Ok, so I was wrong. I really liked the RACGP good GP television commercial. It had some flaws but I thought they were small in the grand scheme of things (see my last post). But many patient advocates did not agree and were unhappy about the lack of communication portrayed in the video.
Blogger Michelle Roger commented: “My current GP asks me what I want to do, what I think is most important and together we sort through the problem at hand and potential solutions. I feel valued and heard and trust her more knowing that she listens and knows me and my family.”
“That for me was missing in the video. It was one-sided and the patients appeared little more than props to be talked at. In fact the patients had no voice at all. A problem that still permeates a lot of medicine.”
Crockey health blog posted an article titled ‘The Good GP never stops learning: the RACGP video that made doctors cry – and patient advocates wince’. In a response to this article Irish blogger Marie Ennis-O’connor wrote on her blog: “We can’t just talk about a commitment to patient centred care – we have to live it. It is only by bridging the divide which places patient and doctor expertise on opposite sides that we can achieve more personalized and meaningful care of the patient.”
I wondered why the patient opinion was so different to mine. On Twitter it was suggested to me that more doctors should read patient blogs to understand their view better. I thought that was a good idea so I asked for some recommendations and started reading.
I can tell you, it didn’t cheer me up but it was enlightening. It felt a bit like a refresher course “do’s and dont’s for doctors”. What I read was that, in the eyes of patients:
- Doctors often don’t know how to deal with disabilities
- Doctors sometimes blame patients for treatment failures
- Some doctors find it hard to accept patients as experts
- Doctors don’t always communicate well.
Now that I’ve read the blog posts I feel that I can better appreciate the patient response to the RACGP video – and I learnt a lot more along the way.
I have been given permission to share parts of these blogs and I recommend anyone who works in healthcare to read on. It may help to bridge the divide. Doctors beware: don’t expect flattery.
Empathy towards disability
In one of her posts writer and speaker Carly Findlay tells the story of how doctors gave up on her and told her parents to prepare for her death, and how she later met one of these doctors.
(…) “Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears. I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).”
(…) “Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts.”
(…) “The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient.” (…) Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.”
Blogger Caf explains how doctors told her to see a psychiatrist when their attempts to treat her chronic pain failed.
“I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance. ‘There’s nothing wrong with your ankle. Why are you on crutches?’”
(…) “Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.”
Caf says that her experiences have affected her trust: “I’m not sure that I truly trust any doctors, despite having a lovely GP.”
Michelle also writes about pain in this post: “And there is a pervasive idea of the drug-seeker, seen in every patient who has chronic pain. That those who simply don’t get over pain and require ongoing pharmaceutical management are weak.”
“Friends who have used pain clinics tell stories of dismissal and blame. That they are not trying hard enough when they don’t recover, when I know the lengths they have gone to to try and alleviate their pain. And compassionate pain doctors who become the exception not the rule.”
The patient as expert
In another post she writes: “As a patient with an unusual, complex, and poorly understood disorder, 9 times out of 10 when I see a new doctor I am the expert in the room.”
(…) “I spend my spare time researching my disorders on Medline. I flip through Cochrane Reviews, and review consensus statements regularly. I read up on the drugs I’m taking and keep abreast of current research trials. On forums, I can ask questions of other patients.
“The constant fight to be heard is exhausting
(…) “Some doctors are quite happy to acknowledge that I may know more about my disorder than they do. For example, my GP is happy for me to take the lead on my treatment needs. Even my cardiologist is happy to discuss my disorder in more of a collegiate manner, than the traditional doctor-patient relationship.”
(…) “Yet there are many others who are nothing short of dismissive. Should I dare to suggest a potential treatment or line of investigation the appointment can become adversarial. At times what I say is outright ignored.”
“Case in point my recent hospital admission. Despite having a red allergy band on my arm, sharing the information from my Allergist, and speaking to both my neurosurgeon, anaesthetist and senior nurse about my allergy to adhesives, I awoke to welts and rashes across my body. My pre-op information met with eye rolls, a sense that I was over-anxious, and thus completely ignored.”
(…) “The constant fight to be heard is exhausting. We are told that we must be our own advocates. That the future is patient-centred medicine. That rapport and making a patient feel part of the decision-making model leads to more compliance and more successful outcomes.”
Michelle: “Patients no longer live in a bubble where they are reliant upon their doctors as the only source of information. With the advent of social media and the ease of access to medical journals, patients can be as up to date, and at times, in front of their doctors, with regard to advances within their various disorders. We come empowered and informed to our appointments and have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us.”
“We have an expectation that our doctors will be equally informed or at the least, willing to listen and work with us
“The medical community needs to be aware of the new ways information is being shared, especially the speed at which information can now travel. Instead of criticising patients for researching their ailments, they should instead be working with them, especially to direct them to more appropriate medically sound sources of information.”
“Patients are already distrustful of big pharma and the way research is funded. If their physicians also refuse to help them navigate these areas or are dismissive of their efforts, such distrust will also pass to them, to the detriment of both practitioner and patient.”
Doctors who listen
Carly: “I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet.”
“Their compassion means I am a human being first
“She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.”
“And she told this junior doctor how lucky they are to have me as their educator. What a compliment. I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.”