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Questions to ask the ICU team and yourself gathered from other ICU families, physicians, and nurses

Questions to ask the ICU team

Listening and answering / communication
Could we schedule a time today to sit down somewhere quiet and talk?
Could I ask a couple of quick questions now—and then later when you have more time, could we speak for longer?
Who are the different people and teams taking care of my loved one?
My loved one’s case seems complicated, so could we touch base at some point each day so that we stay on the same page?

Feeling stressed out or worried
I am having a hard time with this situation.  Is there someone I could talk to about my stress and worry? We have people to help.  Just tell your nurse and she/he will take care of this.
How do other people manage their stress, worry, and sadness in situations like this?

Faith / religion / spirituality
Would you like to talk to a chaplain or a spiritual leader?  If so, we can arrange it for you.  Please ask your nurse to call them for you.
We have spiritual beliefs that are important to how we think about medical care and decisions. Could I tell you more about this?
Would you be willing to speak with our family’s [chaplain / rabbi / faith leader / etc]?

General questions
What are the main decisions that need to be made?
What do other people in my position often decide to do?
What is your advice about what is the best decision?

Being a substitute decision maker for a loved one
How can I be a good substitute decision maker for my loved one?
What if my loved one never talked to me about his / her beliefs and wishes?
Do I need a copy of my loved one’s Advance Directives to make decisions?

I don’t know what to do—or how to decide. Can you help me think through things?
How sure are you about what to expect?

The medical problem (that is, the diagnosis)
What is the main medical problem right now?
Is the medical problem affecting many body organs?
Is my loved one on life support?

What is the main treatment my loved one is getting?
How long before someone usually responds to this treatment?
Are there any other treatments that might help?

Procedures (like surgeries, biopsies, endoscopies, etc)
What is the purpose of the procedure?
How likely is the procedure to work?
What are the main risks?
Are their alternatives to doing this procedure?

What should I expect?
What to expect short-term?
How long do you expect my loved one to be in the ICU?
How long do you think it will take to see signs of improvement?
What are you looking for as a sign of improvement? Or a sign of worsening?
Is there an important milestone you are looking for?

What to expect long-term?
What does the recovery period look like in general?
How do you think this illness will affect my loved one’s future quality of life?
How likely is it that my loved one will regain their baseline health?
How likely is it that my loved one will regain their ability to be independent?
How likely is it that this illness will affect my loved one’s thinking and cognitive function?

Asking about prognosis
I want to know what to expect. Could you tell me about prognosis in a couple different ways so that we understand better:
What are the statistics? Like, out of 100 people like my loved one, how many will likely get better and how many probably won’t?
What are the best case and worse case scenarios?
What do you think is the most likely outcome?

Trust and conflict
Sometimes a doctor says things are better and then a different doctor says that things are the same or worse.  How can this be?
How sure are you that the right treatments are being given?
I am worried about conflict within our family, but I don’t know what to do. Can you give me advice on how to handle it?
I’m worried that there is some disagreement between our family and the medical team about what to do. I know we all want the same thing—to do right by my loved one.  Can I tell you what is on my mind?
I am worried that there is a lot of disagreement between our family and the medical team. Can we get someone to help us both work through this situation? We have people to help who can be your advocate.  Please ask your nurse and she/he will arrange this for you.

Culture & language
Could I get help with a translator for myself / my family?
We have cultural beliefs that are important to how we think about medical care and decisions. Could I tell you more about this?

Questions to ask yourself

Support from others        
Do I need help or support from others—or just a person to talk to?  If so, we can get help for you.  Please ask your nurse to arrange this for you.

Symptoms and comfort          
Does my loved one look comfortable—or do they seem to have pain, shortness of breath, anxiety, or confusion?

Am I worried about money, finances, or work?  If so, we can get a financial counselor to speak with you.  Please ask your nurse to contact the  ICU case manager for you.

What my loved one values
What are the things in life that are most important to my loved one?
Is the treatment my loved one getting right now likely to result in a quality of life they would accept?
To increase the chance of survival, would your loved one accept being dependent on others? Or have difficulty thinking as a result of ICU care?
Am I making decisions for my loved one (as if I were standing in their shoes)?  Or am I making decisions based on what I would want instead?