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. Author manuscript; available in PMC: 2022 Dec 1.
Published in final edited form as: J Ren Care. 2021 Feb 22;47(4):265–278. doi: 10.1111/jorc.12368

Table 4:

Patients’ Self-Reported Preferences for Common EOL Scenarios

Theme Common End-of-Life Scenario Total (N=101) Has Never Had EOL Discussion with Healthcare Team (N=69) Has Had EOL Discussions with Healthcare Team (N=32)
 P Value
Decrease in Cognitive Function Can No Longer Recognize Family/Friends

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

51 (50.5)

14 (13.9)
36 (35.6)

33 (47.8)

11 (15.9)
25 (36.3)

18 (56.2)

3 (9.4)
11 (34.4)		 0.60
Can No Longer Think Clearly

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

56 (55.4)

20 (19.8)
25 (24.8)

39 (56.5)

14 (20.3)
16 (23.2)

17 (53.1)

6 (18.8)
9 (28.1)		 0.87
Increase in Dependence or Disability Can No Longer Get Outside—Spend All Day at Home

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

75 (74.3)

10 (9.9)
16 (15.8)

50 (72.5)

8 (11.6)
11 (15.9)

25 (78.1)

2 (6.3)
5 (15.6)		 0.70
Need Someone to Help Take Care of Me All the Time

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

70 (69.3)

13 (12.9)
18 (17.8)

45 (65.2)

10 (14.5)
14 (20.3)

25 (78.1)

3 (9.4)
4 (12.5)		 0.42
Can No Longer Control Bladder/Bowels

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

65 (64.3)

15 (14.9)
21 (20.8)

44 (63.8)

11 (15.9)
14 (20.3)

21 (65.6)

4 (12.5)
7 (21.9)		 0.90
Can No Longer Walk but Get around in a Wheelchair

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

79 (78.2)

3 (3.0)
19 (18.8)

53 (76.8)

2 (2.9)
14 (20.3)

26 (81.3)

1 (3.1)
5 (15.6)		 0.86
Live in a Nursing Home Permanently

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

52 (51.5)

29 (28.7)
20 (19.8)

36 (52.2)

22 (31.9)
11 (15.9)

16 (50.0)

7 (21.9)
9 (28.1)		 0.30
Severe Discomfort or Pain Have Severe Discomfort Most of the Time (Nausea, Diarrhea)

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

70 (69.3)

12 (11.9)
19 (18.8)

48 (69.6)

8 (11.6)
13 (18.8)

22 (68.7)

4 (12.5)
6 (18.8)		 0.99
Are in Severe Pain Most of the Time

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

61 (60.4)

19 (18.8)
21 (20.8)

43 (62.3)

12 (17.4)
14 (20.3)

18 (56.2)

7 (21.9)
7 (21.9)		 0.82
Burden on Family Can No Longer Contribute to Family’s Wellbeing

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

 *

57 (57.0)

15 (15.0)
28 (28.0)		 **

41 (60.3)

11 (16.2)
16 (23.5)

16 (50.0)

4 (12.5)
12 (37.5)		 0.35
Are a Severe Financial/Emotional Burden on Family

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

 *

50 (50.0)

17 (17.0)
33 (33.0)		 **

35 (51.5)

11 (16.2)
22 (32.3)

15 (46.8)

6 (18.8)
11 (34.4)		 0.90
Rely on Breathing Machine to Keep Me Alive

  • Difficult, but Acceptable or Worth Living, but Just Barely

  • Not Worth Living

  • Can’t Answer Now

49 (48.5)

27 (26.7)
25 (24.8)

33 (47.8)

20 (29.0)
16 (23.2)

16 (50.0)

7 (21.9)
9 (28.1)		 0.72
*

N=100

**

N=68