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Simone’s OncOpinion
Career development observations and advice for medical professionals from Dr. Joseph V. Simone.
Tuesday, January 10, 2017

Most oncologists get phone calls from relatives or friends about someone who has been diagnosed with cancer. Trying to be helpful, they suggest the friend or relative contact "my cousin (or uncle or classmate), the oncologist" for advice. They call and typically, we are told a sketchy story with so little information that we cannot provide even superficial comments or advice. The call often ends with our saying, "she is in good hands," or "he lives very near to (I name a good cancer program) if he wants another opinion." On occasion, we get more detailed information and face the difficult task of offering counsel without destroying the patient's confidence in the attending physician.

Less often in my own experience, my relative or friend passes on a request that I speak with the patient or spouse of the patient. These patients almost always have widespread cancer unresponsive to therapy. If it is clear from the discussion that the patient seems to be in good hands and that critical decisions must be made among difficult choices, I always honor the request.

First, what the patient or spouse (with the patient listening) asks is whether there is any other treatment out there that could help. But there is an unspoken understanding that their question also concerns the imminence of death and what course they should take. This is hard to do on the phone, some would say foolhardy. But if it seems right from what I have learned and the rapport is appropriate, I tell them what I think. Sometimes this means recommending the patient get his affairs in order, arrange for management to relieve pain or other problems, consider hospice care, and spend as much time at home with family as possible. In effect, I often confirm what their doctors had said, that the patient would die in the not-too-distant future.

The art of telling someone they will die does not come naturally. It requires confidence and experience and wisdom. I cannot explain these qualities with sufficient clarity to help someone else do it. The approach is sui generis, adapted to the teller's and the recipient's character, knowledge, and personality. It never gets easier…in fact, it may become harder as one ages.

Having to relate this opinion, and having done it all too often in my first years as a pediatric oncologist, has led me to read a great deal about death and dying over the years and to this day.

Unavoidably, it causes me to think about my own mortality. Philosophers, theologians, psychologists, and novelists have written reams about death. Many try to rationalize death in some way. They and I are looking for solace or some mechanism for facing the death of a patient or relative or friend or oneself.

I have found some understanding and a dash of comfort from these sources, but I am most touched by the poets who can, in a few words, contain volumes about the human condition, death being an integral part. The poet's oblique and figurative approach to the subject sometimes makes much more sense than the direct and rational. Here are two poems on the subject by Billy Collins, of whom I am an avid fan; he is a former Poet Laureate of America.

My Number

Is Death miles away from this house,

reaching for a window in Cincinnati

or breathing down the neck of a lost hiker

in British Columbia?


Is he too busy making arrangements,

tampering with air brakes,

scattering cancer cells like seeds,

loosening the wooden beams of roller coasters

 

to bother with my hidden cottage

that visitors find so hard to find?

 

Or is he stepping from a black car

parked at the dark end of the lane,

shaking open the familiar cloak,

its hood raised like the head of a crow,

and removing the scythe from the trunk?

 

Did you have any trouble with the directions?

I will ask, as I start talking my way out of this.

Collins thinks about death and with a few strokes describes the human condition and the mystery, apparent randomness, and loneliness of death. He wrote another poem about death inspired by a quote by Juan Ramón Jiménez: "The worst thing about death must be the first night." He explores the mystery of death and the feebleness of our ability to imagine or describe it with our catalogue of words.

First Night

before I opened you, Jiménez,

it never occurred to me that day and night

would continue to circle each other in the ring of death,

 

but now you have me wondering

if there will also be a sun and a moon

and will the dead gather to watch them rise and set

 

then repair, each soul alone,

to some ghastly equivalent of bed.

Or will the first night be the only night,

 

a darkness for which we have no other name?

How feeble our vocabulary in the face of death,

how impossible to write it down.

 

This is where language would stop,

the horse we have ridden all our lives

nearing the edge of a dizzying cliff.

The word that was in the beginning

and the word that was made flesh—

those and all the other words will cease.

 

Even now, reading you on this trellised porch,

how can I describe a sun that will shine after death?

