The Good Doctor (32 page)

Me too.

Epilogue

The ethical conflicts between my father and me, and between his generation of physicians and mine, are not merely of historical interest. On the one hand, most experts would agree that patient autonomy has triumphed over physician-based paternalism. One visit to a meeting of a hospital ethics committee or an institutional review board in charge of evaluating research protocols should demonstrate the primacy of informed consent. Nothing can be done to a patient or subject without his or her explicit approval. Similarly, thanks to the Internet, many patients and families dealing with complicated medical decisions at times know as much or more than their doctors. AIDS patients in the 1980s and 1990s were especially known for their expertise, but many modern cancer patients—and individuals with rare diseases—are equally knowledgeable. In addition, patients with terminal diseases have taken the initiative in setting limits to their treatment and, in certain states, can avail themselves of physician-assisted suicide.

On the other hand, as can be seen by the growing number of articles on the limits of autonomy and the myth of self-governance at a time of illness, the triumph of patients’ rights has never really been complete. There are plenty of patients and families with little interest in making their own medical decisions. “What do you think I should do, Doctor?” is a common question in my office. In some instances, the ramifications of various choices are so genuinely complicated that it makes little sense to expect laypeople to know what should be done. Research has shown that the more options patients are given, the more likely they are to throw up their hands and ask the doctor what to do. Just as paternalism’s historical moment came under fire, so, too, has the historical moment of pure autonomy.

Given these barriers to the autonomy model, some educators have promoted the idea of shared decision making, in which a health-care provider and a patient work together to review the scientific literature and the patient’s preferences to reach decisions. A recent development in the field of shared decision making that would have been of great interest to my father is the Physician Orders for Life-Sustaining Treatment (POLST) form, in which, after discussions with a patient, a physician places an actual order in the medical chart specifying what types of medical care will be offered at the end of life.

It is hard to object to the concept of shared decision making. Indeed, it is more or less what I practice in my office, especially when dealing with complicated medical decisions such as cancer screening, in which the scientific literature gives conflicting recommendations. But I think my father would have argued that doctors can still do better.

As I learned from his journals, my dad practiced a style of medicine in which he immersed himself in both the medical and emotional aspects of the case. He not only knew the science but also had vast clinical experience, giving him information that one could not obtain from simply reading the results of randomized clinical trials. This is just the sort of knowledge that his never-published article on antibiotics would have stressed: giving only as much medication as was necessary, tailoring the antibiotic choice to the type and severity of the infection, distinguishing dangerous from benign bacteria, and, occasionally, withdrawing all antibiotics and letting the patient’s immune system take over. Further, my father made a point of getting to know as much about his patients as he could, including their backgrounds, their beliefs, and their previous encounters with the medical system. He even agreed to be the repository for their anger and frustration—as long as they would then follow his advice. Armed with all this knowledge, making expert recommendations to his patients followed naturally, as did the patients’ acceptance of his advice.

It is not as if my dad disregarded patients’ wishes and simply told them what to do. To the contrary, he believed that it was his job to incorporate what he had learned about them into his ultimate medical recommendations. Interestingly, Dartmouth physician and researcher Albert G. Mulley Jr. has recently championed a similar concept in which doctors attempt to diagnose their patients’ preferences, thereby leading to more accurate assessments of what patients really want. This, then, may be the ultimate goal of the therapeutic interaction: trying to arrive at the
best
choices for the patient—not merely the ones that empowered patients would choose on their own. Of course, having said this, it remains crucial not to silence patients or force choices onto them, two things done routinely in the era of paternalism.

Moreover, the time may be especially ripe for reviving the type of expert advice that my father sought to provide. We are gradually entering an era of what is being called personalized or individualized medicine. Traditionally, physicians have confronted disease by using blood tests, culture results, X-ray imaging, and tissue specimens to diagnose and then treat specific conditions. The new paradigm draws on the observation that diseases differ in different patients. For example, different breast cancers have different genetic patterns, and these patterns help to determine how aggressive the cancers are and which treatments will and will not be effective. Meanwhile, because of genetic variation between individuals, drugs that work for some people may not be good choices for others. To the degree that the information generated by personalized medicine is accurate, there may be fewer instances in which doctors and patients need to compare the risks and benefits of specific interventions. That is, there may be one best course of action that wise and compassionate physicians can guide their patients to take. The same type of personalized approach is applicable to controversial screening tests. For example, mammography may be more beneficial for certain patients than for others.

A second important development is the passage of the Affordable Care Act, President Barack Obama’s effort to expand health care coverage for Americans. A primary mechanism for accomplishing this goal is to rein in spending, which has spiraled out of control. As of this writing, health care makes up over 17 percent of the US gross national product, but Americans do not have substantially better health outcomes than citizens in countries that spend considerably less. Roughly one-quarter of Medicare spending occurs during the final year of patients’ lives, suggesting that expensive technologies are being used on elderly patients who will soon die anyway. Blame for the excessive spending can be directed at several factors: fee-for-service physicians who liberally and reflexively order tests and therapies that are of limited value; pharmaceutical and technology companies that aggressively promote their products through direct-to-consumer advertising; and, more broadly, a culture that defies—rather than accepts—the inevitability of death. Also contributing are patients and families who automatically tell doctors to do everything when doing less would be appropriate. Perhaps the most famous patient in this regard was the writer Susan Sontag, who, her son later wrote, would not hear that she was dying. Sontag essentially bullied her doctors into trying all conceivable therapies for her fatal leukemia, although the treatments only prolonged her suffering.

