I don’t know what to ask
The most helpful of clinicians often ask the most innocent thing of all – “Do you have any questions?”. These are people who are genuinely trying to be inclusive, and they really want to do whatever they can to make things easier for people like me. I know that. I know they will do their best to answer my questions honestly and clearly and help me through this confusing maze.
So why does it throw me? Why do I panic when I am given this perfect opportunity to ask away?
Quite bluntly, it’s because I often just don’t know what to ask. I don’t know where to start. I don’t know what the issues are.
I don’t know what I don’t know.
Of course the perfect questions come flooding into my brain long after the opportunity has gone. Isn’t that always the way?
You’d think, wouldn’t you, that in my position I would be really prepared with lots of questions to ask. And I often am. I’ve done lots of research, and when my loved one’s treatment doesn’t seem to match any of the written guidelines (generally because things are just not that simple) – then I have tons of questions milling around in my head. But it’s amazing how my brain can go blank under stress. My IQ temporarily decreases by goodness knows how many points when I’ve just had to leave someone I love in the hospital ward, or I’ve had another emotional encounter of some sort. Dragging questions out of the recesses of my brain at that moment is impossible.
What can clinicians do to help?
Don’t stop offering to answer our questions! It’s wonderful to have that opportunity, and lots of people will grab it with open hands and run with it. But if we look stuck, can you please be pro-active and meet us half way? Give us some hints? Be more specific about issues it might be useful to talk about? For example, “Would you like to know more about … ?” (eg possible side effects of medication, dealing with emergencies, how the system works, where to find more information etc).
I have seen clinicians do this really well. I know a psychiatrist who would ask clients what they knew about their treatment. “Do you know how this medicine works? Do you know what the side effects are? Do you know how to use it? Has anyone told you about ….” He would be very specific, offering up questions that many people wouldn’t have thought to mention. And he offered space to talk in private. THAT is what I would call being pro-active.
If you see people like us struggling, could you put yourself in our shoes for a moment? If this was YOUR loved one, what would you want to know?
And if it doesn’t look like we can cope with more information then and there, could you offer something in writing that we can read later – a brochure, print out or maybe a website to look at? Or could you offer to answer questions at another time – by appointment, by phone or possibly by email? Can you suggest that we write our questions down as we think of them? (Some services give people a diary to write in, especially for this.)
11 August 2015 update: I am VERY pleased to share that the NEXUS Dual Diagnosis Service in Melbourne has just contributed a terrific list of questions that carers might like to ask. Click here to download them, and let us know what you think. How is that for empowerment?
On top of that, you can still use the resources I originally listed:
Check out the British Partners in Care site – it has some excellent checklists, including the checklist for parents of children with mental health problems. There are checklists for consumers, carers and clinicians – so looks at information sharing from all angles. Of course you aren’t limited to these questions – they are just a starting point.
There are excellent, clear publications on information sharing at the Office of the Chief Psychiatrist of Western Australia – look for the Carers guide to information sharing with mental health clinicians: communicating for better outcomes and also the version aimed at clinicians: Communicating with carers and families: information sharing for better outcomes. They talk about issues of confidentiality, as well as the sorts of information families need.
Please remember that laws on information sharing and confidentiality differ between countries and even states within Australia.
Written and illustrated by Helen Wilding, 2011.
Cite as: Wilding, H. (2011). I don’t know what to ask. The Caring Together Art Journal Project. Retrieved from https://caringtogetherproject.com/i-dont-know-what-i-dont-know/
Comments on “I don’t know what to ask”
It’s a pity there isn’t more information for rural areas….Great resource to have though, I’m always stuck for words when dealing with professionals, as a carer you think you should keep quiet and not question those in charge of treatment.
Comment received on “I don’t know what to ask” 14 August 2015
Thanks so much for sharing this excellent information, especially about the ‘blank’ moments, something I feel most people have experienced with much frustration.
Comment received on “I don’t know what to ask” 17 January 2011
information is how I feel
Comment received on “I don’t know what to ask” 28 January 2014