But it is enough to frighten me

 

into paying more attention to the world's day—moon,

to sunlight bright on water

or fragmented in a grove of trees,

 

and to look more closely here at these small leaves,

these sentinel thorns,

whose employment is to guard the rose.​

Finally, after puzzling over what is beyond death and the futility of words to describe that mystery, he returns in the last three stanzas to earth to focus on what he can appreciate that is here, the beauty and the mysteries that are closer to home. A good lesson for me, too.


Monday, December 12, 2016

I wrote this column 1 week before our Presidential Election. I have been surprised at the paucity of health care policy discussion since it represents such a large part of the national budget. The only policy

I have heard is the Republican desire to kill Obamacare, and even little of that. Furthermore, discussions, when they have happened, have dealt with macroeconomics—the national cost and inefficiencies of medical care and proposed solutions, largely through changes in public policy.

But as a physician-oncologist, I believe in discussions about cancer care (including the unfortunately-named "Moonshot" effort, which has lofty goals but, as yet, no plan) to eradicate deaths and suffering from cancer. But, ultimately, I believe they must begin and end with patients and what is effective, efficient, and prudent for them.

We think we know, but sometimes our medical biases and economic interests get in the way. So I culled through my files on medical policy and the doctor-patient interface; some are years old but not much has changed. (I first mentioned this article in 2007.)

Unbalanced Cancer Care

The contrast of health care, quality, and cost in other countries is helpful when trying to grasp the problems. An article in the Wall Street Journal by Peter Landers (Jan. 11, 2007) on the intersection of health care policy and the patient was the seed for this essay; it is very instructive. The article was inspired by a speech made by Takashi Yamamoto to a session of the Japanese parliament. He announced to his fellow members that he had cancer and then he proceeded to denounce the nation's standard of cancer care. He pointed out that cancer is the No. 1 cause of death in Japan and that one in two Japanese will contract cancer and one in three will die of the disease. The article points out that the death rate from cancer in Japan has continued to climb since 1995, while it has slowly but steadily declined in the U.S. In 2004, annual Japanese deaths per 100,000 from cancer far exceeded the number in this country.

Yamamoto continued: "However, the level of cancer care differs among regions and facilities. Even when there are treatments [available], people are being told they will never get better. These abandoned 'cancer refugees' are roaming the Japanese archipelago. The health and labor ministry has set up an office for cancer policy…yet unfortunately it doesn't even have a grasp of…what level of care is being offered across the country." (We also don't have a sound and useful grasp of the quality of cancer care in our country.)

Yamamoto then spoke against Japan's low-cost medical system (reimbursement rates are typically lower than in the U.S.). "If we cut reimbursement rates any more, we will accelerate the departure from the health care front line of medical professionals, who are already suffering from overwork out of a sense of mission. Take a look at the medical expenses on the receipt you receive at the hospital. The fees for expert services…how low they are. We need to have more flexibility in setting reimbursement rates, and we need to take a fresh look at expensive items such as foreign drugs and medical equipment. Some in the government are studying a further cut in reimbursements. This will lead to the destruction of health care. (Amen, Mr. Yamamoto.) We must recognize that health care and nursing care contribute to the regional economies and create jobs."

Japan's View

So what was the response to this speech? Masaharu Nakajima, MD, a surgeon who once treated cancer patients and until recently was head of the Health Bureau of the Ministry of Health, Labor and Welfare, says Japan already offers excellent care. Mr. Yakamoto, a cancer patient and high level politician disagrees. He said that with the large national debt and corporations worried about higher taxes, Japan can't afford to throw money into treatments and training that offer little hope of significantly extending lifespans.

"If we keep going like this, Japan is going to be crushed under medical expenses." (If Nakajima is a representative of oncologists in Japan, it is a sad day for the medical profession and its values.) Concerning the demand for more medical specialists, Nakajima responded, "America did too much of this and that's why their medical costs have grown." (Our successes in treating cancer have grown even more. I wonder if Nakajima would have the same attitude if he got a serious cancer.)

