Clinicians showing vulnerability and learning from patients is so refreshing. This is my recent experience which I wanted to share as I hope it will allow patients to understand clinicians but also hope that any clinicians reading this will understand what is important to us as patients.
My involvement in the Severe Heterogenous Asthma Research collaboration- Patient centred (SHARP) has really let me understand more about how clinicians think when treating someone with a long term condition mainly severe asthma compared to how we as patients think. What impresses me most is the honesty of some clinicians who really listen to what we as patients say and sit back and reflect on their own practice often explaining how they would think when treating a patient.
We have been able to have some fantastic conversations about what is considered important. My assumption (and it is only and assumption) when is comes to lung conditions a measure of a patient getting better is an improvement in lung function or a reduction in FeNo or other biomarkers. Everything is a measurement. A exact number that says something……
…..but what it doesn’t say is how us as the patient actually feels, how our lives are day to day, are we getting a quality of life?
For me often to achieve a higher lung function it requires higher doses of medication which in turn means there is often a higher tablet burden and also the side effects ramp up. A higher lung function is awesome but I find this often leads to instability because once you get that higher lung function or an improvement in another measurement the team look to reduce medication. As patients we strive for lower amounts of medication but we want a life too.
I know myself and others who I have spoken to don’t really care about what our lung function is or what our biomarkers are (unless they are to do with hitting criteria for biologic treatment) because sometimes they don’t reflect how we actually feel, or reflect our ability to live.
There have been so many instances when I have been to clinic and my lung function may have improved a bit. My consultant seems pleased with this and potentially thinks his job is done so to speak but what he doesn’t realise is that it is not. Yes on that day my lung function might be better but tomorrow it might be lower. As patients we want to live.
What does it mean to live?
To me living means being able to know where I am from day to day. It is tricky to convey to people who don’t have severe asthma that each day you don’t really know how it is going to be until you wake up and attempt to get going. You may go to bed feeling awful and have an awful night but actually wake up feeling not too bad breathing wise (although feeling absolutely exhausted due to lack of sleep but at least breathing is good) or vice versa.
My wish list for being able to live is:
- Stability- know how I will be day to day
- To feel content in what I am doing
- Able to carry out tasks such as showering without having to sit down and take a breath
- Hold down a job without fear for my life
- Being able to enjoy time with my friends without the worry of something triggering my asthma
But to be able to do this I would quite happily do anything. I would take any medication in the world if I knew that it would keep me stable. Just now prednisilone does a wonderful job but because of its toxic side effects as soon as you feel well it is reduced and you are back to square one.
I am not criticising clinicians and their work. I am highlighting how they are taught to think and add suggestions as to how to improve your practice. As a nurse I was very much taught to look at numbers as well but there was also some emphasis on quality of life but not a huge amount.
It was lovely during my conversations in SHARP to hear people reflect on their practice and say how they were going to try to change their thinking from looking at the numbers but to also focus on how the patient feels as well.
I maintain that understanding your patient helps your patient to have a trusting relationship with you and be honest about how they feel and what they want to achieve. We all have goals in life which are sometimes unrealistic but discussing realistic goals and ways of managing treatment to achieve them is so important as it might mean that some of the numbers that clinicians rely on might not be as good as they could be but what is better having a patient who feels happy and content with numbers that could be improved or having a discontent patient who has good numbers.
The doctor patient relationship is changing. Before we used to put Dr’s on pedestals. Whatever they said we would agree with even if it was not something that we ourselves wanted to do. However the relationship is changing. Patients are an equal partner and decision making surrounding patient treatment is generally shared between both the Dr and the patient.
I hope this post has helped sow a seed that will help both patients and clinicians to see where each other are coming from and how you can do something to really get the most out of your relationship. Wether you are the patient you can say to the clinician that you understand that they see the numbers and they look good but it does not reflect on how you feel or if you are the clinical you can ask you patient how they feel and what they want out of their treatments, life etc.
My aim in life is to get back to do things like this….
Play golf or coach sport
But not end up like this as a result….