by Steven Hatch
But so, too, did he point out the stories that at least got part of the story right, which was that this undeniably big technological leap may not translate to a clinical benefit, and may simply exacerbate the underlying problem of false positives and the harm that may result from them, especially in women younger than fifty. Those organizations called out for varying levels of praise included USA Today, the New York Times, the Boston Globe, and the Wall Street Journal. Whether the work of Schwitzer and the many experts that comprise HealthNewsReview in its reincarnated state will be appreciated for its value is unclear, but at least they are back at it.
The End
Through efforts like the grading scheme introduced by the USPSTF or the publication of guidelines that emphasize the limitations of evidence such as those seen in the JNC8 hypertension recommendations, we’re beginning to see the conversation about uncertainty take place between specialists and laypeople. Yet these documents are still fairly technical and, although they are eminently readable, are mostly accessed by professionals rather than the general public. Still, the fact that these items are becoming ever more explicit in stressing the uncertainty attached to current medical knowledge and practice is representative of a growing awareness among medical researchers and public health authorities that we must have this conversation as medicine becomes ever more complex and intimidating.
The media has far to go in terms of enabling this conversation, although as noted above, some reporters and news organizations get it right. Among doctors, nurses, social workers, psychologists, and everyone else who can claim the title of health-care worker, the conversation is not yet happening in a systematic way, although those guidelines may offer a picture of things to come. Currently medical schools, as a rule, still encourage a model in which students are appraised by knowing right answers, choosing them among a field of wrong answers. That measures a certain type of knowledge essential to medical practice, but it consequently engenders a conception of medicine best described as overly certain, and residency and fellowship directors must spend part of their energies remolding their trainees to be aware of the pitfalls of this approach. Most nascent doctors are not judged on being able to express uncertainty to their patients, but, given the changing nature of guidelines and the many examples of uncertainty that we have seen in this book, some medical school deans may begin to incorporate those concepts at an earlier phase in physician training than we do at this time.
There is a place where a direct conversation about uncertainty is taking form. Health-care workers, alongside patients and families, are starting to wrestle openly with the challenges and opportunities that uncertainty brings to a medical problem. This place is not in a simulator at an academic center, nor is it in an experimental holistic-healing alternative medicine nationwide movement. In fact, the conversation is taking place in what at first glance might seem the least hospitable of environments, where the stakes could not be higher and the tension and anxiety experienced by patients and their families take them to the breaking point. As the Foreword described, the conversation about uncertainty—and a formal analysis of its promise and perils—is happening in intensive care units across the country.
An ICU is about the most intimidating environment possible for a layperson. The activity is frenetic, and the advanced technology is omnipresent. The pinging and beeping of every conceivable machine can paralyze family members with fear. Don’t look at the monitors, and ignore the alarms is almost always among the first things I say to family members when I am involved in the care of an ICU patient, as they anxiously glance at cycling blood pressures or react to a drop in their loved one’s heart rate by nearly fainting themselves. By definition, if you are in the ICU, you are there because you are potentially facing the end of your life, and you require the lifesaving equipment and personnel that ICUs provide. Patients are, it goes without saying, almost always quite ill. Their family members wear their tensions on their sleeve, and if they aren’t exhausted initially, they often become that way, and with each passing day, their nerves fray bit by bit. As I noted above, even I experienced it as a son when my father was critically ill. I was intimately familiar with the rhythms and noise of the place, so I felt only a fraction of the anxiety that others must normally feel, and even for me it was a brutal assault on the senses. It’s a very tough setting.
So it comes as something of a surprise that the ICU has become a testing ground for transparency about uncertainty. After all, in the midst of the chaos and tension, having frank discussions with families about what may be moderate or even high levels of uncertainty at the very moment their loved one is at their most vulnerable could seem like sheer folly. But a small cadre of professionals from various disciplines have posited that the ICU may be the optimal environment to test the theory that more openness from medical professionals—including honest assessments about uncertainty—leads patients and family members to believe they have greater control over their decisions, not less. Transparency in the ICU offers readers a living, positive proof of the potential we have to experience and improve medicine though embracing uncertainty.
It is still very much a new approach, but it is spreading across the country and gradually gaining acceptance. The origins of what is now increasingly called ICU family rounds lay in observations from the late 1990s that lack of communication from medical professionals was a much greater source of frustration to families than perceptions about competency or dedication of the staff or even the overall care of the patients themselves. There isn’t an overwhelming amount of research devoted to the topic, but what work has been done highlights a classic flaw of the modern medical machine: patients can be cared for with the finest technology and be saved from what would otherwise be almost certain death, and yet, because scant attention is paid to keeping the lines of communication open, patients and family members can nevertheless emerge from such experiences feeling sullied and violated.
