Respectful Insolence

The deadly power of denial, part 3

i-e7a12c3d2598161273c9ed31d61fe694-ClassicInsolence.jpgWhile I am on vacation, I’m reprinting a number of “Classic Insolence” posts to keep the blog active while I’m gone. (It also has the salutory effect of allowing me to move some of my favorite posts from the old blog over to the new blog, and I’m guessing that quite a few of my readers have probably never seen many of these old posts.) These will appear at least twice a day while I’m gone (and that will probably leave some leftover for Christmas vacation, even). Enjoy, and please feel free to comment. I will be checking in from time to time when I have Internet access to see if the reaction to these old posts here on ScienceBlogs is any different from what it was when they originally appeared, and, blogging addict that I am, I’ll probably even put up fresh material once or twice.

I’ve been thinking about denial yet again.

As regular readers of this weblog know, I’ve had more than my share of experience dealing with patient denial, as I’ve described. I’ve also had enough experiences with denial to realize when it’s not denial. A while ago, I dealt with a patient that demonstrates yet another permutation of denial. As always, to protect patient privacy no names are given and some of the details have been altered without changing the heart of the story.

The woman came into my office, accompanied by her daughter and son-in-law. She had come to see me because she had recently undergone a breast biopsy at another institution. Unfortunately, the results were cancer. Even more unfortunately, the surgical margins were involved with tumor, meaning that there was probably still tumor left behind in her breast. Yet more unfortunately, the surgeon who had done the biopsy had failed to orient the specimen with stitches, meaning that we had no way of know which margins were positive. (Generally, it is considered a good idea to mark the specimen with sutures so that, if any of the margins are positive for tumor, the surgeon can know which margin(s) are positive and therefore have to reexcise just those margins.) And, worst of all, even though the size of the woman’s tumor was less than 2 cm, that same surgeon had recommended a mastectomy. Fortunately, the woman’s family had had the good sense to persuade her seek out a second opinion.

When I saw her for the first time, she seemed reasonable enough. I did the history and physical examination, as I usually do, and nothing indicated to me the difficulties that lay ahead. She was calm and, to observation, seemed to comprehend that she had cancer. She even seemed relieved when I told her she very likely did not require a mastectomy. I explained to her that her tumor could be treated with a re-excision of the area, although it would be a fairly extensive re-excision, mainly because the specimen hadn’t been oriented and I couldn’t be sure which margin was positive. I further explained that we would have to check the lymph nodes under her arm for tumor using a technique called sentinel lymph node biopsy, in which we inject a dye near the tumor and use it to find the first lymph node(s) to which the tumor drains. I added that, if there is tumor in the lymph nodes under the arm, that she would require an axillary dissection, which is an operation in which most of the lymph nodes under the arm are removed. Finally, I explained that she would need postoperative radiation therapy and possibly chemotherapy and/or estrogen blocking agents. She seemed agreeable and I wrote the orders for surgery. Another life saved–or so I thought.

A few days later, I got a frantic call from our surgical scheduler:

“Mrs. X is telling me she’s canceling surgery.”

“What?” I said.

“She says she’s decided that she’ll just get chemotherapy.”

“Give me her number,” I replied.

I then called Mrs. X. Trying to remain calm and reassuring, I told her that my scheduler had informed me that she was canceling surgery and I was hoping she’d tell me why.

“I just decided that that’s no way to live, that I don’t want the surgery, and I don’t believe I have really have cancer anyway.”

I was puzzled. I affected my most reassuring, nonjudgmental posture and asked why and whether she had found another doctor to do this for her. She told me that she had been told that the surgery would “mess her up” and that maybe she didn’t need it. She went on about how she didn’t think she really had cancer at all and that we all just wanted to operate for the money. I told her that most assuredly she did have cancer and did need the surgery. I explained that no medical oncologist worth his or her salt would give her chemotherapy (or any other therapy) if her surgical management was incomplete. Oncologists need to know the margins are negative and what the status of the axillary lymph nodes are before they can determine what the best postoperative adjuvant therapy is. After a period of my explaining some more, she finally agreed not to cancel the surgery.

A few days later, the date for which her surgery was scheduled rolled around. I was doing a couple of operations before hers. When I was doing the operation before Mrs. X was scheduled, I got a call in the room from the preop area informing me that Mrs. X had not showed up. I relayed a message not to cancel her yet.

When I got out, I immediately called the phone number on Mrs. X’s chart.

No answer.

After some searching, the nurses helped me find the number of one of her daughters. I called and asked if she knew what was going on. To my surprise, I got an angry response.

“She did this to me on purpose!”

“What?” I asked.

“She gave them my number on purpose!”

