PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 1 Appendix – Electronic Supplemental Materials (ESM) Hypothetical Scenarios Questionnaire. Couples received one of three versions of the hypothetical scenario questionnaire in order to test hypotheses about the impact of positive versus negative framing, high versus low amounts of information, and the use of images on preferences for end of life medical treatments. The versions differed in the following four ways. 1) Form 1 and Form 3 framed the chance of success from CPR positively, in terms of chance of survival for all CPR items (i.e., “90% chance of surviving after receiving treatment”), whereas Form 2 framed the chance of success from CPR negatively, in terms of chance of dying (i.e., “10% chance of dying after receiving treatment”) for all CPR items. 2) Form 1 and Form 3 included high levels of information for all mechanical ventilation items (e.g., “tube inserted down your throat”) and mentioned the treatment name (“mechanical ventilation”) multiple times, whereas Form 2 included little information on the procedure and mentioned the name once for the mechanical ventilation items. 3) Form 1 and Form 3 included information on length of hospital stay for all intravenous antibiotics items, whereas Form 2 did not include this information within intravenous antibiotics items. 4) Form 1 and Form 2 did not contain any photos or images of treatment options, whereas Form 3 contained photos or images of each of the four treatment items (CPR, mechanical ventilation, artificial nutrition, and intravenous antibiotics) next to the item. Thus Form 1 and Form 3 differed only on the presence of images. In order to test for potential effects from positive or negative framing, high or low levels of information, and presence or absence of images, independent samples t-tests were run comparing the means for all treatment options across the three forms (see ESM Table 1). Only one significant difference was found between forms on the treatment preferences, on the artificial nutrition items, where couples who completed Form 3 (with an image) indicated greater interest in receiving this intervention than couples who completed Form 1 (without the image of artificial nutrition). Given the PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 2 general lack of significant differences between forms, all couples/forms were combined in further analyses. Below is Form 3 which includes images. PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 3 Hypothetical Scenario Questionnaire - Form 3 The following questions ask about your treatment preferences in different medical situations. Please read through each scenario and the treatment options for that scenario. Then, indicate your preference for the treatment on the 5-point scale. 1. You are in your current health (the way you are feeling now): a. If your breathing or heartbeat stops, medical personnel would administer cardiopulmonary resuscitation, or CPR, which is the use of drugs and electric shock to start the heart beating and artificial breathing. Imagine that you have approximately a 90% chance of surviving after receiving CPR and leaving the hospital. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: CPR 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no b. If your breathing became difficult, medical personnel would administer mechanical ventilation, which is breathing by machine. In mechanical ventilation, a tube would be inserted down your throat to your windpipe and connected to the machine. Please indicate whether or not you would want mechanical ventilation by circling your response from 1 to 5: Mechanical Ventilation 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no c. If you became unable to eat, artificial nutrition, which is nutrition and fluid given through a tube in the veins, nose, or stomach, would be administered. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: Artificial Nutrition PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 1 definitely yes 2 probably yes 3 not sure 4 probably no 4 5 definitely no d. If you developed a condition like pneumonia, intravenous antibiotics, which are antibiotics administered through a tube in a vein in a hospital, would be administered. You would be required to stay in the hospital for some length of time. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: IV Antibiotics 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no __________________________________________________________________________________ 2. Imagine that you have trouble remembering things and thinking clearly. You cannot always recognize people you know. You have no chance of recovery. Your mental abilities may get worse quickly or you may stay the way you are now for a long time. Your physical condition and abilities are unaffected. a. If your breathing or heartbeat stops, medical personnel would administer cardiopulmonary resuscitation, or CPR, which is the use of drugs and electric shock to start the heart beating and artificial breathing. Imagine that you have approximately a 30% chance of surviving after receiving CPR and leaving the hospital. