Written by James Coker | Senior Editorial Assistant, European Medical Journal | @EMJJamesCoker
Several healthcare professionals at the European Respiratory Society (ERS) International Congress 2017 expressed concerns with patient-doctor communication, which included patients not being honest with their doctors. This can lead to potentially deadly problems, such as patients not taking their medications correctly; therefore, improvements in patient-doctor interactions are urgently required.
The COPD MIRROR study, which looked at the differences in perception between patients and doctors with regard to chronic obstructive pulmonary disease (COPD), demonstrated the extent of this issue. At a Menarini-organised (Firenze, Italy) press conference at the ERS Congress, Prof Bartolome Celli, Harvard Medical School, Boston, Massachusetts, USA, discussed the study’s results. Questionnaires completed by COPD patients, general practitioners (GP), and pulmonologists revealed important differences between patients’ and doctors’ opinions on the most debilitating symptoms and what had the greatest impact on quality of life. This potentially impacted the type of treatment received.
In one such questionnaire, the COPD patients disclosed how frank and open they were with their doctor. The results were quite shocking, with the 89% of the patients revealing they are not typically frank and open with their doctor, tending to hide something, omit information, or even lie.
“We underestimate how much they are not telling us the truth of how they are,” explained Prof Celli. “For example, we do know that we invite prescriptions every time a patient comes to our clinic, every 3 months, every 2 months; ‘How are you doing?’ ‘I’m better doctor’ usually. They want to please the doctor, and you feel like a good doctor, so they tell you ‘I’m feeling better’. ‘You’re taking your medications?’ ‘Yes, I’m taking my medications’. And then I sit down at the groups where the industry gurus present data and they say this is the number of prescriptions filled by patients with COPD; it’s like 15%, 10% are filled, the rest are not filled, so indirectly I know this is happening, but in all honesty the magnitude of the gap is really impressive. There is a problem between what patients will tell the doctors and what doctors think the patients are telling them in relation to their disease.”
He added: “There is a tremendous gap between what we are told by the patient and what the patient would have to tell us when we have our interactions. And I think this is very important because unless we have good interactions with our patients it is very hard to affect their outcome.” Prof Celli stated his desire for doctors, particularly the younger generation, to be helped to learn the art of speaking with patients. “We know a lot about biology, proteomics, genomics, the secret in the genes. Well, there is one area I think we are not advancing: humanomics, the essence of being human.”
The problem of patient interactions is well understood by Dr Will Carroll, Consultant Paediatrician, University Hospital of the North Midlands, Stoke-on-Trent, UK, an asthma specialist, who has a keen interest in trying to get patients to always take their medication. The results of the British Lung Foundation Asthma Implementation Project, presented by Dr Carroll at the ERS congress, showed that although patients were reporting feeling better, they were often either not taking their medications properly or not taking them at all.
“I’m interested in getting patients to take medicines because I think that’s what makes them better, but what we saw here was very significantly, once the patient started to feel better, they did exactly what we don’t want them to do, which is stop taking the treatments, as far as we can tell, because the amount of treatments picked up by patients reduce,” said Dr Carroll. “Nonetheless, patients report feeling better and there are many possible explanations for that. It may be that patients do genuinely feel better and can get away with using a lot less medicine once they are educated about their condition and the optimist in you would like to think that’s what’s going on.”
However, Dr Carroll went on to explain that he, like Prof Celli, believed the real reason behind some cases of lack of patient honesty is patients trying to spare their doctor’s feelings. “Myself and Paul Brand coined a phrase called reverse-placebo, and that is where the patient tells you what they think you want to hear as a doctor or as a nurse. So, if they like you and you’re looking after their asthma they say: ‘I’m doing really well now doctor, I’m fantastic, I don’t have any trouble at night and I can do exercise and run around and I’m absolutely brilliant, thank you very much’, and they persuade you perhaps that they are doing much better than they are.”
He continued: “I’m fascinated by the idea of a reverse-placebo and I reflect on it a lot because I look after teenagers with difficult asthma, and I know that a lot of them who begin to like me, begin to tell me things that they think I want to hear as a doctor which is actually quite difficult because they’ll tell you that they are better; that isn’t really helping them, but they do make me feel really good about myself. I think that it’s a real issue and we’re conning ourselves as doctors if we think that every patient comes to us and tells us the truth.”
