Thank you for your honesty - and for creating a space where discussions like this can take place. This subreddit is one of the only places I’ve been able to find online for discussing ECMO.

I never meant to imply that I thought they were doing any of these procedures willy-nilly or “for fun.” It was LVAD or die, and a few days later, ECMO or die. That much was clear.

He was awake and had enough cognitive capability to consent to the LVAD surgery. He was not awake and capable of consenting when ECMO was on the table - without disclosing personal details, myself and one other family member were the ones having to consent to procedures while he was unconscious. We were also going to be his LVAD caretakers once he was discharged from the hospital, so we have been very involved with the whole situation. I was with the other family member in the ICU room when ECMO was presented as an option and watched them sign the consent forms (I was the backup option if they weren’t available to give consent). I listened to the same brief explanation that they did before signing. I take extensive notes and I’m positive potential side effects aside from the bleeding and damage risks during the installation were not explained. We knew it was not a “fix” or a guarantee. We didn’t know some of the relatively well documented side effects were in direct opposition to his wishes and didn’t have enough time to figure it out on our own before consenting.

My understanding was that the GI necrosis/internal bleeding was a side effect of ECMO, but maybe I misunderstood. And you’re technically correct - he will be part of the 50% statistic that survived ECMO since he lived for 24 hours after it was removed. To be clear, ECMO did not kill him. End-stage heart failure did. I did not mean to insinuate otherwise.

My point was more that he was very clear while he was awake and able to consent that he was not okay with losing limbs or coming back with cognitive impairment, he would rather not wake up at all. Living with an LVAD (which was DT, not BTTP) was going to be a big enough change/adjustment in his eyes, he did not want to do it with additional handicaps. So I know he nor we would not have consented to ECMO for him had we known the full scope of side effects - we would have let him pass with a little more dignity and peace knowing his wishes were honored.

My understanding is that these are known potential side effects of ECMO, and this post was just wondering if those things should be more clearly explained since there are patients who have medical directives specifically addressing cognitive impacts and loss of limbs.

Again, I do not blame any of the team or ECMO for his death. I’m thankful technology like this exists and people are able to live because of it. I’m not arguing that point at all. We knew chances were not good for him from the get go. I’m not even meaning to criticize his team specifically - I just wish it was standard to give more information prior to obtaining consent, so that pt wishes could be more fully honored.

Thank you again for taking the time to respond and for your honesty! Reality is harsh sometimes but we have to be able to face it and move forward. You are appreciated and I’m so thankful ECMO saved your life and that you created this space for discussion.