I managed to calm her down, but it took a few minutes. From her, I learned that her mother screened her phone calls with her answering machine and was almost certainly at home, refusing to answer–but listening. I also learned that her mother had “gotten consults” from “people on the street” about her surgery. She had been told that she would be “messed up” by the surgery and was deathly afraid. I must admit to becoming a bit angry (to my shame) and mentioning that this was a slot that could have been used for another patient with cancer who would have jumped at the chance to take this slot. It was too late, even if she hit the road right that second, because another surgeon had booked the room after me. The daughter told me she’d call her mother. I later learned through the social worker that this woman was very suspicious of doctors. She thought that we only wanted to operate on her for the money.

I decided that we had to get this woman back into the office for another discussion. To this end, my nurse was resourceful and enlisted her son-in-law and other daughter to bring her in. After a long, grueling session, I thought I had managed to persuade her of the necessity for surgery and further treatment. Her family was on board and would make sure that she showed up. The social worker had gotten a support group of African American women with breast cancer to contact her and try to allay her fears.

But it wasn’t yet over.

The morning of the rescheduled surgery finally rolled around, and she did actually show up.

But she wasn’t exactly agreeable to surgery.

In the preop holding area, it was necessary to explain yet again in great detail yet again why she needed more surgery. She once again told me she was afraid the surgery would “mess her up” and that that was “no way to live.” Finally, as if a light went on over my head, I asked her why she thought that.

It turns out that she thought that (1) she would lose the use of her arm after surgery and (2) that she might still lose her breast. It occurred to me that perhaps she had been told horror stories about axillary dissection (the removal of most of the lymph nodes under the arm). It is true that there can be one rather nasty complication from this procedure known as lymphedema, in which the lymph drainage is interrupted and the arm swells up badly. There is no cure, and severe forms can interfere greatly with quality of life. The problem is, lymphedema is almost unheard of after a sentinel lymph node biopsy, because only 1-4 lymph nodes are usually taken. After a prolonged explanation yet again that she would not lose her breast and that lymphedema was exceedingly unlikely after sentinel lymph node biopsy, she finally just admitted that she was terrified. She couldn’t bring herself to admit she had cancer because she was afraid of the surgery that would be required.

After that, she actually signed the surgical consent. The surgery was somewhat difficult, mainly because she was not a small woman, but it went well. We located the sentinel node with only moderate difficulty, and the patient did well postoperatively. It turns out there was indeed residual tumor left behind in the breast, but fortunately, the sentinel lymph nodes were all negative for tumor.

I realize that it’s probably fairly obvious to all that this patient was probably not really in true denial. Her “denial” was more likely a convenient reason to refuse surgery, rather than a true belief that she didn’t have cancer. On the other hand, she was extremely suspicious of doctors, and it took a great deal of work to allay those suspicions and convince her that she truly did need treatment. She had been told that she needed a mastectomy when clearly she did not. A consequence of that extreme distrust may have been denial that she had cancer.

Thinking about this case, it occurs to me that we doctors too often become rather blasé about cancer. As mysterious and implacable a foe it is to us, we nonetheless treat it as fairly routine. We have to, particularly if it’s our business to treat it. However, to the patient it is most definitely not routine. There are few things more terrifying to anyone than to be told that she has cancer. And, if that patient happens to live in an area where “people on the street” give “consults” about her diagnosis, that fear can be magnified 100-fold by the misinformation she will get from those “consults.” Dealing with such patients can be a major challenge. In this case, it was a challenge that I almost failed to meet. Fortunately (for both me and the patient), I did not, at least not in this case. Next time, I (and, by extension, the patient) might not be so fortunate.

I don’t forget that.

This post originally appeared on the old blog on February 28, 2005.

Comments

  1. #1 Ompus
    August 28, 2006

    My father saw a Freudian psychiatrist 5 days a week for years. When he started having pains he chalked it up to psychosomatic stress caused by having a newly diagnosed schizophrenic child. After a couple more years denying the reality of the pain he finally complained to his primary care physician. The primary care physician referred him to the hospital to have his gall-bladder checked out. The hospital took some scans and gave him a new diagnosis… Stage 4 Prostate cancer which had spread throughout his bones. Now THAT’S Denial. He died at 59.

  2. #2 Lois
    January 20, 2008

    This sounds like my mother’s constant mislogic and deial. It makes me, a lawyer, M.A., and doctor’s wife insane. I hear you here!!
    Thank you for the fine columns!
    Lois

  3. #3 Lois
    January 20, 2008

    This sounds like my mother’s constant mislogic and denial. It makes me, a lawyer, M.A., and doctor’s wife, insane. I hear you here!!
    Thank you for the fine columns!
    Lois

  4. #4 Dan
    June 7, 2008

    You Want To Be A Doctor?

