Table 2 Future Care Values and Preferences; Closed Ended Workbook Responses

Decision-Making

As a patient I’d like to know ___ about my condition and treatment.

    The basics

6 (14%)

    Mixed preferences

3 (7%)

    The details

33 (75%)

If I had a terminal illness, I would prefer to ___.

    Not know how quickly it is progressing

16 (36%)

    Mixed preferences

4 (9%)

    Know my doctor’s best estimation for how long I have to live

23 (52%)

As I receive care, I would like ___.

    My health care team to do what they think is best

8 (18%)

    Mixed preferences

3 (7%)

    To have a say in every health care decision

31 (70%)

Family/Friend Involvement

How involved do you want your loved ones to be?

    Do exactly what I’ve said, even if it makes them uncomfortable

21 (48%)

    Mixed preferences

9 (20%)

    Do what brings them peace, even if it goes against what I’ve said

10 (23%)

When it comes to your privacy [at death], ___.

    When the time comes, I want to be alone

7 (16%)

    Mixed preferences

8 (18%)

    I want to be surrounded by my loved ones

25 (57%)

When it comes to sharing information about my illness with others, ___.

    I don’t want my loved ones to know everything

4 (9%)

    Mixed preferences

5 (11%)

    I am comfortable with loved ones knowing everything

32 (73%)

Treatment Care

How much medical treatment do you want to try?

    Every treatment available, no matter how uncomfortable I become

9 (20%)

    Mixed preferences

8 (18%)

    Quality of life is more important to me than quantity

24 (55%)

What are your concerns about medical treatments?

    I worry that I won’t get enough care

9 (20%)

    Mixed concerns

29 (66%)

    I worry that I’ll get too much care

3 (7%)

What are your preferences about where you want to be?

    I want to spend my last days in a health care facility

14 (32%)

    Mixed preferences

5 (11%)

    I want to spend my last days at home

21 (48%)