Table 3.
First-choice health outcome priority and acceptance of common end-of-life scenarios
| Common End-of-Life Scenario | Maintaining Independence (n=130) | Staying Alive (n=82) | Reducing Pain and Other Symptoms (n=42) | Pa |
|---|---|---|---|---|
| No longer can recognize or interact with family or friends | 0.19 | |||
| Difficult, but acceptable/Worth living, but just barely | 55 (42.3) | 48 (58.5) | 20 (47.6) | |
| Not worth living | 55 (42.3) | 24 (29.3) | 14 (33.3) | |
| Can’t answer now | 20 (15.4) | 10 (12.2) | 8 (19.0) | |
| No longer can think or talk clearly | 0.01 | |||
| Difficult, but acceptable/Worth living, but just barely | 59 (45.4) | 52 (63.4) | 22 (52.4) | |
| Not worth living | 60 (46.2) | 22 (26.8) | 11 (26.2) | |
| Can’t answer now | 11 (8.5) | 8 (9.8) | 9 (21.4) | |
| No longer can respond to commands or requests | 0.01 | |||
| Difficult, but acceptable/Worth living, but just barely | 46 (35.4) | 46 (56.1) | 18 (42.9) | |
| Not worth living | 68 (52.3) | 26 (31.7) | 14 (33.3) | |
| Can’t answer now | 16 (12.3) | 10 (12.2) | 10 (23.8) | |
| No longer can walk but get around in a wheelchairb | 0.28 | |||
| Difficult, but acceptable/Worth living, but just barely | 109 (84.5) | 74 (90.2) | 35 (83.3) | |
| Not worth living | 10 (7.8) | 1 (1.2) | 2 (4.8) | |
| Can’t answer now | 10 (7.8) | 7 (8.5) | 5 (11.9) | |
| No longer can get outside and must spend all day at home | 0.22 | |||
| Difficult, but acceptable/Worth living, but just barely | 108 (83.1) | 75 (91.5) | 34 (81.0) | |
| Not worth living | 8 (6.2) | 2 (2.4) | 1 (2.4) | |
| Can’t answer now | 14 (10.8) | 5 (6.1) | 7 (16.7) | |
| Are in severe untreatable pain most of the time | 0.14 | |||
| Difficult, but acceptable/Worth living, but just barely | 52 (40.0) | 43 (52.4) | 18 (42.9) | |
| Not worth living | 62 (47.7) | 25 (30.5) | 16 (38.1) | |
| Can’t answer now | 16 (12.3) | 14 (17.1) | 8 (19.0) | |
| Are in severe discomfort most of the time (such as nausea, diarrhea)b | 0.04 | |||
| Difficult, but acceptable/Worth living, but just barely | 73 (56.6) | 59 (72.0) | 23 (54.8) | |
| Not worth living | 43 (33.3) | 13 (15.9) | 11 (26.2) | |
| Can’t answer now | 13 (10.1) | 10 (12.2) | 8 (19.0) | |
| Are on a kidney dialysis machine to keep you aliveb | 0.22 | |||
| Difficult, but acceptable/Worth living, but just barely | 77 (59.7) | 61 (74.4) | 28 (66.7) | |
| Not worth living | 32 (24.8) | 11 (13.4) | 7 (16.7) | |
| Can’t answer now | 20 (15.5) | 10 (12.2) | 7 (16.7) | |
| Are on a breathing machine to keep you alive | 0.18 | |||
| Difficult, but acceptable/Worth living, but just barely | 37 (28.5) | 34 (41.5) | 10 (23.8) | |
| Not worth living | 76 (58.5) | 37 (45.1) | 24 (57.1) | |
| Can’t answer now | 17 (13.1) | 11 (13.4) | 8 (19.0) | |
| Need someone to take care of you 24 h a day | 0.15 | |||
| Difficult, but acceptable/Worth living, but just barely | 59 (45.4) | 52 (63.4) | 23 (54.8) | |
| Not worth living | 52 (40.0) | 23 (28.0) | 14 (33.3) | |
| Can’t answer now | 19 (14.6) | 7 (8.5) | 5 (11.9) | |
| No longer can control your bladder or bowels | 0.01 | |||
| Difficult, but acceptable/Worth living, but just barely | 60 (46.2) | 56 (68.3) | 25 (59.5) | |
| Not worth living | 51 (39.2) | 15 (18.3) | 10 (23.8) | |
| Can’t answer now | 19 (14.6) | 11 (13.4) | 7 (16.7) | |
| Live in a nursing home permanently | 0.004 | |||
| Difficult, but acceptable/Worth living, but just barely | 60 (46.2) | 59 (72.0) | 20 (47.6) | |
| Not worth living | 52 (40.0) | 15 (18.3) | 15 (35.7) | |
| Can’t answer now | 18 (13.8) | 8 (9.8) | 7 (16.7) | |
| Are an emotional or financial burden to family | 0.001 | |||
| Difficult, but acceptable/Worth living, but just barely | 42 (32.3) | 46 (56.1) | 16 (38.1) | |
| Not worth living | 69 (53.1) | 21 (25.6) | 16 (38.1) | |
| Can’t answer now | 19 (14.6) | 15 (18.3) | 10 (23.8) |
Numbers expressed as n (%). Total n=254 (17 of the 271 participants with health outcome priorities were enrolled before inclusion of the end-of-life scenarios tool), except where indicated.
a
Test of association between first priority and scenario responses. P value calculated using chi-squared test.
b
n=253.