Thus, the original concept of ICU family rounds was meant to overcome the problem of communication, and wasn’t thought of as a chance to hold a seminar on epistemology. Not altogether surprisingly, the early literature discussing the potential benefits of family rounds could be found in the pages of nursing journals, because nurses are on the front lines of patient care and are much more likely to be aware of the vibes of frustration emanating from families as they try to comprehend the complexities involved in an ICU stay. Among physicians, many of the initial forays that considered how to incorporate families into ICU rounds occurred in pediatric intensive care journals. But the idea has spread, and although I am an outsider to the daily practice of intensive care medicine, it seems to me to be gaining some traction.
ICU family rounds may have been conceived as a tool to improve communication, but all physicians who have done some training in intensive care medicine know that it is exceedingly rare to find a case where one can interpret the avalanche of information into a coherent whole for which there is one single treatment devoid of any downsides—so uncertainty as a topic simply can’t be avoided if one chooses to adopt this model. Uncertainty of varying levels rules the scene: Do we give blood thinners for what may be a serious heart attack and in doing so risk a life-threatening colonic bleed? Do we subject a patient with a tenuous respiratory status to a bronchoscopy if it means that we may worsen the problem and end up causing the very intubation and dependence on the respirator that we are trying to avoid? Such kinds of questions are part and parcel of the treatment of critically ill patients, and the consequence of being transparent with families, and sometimes the patients themselves, is that these questions have to be addressed openly.
In keeping with the experimentation of this new method, not all ICU family rounds are the same. Some ICUs still tend toward a more traditional model and have simply organized the daily schedule to optimize communication, performing staff rounds separately but setting aside an hour—say, in the late morning—when the nurses and physicians are available primarily to discuss the patients�
� plans of care with families. Such an approach allows family members to know precisely when they can find the team and avoids one of the major hassles associated with communication. But there are more aggressive approaches, the most profound of which is to simply bring families right to the patient’s bedside and let them not only observe but to an extent participate in daily rounds.
In a medium-sized community hospital in Salem, Massachusetts, a group of intensive care nurses and physicians chose the latter strategy. Writing in a newsletter published by the Massachusetts Board of Registration in Medicine in early 2014, Dr. Barrett Kitch of the North Shore Medical Center discussed his group’s experience with this more radical form of ICU family rounds. It reads like a primer on how doctors and nurses can have the conversation about uncertainty and in doing so enable rather than exasperate patients and families. “The initial reaction to the proposal was one of skepticism,” Kitch wrote. “Patients’ families would become worried about information that shouldn’t worry them. They would become distrustful because they would hear us (physicians, nurses, respiratory therapists) second guessing ourselves. They would get lost in the details and miss the important message.”*
I can’t help but be amused by this last objection because, as part of my work in an academic medical center, with multiple specialists coming and going on a daily basis, I have firsthand witnessed the more traditional model in which attending physicians hurriedly sweep into a room, make a bunch of pronouncements about a patient’s problems that could be spoken just as easily in Sumerian as in English because one could hardly tell the difference, and proceed to sweep back out with no less alacrity, leaving patients and families behind in a cloud of mystified dust. It’s certainly possible that exposing families to medical or surgical ICU rounds in its raw state might cause people to get lost in the details, but from where I stand that’s probably nothing worse than the current situation.
After convincing some of these skeptics to allow a pilot trial, the results were impressive: “[The medical staff] reported that the families were extraordinarily appreciative,” Kitch noted. And in a phrase that couldn’t be better suited to this book’s thesis, he added, “[The families] shared that transparency paradoxically seemed to increase trust despite more openness about our uncertainty, our second-guessing, or our lack of consensus as to the treatments needed for their loved ones” (my emphasis). The pilot program did overcome the more skeptical members of the staff, and this rather remarkable form of specialist/layperson interaction has been the standard of care there ever since.
Notably, rounds are not intended to be a form of participatory decision making. Despite this, they have allowed family members to feel some comfort by understanding the process, and they have enabled situations where family meetings can take place to discuss the weighty goals of care, which often involve questions of life and death. These family meetings, of course, take place in all ICUs across the world, but one gets the impression that the families in Salem might be better prepared and less mystified.
Because the ICU family rounds as practiced at North Shore Hospital is not a rolling family meeting, it is not a perfect model for how to conduct the conversation about uncertainty. The staff don’t trouble themselves to explain their jargon (Dr. Kitch wrote that “rounds were not simplified so that they could be understood by the layperson. . . . [W]e spoke in the language of the healthcare worker.”), and they make no real attempt to modify their rounding structure. Yet the fact that their form of rounding has succeeded demonstrates that families—and, by extension, patients—are able on the whole to live with uncertainty without regarding the staff as a bunch of dunderheads, and without being paralyzed by fear. They have shown that we need not pretend uncertainty doesn’t exist at the edge of life. How much more can be gained when, in other, less anxious environments, the specialists do explain in plain language the conundrums that they face in making treatment decisions?
