blends compelling narrative with wonky policy issues. Although slightly dry, given the multitude of permutations in health care, from reimbursement to arguments over “death panels,” Ordinary Medicine is a worthwhile book for The ASCO Post readership.
‘Medical Industrial Complex’
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 patients and doctors ultimately talk about and decide to do.
As Ms. Kaufman writes, this discussion, although always of value, isn’t new. “In 1980, Arnold Relman, MD, then editor of The New England Journal of Medicine, coined the phrase ‘medical industrial complex’ 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, Dr. 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.’”
The worries Dr. 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. No one could argue that medicine has changed dramatically, but its demise as a social good will certainly raise eyebrows.
To her credit, Ms. Kaufman puts a face on the medical complex that she casts as a villain. The reader meets patients with cancer and people with kidney failure, all trying to survive and navigate their way through the complexities of our $3 trillion system.
During the sections dealing with the Affordable Care Act, Ms. Kaufman does a credible and unsentimental job describing the disparities that exist in the haves and have-nots in our country. No matter what side of the political fence one might be, it becomes clear that the Affordable Care Act, at least for patients with cancer, is a good thing. The ASCO Post readers will empathize with patients with cancer who struggle with large, financially crippling co-pays. Although drug pricing is a contentious issue in the oncology community, Ms. Kaufman only scrapes the surface of this complicated issue.
Policy Discussions and Organ Transplantation
It is the policy discussions to which The ASCO Post readers will be drawn. For instance, Ms. Kaufman contends that 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,” she writes.
This is a bold accusation that reverberates through the medical community, especially the oncology community. In short, Ms. Kaufman is weaving a conspiracy among industry and doctors that influences prescribing habits. And she does so without embedded references. Careful readers, and those with skin in the game, may take issue with her on that critical omission, one that her publisher should have insisted on.
Ms. Kaufman is at her best when assessing where to draw the line on employing new and aggressive therapies, giving a first-rate discussion on the pros and cons of organ transplantation. Here, we see incredible advances in medical technology that save lives and the ethical challenges surrounding those advances. For instance, in end-stage kidney disease, she writes, “Greater scarcity of kidneys contributes to the tyranny of putting additional pressure of time on potential living donors and their families…. Living kidney donation poses an age-old question: What are our obligations across generations?”
Criticism of American health care is at an all time high and is coming from every imaginable source, including Ms. Kaufman’s book. Her very good book is about the health-care system and the patients who are victimized by a more-is-better ethos and by those who profit from that ethos. However, she has inexplicably omitted one crucial part of the story: the incredibly talented and dedicated doctors on the front line of care. Despite that flaw, this is a worthwhile book for readers of The ASCO Post. ■