As health-care reform efforts proceed, there is a role for good doctors who strive to know the scientific literature and who use that knowledge to help patients appreciate the likely value of technological interventions in the context of their own specific cases. My father loved the challenge of choosing antibiotics and curing patients, but he vehemently opposed treating infection after infection in perennially hospitalized demented patients with a poor quality of life—let alone allowing them to return to the intensive care unit or be placed on a breathing machine. My dad knew when to be aggressive and when it was smarter to pull back and stop the cycle of more and more testing—much like an experienced cardiologist might reassure a patient with a supposedly abnormal electrocardiogram that it is a normal variant, or a veteran neurologist might defer head scans when patients’ headaches can be explained by doing a careful history and physical examination. This type of clinical judgment, which physician-writer Abraham Verghese and others have referred to as “bedside medicine” or the “art of medicine,” seems especially important in an era in which the results of technological studies increasingly dictate physician behaviors and drive up costs.

What about death and dying in an era of health-care reform? The medical futility movement of the 1990s failed, in part, due to concerns that physicians like Phillip Lerner were championing the concept as a way to reassert their authority in managing death and dying. But my dad thought that judgments about futility emerged logically when knowledgeable and experienced physicians interacted with dying patients and their families in an intimate and ongoing manner. So it should come as no surprise that modern specialists in palliative care, who have expertise in assessing the physical and emotional costs of illness, have reinvigorated the futility debate in a way that emphasizes both their knowledge of the end-of-life literature and their hands-on approach to patient care. In a recent article in the
Journal of the American Medical Association
, for example, Columbia University palliative medicine specialist Craig D. Blinderman and colleagues proposed that instead of assuming CPR must always be offered, physicians should use a three-tiered approach when discussing its use with seriously ill patients: (1) consider CPR as a plausible option; (2) recommend against CPR; or (3) do not offer CPR. The hope is that this sort of framework can teach patients that resuscitation is not the choice in all cases but rather an option in those circumstances when it has a viable chance of being beneficial.

Of course, there are barriers to these efforts. One of these could not be more clearly demonstrated than in my father’s case. Despite having a severely debilitating disease, my dad seemed content and even expressed a willingness to allow heroic technologies if they became necessary to save his life. That he had railed against this type of decision for years made his choice even more ironic. The fact remains that we are drawn to the use of antibiotics, respirators, and other interventions even when they may, at best, prolong suffering. In many cases, they even exacerbate it.

That is why it is good that palliative care and hospice teams now populate hospitals and nursing homes. Home hospice is another program that can address the complicated issues surrounding death and dying. Unfortunately, political opponents played on the public’s fears and derailed the plan to fund discussions of end-of-life options through the Affordable Care Act, claiming that this effort would lead to the creation of “death panels,” in which bureaucrats would supposedly use impersonal guidelines to unilaterally discontinue therapy. However, it is my experience that patients and families welcome thoughtful conversations about the limits of medicine with well-informed doctors who they trust. A 2013 survey by the Pew Research Center reported that two-thirds of Americans believe that there are circumstances in which doctors and nurses should allow patients to die. But such discussions should not necessarily end with the denial of aggressive treatments by physicians and insurers. Rather, the idea is to enable patients and families to understand the pros and cons of interventions from both a medical and a financial perspective.

Another important barrier to improving doctor-patient communication is inadequate time. Meaningful interactions and conversations may not occur because, more than ever, physicians face limits on how much time they can spend with patients. House officers who wish to stay late and talk with their patients are often sent home lest they accidentally spend too many hours in the hospital. An office-based practitioner is expected to see a new patient every fifteen to twenty minutes to compensate for low reimbursement rates. My father’s work as an academic and a consultant with a minimal private practice allowed him the luxury of spending protracted amounts of time with patients. Fortunately, innovative team-based models for providing health care, such as the Patient Centered Medical Home, use computers, phone calls, and home visits to maximize the ability of physicians, physician assistants, nurse-practitioners, and clinical nurse specialists to use their skills most efficiently. The hope is that such models will give team members the time, when necessary, for more in-depth discussions about complicated medical issues.

Medicine today is a technological marvel. As I was writing this epilogue, I learned that scientists had discovered genetic patterns shared among patients with the most severe cases of breast, ovarian, and uterine cancers, raising the possibility of treatment breakthroughs for all three diseases. The New York Genome Center is conducting a research study in which full genomic sequencing of malignant glioblastomas will generate individualized treatment strategies for patients previously thought to all have the “same” disease. I also recently read that surgeons at the Children’s Hospital of Illinois had inserted a tissue-engineered bio-artificial trachea in a two-year-old Korean girl born without a windpipe. Closer to home, my colleagues at New York University Langone Medical Center diagnosed a rare pancreatic cancer known as an insulinoma through elastography, a new technique in which a computer processes sound waves to produce images of tumors. Meanwhile, with respect to medical ethics, we have largely learned to do the right thing. Aside from occasional lapses, those scandals in which researchers, hospitals, or other representatives of the medical community run roughshod over the rights of patients or study subjects have largely disappeared. Ethics committees and institutional review boards are ubiquitous. The 2012 Sunshine Act requires online posting of all instances in which physicians receive anything more than trivial gifts from pharmaceutical companies or other commercial industries, making it easy to detect potential conflicts of interest. Finally, patients can access the Internet for information about standards of care, clinical trials, and new discoveries.

Yet in making all of this progress, we have lost something. The emphasis in the doctor-patient relationship has shifted from physicians getting to know patients and their illnesses to physicians doing things for patients and their illnesses. Most internists are actually quite adept at discussing the risks and benefits of mammograms, colonoscopies, and cholesterol pills, as well as the importance of DNR and consent forms, but not so good at just sitting and talking about how things are going. For several decades, using the skills he had learned from his mentors and the wisdom he had learned from his patients, my father was able to balance science, ethics, and humanism. It is my hope that this book will encourage current and future practitioners to do the same.