Respectful Insolence

TAM is fast approaching, which means one thing (at least this year). I need to get my Plexiglass blinky posterior in gear in order to have my talks together in time. I spent part of yesterday doing that, but, unfortunately, I have to work today in order to help to make up for the clinic I’ll be missing next week; so you’ll forgive me if this post might look familiar to a subset of you who know where you might have seen some of this discussion before elsewhere. Those of you who haven’t, you’re in for some good blogging, if I do say so myself. Whichever group you belong to, we’ll get back to normal no later than Monday. In the meantime, you’ll also have to understand that now that the latest round of grant applications and pre-applications is finally over, I’m tired. I was, however, not so tired that I didn’t manage to find some time this week to peruse the stack of journals that’s been accumulating on my desk. Oddly enough, despite my being about as plugged in as you can be at my age, I’m still old-fashioned enough to enjoy the physical sensation and the overall experience of picking up the most recent issue of a journal and randomly flipping through it. There’s something about the feel of the paper, the smell of the coating and print, as well as the sheer undirectedness of it all. It’s how I find articles that I probably would never find if I relied just on perusing the table of contents of an electronic edition.

Sadly, that’s not how I found this week’s topic. The study that I’m going to discuss this week is an E-pub ahead of print that I became aware of through a Reuters story, late last week when I still didn’t have time to deal with it. As is my usual practice, I saved the link for later in Safari’s Reading List, and this time I actually managed to come back to it. The story is entitled “Many cancer patients expect palliative care to cure“, and it’s about a recent publication out of the Dana-Farber Cancer Institute published online in the Journal of Clinical Oncology (JCO) entitled “Expectations About the Effectiveness of Radiation Therapy Among Patients With Incurable Lung Cancer“. It caught my eye, even a week ago, because managing expectations in patients with advanced cancer. It then led me to do a search for related articles, which brought me to a similar study from last fall in the New England Journal of Medicine, entitled “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer“, also from the same group at the Dana-Farber. This latter study looked at patients’ expectations regarding chemotherapy, and I even remember having encountered it when it was first published and wanted to blog about it then. I don’t recall why I didn’t (probably something about antivaccine loons got in the way and distracted me, as is too often the case), but here’s my chance to revisit it.

There is not a cancer clinician out there whom I’ve ever met who hasn’t thought that he’s given a patient with incurable cancer an accurate, science-based assessment of his prognosis, only to find that the patient still expects to be cured. Even as a breast surgeon, I occasionally encounter the issue even though the vast majority of my patients are early stage and therefore potentially curable by surgery, supplemented with a combination consisting of one or more of the common breast cancer treatment modalities of chemotherapy, hormonal therapy, and radiation. In my practice, it’s usually when I’m referred a patient who has stage IV disease that has either been stable for a while, leading to the question of whether removing the primary tumor will prolong life. There is evidence that it will, but, given that the data supporting this contention are all largely retrospective and no large randomized trials have been published yet, many of us suspect that there is a large component of selection bias in the existing data supporting removing the primary tumor in patients with metastatic disease.

The other example is the occasional patient with metastatic disease whose primary tumor is large and on the verge of ulcerating. Disease that gets to this point is known as en cuirasse disease. It’s nasty in the extreme, leaving a woman with a bleeding, stinking, necrotic mass on her chest wall that can’t be removed without major surgery that involves removing huge swaths of skin, soft tissue, and chest wall. Such surgery is rarely, if ever, done, because it’s too major to be proposed for palliation of a patient who likely only has months to live. If you want an example of just how horrible a death comes from en cuirasse disease, I described one at the end of my post on German New Medicine, specifically the example of Michaela Jakubczyk-Eckert. (Warning: That link is not for the squeamish.) Surgery is often worth it to prevent such a complication of advanced breast cancer, even if it won’t save the patient’s life. I try to be very clear—blunt, even—about this whenever I see the occasional patient referred for consideration of palliative mastectomy, but, even so, although I can’t give a percentage a significant number of patients appear to believe that having a mastectomy might actually save their lives.

So it is with patients with metastatic lung cancer and colorectal cancer receiving chemotherapy, as illustrated in the NEJM article. In both studies, which are based on the same national, prospective, observational cohort study, the Cancer Care Outcomes Research and Surveillance (CanCORS) study, a large multi-center consortium study funded by the National Cancer Institute whose aims are to:

  1. assess the quality of care received by cancer patients and survivors;
  2. explore the relationship between quality of care and patient health outcomes; and
  3. evaluate how characteristics of patients, providers, caregivers, and delivery systems affect quality of care and outcomes.