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: CPR 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 5 b. If your breathing became difficult, medical personnel would administer mechanical ventilation, which is breathing by machine. In mechanical ventilation, a tube would be inserted down your throat to your windpipe and connected to the machine. Please indicate whether or not you would want mechanical ventilation by circling your response from 1 to 5: Mechanical Ventilation 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no c. If you became unable to eat, artificial nutrition, which is nutrition and fluid given through a tube in the veins, nose, or stomach, would be administered. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: Artificial Nutrition 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no d. If you developed a condition like pneumonia, intravenous antibiotics, which are antibiotics administered through a tube in a vein in a hospital, would be administered. You would be required to stay in the hospital for some length of time. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: IV Antibiotics 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 6 __________________________________________________________________________________ 3. Imagine that you have suffered a severe stroke and have been in a coma for six weeks. In the opinion of your doctor, you have a 20% chance of regaining awareness and the ability to think, reason, and remember. If you do not recover, your physical condition will slowly decline over time. You rely on others for help with feeding, bathing, dressing, and toileting. You may live in this condition for several years. a. If your breathing or heartbeat stops, medical personnel would administer cardiopulmonary resuscitation, or CPR, which is the use of drugs and electric shock to start the heart beating and artificial breathing. Imagine that you have approximately a 10% chance of surviving after receiving CPR and leaving the hospital. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: CPR 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no b. If your breathing became difficult, medical personnel would administer mechanical ventilation, which is breathing by machine. In mechanical ventilation, a tube would be inserted down your throat to your windpipe and connected to the machine. Please indicate whether or not you would want mechanical ventilation by circling your response from 1 to 5: Mechanical Ventilation 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no c. If you developed a condition like pneumonia, intravenous antibiotics, which are antibiotics administered through a tube in a vein in a hospital, would be administered. You would be required to stay in the hospital for some length of time. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: IV Antibiotics PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 1 definitely yes 2 probably yes 3 not sure 4 probably no 7 5 definitely no __________________________________________________________________________________ 4. Imagine that, as the result of an accident, you were able to talk and understand what was going on but needed someone to dress, bath, feed, and move you. In your doctor’s opinion you have no chance of recovery. a. If your breathing or heartbeat stops, medical personnel would administer cardiopulmonary resuscitation, or CPR, which is the use of drugs and electric shock to start the heart beating and artificial breathing. Imagine that you have approximately a 40% chance of surviving after receiving CPR and leaving the hospital. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: CPR 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no b. If your breathing became difficult, medical personnel would administer mechanical ventilation, which is breathing by machine. In mechanical ventilation, a tube would be inserted down your throat to your windpipe and connected to the machine. Please indicate whether or not you would want mechanical ventilation by circling your response from 1 to 5: Mechanical Ventilation 1 definitely yes 2 probably yes 3 not sure c. If you became unable to eat, artificial nutrition, which is nutrition and fluid given through a tube in the veins, nose, or stomach, would be administered. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: 4 probably no 5 definitely no PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 8 Artificial Nutrition 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no d. If you developed a condition like pneumonia, intravenous antibiotics, which are antibiotics administered through a tube in a vein in a hospital, would be administered. You would be required to stay in the hospital for some length of time. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: IV Antibiotics 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no 5. Imagine that you have cancer, which has spread to more than one part of your body. You are tired and weak, requiring some help with household chores. Your thinking and memory are unaffected. You are not in pain. In the opinion of your doctor, you have no chance of recovery. Your doctor estimates that you have about six months to live. a. If your breathing or heartbeat stops, medical personnel would administer cardiopulmonary resuscitation, or CPR, which is the use of drugs and electric shock to start the heart beating and artificial breathing. Imagine that you have approximately a 10% chance of surviving after receiving CPR and leaving the hospital. