That's an interesting one to consider?? .
Actually, not something for me. If you've ever been near healthcare systems, you *know* they are buggy. So any just 'trust the system'- that's like a perfect red flag. I know some patients want really hard to 'just trust'- and then complain bitterly if outcomes are not what they hoped for, independently of whether those hopes ever were realistic or not. And those fabulous doctors then quickly fall from grace....
Of course, everyone is free to deal with their disease as they see fit- I'm a big fan of 'trust is good, control is better'- but something that made a huge difference to us back then was honesty. I will always remember that appointment where we showed up with our two little daughters as we hadn't managed to sort out childcare at that short notice. The medical team were our age- and they stared at those two little girls with an expression I'll never forget. We all knew he wouldn't live- and we all knew the others knew that, too. No one said anything really to that affect- but afterwards, things were somehow different and easier.
I think one of my big personal learnings from my husband's stage 4 Melanoma diagnosis out off nowhere and before we had efficient drugs was that medical school- including the evidence-based-medicine-brain-wash- gives you this false sense of 'there is a disease and there's a proven recipe how to deal with it'. In such a situation, you as a patient suddenly find yourself with a surprising degree of freedom with regards to your treatment, not to mention the responsibility that comes with it- and you suddenly realise how much depends on you personally, on your willingness to accept risk, your desire to live. You could just resign and die. You could join a clinical trial- but which one? In which order? How do you stay on it (though they want to kick you off)? When do you leave it (though they try to keep you on)? When do you decide to stop?
And looking back, what mattered most was- honesty. People admitting they didn't know. People who didn't try to pretend 'all would be fine'. People admitting their system had messed up. People sharing their opinions and accepting we didn't share them.
So for me, what made a difference? It was the people who allowed us to rely on our own judgement and priorities not those who expected blind trust.
Are you a patient already providing input to our #EUonQoL project? Then consider sharing your thoughts on how we can improve the #QualityofLife for cancer patients across Europe! ???
Read what others are saying. ?? https://lnkd.in/d5crSnJa
Interested? Contact us at [email protected]
Principal Optical Design Engineer at Edmund Optics
4 周What a great business line to work in. #feelproud