Specific questions to be answered include:

  • Are there racial, ethnic, and socioeconomic differences in use of effective therapies for colorectal cancer and lung cancer?
  • Are there racial, ethnic, and socioeconomic differences in patients’ assessments of the quality of cancer care?
  • How do patients and physicians decide about therapies for colorectal cancer and lung cancer?
  • Why do outcomes of lung cancer surgery and colorectal cancer surgery vary by hospital and surgeon volume?
  • What factors explain participation in clinical trials for lung cancer and colorectal cancer?
  • Are patients’ symptoms recognized and treated effectively at different stages of illness?

Obviously, these two papers report on the results of asking about how patients and physicians decide on therapy for colorectal cancer and lung cancer and racial differences in patients’ assessments of the quality of their cancer care. Specifically, the part of the study that I’m going to discuss involved assessing patients with newly diagnosed metastatic lung or colorectal cancer (stage IV) who were alive four months after diagnosis and had received chemotherapy (the NEJM study) or who had newly diagnosed lung cancer, stage IV or stage IIIB with malignant pleural effusion, who had received, or were scheduled to receive, palliative radiation therapy. There were 1,193 patients in the NEJM study and 384 in the JCO study, both respectable-sized cohorts. The questions asked were adapted from the Los Angeles Women’s health study and were worded:

After talking with your doctors about chemotherapy, how likely did you think it was that chemotherapy (in the case of the NEJM study) or radiation therapy (in the case of the JCO study) would:

  • help you live longer?
  • cure your cancer?
  • help you with problems you were having because of your cancer?

Response options were “very likely,” “somewhat likely,” “a little likely,” “not at all likely,” and “don’t know.” Refusal to respond was also recorded. Patient demographics were, of course, recorded and correlated with the likelihood of various responses.

In the part of the study reported in the NEJM, I think it’s easiest just to present the “money graph.” There are three panels: A. Cure; B. Life extension; and C. Symptom relief. The results are:

NEJMFig

The authors described the results thusly:

The proportion of patients with inaccurate expectations about the likelihood that chemotherapy might cure their cancer according to patients’ characteristics is shown in Table 1. Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer gave answers that were not consistent with understanding that chemotherapy was very unlikely to cure their cancer.

This is a huge number, and the authors reported that the likelihood of misunderstanding correlated with a diagnosis of colorectal cancer as opposed to lung cancer, nonwhite patients or ethnic group (specifically Latino and Hispanic patients) as compared to white race (odds ratio, 2.82, confidence interval 1.51 to 5.27), African-American race (odds ratio 2.93), and Asian or Pacific Islander patients (odds ratio, an amazing 4.32). No other factors, including education, functional status, and the patient’s role in decision making, correlated with a higher likelihood of an inaccurate response about the curative potential of chemotherapy.

But what about radiation therapy? The JCO study reported depressingly similar results. Here is the equivalent graph to the one above for patient understanding about the curative potential of radiation therapy. Note that, for reasons unclear to me, the order of the questions are reversed: A. Symptom relief; B Life extension; and C. Cure. I don’t know why. The authors just chose to do it that way.

JCOFig

Depressingly as well, the authors’ conclusion about radiation therapy is very similar to their conclusion about chemotherapy, except that slightly different factors appear to be correlated with an inaccurate understanding of the palliative nature of the proposed treatment:

The proportion of patients who did not accurately understand that palliative RT was “not at all likely” to cure their cancer was 64%. Table 2 shows the unadjusted and adjusted analyses of factors associated with inaccurate beliefs about cure from RT. On multivariable analysis, older patients were more likely to have inaccurate beliefs (with age younger than 55 years as the reference, odds ratio [OR] was 1.44 for ages 55 to 64 years, 1.78 for ages 65 to 74 years, and 2.45 for ages older than 74 years; overall P =.02) as were patients of nonwhite race (African American OR, 1.48; other nonwhites OR, 3.32; overall P =.009), and patients whose surveys were completed by surrogates because they were too sick were less likely to have inaccurate beliefs (OR, 0.54; P = .04). Likelihood of inaccurate beliefs also varied by PDCR site (overall P .04).

Then, combining the results about radiation therapy with the results concerning chemotherapy previously reported in the NEJM, the authors report this not-so-surprising result:

Among 285 patients in our cohort who also completed survey items on their expectations about chemotherapy, we found that patients with inaccurate beliefs about RT were significantly more likely to also have inaccurate beliefs about chemotherapy (P. 002 by McNemar’s test); 92% of patients with inaccurate beliefs about RT also had inaccurate beliefs about chemotherapy (Table 3).