The article then provides a framework for this Japanese debate. Health care spending in Japan is roughly one-half what it is in the U.S. and even lower than in Canada and Western European countries.

However, Japan has the highest life expectancy in the world for women and the fourth highest for men, and it has one of the lowest infant mortality rates. Since introducing universal health insurance coverage around 1960, its policy has focused on providing a minimum standard of care for all. Japanese citizens and Japanese industry must pay monthly health insurance fees, but the central government sets the rules and reimbursement rates. However, unlike England, the doctors are in private practice, not government employees. In the WSJ article, Landers also points out that surgeons have an even greater role in determining the course of therapy than in the U.S., including whether chemotherapy is given.

Another important cultural issue was illustrated thus: Shintaro Abe, a politician and the father of Japan's Prime Minister at that time, Shinzo Abe, was widely known to have cancer for 2 years before his death in 1991, but he was not told he had pancreatic cancer until 2 months before his death. Withholding the diagnosis is common in Japan (19th century attitudes).

Thus, the health care culture in Japan differs substantially from other economically strong countries from many angles. There is emerging change, mainly among patients. Cancer patients are organizing and pushing for changes in accessibility to care and to effective new drugs. In May 2005, 2,000 cancer patients had their first meeting in Osaka. One of its organizers, Shoichi Miura, a physician and cancer patient, gave a speech recalling the rallying image of "cancer refugee" (gan nanmin). "While Japan has become economically prosperous, cancer patients are in the same position as refugees who wander in search of food, water and someone who can help." He died 7 months later.

These efforts have borne some fruit. In April 2006, for the first time, 47 doctors who passed a rigorous exam were certified as oncologists qualified to administer chemotherapy. But the government continues to reduce reimbursement and increase co-payments by patients.

Nakajima, the former health official, reflecting the government attitude, is opposed to raising reimbursements because corporate "executives want to keep costs down." He also says that a diligent surgeon who bones up on the latest literature can do just as good as a licensed oncologist (no multidisciplinary teams there).​

Solving Cancer Issues

Rather than react with smug superiority to the Japanese system, I was struck by how many of the issues are the same in our country.

How do we balance the inherent conflict between patients' desire to obtain any care they wish and how to pay for such an open-ended system? How effective must therapy be to warrant financial support and who is to decide what therapy is effective? And how do we balance medically effective and cost effective? How do we assure patients a high standard of quality cancer care regardless of where they live? How do we assure the same standard of care for the economically disadvantaged? What are the appropriate statistics for making policy decisions in cancer care? Do longevity and infant mortality always trump other measures?

More than academic discussions of medical economics, this story highlights the issues faced by patients and policy makers. Japan's approach makes economic sense and is supported by their excellent health statistics for longevity and infant mortality, and by their strong and highly competitive economy.

But the rapidly aging Japanese populace and the related increase in cancer mortality have raised awareness to several aspects of human nature that they must deal with. Cancer is the most feared disease in economically advanced countries, Japan included. Because of this fear, cancer patients, compared to those with most other diseases, seem even more desperate for some hope to hang on to. This extraordinary fear has good and bad consequences. The good—patients often become very knowledgeable about their cancer, they are often willing to try new agents, and some become active in advocacy groups that raise awareness and funds for research and care. The bad—cancer patients in their desperation are highly vulnerable to the "try anything" approach offered by well-meaning physicians (or by charlatans), even if the approach has no rational chance of making patients' remaining days better.

We in oncology have not systematically addressed these very human issues of fear and hope. On the one hand, there is extraordinary fear and the vulnerability it creates, and on the other, how to offer reasonable hope based on intermediate goals when cure or remission is not in the cards. We need a better understanding and better tools for helping patients deal with their fears. We must not abandon patients once we know they will not respond to more cancer therapy. We must offer other kinds of hope without making the patients' remaining time a constant misery. We must always be "someone who can help."


Monday, November 28, 2016

This is the third in a series begun nearly a decade ago concerning lies and truth told to patients and families by medical caregivers. This version of the third and final entry has been updated and lightly edited.

