Table 3.

First-choice health outcome priority and acceptance of common end-of-life scenarios

Common End-of-Life ScenarioMaintaining Independence (n=130)Staying Alive (n=82)Reducing Pain and Other Symptoms (n=42)Pa
No longer can recognize or interact with family or friends0.19
 Difficult, but acceptable/Worth living, but just barely55 (42.3)48 (58.5)20 (47.6)
 Not worth living55 (42.3)24 (29.3)14 (33.3)
 Can’t answer now20 (15.4)10 (12.2)8 (19.0)
No longer can think or talk clearly0.01
 Difficult, but acceptable/Worth living, but just barely59 (45.4)52 (63.4)22 (52.4)
 Not worth living60 (46.2)22 (26.8)11 (26.2)
 Can’t answer now11 (8.5)8 (9.8)9 (21.4)
No longer can respond to commands or requests0.01
 Difficult, but acceptable/Worth living, but just barely46 (35.4)46 (56.1)18 (42.9)
 Not worth living68 (52.3)26 (31.7)14 (33.3)
 Can’t answer now16 (12.3)10 (12.2)10 (23.8)
No longer can walk but get around in a wheelchairb0.28
 Difficult, but acceptable/Worth living, but just barely109 (84.5)74 (90.2)35 (83.3)
 Not worth living10 (7.8)1 (1.2)2 (4.8)
 Can’t answer now10 (7.8)7 (8.5)5 (11.9)
No longer can get outside and must spend all day at home0.22
 Difficult, but acceptable/Worth living, but just barely108 (83.1)75 (91.5)34 (81.0)
 Not worth living8 (6.2)2 (2.4)1 (2.4)
 Can’t answer now14 (10.8)5 (6.1)7 (16.7)
Are in severe untreatable pain most of the time0.14
 Difficult, but acceptable/Worth living, but just barely52 (40.0)43 (52.4)18 (42.9)
 Not worth living62 (47.7)25 (30.5)16 (38.1)
 Can’t answer now16 (12.3)14 (17.1)8 (19.0)
Are in severe discomfort most of the time (such as nausea, diarrhea)b0.04
 Difficult, but acceptable/Worth living, but just barely73 (56.6)59 (72.0)23 (54.8)
 Not worth living43 (33.3)13 (15.9)11 (26.2)
 Can’t answer now13 (10.1)10 (12.2)8 (19.0)
Are on a kidney dialysis machine to keep you aliveb0.22
 Difficult, but acceptable/Worth living, but just barely77 (59.7)61 (74.4)28 (66.7)
 Not worth living32 (24.8)11 (13.4)7 (16.7)
 Can’t answer now20 (15.5)10 (12.2)7 (16.7)
Are on a breathing machine to keep you alive0.18
 Difficult, but acceptable/Worth living, but just barely37 (28.5)34 (41.5)10 (23.8)
 Not worth living76 (58.5)37 (45.1)24 (57.1)
 Can’t answer now17 (13.1)11 (13.4)8 (19.0)
Need someone to take care of you 24 h a day0.15
 Difficult, but acceptable/Worth living, but just barely59 (45.4)52 (63.4)23 (54.8)
 Not worth living52 (40.0)23 (28.0)14 (33.3)
 Can’t answer now19 (14.6)7 (8.5)5 (11.9)
No longer can control your bladder or bowels0.01
 Difficult, but acceptable/Worth living, but just barely60 (46.2)56 (68.3)25 (59.5)
 Not worth living51 (39.2)15 (18.3)10 (23.8)
 Can’t answer now19 (14.6)11 (13.4)7 (16.7)
Live in a nursing home permanently0.004
 Difficult, but acceptable/Worth living, but just barely60 (46.2)59 (72.0)20 (47.6)
 Not worth living52 (40.0)15 (18.3)15 (35.7)
 Can’t answer now18 (13.8)8 (9.8)7 (16.7)
Are an emotional or financial burden to family0.001
 Difficult, but acceptable/Worth living, but just barely42 (32.3)46 (56.1)16 (38.1)
 Not worth living69 (53.1)21 (25.6)16 (38.1)
 Can’t answer now19 (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.