The COPD Foundation say that "the dreaded question" for COPD patients is: "Did you smoke?"
"Unfortunately, I believe that a tendency to blame the patient has contributed to COPD (chronic obstructive pulmonary disease) getting less attention than other common chronic diseases," Dr. Andrea Gershon told us.
"There was a belief that, because people with COPD smoked, they were deserving of their fate and not deserving of resources put towards their disease," she continued. "I think this is wrong on many levels. Luckily, things are changing."
Dr. Gershon, an assistant professor of medicine at the University of Toronto, Canada, was responding to a question related to her latest study, which investigates the efficacy of different treatments for older adults with COPD. However, her point on stigma is an interesting one, as it offers an example of how popular stigmas may directly affect both research and care.
Dr. Gershon's study - published in JAMA - also makes the point that, despite COPD being the third leading cause of death in the US, there is comparatively little available evidence on how to treat COPD patients - particularly elderly patients and those who have other similar diseases, such as asthma.
- It is estimated that COPD will become the fifth leading cause of disability by 2020
- COPD refers primarily to two conditions that compromise breathing: emphysema and chronic bronchitis
- The number of deaths among women from COPD has more than quadrupled since 1980, corresponding with increased numbers of female smokers.
But how does stigma surrounding COPD begin? The COPD Foundation explain that "the dreaded question" for COPD patients is: "Did you smoke?"
"So much is insinuated in three simple words, and so many in our community have to withstand the stigma associated with the disease," the foundation writes. "All too often, people with COPD are afraid to reach out for help, let alone raise awareness for the disease, because they believe in the end they will be shamed and blamed for smoking."
In truth, smoking does cause the majority of COPD cases, but the COPD Foundation are keen to point out that 25% of COPD patients have never smoked. Respiratory diseases, the foundation reminds, are also caused by environmental, occupational and genetic factors.
Because smoking is considered to be the single most effective preventive intervention for COPD, persuading patients to quit smoking is a key area of concern for health care providers.
However, many COPD patients report feeling not only a sense of blame from others, but they also blame themselves and feel guilty and shameful over their symptoms. This self-blame may begin with an acknowledgment that the patient's smoking history may have caused their COPD, but it may become more severe if the patient is unsuccessful at giving up smoking.
'Guilty, discredited and judged' by society
In a 2011 study on self-blame and stigmatization among COPD patients, published in the Scandinavian Journal of Caring Studies, its authors consider that: "In Western societies, there is now an increasing awareness of personal responsibility for promoting one's health. This awareness includes possible messages of guilt, and vulnerable individuals' well-being can potentially be threatened if they feel discredited because of their illness."
To avoid feeling judged, COPD patients may gravitate toward groups where this judgment will not be present, such as by socializing with smokers.
The authors interviewed a series of COPD patients, who - following diagnosis - reported no longer feeling like they were members of "the world of the healthy" and felt discredited and judged by society, who they say deemed their health problems to be self-inflicted.
When health care professionals most strongly emphasized the smoking habits of the patients during consultations, the patients in this study interpreted the approach as a lack of empathy. Many of the participants were also angered by public health campaigns depicting COPD patients as "tobacco addicts."
"Their intention is not to improve conditions for people with COPD," claimed one interviewee, who reported feeling exploited by such campaigns. "The most important thing is to campaign for public smoking cessation."
One consequence of the pressure some COPD patients say they experience from society is a tendency to try and disguise their illness.
"Persons suffering from COPD are experts in hiding what we suffer from," said one participant. "I hide my problems when communicating with my business associates. I use these techniques all the time. Always make them start going upstairs first, never walk together [...]"
This instinct to conceal COPD symptoms for fear of being judged also leads to patients avoiding seeking medical attention, the study reports - particularly if the affected patients were current smokers. As one study participant explained:
"I think a lot of the COPDs who still smoke do harbor certain emotions that make it impossible to relax. They blame themselves and get angry with anyone who tries to influence their smoking. It gets on their nerves, because they know smoking is wrong. They kind of isolate themselves due to the feeling of being losers, because they think of themselves as having failed."
The study authors noticed a pattern of people with COPD prioritizing their dignity over their health, with patients withdrawing "into a kind of exile in everyday life."
They also suggest that, because of a feeling of being perceived as "morally weak," COPD patients may gravitate naturally to support from groups where this judgement will not be present, such as by socializing with smokers. However, in doing so, the COPD patients will be re-exposing themselves to what may have been the driving factor behind their condition - smoking.
The researchers map a potential feedback loop between general practitioners (GPs) and COPD patients regarding the issue of continued smoking.
They suggest that many GPs find smoking cessation support to be time-consuming and ineffective, underestimating "the chronic nature of tobacco addiction and the complexity involved in smoking cessation." This lack of understanding may be interpreted by the patient as social moralizing, which can lead to tension between health worker and patient, and resistance to cessation.
Health care providers may presume patients to be fully accepting of their condition, while the patient instead feels stigmatized. The study makes the case that health care professionals need to be able to examine their own values and support patients who may feel stigmatized.
New study identifies gap in research for COPD-asthma patients
Although Dr. Gershon - quoted in the opening of this feature - feels that COPD stigma has impacted negatively on research, there have been several good-quality COPD studies published recently.
In her own study - published in JAMA - Dr. Gershon's team examined administrative health records for 2,129 older adults who were only taking long-acting beta agonists for COPD and compared them with the records for 5,594 adults taking these drugs in conjunction with corticosteroids.
The researchers found that seniors taking both long-acting beta agonists and corticosteroids had 8% fewer deaths and hospitalizations during the period of study than those who were taking long-acting beta agonists alone. The team describes the 8% disparity as "modest but significant."
However, among patients who had both COPD and asthma, those taking the two medications had a 16% lower risk of hospitalization and death, compared with patients who only took long-acting beta agonists. More than a quarter of the study participants had both asthma and COPD.
Dr. Gershon says that, previously, doctors have not "really known how to treat these patients," as studies have generally excluded COPD patients who also have asthma. She told Medical News Today:
"I believe this was because the effectiveness of interventions in people with COPD would be known with more certainty, for instance, without having to wonder if an intervention was effective because it was treating another disease, like asthma, that was also present. While this approach has its merits, it means that many patients with both COPD and asthma were excluded. As a result, there is little evidence on which to base our treatment recommendations for these patients."