So, basically, we have a problem in oncology. There are a lot of patients with advanced cancer who don’t understand the true nature of their prognosis. The strength of these two studies is that they looked prospectively at robust sample sizes of patients, but they both share one big inherent weakness, and that’s that neither of them can tell us why there is this huge disconnect between the patients’ perception of their prognosis and the likelihood that chemotherapy or radiation therapy could potentially cure their cancer or help them live significantly longer versus the actual prognosis. We’re missing a critical piece of information, and that’s that we don’t know what these patients were told by their oncologists and radiation oncologists regarding their actual prognosis. In both studies, the authors point out that there is a lot of evidence that physicians are often uncomfortable talking to their patients about terminal cancer and death. Although on one level, this is not surprising (after all, physicians are human beings and don’t like contemplating mortality any more than the average person—less even, perhaps, because there is the whole issue of wanting to be able to cure patients and facing a profound rebuke to their professional abilities when faced with a patient they know they can’t cure), normally one would hope that physicians would be trained to address these issues honestly, openly, and with dignity. As in everything in medicine, things tend to be messier and more complicated than that.

Of course, this goes both ways. A physician’s discomfort facing a terminally ill patient is minor compared to the anguish of that terminally ill patient himself. No one wants to face the end of his existence. No one wants to contemplate what sorts of pain, suffering, and loss of autonomy he will have to endure before the end comes. Everyone reacts with at least some denial when faced with such horrible news. Pretty much everyone wants to grasp at any straw that is within reach when faced with a terminal diagnosis. Add the patients’ tendency to deny they are dying with physician discomfort over telling them that they are, in fact, dying and that the goals of the chemotherapy and radiation therapy being proposed are strictly palliative (i.e., to address symptoms and possibly prolong life somewhat), and it is probably not so surprising that so many patients with terminal cancer misunderstand their prognosis and the likelihood that their therapy will help them in the most important way that matters to them, prolongation of life or cure of their cancer. Or, it is not so surprising that they might respond to surveys in a way that suggests that they don’t understand the direness of their prognosis, which is a different thing than necessarily misunderstanding their prognosis. Either way, it is a significant problem. As Drs. Thomas J. Smith and Dan L. Longo point out in an accompanying editorial to the NEJM study, entitled “Talking to patients about dying“, patients “also choose not to believe.” Indeed, when patients are given their actual prognosis, many will still not admit that treatment will not cure them.

As the study authors point out in both articles, an honest, accurate discussion about patient prognosis is absolutely essential. Without it, patients do not have true informed consent and can feel driven to continue toxic treatments that can reduce the quality of their remaining life without significantly increasing the likelihood that they will live longer. There is always a fine, fuzzy, grey line between continuing chemotherapy and/or radiation for palliative purposes and feeling driven to continue it at all costs because it comes to be perceived as the only hope left. In the NEJM paper, the authors write:

Should we be concerned that the majority of patients with these diseases provide responses suggesting that they do not understand that there is essentially no chance that the chemotherapy they are receiving will cure them? Chemotherapy may offer palliation and some prolongation of life, so it represents a reasonable treatment choice for some patients. However, an argument can be made that patients without a sustained understanding that chemotherapy cannot cure their cancer have not met the standard for true ongoing informed consent to their treatment.28 Furthermore, previous studies have shown that patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure.29,30 This finding suggests that patients who do not know whether a treatment offers any possibility of cure may be compromised in their ability to make informed treatment decisions that are consonant with their preferences.29,30 Finally, and perhaps most worrisome, this misunderstanding could represent an obstacle to optimal end-of-life planning and care.

In the JCO paper, they write:

Poor understanding of treatment goals and prognosis are problematic for both medical and policy reasons. Patients cannot make well-informed decisions about their end-of-life care, taking into account risks and benefits of treatment, if they hold inaccurate beliefs about the goals of care. Studies have shown that patients with advanced cancer who do not understand and overestimate their prognosis are more likely to pursue intensive therapies near the end of life.14,28 These therapies may reduce quality of remaining life and incur substantial costs for patients with limited life expectancy. In particular, palliative RT requires daily visits for treatment, which can be burdensome for patients and families. It is possible that patients who understand that RT is not at all likely to result in cure might choose to forgo RT or pursue shorter courses of treatment. Although randomized studies suggest that short courses of RT are equally effective in many patients with poor prognosis,29 lengthier courses are more commonly given.8

In other words, this disconnect between the science-based goals of treatment and what patients perceive the goals of treatment to be, matters. It matters a lot. We exhaust a lot of money and, at least as important, precious time that terminally ill patients don’t have very much of, to administer toxic treatments that will not cure them. That does not mean that such treatments don’t palliate. When used appropriately in the correct clinical situations, radiation therapy and chemotherapy produce excellent palliation and are thus appropriate for quite a few patients with terminal cancer. However, that palliation generally means symptom reduction and maybe a slight increase in survival time.

