The deadly power of denial, part 3: Fear
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.
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.
ARGH!
ReplyDeleteThis sounds like my husband ... "why do I have to have a stress test?"
"Because you're 49 years old, with atrial fibulation, mitrovalve prolapse, severe scoliosis from polio & you weigh 92 (as of yesterday) lbs."
"That's bologna! Everytime they run tests on my heart, they come back normal! If she wants to find something about about my heart, she can run a blood test!"
"No, Don, the tests don't come back normal, you have mitrovalve prolapse and Atrial Fibulation"
"So does everybody else, that's normal heart stuff"
ARGH!!!!!!!!!!!!!!
Our doctor did convince him today that he'd had EKG changes in the hospital this weekend, and they keep changing, so the stress test is mandetory ... and that they will do it as soon as his white blood cell count and his pneumonia resolves a bit.
What kind of a person thinks Atrial Fibulation & Mitrovalve prolapse is NORMAL?????????
It's nice to hear that I'm not the only one with problems and patients like this one. Don't worry, you are not alone.
ReplyDeleteWow, that was great of you to keep on her like that. Do surgeons usually go to those lengths to get their patients to accept treatment?
ReplyDeleteActually, I have to admit that I had decided that, if she didn't show up for surgery a second time, I was probably going to send her a registered letter telling her she needed the surgery and cease trying to contact her. In that event, she could contact me if she ever changed her mind. After a certain point, there's only so much one can do, and one has to cover one's behind, not to mention stop continuing to waste O.R. time that could be used by patients who were waiting for their cancer surgery. Everything has to be well-documented, of course.
ReplyDeleteI'm very happy it never went that far.
Thanks for the story. I hope I can benefit from what I learned here in practice someday.
ReplyDeleteDenial can be a useful coping mechanism - as long as it doesn't interfere with treatment.
ReplyDeleteI woke up from my first colonoscopy to a diagnosis of cancer. It wasn't what I expected and I insisted it couldn't be possible. I did keep the surgical appointment and let them schedule me for the OR - presuming that I'd cancel the surgery once the results were in. Did I mention that I'm a nurse? It's been almost 5 years.
Asking WHY can be really helpful. I was the admitting nurse in the NICU one night when a patient who was 28 weeks pregnant presented fully dilated with the baby in breech position. Not an optimal situation for vaginal delivery, but she was insisting that she didn't need a C-section. I stopped in to introduce myself as the nurse who would be admitting her baby to the NICU if she delivered before the end of my shift - and "Oh, by the way, why don't you want a C-section?" Seems she'd been doing a lot of reading and knew that vaginal births did a better job of getting the fluid out of the baby's lungs. I briefly explained that it only really works when they are head first and mentioned concerns about the baby's head getting trapped with vaginal breech deliveries. Then I suggested she ask her OB to explain the risks/benefits of the delivery options again. That must have taken less than 5 minutes, because we were in the OR almost immediately. Amazingly, the baby never even needed any oxygen. I love happy endings.