| Acknowledgement that critically ill patients may die |
15 (12%) |
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“Anytime you talk about death that's always upsetting because people don't want to address that option, even though it is inevitable.”
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“The part that talked about the patient could die.”
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Page 15 which states: “Some patients are so sick, that their goals cannot be reached. If you are worried that your loved one is dying and treatment will not help, ask a doctor: “Is it time to let go?”) |
12 (10%) |
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“Page 15—it’s hard to see!”
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“Page 15. It’s hard to ask the doctor: ‘Is it time to give up?’”
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| The section of the booklet containing examples of patient goals |
10 (8%) |
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“The goals are sad.”
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“Reading about goals.”
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| Making decisions |
9 (7%) |
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“Just the fact that they [proxies] will have to make decisions.”
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“The reality of letting go and needing to make a decision.”
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| Uncertainty about the patient’s prognosis |
8 (7%) |
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“When it says [that] no one knows exactly what will happen.”
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“You never really know what will happen to someone you love.”
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| Parts of the booklet related directly to the proxy’s loved one in the ICU |
7 (6%) |
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“Page 23 because that is what it looked like when we were talking about whether to take him off the ventilator.”
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“Because we are here with a son who may die.”
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| Acknowledgement that some patients aren’t able to return to living in their homes |
6 (5%) |
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“Knowing that a patient’s not going to come home. I don’t like to hear that part.”
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“Thinking about if they won’t come home.”
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| The situation faced by families in the ICU is upsetting–not the booklet content |
6 (5%) |
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“The whole situation is upsetting, not one particular page.”
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“Some people don’t realize the seriousness of this situation. People could
die!”
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Page 11 which states: “But many people have problems that cannot be cured like severe lung disease, kidney failure, and end-stage cancer. These people have important goals too.” |
6 (5%) |
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“Page 11, because some of these run in my family.”
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“Page 11. My husband has some of those.”
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| Use of the word “die” |
3 (2%) |
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“The use of the word ‘die.’ It feels a little cold. Maybe use something with less of a punch like ‘passing.’”
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“All the pages that have the death word because it’s just too upsetting to think your loved one is going to die.”
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| Negativity |
1 (1%) |
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“Because it was negative. Because God can heal anything. It was negativity that you’re putting on people.”
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