At the beginning, I had read three articles published in the medical literature that dealt with physicians' candor and "truth-telling." I was reminded of Pontius Pilate. In the Gospel of John, this Roman political leader was asked to decide whether Jesus should be executed. He believed Jesus had committed no capital crime. When he questioned Jesus about his actions, Jesus said that he was there to bear witness to the truth. Pilate famously responded, "What is truth?" and ultimately agreed to have him executed to placate the angry and powerful crowd. Christian tradition vilifies him because he chose to sacrifice one powerless innocent man for political reasons. But there is a little bit of Pontius Pilate in all of us, as these articles attest.

Lindsay Rockwell, DO, an oncology fellow, wrote a heartfelt essay (J Clin Oncol 2007;25:454-455) that laments the lack of "truth-telling" in oncology, particularly when it comes to the issue of death. She describes a young man with myelodysplastic syndrome and his father. The father complained to her that no one had told the family that the young man was dying, despite the short remissions and the inevitability of death. She is dismayed that death was not discussed and instead the discussions concerned additional therapy, none likely to succeed.

Her essay was followed by a commentary written by Timothy Moynihan and Linda Schapira. They express concern at the potential damage failing to communicate can do and that we often do not prepare our young physicians sufficiently in this art. But though they are in general agreement with the major points of the essay, they wonder whether the father was told but didn't hear the information, whether Rockwell was present for all discussions, or whether the father refused to give up and would not to face the reality of the impending death of his son. They even wonder, "Could it be that Rockwell is expressing her own grief as guilt for not speaking up when she saw the inevitable truth?"

What Is Truth?

Farr Curlin, MD, and colleagues conducted a random survey of physicians in all types of practice by mail and received 1,144 responses to questions devised to determine the physicians' judgments about their ethical rights and obligations when patients request a legal medical procedure to which the physician objects for ethical or religious reasons (N Engl J Med 2007;356:593-600). Examples are abortion for failed contraception, giving terminal sedation to dying patients, and prescribing birth control to adolescents without parental consent. (The authors report that 52% of all respondents had ethical or religious objections to abortion for failed contraception.)

Most physicians responded that all doctors have an obligation to present all options (86%), that it is ethically permissible for doctors to explain to patients their moral objections (63%), but that they should then refer patients to another physician that has no objection to the requested procedure (71%). The authors then estimated the number of patients affected by the minority, if generalized to the entire population. They conclude that 40 million-100 million Americans have physicians who feel no obligation to present all options or who would not explain that they have moral or religious objections to the procedure and feel no obligation to refer them to a more agreeable physician.

Without questioning the sincerity and conviction of the respondents, we may ask who is more truthful, a physician who believes on ethical grounds that abortion for failed contraception is always wrong and doing anything to abet the procedure is also wrong, or the physician who believes abortion is wrong, but also holds that he cannot impose his views on patients so helps them find a willing physician? One could argue that the first is more truthful to his convictions and the second more truthful with the patient. One could also argue that the physician's first obligation is to the patient's well-being, so he must help the patient obtain the procedure she desires, even though he thinks it wrong. The counterargument is that if he believes abortion in this case is murder, that he has no choice but to avoid abetting the patient.

Telling the Truth

The third article by David Studdert, LLB, ScD, MPH, and colleagues takes an economic look at telling the truth (Health Aff J 2007;26:215-226). They asked whether full disclosure of adverse outcomes actually reduces the providers' liability exposure, as some believe. They tested this theory by modeling the litigation consequences of disclosure. They compiled data on the historical frequency of litigation when the patient suffers a severe medical injury, both when due to negligence and when not. To obtain an estimate of the net impact of litigation, the authors polled 78 experts in patient safety, risk management, malpractice liability insurance, and plaintiff litigation, including lawyers on both sides. They defined serious injury as that which leaves the patient with a permanent disability or with a temporary disability that is very severe while it lasts.

