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Interestingly, although this question about "unacceptable condition" is the key Q, I cannot just ask this Q, because this is about negative things.
Nobody wants to talk/think about negative things.
1/ https://twitter.com/JonathanYehMD/status/1265756467354877952
Nobody wants to talk/think about negative things.
1/ https://twitter.com/JonathanYehMD/status/1265756467354877952
Before talking about negative things, I have to talk A LOT about positive things.
"What are you hoping to do after you get better with LVAD?"
"What makes your life meaningful?"
Patients can answer these Qs easily.
Conversation is smooth.
2/
"What are you hoping to do after you get better with LVAD?"
"What makes your life meaningful?"
Patients can answer these Qs easily.
Conversation is smooth.
2/
Then I change the tone of the conversation.
I give a warning shot
"Is that OK if we talk about risks or complications of LVAD?"
I quickly describe infection, device thrombosis (and stroke), and bleeding.
I describe those carefully, because I don't want to scare them.
3/
I give a warning shot
"Is that OK if we talk about risks or complications of LVAD?"
I quickly describe infection, device thrombosis (and stroke), and bleeding.
I describe those carefully, because I don't want to scare them.
3/
The detailed statistics about complications is not needed here, because the point is to convey the patient and family that LVAD could change their QOL in the bad way too.
They start to get nervous. I get nervous too.
4/
They start to get nervous. I get nervous too.
4/
Then ask this key Q.
"Let me ask you a Q which I ask all of my patients before LVAD. Is there any condition which you would find unacceptable?"
Very often, patients will just stare at me, because they don't understand the point of Q.
Quickly follow w, "Let me explain"
5/
"Let me ask you a Q which I ask all of my patients before LVAD. Is there any condition which you would find unacceptable?"
Very often, patients will just stare at me, because they don't understand the point of Q.
Quickly follow w, "Let me explain"
5/
I give examples.
"Some people say 'If I have to live with feeding tube for the rest of life, I would not want to live like that'".
"Other people say 'If I become bed bound, .......', or 'If I lose cognition and cannot talk to family, ...'".
6/
"Some people say 'If I have to live with feeding tube for the rest of life, I would not want to live like that'".
"Other people say 'If I become bed bound, .......', or 'If I lose cognition and cannot talk to family, ...'".
6/
With these examples, they understand the point of Q.
And I will ask again,
"Is there any condition which you would find unacceptable?"
80% of patients says something like,
"I would not want to live like a vegetable/ go to a nursing home/ become a burden, etc"
7/
And I will ask again,
"Is there any condition which you would find unacceptable?"
80% of patients says something like,
"I would not want to live like a vegetable/ go to a nursing home/ become a burden, etc"
7/
Some patients say clearly
"There is no such thing", which is ok.
The key is whether or not you can say something clearly, rather than the specific condition you articulate.
8/
"There is no such thing", which is ok.
The key is whether or not you can say something clearly, rather than the specific condition you articulate.
8/
20% of patients cannot.
"Never thought about it"
"I don't want to think about negatives" etc.
Some patients still don't understand the point of Q, which is ok.
I tried to ask in a few different ways, but bcz I'm nervous, I also don't want to keep asking this. So I stop.
9/
"Never thought about it"
"I don't want to think about negatives" etc.
Some patients still don't understand the point of Q, which is ok.
I tried to ask in a few different ways, but bcz I'm nervous, I also don't want to keep asking this. So I stop.
9/
At the end, I describe the option of withdrawal.
"LVAD is life support, so you always have an option to turn it off, if YOU think LVAD is not helping you in any way".
Most patients are not aware of it.
10/
"LVAD is life support, so you always have an option to turn it off, if YOU think LVAD is not helping you in any way".
Most patients are not aware of it.
10/
This is a very difficult conversation.
Sometimes I have to do this 1-2 days before the surgery.
So I try to finish with positive notes.
"We talked about these things, but we will do everything we can. Your surgeon is a genius. You are the best place in the world now".
11/
Sometimes I have to do this 1-2 days before the surgery.
So I try to finish with positive notes.
"We talked about these things, but we will do everything we can. Your surgeon is a genius. You are the best place in the world now".
11/
I am very nervous to let them think about negatives right before the surgery.
But, surprisingly, I have found that most of the patients and family (not all of them) are VERY grateful for having this conversation.
It is very fortunate that our team can do this.
12/12
But, surprisingly, I have found that most of the patients and family (not all of them) are VERY grateful for having this conversation.
It is very fortunate that our team can do this.
12/12