Finally, there was an incredibly intriguing and paradoxical observation (at least to me) reported in the NEJM paper. It’s an observation that to me is relevant not just to science-based cancer care, but to the cancer quacks about which I write so often. Specifically, the authors report that patients were “less likely to provide inaccurate responses” if they reported lower scores for physician communication. That’s right, lower scores for physician communication correlate with a greater likelihood that the patient understands his prognosis and the goals of palliative chemotherapy. Specifically, in the scoring system used for patients to rate communication with their doctors, a score of 100 represents a perfect score. Using patients who scored their communication with their doctors under 80 as the baseline, the investigators calculated the odds ratio of a patient having an incorrect understanding of his prognosis to be 1.90 among those who gave a perfect score of 100 in physician communication. For patients who scored their physician’s communication between 80-99, the odds ratio was 1.32 compared to baseline. In other words, there was an inverse correlation between a patient’s rating of the communication with his physician and the likelihood that he had a correct understanding of the seriousness of his prognosis. In other words, high communication scores correlating with less understanding. Interestingly, this same correlation was not observed in the radiation therapy study reported in the JCO. In any case, the authors note:

In an era of greater measurement and accountability in health care, we need to recognize that oncologists who communicate honestly with their patients, a marker of a high quality of care, may be at risk for lower patient ratings. Our results suggest the need for targeted education to help all physicians learn to communicate honestly while also maintaining patients’ trust and regard. Efforts to incorporate earlier and more effective end-of-life care must address honestly and unambiguously patients’ unrealistic expectations about the outcomes of chemotherapy.

I think you can see the two directions where I’m going with this. First of all, as Press-Ganey, try to convince hospitals and patients that if patients are satisfied with a hospital it must mean that hospital is providing high quality care. The inherent assumption is that if patients are satisfied then the hospital and health care providers must be doing a good job. But, as I pointed out before, it’s just not that simple, and this could well be an example of that. I sometimes say that, as physicians and health care providers, there are times when we have to be “cruel to be kind in the right measure” (to steal a line from Nick Lowe). Giving a terminally ill patient a realistic assessment of his prognosis could well mean that the patient will think less highly of that physician’s communication skills—or even of that physician, period. Yet, giving the patient that assessment is the right thing to do. Sure, it’s also more complicated than that in that there are right and wrong times to deliver the news. Deliver it at the wrong time, and the patient will be less likely to accept it. Recognizing the right time to deliver such news is a physician skill that is what we call the “art” rather than the science of medicine. But sooner or later the news must be delivered.

The second direction I’m going, of course, is toward quacks and dubious cancer doctors. Almost invariably, such doctors are lionized by their patients, even the ones for whom treatment isn’t working (which is almost always nearly all of them—we are talking about quackery and non-science-based treatments here). They achieve this by giving the patient an unrealistic expectation that they can be saved, glossing over every setback as either being expected or indicative that, despite all appearances, the treatment is working after all (“the tumor will swell before it disappears” or “cyst formation means that the tumor is dying inside“). These practitioners will inevitably claim that they “never promised a cure,” and perhaps that is true if you look at what they say written on paper, but, in reality, when you take the totality of their interactions with patients into account, they do more or less promise a cure. Some even do so quite literally.

As hard as it is for many physicians and even patients to believe, patients generally welcome truthful and accurate conversations about prognosis, which do not usually increase anxiety or depression. Common reasons that physicians avoid such conversations include a number of misconceptions, some shared by patients and physicians, for which there is no evidence or for which there is actually disconfirming evidence, such as beliefs that palliative therapy will hasten the end or that it will rob the patient of hope. There’s no doubt that talking to patients about their prognosis is hard. Quite honestly, there’s a reason I’m a breast cancer surgeon instead of an oncologist, and that’s that the vast majority of my patients are potentially curable, many very curable. Yet, it’s part of our jobs. Even though I don’t come across a lot of patients with terminal disease in my practice, I want to be better at communicating with the ones I do encounter. Our patients deserve no less.

Comments

  1. #1 T.
    July 5, 2013

    Very good, and very respectful piece, Orac. I frankly don’t know what I would do if I would be faced with a diagnosys of a terminal cancer, but I hope I would have the dignity to accept it (in time) and I hope my doctor would give me the same dignity, as well.

  2. #2 Mephistopheles O'Brien
    July 5, 2013

    I know someone who was diagnosed with stage IV lung cancer last September. Her oncologists and various other doctors seem to have gone out of their way to explain just what is palliative care and to explain that the chance of a cure is basically nil.

  3. #3 elburto
    July 5, 2013

    I’m going to be lazy and essentially make the same comment I did over there.

    Could it be, I wonder, that patients who rated their doc as having bad communication skills had lower (ie. realistic) expectations, purely because they had a negative overall view of their oncologist?

    Anyone here with a chronic or acute illness will know that feeling, when you get paired with a doctor you just clash with on every level, and you think “Great. I’m f*cked”*. They may be an excellent clinician, but their manner may be awful, they might dismiss or outright deny certain symptoms or medication side-effects, or there could just be a personality conflict. Perhaps that’s the case in this study?

    *I’ve had some bad docs. There was the Nigerian locum tenens who accused me of faking my MRIs, an asthma specialist who couldn’t say the word ‘inhaler’, but the worst… ugh.