Our age is one where there appears to be little time for reflection about what we know and what we do not, not only in medicine but in almost any aspect of our lives. The gradual process by which we have squeezed out that area where we can ponder the limits of our knowledge has come via the ever-increasing yowls of the overly certain, who as a rule have something profitable to peddle. Part of the point of having the conversation about uncertainty at all is to reclaim that space where we can contemplate our goals—for our health, our jobs, and our sense of meaning.
We are capable of achieving it.
Acknowledgments
I had been thinking in a vague way about writing a book dealing with the ambiguities inherent in medical knowledge since I was in residency many years ago. Those thoughts crystallized during a series of seminars led by Robert Goldberg, an epidemiological researcher at the University of Massachusetts Medical School. Rob is a source of much insight on the subject of trial design, interpretation of medical literature, and biostatistics, all of which he serves up with a dash of dry wit. He also introduced me to the remarkable story of diethylstilbestrol and how it revolutionized obstetrics. Much thanks to him.
As part of those seminars, I was lucky enough to work with a small group of physicians and scientists at the junior faculty level, all of whom were starting careers in clinical research, and their perspicacity and energy was an early inspiration to write this book. In particular, Wendy Marsh’s research on the effects of menopause on mood disorders in women fascinated me from the moment she explained it. Many of the topics that I write about here were initially stimulated from my thinking about the challenges of doing the kind of research that Wendy does, and I’m grateful for her willingness to discuss her work with me, as well as the pick-me-up lunch talks we have from time to time as we keep tabs on each other’s careers.
In my home of internal medicine, I deeply appreciate the advice and encouragement of Oscar Starobin, who has since retired and whose presence will be sorely missed by his UMass colleagues. Thanks to him, Naomi Botkin, and Nancy Skehan for reviewing portions of the manuscript; thanks also to Brad Switzer and Glenn Kershaw for providing their insights from their respective areas of expertise in oncology and nephrology. An abbreviated list of other folks from UMass who have been aware of my work and have offered helpful thoughts and moral support include Kimberly Cullen, Rebecca Lumsden, Mary Philbin, David Clive, Trish McQuilkin, Allen Chang, Mary Hawthorne, Sara Jacques, Rick Forster, Linda Paszkowski, Mary Roberts, and Jackie St. Martin.
All of my colleagues in infectious diseases have played a part in shaping my thinking on these matters, and I’m appreciative of their carefully considered opinions, even including the sometimes gladiatorial manner in which they are delivered. Of these, I’d especially like to thank Mireya Wessolossky, Sonia Chimienti, Jennifer Daly, and Doug Golenbock for maintaining faith in me during some tough stretches—why they did so is a separate matter—as well as Gail Scully for our ongoing discussions about overdiagnosis and the general state of modern health care, and David Bebinger for all of the above and being my ID homeboy. Special thanks also goes to Kathy Scalley and Ann Carroll for all of their support, to say nothing of their saintly tolerance of the more eccentric aspects of my personality, over the many years I’ve been at UMass.
Judy Ockene was always gracious in offering her insights on mammography and her work on the USPSTF. My former mentor Linden Hu of Tufts University kindly provided help by reviewing the chapter on Lyme. Further afield, thanks to Sasha Retana for thoughtful critiques both substantive and grammatical, Sid Pazol for helping me track down the Bertrand Russell quote that had been rattling around in my brain for twenty-five years, William Krieger for serving as a general sounding board of ideas, Vitaly Belyshev for introducing me to London Hospital, Noam Shoresh and Doris Damian for insights and feedback on statistical matters, and Beth Giladi for all her encouragement and allowing me to read early drafts to her.
Of my many professional influences, Alan Rothman deserves special mention. Although Alan did not make any direct contribution to thi
s book, his intellectual footprints can be found all over it. My philosophy of the social aspects of medicine was in place long before I met Alan, but he has had an enormous impact on my understanding of how to think about data, and I suspect I’m not only a better doctor but a better human being as a result of being exposed to his cautious, rigorous approach to knowledge.
Thanks to the Basic Books family, T. J. Kelleher, Ben Platt, and Quynh Do, for their helpful feedback. Their insights have made this a better book. Likewise, I very much appreciate the postmanuscript help from Melissa Veronesi, as well as the amazeballs copyediting skills, to say nothing of the exceptionally kind words, of Carrie Watterson. A big thanks to Andy Ross, my agent, for taking me off the slush pile and for providing three years of fruitful and thoroughly enjoyable collaboration.
Three people have stood by me offering encouragement since well before I began to conceive of this work. They have known more than anyone the importance that writing has held in my life, and they have come to see how important medicine is in it. They have been tireless readers whose frequently irrational optimism has buoyed my spirits over long stretches. I can’t really convey the gratitude I feel toward Lee Hatch, Mark Meyers, and Miriam Tuchman, so I won’t try beyond writing this paragraph.
Finally, to Erez and Ariella: thanks for being understanding about the many hours I have sat in the office clattering away on the keyboard. Dad’s obsessive in that way. I love you more than anything in the world.
Appendix
A Very Nonmathematical Description of Statistical Significance