This problem raises the question of how patients can be persuaded to speak more openly and frankly with their doctor in the future. Improving the way doctors communicate with their patients is likely to be of paramount importance to this end.
Dr Carroll and EMJ Respiratory Editorial Board member Dr Dermot Ryan, Honorary Clinical Research Fellow, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK, shared their ideas on how doctors can more clearly explain to their patients the seriousness of their condition and the importance of taking their prescribed medication, in separate interviews with the EMJ at the ERS Congress. They believe that getting the messages across in clear, easily digestible chunks is the key to persuading patients that it is in their best interest to be honest and to do what their doctor is telling them to do.
“To get a message beyond the first 2–3 minutes and then to expect someone to continue to watch a video cast or blog or anything is extremely difficult,” mused Dr Carroll. “The attention span of human beings is not long, 90 seconds maybe. I spend a good part of my career teaching and I spent a lot of the last few years of my career writing books to help people to learn paediatrics and writing educational resources and we’ve hit on 3 minutes as the magic number.”
Adapting the message given to different patients, according to their priorities in life and the knowledge they have, was something also emphasised by Dr Carroll: “I think that’s true for patients as well, but getting the right 3 minutes given in small enough quantities that are still meaningful is actually extremely challenging because it’s a different 3 minutes with every single person with asthma. They need a different 3 minutes of education. Yes, you can do it but you’ve got to work out what they know and what they don’t know. And persuading them when they’ve gone through four or five videos that aren’t pertinent to them that it’s a good thing to keep watching is incredibly difficult and very challenging.”
He continued: “I think that the right message with the individual patient will be a single message, nearly always, because there’s always some form of words that can get through to them and identify this is what we need to do now. It might change over the course of their life so what the right message is for a 7-year-old might not be the right message for them again at 11. And we see that as them going off the rails when they get to their teenage years when they’re 13 or 14 but actually what we need to do is we need to shift the focus and change the message and we need to continually re-evaluate this as paediatricians. For adults, I guess it’s the same; although I don’t work with adults, I know the priorities I had in my 20s aren’t the same as in my 40s, and I’m sure they’ll be different again when I’m in my 60s. I can feel that change myself over time and so the messages I need to hear will be specific to me and also specific to my time of life.”
Dr Ryan offered similar sentiments. “I think doctors too readily blame patients for not complying, for not using their medicine properly, for not monitoring their disease properly, but in fact the fault lies with the doctors; we don’t tell them the reasons, or the benefits of complying with their medication,” he pondered. “It’s not difficult. You can get the message across in maybe three 10 minute sessions. You can’t do it all at once because the patient can’t take it all on board at once.”
As a former GP, Dr Ryan emphasised the need for continuity between the patient and their doctor to help this sort of communication, and therefore to avoid the involvement of other healthcare professionals where possible. “Giving it to another healthcare professional for you isn’t always the right thing to do because some patients think that ‘Well the doctor doesn’t care about me, why’s someone else talking about this, so why should I bother? The doctor doesn’t care about me enough to do it himself or herself, so why should I listen to somebody else? I’ve got to come back another day, and that’s just another imposition on me and my life’, so I think as a professional we could and should do an awful lot more to communicate directly with our patients,” he stated.
Another issue linked to this that may explain why patients often do not take the medications they are prescribed is a lack of understanding on the part of doctors of patients’ biggest concerns. Drawing on the COPD MIRROR study, Prof Celli explained that while the symptoms doctors perceived as the most vital to manage were generally clinical in nature, such as coughing and wheezing, patients placed a higher priority on quality of life issues. “We concentrate on the organic, they concentrate on the life,” he said. “We think for them, what is important is their medical conditions, for them perhaps much more important is what I do with my time, how happy I am relating with other people, and for us we do not appreciate as much those kinds of domains.”
Dr Carroll sadly experienced one of his asthma patients dying due to not taking his prescribed medication, and this case has driven his passion for improving patient adherence.
“I had a patient, and, whatever I said, I couldn’t get him to take his medicine, and very sadly, he died, very suddenly, very unexpectedly… and I guess I carry that around with me, and since then I’ve done all I can to try to look at areas where we can improve adherence actions to see if we can get the patient to take the medicine in any way possible.”
Getting the doctor-patient relationship right and more open communication between the two, is all important to ensuring better outcomes for patients and preventing deaths.