    The worst was the gastroenterologist who said ast year’s bowel obstruction was not real, and that the symptoms were “due to [my] hypochondria”, and that I’d “walk out of the hospital” in two days. He wasn’t quite sure how to respond to “Really? Wow, great, I haven’t walked anywhere for over a year!” Some docs just lack social graces I guess!

  4. #4 palindrom
    July 5, 2013

    elburto — ay yay yay, some people have no sense at all.

    That “walk out of the hospital” reminds me of the following extremely old joke:

    Patient with hand injury (worried) : “Doc, will I be able to play the piano?”

    Doctor: “Yes.”

    Patient: “Great! I never could before!”

  5. #5 Anthony
    July 5, 2013

    I have to wonder if there’s a reverse cause here: it’s not that better communication results in more misunderstandings, it’s that people rate communication as better if they can misunderstand it (at least, if they can misunderstand it in a way that’s favorable to them).

  6. #6 Bob G
    Los Angeles
    July 5, 2013

    I wonder if some of these data are the result of an all too human desire to leave a little room for hope in one’s life. In the normal course of life after a cancer diagnosis, it is possible to be anxious but to do one’s best not to think about the worst outcomes all the time. Failure to push away some of that fear some of the time is to be paralyzed with fear. If you then ask somebody in that situation to fill out a form that in essence asks the patient to say definitively, “I am going to die of this disease, and there is nothing that medical treatment can do to change that fact, or is even likely to delay it,” then you are forcing that person to go an additional step on the traditional stages of denial/acceptance.

    I recently saw an article in Medpage that pointed to anxiety as a common feature among people diagnosed with cancer, and the failure to treat or otherwise deal with this anxiety as a major issue. By contrast, depression was not as much of an issue.

    Handing a cancer patient a survey that invites him/her to give up all hope forces the person to make a choice between blunt acceptance of incipient mortality vs maintaining a certain amount of “healthy denial.” This is the term that was explained to me by a clinical psychologist who himself had a history of multiple cancers.

    I think there is also an inherent bias associated with asking people to scale a response from 1 to 5. Some people (me for one) tend to avoid extreme answers (“always” or “never”) when replying to routine commercial inquiries. I think that the same personality characteristics would apply to a medical questionaire. I also suspect that some questions have some inherent ambiguity (being defined not as vagueness, but as contradictory impulses), and a question about the level of communication coming from the oncologist is one of those. To the patient, it’s probably not so important that the doctor provide a powerpoint presentation on life expectancies vs grade of tumor pathology, but that the doctor provide some authoritative (not authoritarian) advice regarding treatment options. In particular, the idea of staying ahead of pain strikes me as the kind of concern that is mutually felt by patients and doctors alike, and the patient wants to know that he/she won’t be left to suffer without the best pain management available.

    One possibility is that the researchers would have gotten a different data set had they approached the question of mortality a little more gently. I suspect that a study like that would involve personal interviews, each requiring a substantial amount of time, and allowing the patient to work around psychological barriers to finally be able to vocalize his/her true beliefs. It might even help to ask patients being interviewed a question about how they deal with fear and anxiety, and work around to the patient providing a frank admission that he/she doesn’t entirely believe in the possibility of cure, but needs to hold onto some hope. I suspect that the data reported in this paper are consistent with that belief set. It might have even been possible to include a set of questions that would allow the patient to make these admissions in a slightly different context, in essence serving as a scale of validation for the more direct questions.

    By the way, is the Nick Lowe you referenced the dermatologist who used to practice in L.A. and now works in London?

  7. #7 Delurked Lurker
    A mote of dust suspended in a sunbeam
    July 5, 2013

    Thank you Orac

    I deal with this every day. I also concur with the studies findings as they relate to what I have witnessed.

    In a nutshell most people are scared of dying. Those that aren’t can accept reality.

    In my experience I have found that relatives, especially adult children of people with cancer are the most unrealistic of all and will try to push their parents into pointless treatments despite all the good advice given. Fortunately most of the parents have the good sense to ignore the unreasonable request to fight for a lost cause.

  8. #8 Mephistopheles O'Brien
    July 5, 2013

    And I am not frightened of dying. Any time will do, I don’t mind. Why should I be frightened of dying? There’s no reason for it – you’ve got to go sometime

  9. #9 Delurked Lurker
    On the dark side of the Moon
    July 5, 2013

    MOB @ 8

    I haven’t heard that for a while, Listening to the album now :)

  10. #10 Delurked Lurker
    On the dark side of the Moon
    July 5, 2013

    MOB
    The reply should have been
    “I never said I was frightened of dying”

  11. #11 Mephistopheles O'Brien
    July 5, 2013

    @Delurked Lurker – that is so true. Combined with “there is no dark side in the moon, really. As a matter of fact it’s all dark.”

    Of course, you needed some really good vinyl to hear that. And it’s a different song.