    Lately in the media, others have said and expressed concern about the apparent shortage of primary care doctors, most notably. Typically, the main reason stated for this shortage is lack of pay of this particular specialty compared with other specialties chosen by potential physicians.
    Yet considering the additional attention of shortages of students in some medical schools, one may ask the question as to whether or not people want to be any type of doctor in the first place in the United States. About one third of their lives are spent achieving the requirements of this profession. Reasons for not choosing to enter this profession are several and valid.
    There is the issue of long hours- with primary care in particular because of the apparent lack of doctors of this specialty. Such doctors may be over-worked without an expected pay reflecting the work they do. Furthermore, those doctors employed by health care systems are required to see a certain number of patients a day, and receive a monetary bonus if this expectation is exceeded. It seems that most doctors are members of such health care systems. So burnout certainly may occur. And I consider such a requirement mandated by health care systems demeaning to this profession, and leave the doctor without the control that the doctor is entitled to due to their training and experience.
    However, the recent increases in hospitalists, who are those doctors that are usually Internal Medicine doctors who specialize in patients presently under hospital care, and they have lessened the load for all doctor specialties for the work they do that the admitting doctors would have to do without their presence. This in itself makes a doctor possibly more effective and efficient in their practice outside of the medical institution.
    All doctors, I presume, face a high degree of emotional and physical stress associated with their profession, as stated in the previous paragraph, for example. And this is not to mention the incredible stress associated with patient care in the first place, with some patient cases causing more stress than others
    Doctors, due to the changes that have occurred recently in the U.S. health care system, not only have the issue of money to deal with, but also a loss of autonomy regarding patient care combined with loss of respect that may be due in large part to others dictating on how they practice medicine. Ironically and often, these others are not as qualified as the doctor in the first place. This is complicated by the perception that the public, with some who view doctors as having the easy life with their pay and profession, which does not seem to be the case presently.
    There are also reasons of malpractice insurance, which is why doctors choose to join health care systems, it is believed, to pick up the tab for this necessity, along with eliminating the concerns of running a practice in a private manner, which historically has been the case, as their offices are owned by the health care system as well.
    Up to 90 percent of malpractice cases against a doctor are baseless and without merit, so they are unsuccessful for the plaintiff, yet this still affects the rate the doctor has to pay for malpractice insurance. I understand that simply filing a lawsuit against a doctor, as frivolous as it may be, still increases the malpractice premium of that doctor. This is combined with the amount the doctor has to spend to defend themselves in such cases, which approaches about 100,000 dollars over the course of about 4 years for such cases. A tort reform in Texas in 2004 resulted in annual malpractice premiums reduced by about a third of what they were. Soon afterwards, claims against doctors remarkably dropped by about 50 percent. Some specialties of doctors pay more premiums for malpractice than others. For example, OB/GYN doctors have been known to pay around 300 thousand dollars a year for this insurance. Certain types of surgeons experience a similar high rate of malpractice premiums. Malpractice flaws are catalysts for doctors to practice defensive medicine to avoid potential litigation, which is a waste of health care resources and unneeded patient methods or procedures.
    Also, about a third of the U.S. is insured by Medicare, which progressively has lowered what they will reimburse a doctor for regarding the care they give a patient they treat. This fact is recognized by other insurance companies who will eventually follow the recommendations of Medicare, usually, regarding the reimbursement issue, so it seems. This will lead to a doctor having to see even more patients in order to make it financially with their profession, as this has resulted in the overall income of a doctor experiencing a decline of about 10 percent over the last decade.
    Furthermore, doctors normally have to pay off the debt acquired from attending medical school and training, which averages well over 100,000 dollars today after their training. About 20 years ago, that debt was only about a fifth of what it is today. Paying this debt off is typically about 2 thousand dollars a month that doctors on average have to pay in order to eliminate this debt in a timely fashion.
    There are some who believe that doctors in the U.S. are over-paid. This may be true, but they are not absent of financial concerns as with any other profession.
    Most doctors do not recommend their profession to others for such reasons stated in this article presently, and perhaps other reasons not mentioned. This is somewhat understandable, yet extremely unfortunate for the health of the public in the future, especially. There have been cases where doctors do in fact change careers, and get into vocational fields such as medical communications or corporate medical companies. Also, expert witnessing is another consideration for those who choose to leave their profession. Finally, other choices considered include consulting and research. The training of doctors fortunately leaves them with options not involved directly with the flaws of medical care, but this is bad for us as citizens, overall.
    No all doctors are dieties. Like others, some are greedy and corrupt, which complicates others in this profession. Personally, I believe that the intentions of most physicians are bonafide. Yet in time, due to the nature of the current health care system, doctors frequently become cynical, demoralized and apathetic. This may be considered a significant concern to the well-being of those in need of restoration of their health, understandably.
    Not long ago, the medical profession that has been discussed had overt honor and a clear element of nobility. Such traits are not as visible anymore, which saddens many intimate with the profession needed by many.
    “In nothing do men more nearly approach the Gods then in giving health to men.” — Cicero
    Dan Abshear