What you learn when the tables are turned.
By Eric Martin
Doctors, just like many other professionals who undergo years of training, tend to take their gained knowledge for granted.
So, when their patient’s eyes start slowly glazing over as the list of prescriptions and associated instructions inevitably roll forth at the end of the consultation, it can be hard to gauge just how effectively the essential facts were absorbed.
Patients can be distracted by the pain or stress associated with their condition and trying to remember instructions couched in language they may struggle to comprehend.
Given the importance of this pain point for patients, Medical Forum spoke with Dr Ahmed Kazmi, dermatologist by day and stand-up comic by night, and Tania Harris from the WA Health Consumers’ Council, to get some insights into this communication conundrum on the doctor-patient relationship.
Ahmed was recently a patient with kidney stones and found the experience so enlightening that he has used it as the basis for his upcoming comedy show at Fringe Festival this month.
Ms Harris helped Dr Sarah Doyle with her research project ‘What the Doctor Said,’ which explores the communication experiences of patients discharged from an emergency department with opiates, and is linked to a website platform.
Ms Harris said that whenever the HCC talked to consumers about health, one thing that emerged was that people felt they were entering into a very siloed system and that there was an urgent need for better communication.
Ahmed said that from his experience, everyone involved was as effective at communicating the diagnosis and treatment options as he had expected, though he did notice a slight difference depending on whether the treatment team knew he was a fellow practitioner.
No clear instructions
For example, despite the serious potential for harm caused by opiates, the data gathered for ‘What the doctor said’ revealed that people were often being discharged from Perth EDs without any clear instructions.
“Sometimes we heard of people having taken medication and then leaving by themselves, somehow finding their way home in situations that were really quite dangerous – like crossing super busy streets – because they just didn’t know what was happening,” Ms Harris said.
“We also heard of a few cases of medication being given to people with an intellectual disability, but then that information was not shared with their carers. People noted that, overall, there was a lack of sharing; of not including other people that were vital for supporting patients in those decisions; or even including them in the knowledge that this was what that person had been prescribed or given while in ED.
“Yet opioids can have a terrible impact on people, especially if given without any real instructions or understanding of how dangerous they can be, or how often they should be taken. People just wanted information and they wanted it to be clear and relevant to their situation. You might get told something at discharge, but not necessarily remember it.”
Given the pain associated with his diagnosis, Ahmed was also prescribed opiates, though from his informed viewpoint, it was more a journey of confirmation than discovery.
“They made everything better. One second, I was writhing in pain, the next I felt like Aladdin on a flying carpet showing Jasmin the sights,” he said.
“I had a life moment – a moment of pride and insight. I thought ‘wow these things really work’ – everything I trained for, everything I learned, everything I tell patients – it’s real. Then I started retching from the opioids and was given an antiemetic – my nausea stopped almost instantly and, again, I was like ‘wow, magic, Mashallah!’”
Ahmed said that from his experience, everyone involved was as effective at communicating the diagnosis and treatment options as he had expected, though he did notice a slight difference depending on whether the treatment team knew he was a fellow practitioner.
Always a doctor
“It is a tough job and time is often a precious commodity and sometimes the volume can cause empathy fatigue, so I give people some grace, but everyone was fine. There was one young urology registrar I hope will find some time to practise softening his communication skills. I said I was worried of the long-term impact on my kidney function from having had hydronephrosis for six weeks and he informed me you can cut a dog’s ureters and it’s fine for six weeks. I think he thought this would reassure me. It didn’t. I then felt bad for myself…and the dog,” Ahmed said.
“I deliberately didn’t mention my background at the ED check-in because I didn’t want anyone to think I was using it to jump the queue. For the more elective things I went with colleagues who knew me and who I had collaborated with professionally and who I trusted, though I still made sure it was done the proper way – with referrals.
“However, sometimes I had to announce my qualifications and contribute to the diagnostic or treatment process. Everyone does their best but sometimes things get missed or fall short of what you would like.
“It was uncomfortable for me at first, but I did get more assertive and used being a doctor to help me get the care I needed more easily when it wasn’t happening. I found it just made people listen harder – there are lots of ways for self-advocacy and for me this was one of them.”