They concluded from their study that, among patients whose severe injury was due to negligence, full disclosure would deter 32 percent of patients from suing and would prompt claims by 31 percent of those who would not otherwise have sued. Among patients whose injury was not due to negligence, disclosure would deter 57 percent of those who would have sued and prompt 17 percent of those who would not have sued. Overall, the experts predicted there was a 5 percent chance that the volume of claims would decline or remain the same and a 95 percent chance they would increase; the predicted outcome of compensation cost was the same, a 6 percent chance of declining and a 94 percent chance of increasing.

The authors make a key point: about 80 percent of all serious injuries due to negligence never trigger litigation. Thus, there is a huge reservoir of unlitigated injuries meaning that a small shift in that group could have much greater financial repercussions for doctors, hospitals, and insurers than the deterrence from suing of an equal percentage of patients. Though the authors predict that full disclosure would cause an expansion of litigation and monetary consequences of potentially great magnitude, they do not say, "don't tell the patient if not forced to."

The main audience of the report is policy makers, cautioning them to consider the consequences of full disclosure policies. They point out the broad consensus that disclosure of unanticipated outcomes is desirable because, as in other industries such as aviation, openness about error is critical to development of effective prevention. They continue, "there are also compelling ethical reasons for telling patients the truth about all aspects of their care."

So what will policy makers in government, the private health industry, and medical practices do? A cynic will say they will continue to follow traditional risk management procedures, which does not include full disclosure, to contain litigation costs and overall health costs. The optimist will say they will do the right thing, full disclosure, so errors may be addressed and corrected and improve the quality of care.​

So, What Is Truth?

I am confident that every reader has opinions about each of these circumstances and I am equally confident that the most of those opinions are strongly held. But as is true for discussions of politics and religion, such case studies as those presented above often don't allow room for subtleties on any side for fear of taking a step onto a slippery slope that endangers one's bedrock principle. One may hold a bedrock principle, but the specific circumstances tend to be messy and influenced by the many complexities of day-to-day living and by our own internal conflicts.

We each have a moral/ethical compass formed by our parents, culture, education, and religious faith, or lack of it. However, these positions are not immutable; they can be modified by preachers, scientists, literature, travel, and other external influences, as well as by experience and the greater wisdom (we hope) that comes with age. But we still make "right" and "wrong" decisions.

So, what is truth? I don't have the answer, but I have an answer for myself. Truth in dealing with patients is based on transparency with humanity and charity that attempts to ease their burden. And for life in general, I believe my professor of moral theology had it right: for each individual, a considerate, thoughtful, and well-informed conscience that takes all potential consequences seriously must be the final arbiter of right and wrong. My conscience always lets me know, at times reminding me even decades later, when I have already acted against it.


Thursday, November 10, 2016

Six years ago, I wrote a column titled, "Five Great Lies of Medicine." I wrote an updated and expanded version of that column, which published last month (Oncology Times, 10/10/16 issue).

It included the infamous statements by some surgical oncologists to the patient or family that "We got it all." That and four other "lies" expressed a need to be more specifically honest with the patient and the family; for example, "We got all we could see and detect. But we know that microscopic parts of the cancer often remain and threaten to grow and reemerge. So additional therapy may be necessary." Or something like that.

Several years ago, I also wrote a column, "Three Great Truths of Medicine," because there are also "truths" in medicine we rarely talk about. By that, I mean common knowledge among medical professionals that is often not recognized or clearly understood by the public. We may not wish to focus on these truths because of fear that patients may lose confidence in us and in our ability to provide excellent care—and certainly, when and if such a discussion of these generic, almost philosophical, issues may not be appropriate when one is in the process of laying out the options to a patient, when confidence in your abilities is a key factor in the patient's sense of being in good hands. But recognizing these truths with humility is good for both the caregiver and the recipient of care. Here are a few.

There is no reliable, public mechanism for choosing a skillful doctor.

It is not easy for the average person to choose a personal physician based on his or her professional skills, experience, or results. Virtually any MD can obtain and maintain a license to practice medicine. Medical licenses are very rarely revoked, and then only for committing a felony, writing excessive drug prescriptions, or defrauding Medicare.

