Community, Medicine and Trust

The October 28, 2002 issue of the New Yorker contained an article by Jerome Groopman, an oncologist.  Appearing under the section heading “Annals of Medicine” it was entitled Dying Words with the sub title “How should doctors deliver bad news?

Dr Groopman begins his article by introducing a 28 year old patient with metastasized breast cancer. He describes his initial conversation with the woman, her parents and her fiancé. After some introduction, he begins to speak with them:

            Dr. Groopman: “The good news is that you stand a very good chance of going into remission.”

            Patient’s mother: “So that means she'll be OK?”

            Dr. Goodman: “Remission does not mean cure. Remission means that all the cancer we can measure disappears. Therapy is palliative.”

            Fiancé:  “What do you mean palliative?”

            Father:  “She has to be cured.”

            Dr Goodman:  “There is a very good chance that we will see the metastasized deposits in your bones and liver shrink significantly, or completely melt away. But the most intensive chemotherapy or radiation available – even bone marrow transplants – is not enough to destroy every cancer cell in your body. That is why, currently, we cannot say the cancer can be cured.  What is the point of treatment? Palliation. That means that even though the cancer cannot be cured, it can be controlled. The best-case scenario is that the cancer becomes like a parasite. We knock it down with the therapy and hope it stays down for many many months or years. You can live an active life – work, jog, travel, whatever. The bones and liver can heal. And when the cancer returns we work to knock it down again. All the while, we hold on to the hope that an experimental treatment will be found that is able to eradicate the cancer- to truly cure you.”

The doctor then noted what he had just said was the best-case scenario. He then discussed the worst case scenario. He ended this dialogue, after reviewing her good health and youth, by saying “… so there is every reason to think that you will tolerate the drugs and we will make real progress.” He next noted that he smiled confidently.

The fiancée, a professional financial analyst, then asked, “But what are the exact odds for a remission? I mean, how many patients like Maxine stay in remission and for how long on average?”   

The patient responded:  “Dr. Groopman said that there is every reason to think I’ll go into remission. What more do we need to know now?”

Dr Groopman then writes about his own reaction to this difficult conversation. He can give the statistics to Maxine and her family – that more than 50% of people with cancers like Maxine’s die within two years. He considers some other options for communicating  and decides that Maxine prefers neither the extreme of ignorance nor the extreme of excruciating detail but some middle ground. He then said, “Statistics don’t say anything about any particular individual, only about groups. There can be wide variability in the behavior of any cancer in each person, because each of us is different – different genetically, living in a different environment – and we metabolize the treatments differently.”

Looking at the fiancé, Dr. Groopman said, “I want my patients to be informed. When Maxine said that she understood there is a very good chance of remission. That is accurate. It could last months or it could last years. Putting precise numbers on it at this point doesn’t tell us anything more about Maxine. In the meantime we need to plan for the best while acknowledging the worst.”

A few days later, Dr Groopman had a conversation with the finance, who said that he had researched cancer data and discovered that in cases like his fiancée’s,  patients survived on average 18 months and a remission lasted 3-6 months at best. Dr. Groopman’s response was “Peter, as I said when we met, statistics don’t tell you what is going to happen to any one person, just groups”. He then “got off the phone as quickly as he could”.

Maxine’s metastases decreased for seven months, but then the cancer spread to the brain. Shortly thereafter she died and Dr. Groopman spends some time discussing the death scene with the parents present.

The rest of the article, interposed with reports on Maxine’s case, deals with the question of how doctors discuss such illnesses with patients. Now, Dr. Groopman offers many statistics.

            Oncologists give bad news 35 times per month

            Over 40% of oncologists withhold a negative prognosis if the patient does not ask

                        for it or if the family requests that the patient not be told.

            A similar number (over 40%) speak in euphemisms, skirting the truth.      

Later he quotes a recent academic study that measured the effectiveness of oncologist’s communication. The sample was 118 patients cared for by 9 oncologists. The doctor/patient conversations were recorded with the agreement of all involved. The results were:

            Over 25% of the patients were not told their disease was incurable.

