I write about alternative cancer treatments a lot, in particular the lack of evidence for such practices, many of which are at best pseudoscientific and at worst pure mystical nonsense. The reason, of course, is simple. I’m a breast cancer surgeon, and I hate seeing people who might be saved from death due to cancer falling prey to treatments that demonstrably lessen their chances of survival, either by leading patients to reject effective treatment in favor of ineffective or even harmful treatments or, at the very least, to delay effective treatment until the patient realizes that the quackery chosen isn’t preventing the growth and spread of his or her tumor. This can sometimes take a long time. I’ve seen women with breast cancer whose breasts were basically eaten away until there was nothing left but an ulcerated mass on their chest—more than that, a bleeding, rotting, malodorous ulcerated mass. Yes, it’s an ugly picture, but I’ve seen it all too many times.
These sorts of cases are less common, though. Fortunately, relatively few are the women who reject conventional medicine altogether. Indeed, most women will accept surgery of some sort or another, either a lumpectomy or a mastectomy. Sometimes, they undergo an excisional biopsy, not realizing that that for smaller tumors an excisional biopsy can remove the whole tumor and in some cases be curative. No, far more common is the case where a woman accepts surgery but then refuses chemotherapy, hormonal therapy, and/or radiation, either altogether or in favor of some form of quackery. In doing so, such women, whether they simply refuse adjuvant therapy altogether for whatever reason or go beyond that and fall prey to quackery, fail to maximize their chances of surviving their breast cancer, sometimes by quite a bit, and that is something to be concerned about.
Indeed, these sorts of cases were one of the very first topics I ever wrote about on this blog and have remained a staple of the blog ever since, whether I was discussing Suzanne Somers, who had surgery and radiation but apparently refused Tamoxifen for her breast cancer and then later had what she thought to be a recurrence that almost certainly wasn’t, other alternative breast cancer cure testimonials (like this one or this one), or even testimonials for other cancers where chemotherapy and/or radiation are used in addition to surgery.
The reason such alternative cancer cure testimonials are compelling is that most people don’t understand the difference between the primary treatment for breast cancer and an adjuvant treatment. In the case of breast cancer, for instance (and colorectal cancer as well, among other solid tumors), surgery is the primary treatment and can be curative by itself. What chemotherapy, radiation therapy, and hormonal therapy can add to the treatment of, for example, breast cancer is to decrease the chance of its recurring after successful surgical excision, whether by mastectomy or lumpectomy. All a breast cancer patient does in refusing radiation therapy after successful breast conserving surgery is to accept a risk of recurrence in the breast of 30-40% instead of 5-8%. All a woman does by refusing recommended chemotherapy after surgery is to refuse a relative decrease in their risk of dying of a recurrence of breast cancer by 25-30%, a benefit that is, in absolute terms, much greater for more advanced but still curable breast cancers. However, many of these women who turn down adjuvant therapy in favor of quackery will still survive, thanks to the surgery, and the ones whose cancers recur rapidly disappear from the alternative cancer cure industry PR machine, never to be seen again.
Because adjuvant chemotherapy, targeted therapies, and hormonal therapies have contributed to a decline in mortality from breast cancer of 39% since 1989, it is important to determine why women refuse these treatments and fail to optimize their chances of long term survival. To a lesser, but still important extent, it’s important to try to understand what motivates women to turn down effective adjuvant therapy, as that is the first step in developing strategies to persuade them. Recently, there was a relatively large study that addressed just this question.
Patient refusal of adjuvant therapy: A question of trust?
Earlier this month a number of news stories and press releases appeared about a study published in late September by investigators at Johns Hopkins Bloomberg School of Public Health, Columbia University, and Massachusetts General Hospital looking at trust—or, more specifically, a lack of trust—as a key motivator in women refusing adjuvant therapy recommendations and opting for discordant care; i.e., care that doesn’t conform to evidence-based care recommended by the patient’s physicians. It’s an issue that hasn’t been studied as well as it should be, as the authors, Lorraine T. Dean, Shadiya L. Moss, Anne Marie McCarthy, and Katrina Armstrong point out in the introduction:
Relatively little is currently known about the relationship between healthcare system distrust and cancer treatment. A previous study of distrust and adjuvant cancer treatment (3) found that distrust in medical institutions was associated with increased risk of not initiating adjuvant treatment in a sample of 258 early stage (Stage I and II) breast cancer patients from one urban area. However, that study did not include the following in their analysis: which treatments were recommended by the physician, the extent to which physician distrust mediated the relationship between healthcare system distrust and cancer treatment, and an assessment of those who may have initiated treatment but did not fully adhere to the treatment plan. Other studies of distrust among women with a history of breast cancer have focused on healthcare system distrust and: mental health or psychosocial outcomes (13), quality of care (14,15), greater emotional, physical, financial, and sexual problems after treatment (16), less comfort with the use of de-identified information from medical records for research (17), less endorsement of the necessity of adjuvant chemotherapy (18); and provider distrust and quality of care (19).