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: CPR 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 9 b. If your breathing became difficult, medical personnel would administer mechanical ventilation, which is breathing by machine. In mechanical ventilation, a tube would be inserted down your throat to your windpipe and connected to the machine. Please indicate whether or not you would want mechanical ventilation by circling your response from 1 to 5: Mechanical Ventilation 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no c. If you became unable to eat, artificial nutrition, which is nutrition and fluid given through a tube in the veins, nose, or stomach, would be administered. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: Artificial Nutrition 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no d. If you developed a condition like pneumonia, intravenous antibiotics, which are antibiotics administered through a tube in a vein in a hospital, would be administered. You would be required to stay in the hospital for some length of time. Please indicate whether or not you would want this treatment by circling your response from 1 to 5: IV Antibiotics 1 definitely yes 2 probably yes 3 not sure 4 probably no 5 definitely no PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 10 ESM Table 1 Scenario and treatment means across forms Form 1 Form 2 Form 3 Current Health 1.68 1.73 1.53a Cognitive Impairment 2.88 2.73 2.71 Severe Stroke 3.57 3.53 3.49 Physical Impairment 2.90 2.93 2.81 Cancer 3.05 3.01 2.96 CPR 2.60 2.63 2.51 Mechanical Ventilation 2.96 2.90 2.91 Artificial Nutrition 2.95 2.91 2.68b IV Antibiotics 2.61 2.56 2.53 Hypothetical Scenario Treatment Note. Mean differences tested using independent samples t test. a indicates significant difference between form 3 and form 1 & 2, p < .05. b indicates significant difference between form 3 and form 1, p < .05. Form 3 included images of the various treatment options. PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 11 ESM Table 2 Moderated regression analyses predicting self-ratings of average treatment preferences from proxyratings of average treatment preference and proxy-characteristics Criterion: Average wife self-rating Husband Characteristic Beta Average Husband Proxy-Rating Beta -.193** -.076 .341** Interaction Term (husband characteristic X husband proxyrating) Beta -.083 -.263 -.205** -.198** -.159* -.191** -.195** -.162* -.150* .189 .071 .046 .078 .029 .054 .073 .050 .396* .346** .333** .344** .342** .304** .371** .390** .078 -.049 .027 -.075 -.053 -.168* -.033 .068 Husband Age Husband Characteristic Marital Satisfaction Caregiving Experience1 Time Dated Religiosity Spirituality Moral Strictness Conservativeness Agreeableness Conscientiousness Model R square .205 .157 .208 .198 .183 .197 .229 .201 .205 Criterion: Average husband self-rating Wife Age Wife Characteristic Beta Average Wife ProxyRating Beta Interaction Term (wife characteristic X wife proxyrating) Beta .049 Model R square Wife Characteristic Marital Satisfaction -.100 .173** .417** .246 Caregiving Experience2 -.226 .293* .353** .145 .316 Time Dated -.120 -.061 .482** .018 .214 Religiosity -.110 .021 .415** -.023 .218 Spirituality -.118 -.065 .408** .068 .232 Moral Strictness -.114 -.027 .415** .071 .222 Conservativeness -.109 -.063 .413** -.032 .222 Agreeableness -.110 -.019 .407** .021 .210 Conscientiousness -.112 .012 .411** .063 .210 1 2 Note. n = 197; indicates n = 36 husbands who had caregiving experience, indicates n = 46 wives who had caregiving experience. * indicates Beta coefficient significant at p < .05, ** indicates Beta coefficient significant at p < .01 PROXIES IN END-OF-LIFE DECISIONS, SUPPLEMENTAL MATERIALS 12 ESM Table 3 Moderated regression analyses predicting self-ratings of average treatment preferences from proxyratings of average treatment preference and proxy-self similarity Criterion: Average wife self-rating Husband Age Beta Variable Marital Satisfaction Religiosity Spirituality Moral Strictness Conservativeness Agreeableness Conscientiousness -.196** -.197** -.154* -.191** -.192** -.012* -.147* Husband Variable Beta Wife Variable Beta -.118 .029 .018 .021 .042 .078 .129 .057 .048 .022 -.002 .049 -.057 .011 Average Husband ProxyRating Beta .340** .341** .346** .346** .347** .371** .371** Absolute Difference Score Beta .046 -.060 .113 .025 .007 -.063 .059 Model R square .200 .200 .189 .196 .199 .200 .199 Criterion: Average husband self-rating Variable Marital Satisfaction Religiosity Spirituality Moral Strictness Conservativeness Agreeableness Conscientiousness Wife Age Beta Wife Variable Beta Husband Variable Beta Average Wife ProxyRating Beta Absolute Difference Score Beta Model R square -.110 -.131 -.094 -.104 -.108 -.123 -.127 .106 -.051 -.098 -.017 -.061 -.025 .014 .209* .136 -.021 .113 .064 .170* .021 .466** .440** .455** .466** .464** .427** .431** .018 -.010 -.142* -.130* -.170* -.026 .049 .244 .233 .218 .234 .243 .217 .189