            Over 25% were not informed of the side effects of the proposed anti-cancer
                        therapy.

            Only 4 % received what the researchers considered adequate information.

            In 90% of interactions, the oncologist failed to ask the patient if they understood
                        the information presented.

Dr. Groopman says that these results are in line with prior research, which has indicated that more than a third of the patients with incurable metastases of the breast believed the treatments offered by their doctors would actually cure them.

Dr. Groopman then pointed out that the doctor’s uncertainty in guiding patients through the end of life is one of the primary causes of rising health-care costs. He said that more money is spent on care during the last weeks of life than on the months or years of care that precede it. The article finished by noting that other studies have shown that a doctor does not shorten the life of the patient when he chooses to provide palliative rather than intensive care. What are called “heroic efforts” often do not extend life but do raise the cost of care overall.

In a press release on 05/20/00 entitled “MDs Said Reluctant To Break Bad News,” editor Daniel Q. Haney reported on research presented at the annual meeting of the American Society for Clinical Oncology. The study involved 258 doctors caring for 326 terminal cancer patients who were entering five Chicago hospices. He begins by saying:

“Terminally ill cancer patients rarely get a straight answer when they ask doctors how long they have to live, a new survey suggests. Researchers found that doctors are likely to be overly optimistic about their patients' outlooks or simply refuse to say. Only about one-third are willing to give patients their best guess.”

Later in the press release he quotes:

“Dr. Nicholas Christakis, a co-author of the study, noted that many patients die in pain, institutionalized and broke. ``I firmly believe that a lot of these deficits could be partially addressed if people had access to more reliable prognostic information,'' he said. ’Part of the reason we die badly is because we don't see death coming and we don't plan accordingly.’ ''

Further on, the press release says:

“……When asked by the researchers, nearly all the doctors were willing to estimate their patients' survival time. But when asked what they would say if the patients insisted on knowing these predictions, only about one-third of the doctors said they would give a truthful answer. One-quarter said they would refuse to answer at all, saying something like, ``Only God knows.'' Another 40 percent said they would give an inaccurate estimate. Nearly three-quarters of these doctors would sugarcoat the answer, telling patients they will live longer than they really believe. The rest would paint a picture even more grim than necessary.”

And finally:

“……..Christakis said the doctors' unwillingness to be open with these patients suggests that in everyday practice, they might be even less willing to tell the truth than the survey suggests.”

What can we learn from this? The second article quoted was written 2 ½ years before the New Yorker article. Little seems to have changed in that period. A brief survey on oncology notes that surgical oncology has existed for over a century, radiation oncology began in the 1940s and chemotherapy in the 1950s. Obviously oncologists have been in practice a long time – it is not some new and untested branch of medicine. Yet when reading Dr Groopman’s article, one gets the impression that only recently have oncologists even noticed that they are not giving “the truth, the whole truth, and nothing but the truth” to their patients. 

Often articles about cancer speak about the disease and its treatment in battle terms. Treatments can be “aggressive”. Obituaries speak of a death after “a long battle with cancer.” Oncologists offer to “do everything in my power to beat this” or to “stick with you to the end”. But at the end of the appointment, the oncologist moves on to the next patient, and then leaves at the end of the day to enjoy his or her life, hopefully a peaceful one without “battles”. Any “battling” will be done by the patient.

The brutal facts of the matter are that the longer the patient fights the more money the oncologist makes. And the longer the patient stays with the standard oncology practices, the less time they have to pursue alternative options or even to pursue “death with dignity”.

A little more than a year ago, the author’s sister learned she had breast cancer and that it had metastasized to her spine. By nature a powerful and direct person, she asked her oncologist to be extremely complete when discussing her prognosis. At the same time she enlisted members of her family to research her situation. There was no mystery - survival rates were well documented and her prognosis was bleak. She then contacted the author of a well known book on metastatic breast cancer who gave her a clear and complete description of what would occur. Although hard to hear, this dispelled any mystery left, helping her make decisions on treatment. She did not get this information from her oncologist but from her extended community. 