  12. #12 Krubozumo Nyankoye
    July 5, 2013

    Excellent summary of some intriguing and helpful articles. When my father died of esophegeal adenocarcinoma almost seven years ago his physician was very straitforward with everyone including his patient. My father was 90 so he was exactly shocked. The only palliative treatment recommended was RT to try to shrink the primary tumor and improve his quality of life by allowing him to eat a bit of solid food instead of pureed everything. It actually worked rather well. My sister and I took turns staying with him and looking out for his needs and driving him back and forth to the clinic. I spent about 6 weeks with him of the roughly 13 that he lived after he was diagnosed.
    That time I think was good for all of us. No unrealistic expectations but it was a pleasure to make his meals as interesting and enjoyable as possible and even better that he could enjoy real food instead of pablum.

    In my view, the only thing worse than no hope at all is false hope when none is justified.

    When I think in terms of my own future death, I just remember all the great stuff that happened to me before I was born, it’ll be just like that….

    Good work as usual Orac.

  13. #13 Sastra
    July 6, 2013

    As Barbara Ehrenreich’s book Bright-Sided attests, there’s a strong faction of helpful healers out there pushing the idea that the most important element for anyone’s recovery from cancer is “positive thinking.”

    If you think you’re going to die then you will die. But if you think you’re going to live …. well, then, your mind/spirit can MAKE this happen: have faith. Believe. If nothing else, an optimistic attitude is critical. ‘Negativity’ of any kind is fatal.

    I don’t know, but I wouldn’t be surprised if this Positive-Thinking meme was partially responsible for at least some of the responses. Yes, they heard what the doctor said — but they know how they’re supposed to behave. They know the script.

  14. #14 Kitty
    July 6, 2013

    Wonderful article. I have a dear friend in YEAR 9 of lung cancer. She never smoked, the tumor was caught early, she will never stop having some form of chemotherapy. She does very well, and changes chemo every few months (some are nicer than others). Her problem, she said people use her as an example over and over of how someone with lung cancer can survive for so long. She knew from the start she was going to never be “cured”, in fact, her tumor is still there (I’ve seen it on her CAT scan). She knows that fighting this will be a life long fight. She will never NOT get chemo. People call her on the phone when they or a friend are diagnosed. She has to break it to them, she is NOT typical. It’s heartbreaking. http://yankeeskeptic.com/2013/03/26/smoke-screens-and-the-reality-of-lung-cancer/

  15. #15 Nicole
    July 6, 2013

    My aunt, who is about 56 years old, has stage 4 colon cancer and is midway through her second year of chemo. She knows it is terminal- she was a nurse, and knows that she’s beat the odds thus far.

    My cousin doesn’t seem to understand it- she seems to believe the chemo will cure her. As do many of my relatives. It takes little more than a google search for “stage 4 colon cancer” to realize it is terminal, yet, for whatever reason, people still want to believe it won’t kill her. It is frustrating.

  16. #16 Delurked Lurker
    On a pale blue dot suspended in a sunbeam
    July 6, 2013

    Nicole@15

    I personally know of a lady in her 80;s who has gone 7 years and 2 months with stage 4 colon cancer. She has had multiple lines of treatment.
    If your cousin thinks this can be cured and it gives her hope who are we to burst that bubble. The important thing is that your aunt knows the truth and it is your aunt that has cancer.

    Best of luck to your aunt and take care

  17. #17 Nicole
    July 6, 2013

    @Delurker

    The issue is my cousin still lives with her mom and depends on her financially and for help raising her daughter. So, yeah, she needs to prepare both financially and emotionally. And she flat out is not prepared. I do not have a good relationship with my cousin, so I haven’t discussed it with her aside from telling her that if she needs someone to babysit to let me know.

    My aunt’s cancer markers were up at her last blood test, and she had an adverse reaction to one of the medications in her chemo cocktail (she was in a large scale clinical trial, most people who I’ve heard have survived 2+ years are also in that trial or a related one) so she is no longer receiving the optimal treatment. The cancer has metastasized to both her liver and her lungs. There isn’t much to be hopeful about.

  18. #18 Nicole
    July 6, 2013

    @Delurker

    The issue is my cousin still lives with her mom and depends on her financially and for help raising her daughter. So, yeah, she needs to prepare both financially and emotionally. And she flat out is not prepared. I do not have a good relationship with my cousin, so I haven’t discussed it with her aside from telling her that if she needs someone to babysit to let me know.

    My aunt’s cancer markers were up at her last blood test, and she had an adverse reaction to one of the medications in her chemo cocktail (she was in a large scale clinical trial, most people who I’ve heard have survived 2+ years are also in that trial or a related one) so she is no longer receiving the optimal treatment. The cancer has metastasized to both her liver and her lungs. There isn’t much to be hopeful about.