              There is no formal and ongoing assessment of the quality of care provided. In most states, doctors are required to obtain a number of continuing medical education credits, a means of trying to force them to update their education. But these are often based on attendance at medical meetings and taking online courses on topics such as the laws for prescribing narcotics, sexual harassment in the workplace, or reviews of some aspect of medicine. Certificates on his office wall from prestigious medical schools, hospitals, or training programs are not very meaningful in assessing the quality of his care.

So how does a patient choose a doctor? Often it is based on:

  • advice from a friend or family member;
  • referral to a subspecialist by one's primary care doctor;
  • reading an article in the press; or
  • choosing someone at a convenient neighborhood hospital.

One may also go online to consult doctor evaluations for a fee, which are often based on some unknown number of patient satisfaction surveys. The latter are a pet peeve of mine; very early in my career I learned that patient satisfaction was an unreliable measure of the quality of medical care. Some of the worst doctors (quacks) I worked with as a resident were adored by their patients.

Even when a relative or friend asks me where I would go for care of a medical problem, I often base my recommendation on generic information about an institution or a doctor I have come to know and trust; this may be a bit better than the other reasons, but it still doesn't get to the core issue because I have no data on the quality of that physician's care, only a sense of it from experience or anecdotal evidence. Some of the standards in place today deal mostly with process measures, which are useful. But if I am likely to have a major operation by a surgical oncologist, I don't care about his processes very much, but I do care about his results. We need national, objective, transparent measures by which we can get a notion, at least, of the quality of care provided by physicians and hospitals.

Doctors and other caregivers make mistakes.

This is obvious since doctors are human. But it is possible to reduce errors considerably. The commercial airlines are the model for dealing with pilot error. There is oversight by federal and local agencies, recurring tests of performance in flight simulators, medical exams to assess the continued ability of the pilot to perform from a physical and psychological point of view, and a careful review of his flight performance looking for early signs of poor judgment or performance. And there is an age limit for piloting a commercial airplane.

An easier and often overlooked approach to reducing medical mistakes is that many of them are not due to incompetence, but to a faulty system of care. It has been shown repeatedly that errors are reduced significantly by process measures such as the routine use of checklists, patient ID bracelets, and practice standards where appropriate (e.g., the use of an agreed upon regimens of antibiotics or chemotherapy for specific conditions). Some doctors balk at the use of guidelines or protocols as "cookbook medicine." But standard approaches to standard situations reduce the likelihood of error, antibiotic-resistant bacteria, and dosage errors. It also has the side benefit of being able to learn about the effectiveness or side effects of a particular regimen instead of having numerous, one-off variations.

The quality of a physician's care is often inversely proportional to the elapsed time since completing his or her training.

This is sad but true. Studies have shown that the quality of care stays relatively steady for 10 years or so after training, but often slowly declines thereafter. Often as one ages, study of the current medical literature gradually declines to only reviewing the abstracts, then reviewing only the table of contents, and then just putting the journal on top of the pile of unread journals, never to be opened. The same is true of medical meetings, with a gradual decline in the frequency of attendance and, even when present, hearing fewer and fewer presentations. There are many exceptions, of course, but on average this trend holds. (I must fess up that, to some degree, this describes my trend as well. I still read specific abstracts and occasionally entire articles, but much less than I used to. My excuse: I stopped caring for patients 20 years ago because I took on an administrative position that left insufficient time to be available to my patients.)

Declining study of journals and engagement in medical meetings can lead to excessive dependence on one's own anecdotal experience. Medicine changes rapidly and keeping up is not easy. Once a physician is confident and feels he/she is doing a good job, the urge to learn more may decline. This is human nature in action.

What often prevents catastrophe is the salvation provided by good judgment. Over time many, if not most, doctors develop increasingly good medical judgment about when and when not to operate, radiate, or treat at all; and they learn from their earlier mistakes or from colleagues. To some degree, good judgment can make up for being a bit less up to date, and it certainly can convince a doctor that she doesn't know enough about the problem, and then using good judgment by referring the patient to another doctor or at least discussing the issue with an expert.

