When I worked in cancer services as a post doc researcher, we conducted an NIHR Research for Patient Benefit project. The aim of the project was to develop a Consultation Support Tool for patients to use with their clinical team, when attending their oncology appointments.
We had no prior idea what the Consultation Support Tool (CST) would look like. The design and content of the tool would be based on the findings of our research.
If anyone is interested they can find a copy of the CST on my website: Improving healthcare consultations with consultation support tools – Healthcare Communication Matters
BUT before you go anywhere, please take note of this one key point:
I was reminded of this fact when talking to my friend about her father’s recent appointment with his oncologist. He has recently been diagnosed with an advanced renal (kidney) cancer.
My friend (a General Practitioner) and her father (a retired dentist) are highly intelligent people with healthcare backgrounds, yet were overwhelmed. They had no idea what to do.
The conversation with the oncologist was overwhelming. She gave him a list of treatment options and told them to go away and decide which option to take. When they asked for help, they were told it was up to them to decide. I was infuriated at this point and my advice was to seek a second opinion.
They were clearly overwhelmed and confused with the information given to them and non of the decisions were easy to make. Each treatment, had it’s own potential complications. When my friend asked the consultant, what she would tell her own father, she said nothing different to what I have told you. Your dad needs to decide.
When they said you know you have got cancer, you can have chemo if you want it, it is your decision. It was really hard to decide. I asked, what would you do? and they said well we can’t tell you that, you have to make the decision for yourself. It was really hard.
You are just made to feel part of it and I am the biggest part of it aren’t I? I’m allowed to put my own point of view in, it’s digested and then a response comes back. I am having a conversation with someone. I have not experienced that before and I trust him.
These quotes highlight the difference between feeling abandoned in decision-making and feeling supported and involved.
True patient-centredness is about finding out what sort of role the patient wants to take in regard to making decisions and responding to them as an individual.
In the case of my friend and her dad, what is already a traumatic time for them, was exacerbated unnecessarily and trust in the oncologist has not been formed.
Let us strive to ensure our patients feel supported, understood and truly at the centre of their care.
Final comment
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