Yesterday I spent some time with the participants on the pain management programme talking about their experiences in the health care system. After reading a great wee self help pain management book written by David Hall which has a chapter on how to ‘manage’ being part of the health care system, I decided it might be a good idea to talk with the group about how to make the most of their relationships with health care providers.
I was surprised to find that many of them are saying the sort of things I thought had gone from health – things like being told ‘I don’t believe in chronic pain’, ‘there must be a cause for your pain and I’ll find it’, ‘it’s really in your head’ – along with the experiences that some had of having a clear plan for managing their pain, but being told that ‘I’m the doctor, I’ll decide what happens’. Well, really I suppose I shouldn’t have been surprised – it had taken most of the people about 4 years or so to reach the Pain Management Centre for comprehensive management of their pain.
I know that people’s recollections can be prone to error, and that people can misinterpret what is being said to them, especially when they’re in pain, but what these participants suggested was that in their journey to find out what their diagnosis was, and obtain effective management, they had found many health care providers still don’t really understand chronic pain.
The number one thing the participants wanted from any health care interaction was to be listened to. When I asked them what this looked like, or how they would know they had been listened to, they said things like ‘they look me in the eye’, ‘they ask more questions to clarify what I’ve said’, ‘they take their time and don’t rush’, ‘they don’t assume they know what I’m coming in for’. The over-riding thing was that the health care provider wanted to know who this person was apart from their health problem.
What they didn’t like? Being rushed, being told the same ‘prescriptive’ answers – lose weight, stop smoking, get more exercise (without finding out what is important to them!). They didn’t like health care providers using big words, or failing to write what was being discussed down. They didn’t like being referred to someone else who might only look at one aspect of their health – ‘the back’, ‘my gut’, ‘my thyroid’. They hated waiting three months for an appointment only to have 10 minutes with a doctor who hadn’t read their notes.
Participants were aware that they know more about their response to certain medications, procedures or situations than their health care provider. They may have gone through certain procedures 6, 7, or 8 times, and know what happens – but feel unheard when a health care provider over-rules and continues without taking the time to understand why the person wants something done in a certain way.
Sadly, some of the participants were so fed up with their interactions that they said they ‘switch off’, and although they may take someone else with them, they are really going along for the ride without questioning or understanding the rationale for certain procedures. And then they don’t follow up on those recommendations…and we may wonder why…
We talked about ways to make the most of their relationships with health care providers – after all, with any chronic health problem, they are going to be spending time within the health care system, and it’s their health they’re managing. This concept is called health literacy, and it’s important.
Health literacy is
– a complex group of reading, listening, analytical, and decision-making skills, and
– the ability to apply these skills to health situations (Health Navigator)
According to the Health Navigator site, the NZ Adult Literacy & Life Skills Survey 2006 found that:
- Low health literacy is “a stronger predictor of a person’s health than age, income, employment status, education level, and ethnicity.
- Low health literacy can contribute to negative psychological effects and is often “hidden” to maintain dignity
- Over 50% of NZ adults are likely to experience health literacy difficulties
If the participants in our pain management programme are anything to go by, at least one in 5 New Zealanders have difficulty reading, writing, asking questions and following health-related information. Maybe literacy generally is poor – but as health care providers we don’t always appreciate how many people have trouble understanding our jargon.
I found the ‘three questions’ approach (again on Health Navigator!) a really simple and natural way for participants to feel OK about asking questions and making the most out of a consultation. The ‘three questions’ are
- ‘What is my main problem?’
- ‘What do I need to do?’
- ‘Why is it important for me to do this?’
‘Ask me 3’ was developed by the National Patient Safety Foundation, and there are some great materials there for providers and patients. Worth a look and some serious thinking and doing.
Today, what about making sure your consultations answer these questions – perhaps write them down, and say them to the person you’re seeing as you write down what you’ve suggested they do?
I’ve added a reference to an article on training health providers (doctors actually) in communication below (Malhotra, Gregory, Darvill, Goble, Pryce-Roberts, Lundberg, Konradsen, & Hafstad, (2009) – points made in the article include:
The differences between how we behave in the classroom and how we are with real patients when unobserved have been highlighted; and we have attempted to explain why trainees sometimes modify their behavior in medical assessments with standardized patients for examinations as opposed to how we would perform on wards or in general practice. The teaching of communication skills will continue to develop over the forthcoming years.
For another reference, this time about the ‘patient’ side of communication, the paper by Dwamena, Mavis, Holmes-Rovner, Walsh and Loyson (2009), describes a training programme for patients, based on training given to health providers – maybe a thought we could all introduce into our pain management programmes? After all, people with chronic pain will be health users for a long time, and need to know how to make the most of what is available to them.
Overcoming pain: from pain sufferer to healthy, capable and in control
By David Hall, 2008, David Hall Training and Facilitating
Dwamena, F., Mavis, B., Holmes-Rovner, M., Walsh, K., & Loyson, A. (2009). Teaching medical interviewing to patients: The other side of the encounter Patient Education and Counseling DOI: 10.1016/j.pec.2009.07.026
Malhotra, A., Gregory, I., Darvill, E., Goble, E., Pryce-Roberts, A., Lundberg, K., Konradsen, S., & Hafstad, H. (2009). Mind the gap: Learners’ perspectives on what they learn in communication compared to how they and others behave in the real world☆☆☆ Patient Education and Counseling DOI: 10.1016/j.pec.2009.07.024