One of the things that surprised Ahmed the most about his experience as a hospital patient was how hard he found it to fully relinquish control to someone else.
“I was actually quite happy to be led by the doctors and nurses looking after me, as in some ways it was a relief, but it’s hard to switch off. You can’t silence the constant commentary in your mind: ‘I hope they get the canula in the first time’, ‘I hope they don’t forget to write up an antiemetic,’ ‘I bet the consultant is off site and won’t see me until the morning’.
“It’s like seeing a film where the audio and the subtitles are on at the same time and you end up reading while you are listening” he said.
“The worst part for me was the general anaesthetic, I wept before I had it. ‘How can I have autonomy of my body if I am unconscious?’ ‘What will happen if I don’t wake up?’ I don’t know if that is ‘doctor think’ though, or just specific to me.”
What about alternatives?
Ms Harris said this feeling was a common experience reported by patients, exacerbated by a lack of insight and an ignorance of alternatives that could potentially meet their needs.
“It was clear that people don’t like medication, with little understanding about opioids,” she said. “It made me wonder whether there’s enough conversations happening with consumers about what opioids are, how they work, and what else you could do if you didn’t want to take one?
“People can’t ask for an alternative if they don’t even know what it does in the first place.”
“The other aspect is that people can go online and Google nearly anything, which can be good if they’re getting high-quality information from trusted sources, but it’s one thing to search for ‘what is this pain in my left toe’ and another to know, ‘what should I actually be looking for?’
“The best thing about the ‘What the Doctor Said’ platform was that it was personalised to that person’s condition and what they had been prescribed. They didn’t have to read through volumes of information that wasn’t relevant to them – which often just becomes a huge overload.”
Ms Harris said that during the pandemic, most people wanted official information from government sources and in normal times, GPs performed the same crucial role – as trusted providers who could help guide patients through their current situation with clarity.
“People often reported that their GP should be included more effectively in the communication process, and this was particularly true for people with a chronic health condition – especially one which was already being managed by their GP,” Ms Harris said.
“Yet when they went to hospital, their GP was not getting the most relevant information updated in time for their next appointment. At the end of the day, it was often the patients who were supposed to remember what the specialist or registrar said and take notes.”
Ahmed said half the joy of a consult was the doctor was supposed to be the advocate in your corner, someone to witness your pain or fear or sadness and someone to facilitate your decisions.
Try being a patient
His key piece of advice for other health professionals was to “give being a patient a go.”
“It has totally transformed me as a doctor. I have so much more empathy for patients, and I have tested so many things I had prescribed or seen, now I know what it feels like from the other end,” he said.
“It’s scary being moved around on a hospital gurney, the immodesty of a hospital gown, the odd sensation of compression hosiery.”
Ahmed said doctors often found it easy to defer seeking proper review for their own health but were somehow still surprised when patients acted the same way.
“One study from the UK found that only a fifth of doctors were registered with a GP compared to 90% of the general population, and while changes in legislation and indemnity have meant that doctors do a lot less self-prescribing and self-diagnosis now, simply going without care and the notorious ‘colleague corridor consult’ are still very much a part of doctor culture,” he said.
“Yet one of the tips I give my colleagues is ‘take the advice you would give a patient.’ I think it’s imperative we do – healthy doctors are needed first if we are to have healthy patients – and being on the other side of the stethoscope occasionally will only improve your ability to communicate with your own patients.”
Ms Harris said that even though the relationship that people have with their GPs had changed over the years for a variety of different reasons, consumers still saw it as vital.
“Consumers really see and value the relationship they have with the GP, which can often go on for years, throughout their whole lives and through all the ups and downs – they’re such an important part of the support process,” she said.
“We did a workshop with consumers in Kalgoorlie, and they reported that the best consultations were the co-operative appointments; patients really appreciated being able to visit their GP and then have the GP ring the specialist at the hospital so that they could review the information together.
“If there was any kind of physical examination that needed to happen, the GP could perform that under the specialist’s guidance, and the specialist could tell the patient and the doctor why. People didn’t have to travel to Perth and wait for a half hour appointment, and most importantly, they got to hear the relevant explanation and they got to ask questions.”
For more details go to www.whatthedoctorsaid.com
To book Ahmed’s show go to www.fringeworld.com.au