Background
Methods
Design/setting
Participants
Procedure
Survey instrument
Measures
Outcomes
Domain | Response options |
---|---|
For all questions the informant was reminded to focus on the decedent’s last 30 days while he/she was at the location identified earlier through a series of questions, as to where the majority of care was provided.
| |
Physical comfort and emotional support
| |
[Asked of informant’s if the decedent had experienced pain and were provided medications or treatment for their pain] … | |
Did [DECEDENT] receive too much, too little, or just the right amount of medication for (his/her) pain? | [ ] Too much |
[ ] Too little | |
[ ] Right amount | |
Similar questions were asked about help to treat dyspnea and support for feeling of anxiety and/or sadness (emotional support). | |
Promotion of shared decision making (among informants who had contact with the decedent’s doctor or nurse…)
| |
Was there ever a problem understanding what any doctor or nurse was saying to you about what to expect from treatment? | [ ] Yes |
[ ] No | |
[ ] No treatment | |
Was there ever a decision made about (his/her) care without enough input from (him/her) or (his/her) family? | [ ] Yes |
[ ] No | |
How much information did the doctors or nurses provide you about [DECEDENT’S] medical condition - would you say less information than was needed, just the right amount, or more than was needed? | [ ] Less than was needed |
[ ] Just the right amount | |
[ ] More than was needed | |
Treating the dying patient with respect
| |
During those last 30 days how often was (he/she) treated with respect by those who were taking care of (him/her) - always, usually, sometimes, or never? | [ ] Always |
[ ] Usually | |
[ ] Sometimes | |
[ ] Never | |
Attend to the needs of the family
| |
a) Information needs | |
At any time did you or your family receive any information about what to expect while (he/she) was dying? (e.g. symptom relief (pain, breathing), emotions)
| [ ] Yes |
[ ] No | |
Would you have wanted some or more information about that? | [ ] Yes |
[ ] No | |
At any time did you or your family receive any information about what to do at the time of (his/her) death? (process of who to call, contact …)
| [ ] Yes |
[ ] No | |
Would you have wanted some or more information about that? | [ ] Yes |
[ ] No | |
At any time during the time around [DECEDENT’S NAME] death, did you or your family receive any information about the medicines that would be used to manage (his/her) pain, shortness of breath, or other symptoms? | [ ] Yes |
[ ] No | |
Would you have wanted some or more information about the medicines? | [ ] Yes |
[ ] No | |
b) Caregiver skills – knowing what to expect as death approached | |
How confident were you that you knew what to expect while [DECEDENT] was dying? Were you: | [ ] Very confident |
[ ] Fairly confident | |
[ ] Not confident | |
How confident were you that you knew what to do at the time of death. Were you: | [ ] Very confident |
[ ] Fairly confident | |
[ ] Not confident | |
How confident were you that you understood about the medicines that would be used to manage [his/her] pain, shortness of breath, or other symptoms. Were you: | [ ] Very confident |
[ ] Fairly confident | |
[ ] Not confident | |
Attend to emotional and spiritual needs of the family
| |
During this time did someone talk with you about your religious or spiritual beliefs? | [ ] Yes |
[ ] No | |
If yes, was it done in a sensitive manner? | [ ] Yes |
[ ] No | |
Did you have as much contact of that kind as you wanted? | [ ] Yes |
[ ] No | |
How much support in dealing with your feelings about [DECEDENT’S] death did the doctors, nurses or other professional staff taking care of [him/her] provide you? | [ ] Less support than was needed |
[ ] Right amount | |
Did a doctor, nurse or other professional staff taking care of [DECEDENT] talk about how you might feel after [his/her] death? | [ ] Yes |
[ ] No | |
Would you have wanted them to? | [ ] Yes |
[ ] No | |