The current study was designed to answer two related questions: Is healthcare system distrust associated with whether or not patients follow their physician’s recommendations for adjuvant treatment after breast cancer; and does physician trust mediate the relationship between healthcare system distrust and receipt of adjuvant treatment? It expands on prior work by including a large population based sample in two different US states, Pennsylvania and Florida, based on physician recommendations for several adjuvant treatments with explicit testing of the potential mediating role of physician distrust, and assesses patients who did not complete the full treatment plan. To our knowledge, it is the largest study of healthcare system distrust among women with a history of breast cancer and adds innovation of recruiting through a cancer registry to survey participants about healthcare system distrust.
To this end, the authors used Pennsylvania and Florida cancer registries, using data from a population from a study originally intended to assess the differences in breast cancer women associated with race. The inclusion criteria for the study included localized invasive breast cancer, age under 65 at the time of diagnosis, residency in either Pennsylvania or Florida at the time of diagnosis, and diagnosis between January 1, 2005 and December 31, 2007. Exclusion criteria included patients over 65, cognitive impairment, inability to speak English or Spanish, and metastatic disease at presentation. The overall response rate was very good for surveys of this type, 61%.
For purposes of the survey, cancer treatment discordance was defined as any difference in treatment that a patient reported receiving compared to the treatment the patient reported as having been recommended to her by the treating surgeon and/or oncologist. Now, I know what you’re probably thinking: Is this accurate enough? It turns out that simple self-reporting like this is 90% accurate, particularly for yes/no questions about different kinds of therapy. Since the adjuvant therapies used after surgery for breast cancer include radiation therapy, chemotherapy, and hormonal therapy, the authors constructed a combined measure of treatment discordance based on how many of the three therapies patients accepted or declined. Of course, if a particular adjuvant therapy was not recommended for a patient, then not undergoing it couldn’t be considered discordant. (For example, depending on the specific characteristics of the tumor, not all breast cancer patients are offered chemotherapy or hormonal therapy; and most patients—but by no means anywhere near all patients—undergoing mastectomy don’t require radiation therapy.)
Patients were also assessed for their level of trust in the health care system and their physicians. Trust in the health care system was assessed using the 9-item Health Care System Distrust scale which measures of domains of values and competence distrust on a 5-point agreement scale (1 = strongly disagree, 5 = strongly agree), producing a score ranging from 9 to 45. The authors report that this measure has “acceptable construct validity and high internal consistency (ɑ=0.84 in the current sample).” To measure trust in patients’ physicians, researchers used the 7-item Trust in Physician Scale, which uses a 7- point agreement scale (1=strongly disagree, 7=strongly agree), to produce a score ranging from 7 to 49. Information was also requested on socio-demographic factors, such as age, race, ethnicity, income, education, marital status, employment status, health insurance status, and state of residence at the time of diagnosis. They also went to the cancer registry databases to verify clinical treatment factors, such as stage, surgical removal of cancer, and recurrence.
So what did the authors find? There were 2,754 women included in the final analytic sample, of which 69.8% (n=1,922) reported always receiving the cancer treatments their surgeon or oncologist recommended, and 30.2% (n=832) reported not pursing at least one recommended treatment. I must admit that I was rather surprised that the percentage of discordant cases was so high, but maybe I shouldn’t have been. In any case, in the total sample, 10% declined radiation treatment; 11% declined chemotherapy; and 18% declined hormone therapy. (Note that some women turned down more than one modality.) Looking at the numbers, though, some of this does appear to jibe with my clinical experience, in that I’ve encountered more women who have turned down hormonal therapy than who have turned down others. The reason is probably that hormonal therapy, although only a pill as opposed to chemotherapy, is administered for five or, in more recent recommendations, as many as ten years, and women who can tolerate the much more severe side effects of chemotherapy only have to endure them for a few months, whereas they have a harder time dealing with the side effects of Tamoxifen or aromatase inhibitors for five or ten years.