She elected to try an alternative therapy, the Gerson program, and was at their clinic within a few weeks of the diagnosis. Her oncologist offered to continue to work with her in any way she needed once she returned home after initial treatment. She continued to visit with him to measure the progress of the Gerson therapy. A year later, the cancer has not spread and her tumor markers have been declining. She continues to work with her oncologist who, at this point, says he has no therapies to offer that can do better than the one she is undergoing.

This is not intended to be a success story for alternative methods. Rather it is to give an example of a person who did not receive the whole truth about her medical condition from the professionals. It was very difficult and upsetting for her to hear the complete facts about her case. It was stressful for her, her spouse, other members of her family, and her friends. But they became the “community of support” she needed to take on this rigorous program.

The point of this article is one of trust. How much trust is there between the “medical community” and the rest of us? In spite of the apparent intimacy that existed between Dr. Gloopman and his patients, or rather, I might say, apparent frankness, there is no evidence that he ever interacted with his patient other than in his office and that his professional manner included withholding vital information.

The issue of trust in medicine can be extended to institutions as well. An article entitled “New Statistics Show Increase, Not Decline, in Cancer Rates” by Sharon Begley appeared in the October 16, 2002 issue of the Wall Street Journal. The article reports that the optimistic reports from the National Cancer Institute, which showed that the incidence of major cancers had declined in recent years, were not true – that cancer rates were actually rising. It was explained that the delays in reporting of cancers in this study had resulted in incomplete, and thus misleading, data. It is somewhat shocking that such an institution as the National Cancer Institute (NCI) with its sophisticated scientists and its years of evaluating research efforts could make such a mistake.

The American Cancer Society has actually been using these misleading statistics on its Web site. Brenda Edwards, associate director for the surveillance research program at NCI in Bethesda, Maryland is quoted as saying, "Maybe we were a little too eager to declare the effectiveness of our intervention and prevention programs." The report says that scientists had long suspected that the original numbers were skewed, and quotes Benjamin Hankey, the senior author of the study as saying, "It was well known that reports of new cancer cases dribbled in over the years, long after the 19-month reporting deadline."

The attitudes implied by these quotes are similar in nature to the ones of Dr. Groopman. Brenda Edwards notes the “eagerness to declare effectiveness”. And Benjamin Hankey seems to imply that it was well known that the numbers were skewed. Is this attitude similar to that of many oncologists? Were these researchers interested in “giving hope” like the oncologists? Did they have anything personal to gain? Do positive studies do better financially than negative ones? Is the presumed objectivity of science compromised? Does the idea of telling “the truth, the whole truth and nothing but the truth” have anything to do with medicine?

Could such attitudes exist in small communities, or are they associated with the anonymity and professionalism of urban areas? Could the local oncologist in a small town mislead patients year after year? Might not the survivors who know him or her as part of their community take the opportunity to tell him or her about their reactions when they learned that the information they received was incomplete? Would the residents of that town react if their local institutional coordinator said he or she was giving bad information because he or she was eager to appear effective?

Several months ago, a nurse in my small community went to visit a woman with metastasized breast cancer. When she met with the woman it was clear to her that the woman’s time was limited. She then learned that the woman had no idea that she was about to die - she thought she was going to be cured. She had not told her children and had made no provision for their welfare. The nurse contacted the oncologist, who agreed that the woman was dying and had only about a week to live. The nurse insisted the woman be told and that the children be informed. She asked the doctor to do whatever he could to extend the patient’s life for two weeks to give her some time to prepare for death. During this period, the nurse helped her with the mechanics of dealing with her children and her estate as well as the psychological process of dying. The woman died two weeks after their first meeting.

Each of us can consider these questions of community, medicine and trust. We can think about the difficulty of fighting severe illness.  We can reflect on the possibility of receiving information about our condition from our neighbors and friends, as well as from professionals and the media. To use the oncology metaphor, we can decide to “fight” or not, based on the best information, delivered with sincerity by someone that sees us as more than a patient.