A doctor working with partners or colleagues has a potential advantage when striving to provide excellent care.

I cannot count the times I was given very good advice from a colleague when I had a problem or difficult decision to make in a patient's care. Reviewing a bone marrow sample at the two-headed microscope with a superb lab tech saved my butt a number of times. However, there is a big "but." The colleague must be willing to disagree with the physician's opinion, which may cause hard feelings. The doctor asking for help must take the advice seriously and, if necessary, get another opinion from a different colleague. Some of these issues are resolved at a regular tumor board meeting, which often raises novel approaches or a change in the sequence of care.​

Being a physician is a privilege and an honor.

We have a special place of honor in society that is awarded to us and we must not let our egos or the pursuit of financial gain tarnish our commitment to serve our patients. The patient comes first and, when we forget that for any reason, we rightly lose the trust of patients and no longer deserve our special status in society.


Monday, October 10, 2016

Several years ago, I wrote a column titled, Five Great Lies of Medicine (Oncology Times, 1/25/08 issue). It was well-received with responses mainly from laypeople. Recently, a reader of Oncology Times asked me if I planned to write an expanded version. I liked the idea and the result follows. Since the original is almost 10 years old, readers at that time are unlikely to remember it. So I started this column with the old one, I made some edits in it and then added a few more "great lies." The last several are lies of omission, usually the failure to provide necessary information or a service that can be of profound importance to the patient and should be addressed.

I was in my late thirties or early forties before I was willing to call them "lies." I think I had to reach a certain threshold of maturity, experience, and open-mindedness to accept the lies as such. These are not "white lies," largely innocent with no damage done to another person (damage to the liar is another matter). Some of these are frank lies, others are half-truths, and still others are statements meant to mislead or convince the patient that only he/she is responsible for a decision. The statements listed are not always lies, but too often they are. When there is a major unspoken reservation after one of these statements, it is my belief that it becomes a lie. Here are some relatively common lies in medicine.

We got it all.

This is the king of all lies in cancer. It is not uncommon today for a cancer surgeon to tell a patient or family member triumphantly, "We got it all." Although it is justified in some instances, for most carcinomas this is blatantly wrong and biologically impossible since many are systemic in nature and micro metastases remain in the patient even with "clear surgical margins." It misleads the patient and family into thinking the patient is cured. Surgeons who tell this lie defend themselves by saying, "What I meant was that we got all of the tumor we could see at surgery," or "Of course, the patient will need chemotherapy for the remaining microscopic cancer." So why didn't he say that? I hear various explanations: "No need to burden the family and patient at this time," or, "You never know; I might have gotten it all. I had a patient once that…" This introduces the second great lie.

You never know.

When I made rounds with fellows and junior faculty and we were faced with a difficult diagnostic or therapeutic decision, I would ask each to give his or her opinion and to explain the choice. One junior faculty member back in the 1970s often chose what seemed to be an excess of additional diagnostic tests or images, and he often chose therapeutic options that had a next to zero chance of success. When his choice was challenged he would say, "You never know," meaning this might be the one in a million in which there is a useful or positive result.

It drove me nuts. I wanted to grab his lapels and shake him saying, "Of course we can't be 100 percent positive about any action we take; this is biology and medicine about which we are woefully ignorant, but we must apply what we know to make the best reasoned choice we can. You are using sloppy logic and, even worse, you are lying to yourself and possibly to the patient as well." Fortunately, I never did show any emotion or grab his lapels. Unfortunately, this lie is still used today, if not in so many words, or even with no words at all.

The cancer patient with the third or fourth recurrence is offered an ineffective therapy because, "You never know," and the lie is compounded when there is a substantial financial incentive to give the therapy. A related "big lie" follows.

I did it because the family insisted on more therapy.

This is a common excuse for giving or doing something that is almost certainly not in the patient's short- or long-term best interests. It is often excused by confusing "patient choice" and sound medical advice. Patients and/or families should be participants in decisions so they may express the boundaries of action they are most comfortable with. But the doctor is duty bound to do the same. To blame the family for highly questionable interventions is an abrogation of responsibility by the doctor. It is very hard to say "no" to a desperate patient or family. Nobody said this would be easy.