The authors found:
The mean healthcare system distrust score was 28 (SD=3; range 9-40), while the mean physician trust score was 29 (SD=4; range 9-35). Bivariate models suggested that greater healthcare system distrust was significantly associated with older age, being Black, having attended some college, and being employed, while less healthcare system distrust was associated with greater physician trust, being married, having health insurance, and living in Pennsylvania. Only marital status, being employed, physician trust, and living in Pennsylvania were still associated with distrust in a fully adjusted model (Table 2). Participants reporting treatment discordance were significantly in the top tertile of healthcare system distrust (p=0.003) as well as being more likely to be older (p=0.04), be diagnosed at Stage 1 (p<0.001), and live in Florida (p=0.003). In contrast, physician trust was not a significant predictor of discordance (p=0.49). Although healthcare system distrust was significantly associated with discordance (p=0.03) and physician trust (p<0.001) (Figure 1), a mediation analysis (Table 3: Models A & B) suggested that physician trust was not a mediator of the relationship between healthcare system distrust and treatment discordance (total indirect OR=1.00 [1.00,1.01]). Thus, rather than treat physician trust as a mediator, it was included in the final model as a covariate.
Basically, those in the group with the highest distrust of the healthcare system were 22% more likely to have refused or fail to complete one or more adjuvant treatments. In other words, patients who had the most distrust of the healthcare system were more likely to be discordant in their adjuvant therapy; i.e., to refuse or fail to complete a recommended course of therapy. Interestingly, in this study, neither race nor socioeconomic status were significant drivers of discordance in this study, which is a good thing because these are not modifiable factors.
Physician trust versus a more generalized distrust
How could these results be? The authors note that attempts to increase physician trust as a strategy to reduce mistrust in the healthcare system have had results ranging from zero to very modest, which makes sense if patients view the two issues as separate. I like to make an analogy to Congress. Voters routinely express extreme distrust of Congress, but most voters actually like their own representative. Similarly, it’s not hard to envision how most patients might actually like and trust their own doctors, while simultaneously having a great deal of mistrust for the health care system as a whole.
As the authors note:
The limited research to date about reducing distrust in healthcare has focused on increasing trust in physicians with null to modest (30-32) results. However, given that the relationship between distrust and treatment discordance was not mediated by physician trust, these results suggest that addressing healthcare system distrust may be an important and distinct effort from strategies focused on lack of physician trust. Rather than playing a mediating role, patients may view physician trust as independent of their trust in the healthcare system as an institution; that is, even if patients distrust the healthcare system, they may still have trust in their personal physicians. Patients may be able to exercise greater choice in physicians, but may not have the same breadth of choices in using the healthcare system. Addressing healthcare system distrust might be informed by strategies that have addressed distrust in other types of institutions, such as corporations (29), according to the values and competence domains. For example, addressing the subdomain of values might be achieved through expanded access to adjuvant care, while addressing the subdomain of competence might be achieved through expanded access to health professionals while deciding to start or continue adjuvant treatment. Of course, any intervention to reduce healthcare system distrust would first need to be tested before implementing wide-scale changes.
The authors also note a rather interesting potential wrinkle to the problem of patients refusing adjuvant therapy, namely that greater cancer treatment discordance will always lead to worse healthcare outcomes, noting that it is “possible that distrust could perform a function in course-correcting treatment that is overprescribed or too aggressive” and that such distrust “might lead to treatment discordance that was ultimately beneficial rather than detrimental.” When I read that part, I had to concede that it is possible that this could be true, but unlikely. My own experience in quality improvement initiatives means that I’ve become fairly familiar with the literature on the relationship between concordance with evidence-based treatment guidelines and patient outcomes. That literature generally supports that better concordance results in better outcomes. So I couldn’t help but smile as I continued to read and noted that, consistent with that, the authors examined a separate model of treatment discordance, looking at its association with cancer recurrence, and found that the model suggested a 40% increased risk of cancer recurrence for patients who reported treatment discordance, after adjusting for adjusting for healthcare system and physician distrust and relevant racial and socioeconomic factors. This result suggests that that discordance due to distrust may lead to poorer health outcomes.
So what to do?
The authors note that improving trust in the healthcare system will require more than just trying to build trust in patients’ physicians, noting:
“If ordinary businesses can learn to increase trust in their brands, why not the same with health care institutions?” Dean says.
This is, of course, much easier said than done, and this study doesn’t address how increasing trust in the healthcare system might be accomplished. That will be the task for the future. It is an important task, though, because, although I might be extrapolating more than the evidence supports (yet), I’d bet that such strategies could also help address the antivaccine movement as well. In any case, if we want to save as many savable lives of people with cancer as possible, this is where the healthcare system needs to pay more attention, and a salutary side effect would also be to make alternative cancer cure testimonials less common.
16 replies on “Why do some breast cancer patients decline chemotherapy and radiation?”