  19. #19 Delurked Lurker
    On a pale blue dot suspended in a sunbeam
    July 6, 2013

    Nicole@18

    Since you do not have a close relationship with your cousin your kind offer of help with babysitting is about all you can do at this point for her. From what you wrote I would leave it at that.
    The hope I hold for your aunt is that she can maintain some quality of life and ensure her death is peaceful and relatively pain free.
    I am not sure where you live but if it is in the USA then I would suggest that hospice be contacted. From all I have heard about this organization it is the best bet to ensure my above mentioned hope for your aunt is realized. If you get a chance speak to your aunt about this. Of course if you live elsewhere disregard this

    Good luck

  20. #20 YOYO
    July 7, 2013

    I have recently been going through breast cancer treatment ( currently on tamoxifen ) and had a number of poor surgery outcomes. My problem with the surgeon was not that I don’t expect things will go badly at times but a really arrogant attitude that because other patients had a worse prognosis, I had no right to be upset. I would appreciate anyone’s comments on this because its so easy to be labelled the bad patient and I still have a long way to go.

  21. #21 Pris
    The Dark Side of the Force
    July 7, 2013

    YOYO @ 20: Take a look at Bright Sided (US Title) or Smile or Die (UK Title) by Barbara Ehrenreich.

    Seems like your surgeon internalized that ‘positive thinking’ bullshit.

    On another note: It isn’t only cancer diagnoses that has patients deny reality.

    My grandfather was severely brain damaged after an episode of heart arrest. 30+ mins without a pulse will do that to you. He lost most of his ability to speak (took lots of therapy to get him to say yes and no), much of his motor function (could walk when aided and put a fork in his mouth, again after a lot of therapy). He also lost bowel and bladder control. Since he was unable to express himself it was hard to tell how his cognitive functions were doing, but he seemed to recognize people.

    It was crystal clear to everyone that this was as good as it was going to get. And that the general aging progress would mean that he was going to get worse again sooner or later.

    Except my grandmother. She remained convinced that he would make a full recovery and resume his role of taking care of her.

  22. #22 Spectator
    July 7, 2013

    @Yoyo

    Of course you are teed off about a less than average outcome. It’s your life, who wouldn’t be??!

  23. #23 prn
    July 7, 2013

    The fundamental issue with metastatic disease is the (in)ability of oncologists to shut down the metastatic process. Also rapid accumulation of toxicity with the specifically accepted drugs is significant and self limiting. If you shut down metastasis, or at least greatly stretch out metastatic “blooms”, surgery becomes more successful even as an attrition strategy.

    Stopping metastasis appears to be hampered by the current MTD regimens. Success will utilize more targeted, immunogenic, antiangiogenic and metronomic options with less toxicity. ASCO and NCCN lag way behind what is actually available in the global literature with proper analysis and synthesis weilde in.

  24. #24 prn
    July 7, 2013

    ….wielded in a systematic manner.

  25. [...] The authors just chose to do it that way. Depressingly as well, the authors conclusion about radiation therapy is very similar to their conclusion about chemotherapy, except that slightly different factors appear to be correlated with an inaccurate understanding of the palliative nature of the proposed treatment: The proportion of patients who did not accurately understand that palliative RT was not at all likely to cure their cancer was 64%. Table 2 shows the unadjusted and adjusted analyses of factors associated with inaccurate beliefs about cure from RT. On multivariable analysis, older patients were more likely to have inaccurate beliefs (with age younger than 55 years as the reference, odds ratio [OR] was 1.44 for ages 55 to 64 years, 1.78 for ages 65 to 74 years, and 2.45 for ages older than 74 years; overall P =.02) as were patients of nonwhite race (African American OR, 1.48; other nonwhites OR, 3.32; overall P =.009), and patients whose surveys were completed by surrogates because they were too sick were less likely to have inaccurate beliefs (OR, 0.54; P = .04). Likelihood of inaccurate beliefs also varied by PDCR site (overall P .04). Then, combining the results about radiation therapy with the results concerning chemotherapy previously reported in the NEJM, the authors report this not-so-surprising result: Among 285 patients in our cohort who also completed survey items on their expectations about chemotherapy, we found that patients with inaccurate beliefs about RT were significantly more likely to also have inaccurate beliefs about chemotherapy (P. For the original version including any supplementary images or video, visit When patient expectations battle with reality [...]

  26. #26 Lawrence
    July 8, 2013

    @prn – then why haven’t you compiled all of the available “global” literature and presented it?

  27. #27 liz
    planet earth
    July 8, 2013

    Fortunately the “positive attitude” stuff has been found not to be true. Unfortunately, as one poster pointed out, lots of people don’t seem to know that. Then those people blame the victim. This requirement to be positive when all you want to do is scream and cry does a real disservice to cancer patients.