It's your decision.

This is a variant of the preceding lie. There is no question doctors influence patients' decisions. Doctors have biases that may be based on scientific data or a common standard of practice, and it may therefore be reasonable to make a strong recommendation. But in some cases the bias is personal, such as wanting to get more patients on a clinical trial, to do more surgery, to increase revenues, or to avoid having to deal with a difficult patient. In these cases, how the choice is presented along with the enthusiasm and salesmanship of the doctor can make it far more unlikely the patient will choose an alternative option, even when at the end of the explanation the doctor says, "It's your decision."

In a technical sense, it is indeed the patient's decision to go forward, but the strong conviction of the doctor has severely reduced the patient's degrees of freedom. As noted above, a strong recommendation is sometimes indicated, but when those instances are based on a personal preference, one must be extra careful to balance any bias by providing clearly understood information and transparency.

He's a "good doctor."

Patients require referrals to specialists and most often depend on their current physician to recommend one. Physicians usually refer to specialists they know personally or know to be competent by experience or word of mouth. But they may refer a patient because the specialist is a golfing buddy, works in the same building, or is a business partner. The specialist may be quite competent, but one must ask oneself the simple question: If the patients were members of my family, would I send them to this specialist? Or when one tells the patient, "She is a good doctor," does he really mean, "She is a good enough doctor," or "She can probably handle this case because it isn't so complicated?" Referral relationships are fragile and may be influenced by non-medical issues. One must be diligent to avoid exposing patients to unnecessary risks in order to satisfy a social or business obligation.

Failure to explain the relative costs of diagnostics and therapy.

I don't know many physicians who enjoy discussing the costs that must be borne by the patient and his family. Most avoid the topic unless asked. But in today's world, it is not uncommon for the patient and family to carry a huge burden of debt they cannot possibly manage with their income. I am not suggesting one offer a cheaper regimen that is inferior therapeutically. It is the physician's responsibility to describe the choices along with their relative costs. If the best therapeutic regimen is clearly superior for curing or has the likelihood of a prolonged period of a high quality of life, the choice is clear, but the costs should be explained to the patient and family so they can begin asking about payment options and dealing with insurance agents.

Failure to describe the usual post-therapy quality of life of similar patients.

The short- and long-term handicaps that may occur in the ensuing months or years of therapy is a lie of omission. Edema in the arm after a mastectomy is common enough that helping the patient prepare for such an event would be prudent. Failure to prepare the post-prostatectomy patient for a leaky bladder or impairment of erection is another lie of omission. In the early days of bone marrow transplantation, the long inpatient stays and the ravages of graft-versus-host disease were new and puzzling problems, with the dangers of immunosuppression thrown in. As time passed, transplant doctors did a much better job of explaining these problems to families and patients, including their therapeutic options.​

The unavailability problem.

As a retired physician, I am often asked at civic groups or by acquaintances, family members, and other casual friends about not being able to contact their doctor, or the nurse or knowledgeable clerk. The doctor is too busy or traveling or in the OR. This often leaves the patient with no way to ask a question or get even minimal information. I am sympathetic with the doctor's busy day with a waiting room full of more patients. And, at times, patients can expect too much attention. But at least there should be a window of time when the doctor or staff person would be accessible to triage the seriousness of the issue.

Thus, while each of the above statements or actions can be used honestly and justly, they are too often used for more negative and sometimes shameful reasons and biases. The test is the motivation found when being honest with oneself and, at the very least, facing the fact when one is not.

About the Author

JOSEPH V. SIMONE, MD
JOSEPH V. SIMONE, MD, has had leadership roles at, among other institutions and organizations, St. Jude Children’s Research Hospital, Huntsman Cancer Institute, Memorial Sloan-Kettering Cancer Center, the University of Florida Shands Cancer Center, the National Comprehensive Cancer Network, and the National Cancer Policy Board.