Tips on how to be heard in a hospital

What would I have done if they hadn’t listened?

Hi readers.

First off, hi new subscribers. I’m so honored you’re here and grateful for all your stories. Thanks for connecting.

The photo above is one of my favorites- me making July giggle. She was an early smiler- a true gift in a scary time.

So, as I shared, I wrote an article in the Huffington Post that went miraculously viral- in it I describe how I took action in the ICU to get my doctors to effectively communicate and organize my care.

You can go back in my archives and read my in-depth journey- starting here - but essentially after three visits to the ICU and three intubations, I woke from an induced coma.

I could see how much my doctors cared. But they seemed to contradict each other and not cohesive.

At that point I was half-dead, and I had no energy left for sugar-coating or insecurity. I told them how I felt repeatedly.

I said, “I don’t trust you all anymore.” Even telling one of them, “If I’m intubated again, I will blame you personally.”

And incidentally, I quite liked that doctor.

But I needed to be clear. It was life or death- I wasn’t getting better. In fact, I was getting worse.

And luckily they heard me- they put a text chain together and I began to improve.

BUT- I often think, what would I have done if they hadn’t listened? What more could family members do to advocate?

Besides voicing concerns to doctors, you can voice concerns to nurses. Try to stay reasonable aka don’t insult people or swear, so you avoid the “difficult” label, but nurses can take issues up the chain of command. A charge nurse can help transfer you to a new doctor or ask for another specialist to get involved.

Keep an eye on your MyChart and ask them to annotate all your concerns in writing there. If you don’t see it there, tell them. Also ask your family to keep notes about what’s happening. Maybe even make your own voice memos, essentially creating a record so you can show them you’re not going to forget you’re unhappy with how they’ve approached the situation.

If you’re hitting more roadblocks, you may need to get a patient advocate involved- they often know way more about the system and can help be another voice for you when you’re feeling stuck. Hospitals have them on staff, but there are outside organizations too.

Also no hospital wants to be sued. So if you’re still getting no movement and you’re not improving heath-wise, contact the hospital’s management office - you might need to ask for a transfer to a bigger hospital, especially if you feel like absolutely no one is listening to you.

But don’t give up.

I often say, there’s never been a better time to be a patient - technology and science have taken us to amazing places. And I do believe doctors care- however I see empathy fatigue a lot in fields like this. Or accountability fatigue - “I did what I’m supposed to do” la-la-la “anything else isn’t my job.”

We have to help them cut through that fatigue. Show them pictures on your phone of you well, your family, and tell them your life goals. Storytelling is powerful- so tell them your story.

Tell them you are counting on them.

Most doctors want to be heroes. They want to save you.

We sometimes must help them, so we can save ourselves.

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AMA- do you have questions for me? Feel free to drop them in the comments.

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I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.

Thank you to Roy Lenn and Richard Burwick for your founding level donation.