    Part of the problem behind failing to believe nothing you do will cure you is that oncologists don’t talk about death, they try to leave hope for symptom free life with treatment and underplay the death part of it. Part of the problem is that patients don’t want to think about dying from the disease and there the occasional cases where someone survives despite the odds so they hang their hope on that.

    There are psychological explanations to the phenomena under discussion. Cognitive biases affect thinking. When we hear about the rare case of a cure against all odds we don’t put it in the context of 1 out of million. We think what we hear about happens more frequent than it really does.

    Also people don’t understand odds. Look at the lottery if you want the short version of thinking that you will be lucky in comparison to the odds. A logical, rational person would never buy a lottery ticket unless they wanted to put a match to a dollar. Instead many rationalize it that they are buying hope. Or, as I was told by someone I was trying to explain why buying a lottery ticked was not going to solve his money problems, “If I think I will be lucky then that changes the odds”. And in a gas station someone came into buy a ticket, wanted to know if anyone had won there as he believed that would increase his odds of winning. I did manage to convince him that this has nothing to do with the odds of winning… and so he bought his tickets because this time he felt lucky so he bought twice as many tickets as he usually did… sigh.

    Then people are loss framed (eg going to die so look at things from the point of view of what they will lose if things don’t work out) and that results in a cognitive bias that increases risk taking behavior (doing more chemo, for instance).

    Escalation of commitment to a failing course of action is involved – I have done all this chemo ( so “all this chemo” is sunk costs which we hate writing off and so we mistakenly take that into consideration in future decision making) and if I quit now then it was all a waste, maybe this time it will work…

    Put all these things together and it is a recipe for not quitting when it is time to quit, for not believing that there is nothing more we can do, for not understanding that despite the odds and the science behind all this that says you will not be cured (it is amazing the number of people who only selectively believe in science – last I know gravity worked all the time, not just when you wanted it to), that people still hope/believe they will be the exception.

    As someone with a terminal cancer (but with a longer life span), my ability to think about dying from it varies from day to day. Some days I just can’t. Other days I google trying to figure out how long I have left… so I am living this. Fortunately I understand science and realize that fundamentally there is nothing that will cure me. Initially I had trouble believing that and spent ages searching medical journals and clinical trials for the magic bullet; wanted the most aggressive treatment possible in the hopes that I would defy the odds. It does take time to get a grip about the fact that you will die of this disease. When I relapse (and I will, in fact for most the natural history of this cancer is to relapse multiple times) I will still choose treatment, however I may choose something more gentle than last time since all treatment gives me is disease free times not longer over all survival. I was not at the point to make a decision like this 30 months ago when deciding what to do about this diagnosis. I had to deal with the emotional side of this disease before I was ready to accept that with this cancer there is no cure and an aggressive, miserable approach was not going to change the ultimate outcome.

  28. #28 prn
    Lawrence@27
    July 9, 2013

    then why haven’t you compiled all of the available “global” literature and presented it?

    A sisyphean task, especially the present part for slow learners in denial, and on the attack.

  29. #29 Krebiozen
    July 9, 2013

    prn,

    then why haven’t you compiled all of the available “global” literature and presented it?

    A sisyphean task, especially the present part for slow learners in denial, and on the attack.

    How can compiling and presenting data possibly be “sisyphean”? Does the data somehow disappear? Or do you mean that people annoyingly keep pointing out that the data doesn’t actually say what you claim it does.

    Are you saying that you haven’t actually systematically analyzed and synthesized what is available in the global literature? If so, how can you make such claims, if not, why can’t you present it?

    It sounds to me as if you are just blowing smoke, as usual.

  30. #30 prn
    July 9, 2013

    Any investigation and read of the raw, global stream of literature is likely to be large for a given illness. Analyzing and compiling the most useful bits therein is lengthy in its own right.

    Does the data somehow disappear?
    :( Yes, Windows does seem to collapse under the accumulated page load rather suddenly, with some of my choice finds. :)

    t sounds to me as if you are just blowing smoke, as usual.
    No, from my perspective you’re not results oriented or tied to physical reality. Your examples are not connected to what I look at, like your vitamin D dump which misses proper grouping and cofactors by decades e.g. vitamin D with deficiencies of other known factors like vitamin K2 and magnesium, or interference from known antagonists. You appeal to authority, eg IOM, and social presumptions, like your endocrinologist friend on thyroid. You totally miss things that are important to at least groups of damaged and distressed patients who have struck out with standard care.

    Mr. Twain’s aphorism applies to some disconnects here, and more broadly, medical failings today: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”

    It sounds to me as if you are just blowing smoke, as usual.
    No, I am simply not carrying on extended rebuttals and unpaid referencing this year. , In 2010, 2011 I tried harder. Now I am fine many times when I am sure of your position and source. I appreciate any new sources that I am unfamiliar with, so I am interested to make sure of your basis. I am not here to “convert the heathen”, I sometimes simply raise a question or discrepancy to make sure what you think, or, in case a real skeptic wanders by.