Why would living in Pennsylvania decrease distrust?
(Fascinating stuff, thank you).
I wondered that, too, Dorit. But since the other differences included race and education, maybe that explains some of it?
Pennsylvania isn’t extreme on either of those factors. However, depending on how the patients were distributed within the state, those factors might come into play. Pennsylvania notoriously consists of Philadelphia on the east side, Pittsburgh on the west side, and Alabama in between. If the patients are disproportionately from Pennsyltucky rather than the metro areas, or vice versa, that could skew the results.
Curiously, Pennslyvania’s Yuengling beer is so popular in Florida that they built a brewery in Tampa. Then again, that’s probably the 65+ group.
I’m not so sure about this analogy — after all, branding is already rampant, at least among the healthcare institutions I encounter.
A friend who has complied with all treatment so far and has what I’d call averrage trust in the medical system has decided that she will not do five more years of the aromatase inhibitor. She finds it offensive that her heretofore trusted physician would even ask. She feels he is tone deaf to her cries of suffering with side effects. I didn’t know what to say to her, not being familiar with said side effects, but I clearly heard her distress.
Orac: I am kissmetoad and not sure why its posting under my email anthro49 I will tryto fix.
It’s difficult to trust a system that pats itself on the back for cost optimization and profit. Anthem backcharging patients for the entire cost (thousands) when going to the ED for chest or abd pain only to find gerd, ovarian cysts, or constipation (thankfully). Only if you have chest pain with reciprocal ECG changes and bump in troponins on your ‘handheld i-stat,’ which everyone has at home on their dresser — ok, now you can call for an ambulance.
The health insurance and medicare/medicaid “system” has totally screwed patients for decades, and keeps on screwing patients. HMOs completely f’d us. Trust in the healthcare system, yeah, f that. We’re paid to process tests and a quota of patients daily for insurance companies or for govt reimbursement, not to provide any measurable benchmark for wellness or improve outcomes. It’s about what we do to a patient, not what we can do for a patient.
One message has been made very clear, if you are sick in America, get well, don’t EVER think about getting sick. The healthcare system here has little to do with providing health care, it’s about billing generation, profiteering, and providing bureaucrats with a powerbase that offer NOTHING to patient. Without fixing these fundamental design problems, health care providers trying to use viable evidence-based treatments and save lives will be met with distrust.
Evolution in action!
There is an entire industry dedicated to provoking distrust of the health care system. How large a factor this is, I have no idea.
Hey, has AoA announced a boycott of McCormick yet? I used a bottle of this at a lunch spot today.
My friend with breast cancer opted for surgery and radiation which were expensive enough for an uninsured person, but chemo was just too expensive. She hit the 10 year survival mark, so that may not have been a bad choice for her.
I do wonder how many patients refuse some treatments because they can’t afford them. Which is horrendously sad and depressing. I’m glad your friend made it 10 years.
I was treated for breast cancer 2015/2016. I was diagnosed at 47. It’s miserable, it never seems to come to an end and the costs are mounting. I’ve had my ovaries and fallopian tubes removed so I could drop Tamoxifen and start letrozole. Now I’m being told I need to add Zometra every 6 months. How much is that going to set me back? Is it worth it to me in terms of discomfort and possible side effects – presuming my dentist signs off on it? I begged for a bone density scan in 2016 and I have super-dense bones (which also means I was at higher risk of developing breast cancer, in addition to a recurrence – despite a lifetime of eating my yogurt and weight-bearing exercise feels like a betrayal). I’m going to have another one done in 2018 prior to possibly starting Zometra.
It’s not just the treatment. It’s the time to be treated, recovery from the treatments (chemo, surgery, radiation), plus the ongoing costs of medications, treatments and we’re talking years of this happening. I was able to work full-time throughout this too, with the exception of recovery from the surgery. I was one of the healthier patients and I’m still not fully convinced it was worth it.
My body has taken a beating in more than just that mastectomy and so has my mental health, as well as my finances. It’s less about trust in the physicians than it is trust in my health insurer. Maybe more questions should be asked about that aspect of treating people.
Trust emotions- that’s the main issue? Really? You can’t be serious.
How about quality of life? Neuropathy is almost guaranteed to occur as a result of chemotherapy. A lot of patients recover but what about the ones who don’t?
I’m not going to list the side effects (you can check the package insert for any of them yourself)
Improve the “therapies” and develop better prevention of permanent side effects.
I “trust” you will ignore this feedback as a just complaining from a person with trust issues.
The article does refer to side effects, and the author is well aware of the problem of side effects and referred to them in the past.