donderdag 6 november 2014

Artsen, doe geen aannames!

Precies een week geleden mocht ik een presentatie houden op het ELAHC,  European Listening and Healthcare Conference, in het RadboudUMC in Nijmegen. Het was het eerste europese congres over luisteren in de gezondheidszorg. Ik sprak er over het doen van aannames. En waarom die in mijn ogen altijd gevaarlijk zijn.

Voor degenen die er niet bij waren; je hebt iets gemist! Het was een prachtig evenement.

Hieronder de speech zoals ik hem had uitgeschreven (en natuurlijk niet had voorgelezen). In het engels, omdat er bijna tien nationaliteiten vertegenwoordigd waren.

What struck me most the last three years, is how two people, a doctor and his or her patient can sit in front of each other, talk to each other, but never get on the same level with each other. Never really listen to each other, because of words not spoken. And to words not spoken, you can't listen.

During my career as a breast cancer patient I’ve experienced some real bad-listening. I have been called by wrong names, have almost had dangerous, unnecessary treatments and have missed some vital information, which I needed for my health.

But I’ve also learned that making assumptions is one of the worst things you can do as a doctor.

There is one example I would like to share with you, which makes clear how a misunderstanding can occur.

I’ve had several operations. Of which a radical mastectomy. But something had gone wrong. The wound on my chest would not heal, because of the radiation treatments I’ve had. My blood circulation was not good enough for my body to heal this wound on its own. This meant I had a huge risk for dangerous infections and I could not wear prostheses.

So I got this complementary treatment. A hyperbaric oxygen treatment.
This treatment should make the wound close up. And it seemed to work. The wound was getting smaller and smaller.

During this nine weeks treatment, I saw two doctors. One was my plastic surgeon; let’s call him doctor Plastic, who treated me for two years already. And the other one was the doctor from the Hyperbaric Oxygen treatment, let’s call him doctor Hyper.

Once upon a day I had an appointment with both of them. At first I went to Doctor Plastic. He examined my wound and saw it was healing. “But”, he said, “This wound still needs surgery, to close up properly.” You can imagine that’s not what I wanted to hear. I almost died from an infection after my latest operation. So I asked him if it was really necessary. “Yes” doctor Plastic said, it’s necessary for the wound to close up properly.

I have high regards of my doctor Plastic, so I was disappointed, but I trusted this was for the best.

Only one hour later, and one door further, my doctors were actually neighbors, I had an appointment with Doctor Hyper. As I told him about the surgery Doctor Plastic had in mind, he almost fell of his chair. He was flabbergasted and told me that he thought this wound would close up in a couple of weeks. And there would be no need to operate at all.

Now I was really startled. I did not know what to do anymore or who to believe. Because I knew both my doctors were great skilled and had the best in mind for me. I went home staggered and shocked.

I decided to make a new appointment with doctor Plastic. To ask him, why he thought this surgery was really necessary.
Again I asked him if I really really needed this operation. And again he said; Yes, because this wound will not close up properly soon. It will take at least two months for it to close up and will not look nice after that.

At that moment, I understood. This wound would not close up pretty. But I didn't need it to be pretty. Doctor Plastic wanted to make me look as pretty as possible.  Of course he did, it’s his job! And he assumed it was what I wanted also. But it wasn’t!

I only wanted it to close up, so I would stay alive and could wear prosthesis. And go out again without people staring at me. Being just a person and not an obvious cancer patient.

So I asked him another question. What if I don't have this operation? The wound will close up eventually he told me. But there will still be some ugly scars on your chest.

Obviously his view on being well, or wellbeing, was another view than mine. I never had the operation, the wound closed up very ugly, doctor Plastic was right about that. But I can still enjoy my three kids, my husband, my life.

I learned that day, that asking the right questions as a patient, can be lifesaving, or at least spare you unnecessary treatment. And I would like to ask all the doctors here today, to not make assumptions. Not even a little one, or an obvious one. Not everyone wants to be pretty! Some of us just want to stay alive!

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