Table A1. Survey questions used to develop model variables

Dependent Variables / Survey Question [response options]
Concerned re: too little medical care / Suppose that you had a very serious illness. Imagine that no one knew exactly how long you would live, but your doctors said you almost certainly would live less than 1 year. In that situation, would you be more concerned that you would receive too little medical treatment or too much medical treatment? [too much, too little, not concerned, don’t know]
Concerned re: too much medical care
Want to spend last days in a hospital / If that illness got worse, where would you like to spend your last days – in a hospital, a nursing home, or at home? [hospital, nursing home, home, don’t know]
Want life-prolonging drugs / To deal with that illness, do you think you would want drugs that would make you feel worse all the time but might prolong your life? [yes, no, don’t know]
Want palliative drugs / If you reached the point at which you were feeling bad all the time, would you want drugs that would make you feel better, even if they might shorten your life? [yes, no, don’t know]
Want a respirator for 1 weeks’ life extension / If you needed a respirator to stay alive, and it would extend your life for a week, would you want to be put on a respirator? [yes, no, don’t know]
Want a respirator for 1 months’ life extension / Respondents who answered no to 1 week’s life extension, above, were asked:
If it would extend your life for a month, would you want to be put on a ventilator? [yes, no, don’t know]
Summed index of “positive attitude toward life-prolongation” / concern about too little medical care + preference for dying in the hospital + preference for life prolongation + preference against potentially life-shortening palliation + preference for mechanical ventilation for 1 weeks’ life extension + preference for MV for 1 months’ life extension (range 0 – 6)
Independent Variables
Predisposing variables
Financial strain / B9. How important are financial issues for you when you decide whether or not to get any medical care? [very important, important, somewhat important, not inmportant]
Self-management confidence / B6. How confident are you that you can manage your health conditions?
[very confident, somewhat confident, not very confident, have no health conditions]
Your role vs. MDs role / B5. When you are ill, ould you rate your role in managing the illness as more important than the doctor’s, equally as important as the doctors, or less important than the doctor’s? [more important, equally as important, less important]
Planning own treatment / B12. When people have illnesses, how important do you think it is for them to play a large part in planning their own treatment? Would you say very important, somewhat important, or no important? [very important, somewhat important, not important]
Self-efficacy scale / Sum of numerical value for the previous 3 variables divided by 9 (maximum=1 (9/9) highest self-efficacy, minimum=.33 (3/9) lowest self-efficacy)
Preference for specialists / B11. In general, do you think it is better for a patient to have one general doctor who manages most of their medical problems, or to have each problem cared for by a specialist? [one general doctor, specialists, don’t know]
Perceived effectiveness of mechanical ventilation / E15. From what you know, about how many people who need a respirator to keep them alive are able to get back to their normal activities? Would you say more than half, about half, less than half, almost none or none? [more than half, about half, less than half, almost none or none, don’t know]
Enabling variables
Live alone / F2. How many peole live in your home, including you? [live alone, n]
Help if sick / F9. If you were very sick and could not take care of yourself at all, is there someone who could fix meals and take care of things around your house for a week? [yes, no]
Personal contact / Combined: F4. In the last 12 months, about how often did you have personal contact with family members (who do not live with you)? F5. In the last 12 months, how often did yo have personal contact with friends (who do not live with you)? [daily, weekly, monthly, less often, never, have no family/friends]
Church attendance / F.7 About how often do you attend church, synagogue or mosque? [daily, weekly, monthly, less often, never]
Social/community activities / F8. About how often do you attend social or community group activities? [daily, weekly, monthly, less often, never]
Need
General Health / G1. In general, how would you rate your overall health? [poor, fair, good, very good, excellent]
Condition often causing pain/discomfort / B1. Do you have any physical or medical conditions that often cause you pain or discomfort? [yes, no]
Provider access/use
ED visits in last 12 months / A1. In the last 12 months, how many times did you go to an emergency room to get care for yourself? [0, 1, 2, 3, 4, 5-9, 10]
Doctor visits in last 12 months / A2. In the last 12 months, how many times did you go to a doctor’s office or clinic to get care for yourself? [0, 1, 2, 3, 4, 5-9, 10]
Personal doctor / A6. Your personal doctor is the one you would see if you need a check-up, want advice about a health problem, or get sick or hurt. Do you have a personal doctor? [yes, no]
Provider perceptions
Not enough time / A4. In the last 12 months, how often did doctors spend enough time with you? [never, sometimes, usually, always]
Not enough care / A5. In the last 12 months, was there any medical care, tests, or treatment you wanted, but didn’t get? [yes, no]
Health care quality / B3. Do you think the quality of the health care you received in the last 12 months was better, worse, or about the same quality as most people your age get? [better, worse, about the same]
Health care environment perceptions
Community health care amount / B13. Compared to the rest of the United States, do you think people in your community get more medical care, less medical care or about the same amount? [more, less, about the same, don’t know]
Community health care quality / B14. Compared to the rest of the United States, do you think people in your community get better quality medical care, worse quality medical care or about the same quality? more, less, about the same, don’t know]

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