Was it done in a sensitive manner? | [ ] Yes |
[ ] No | |
Provide coordination of care
| |
During those last 30 days, was there any problem with doctors or nurses not knowing enough about [his/her] medical history to provide the best possible care? | [ ] Yes |
[ ] No | |
Overall satisfaction with care
| |
On a scale of 0 to 10, where 0 means the worst care possible and 10 means the best care possible, what number would you give the overall care that [DECEDENT] received during those last 30 days of life while being cared for at [LOCATION OF CARE]? | 0 = worst care possible |
10 = best care possible |
Location of the majority of care
Covariates
Study size
Analysis
Results
Decedent characteristics
Characteristic | Frequency (percent) | ||||
---|---|---|---|---|---|
All | Location of care | ||||
Home | Hospital (acute/chronic care units) | Hospital palliative unit | Long-term care | ||
Decedents (n) | 1316 (100) | 514 (39.1) | 297 (22.6) | 120 (9.1) | 385 (29.3) |
Sex
§
| |||||
Female | 675 (51.3) | 226 (44.0) | 135 (45.5) | 60 (50.0) | 254 (66.0) |
Age group (years)§
| |||||
19-64 | 189 (14.4) | 121 (23.5) | 40 (13.5) | 22 (18.3) | 6 (1.6) |
65-84 | 591 (44.9) | 256 (49.8) | 138 (46.5) | 64 (53.3) | 133 (34.6) |
85+ | 536 (40.7) | 137 (26.7) | 119 (40.1) | 34 (28.3) | 246 (63.9) |
Mean age (std)§
| 79.1 (12.8) | 74.8 (13.1) | 78.3 (12.8) | 75.5 (12.6) | 86.4 (8.6) |
Median (range) | 81 (19–107) | 76.5 (19–103) | 81 (24–107) | 78 (43–98) | 87 (28–101) |
Cause of death
§
| |||||
Cancer | 501 (38.1) | 286 (55.8) | 93 (31.3) | 84 (70.0) | 38 (9.9) |
Circulatory system disease | 319 (24.2) | 105 (20.5) | 87 (29.3) | 18 (15.0) | 109 (28.3) |
Respiratory system disease | 129 (9.8) | 36 (7.0) | 35 (11.8) | 7 (5.8) | 51 (13.3) |
Nervous system/mental and behavioural disorders | 170 (12.9) | 30 (5.8) | 18 (6.1) | 5 (4.2) | 117 (30.4) |
Other causes | 197 (15.0) | 57 (11.1) | 64 (21.6) | 6 (5.0) | 70 (18.2) |
Cancer cause of death
§
| |||||
Cancer | 501 (38.1) | 286 (55.8) | 93 (31.4) | 84 (70.0) | 38 (9.9) |
Non-cancer | 813 (61.9) | 227 (44.3) | 203 (68.6) | 36 (30.0) | 347 (90.1) |
Marital status
§
| |||||
Married | 629 (47.8) | 321 (62.5) | 142 (47.8) | 66 (55.0) | 100 (26.0) |
Divorced/separated | 92 (7.0) | 30 (5.8) | 29 (9.8) | 9 (7.5) | 24 (6.2) |
Never married | 80 (6.1) | 22 (4.3) | 22 (7.4) | 13 (10.8) | 23 (6.0) |
Widowed | 515 (39.1) | 141 (27.4) | 104 (35.0) | 32 (26.7) | 238 (61.8) |
Lived alone
§
| |||||
Yes | 229 (17.4) | 100 (19.5) | 80 (26.9) | 32 (26.7) | 17 (4.4) |
Perceived themselves as a visible minority
*
| |||||
Yes | 94 (7.2) | 30 (5.9) | 32 (10.8) | 11 (9.2) | 21 (5.5) |
No | 1206 (92.0) | 479 (93.9) | 261 (88.2) | 107 (89.2) | 359 (93.3) |
Don’t know | 11 (0.8) | 1 (0.2) | 3 (1.0) | 2 (1.7) | 5 (1.3) |
Education (highest level completed)§
| |||||
Completed postsecondary | 340 (25.8) | 170 (33.1) | 71 (23.9) | 32 (26.7) | 67 (17.4) |
Some postsecondary | 166 (12.6) | 71 (13.8) | 39 (13.1) | 16 (13.3) | 40 (10.4) |
High school | 217 (16.5) | 82 (16.0) | 47 (15.8) | 21 (17.5) | 67 (17.4) |
Less than high school | 562 (42.7) | 179 (34.8) | 135 (45.5) | 49 (40.8) | 199 (51.7) |
Don’t know | 31 (2.4) | 12 (2.3) | 5 (1.7) | 2 (1.7) | 12 (3.1) |
Income (dollars)§
| |||||
Less than 20,000 | 319 (24.2) | 76 (14.8) | 74 (24.9) | 22 (18.3) | 147 (38.2) |
20,000 – 29,999 | 291 (22.1) | 100 (19.5) | 62 (20.9) | 33 (27.5) | 96 (24.9) |
30,000 – 49,999 | 230 (17.5) | 97 (18.9) | 58 (19.5) | 24 (20.0) | 51 (13.3) |
Greater than 50,000 | 312 (23.7) | 179 (34.8) | 66 (22.2) | 25 (20.8) | 42 (10.9) |
Don’t know/refused | 164 (12.5) | 62 (12.1) | 37 (12.5) | 16 (13.3) | 49 (12.7) |
Aware of own approaching death
§
| |||||
Yes | 649 (49.3) | 320 (62.3) | 131 (44.1) | 66 (71.7) | 112 (29.1) |
No | 466 (35.4) | 133 (25.9) | 122 (41.1) | 16 (13.3) | 195 (50.7) |
Not sure | 201 (15.3) | 61 (11.9) | 44 (14.8) | 18 (15.0) | 78 (20.3) |
Informant
| |||||
Sex
†
| |||||
Female | 926 (70.4) | 382 (74.3) | 217 (73.1) | 75 (62.5) | 252 (65.5) |
Age group (years) | |||||
19-64 | 717 (54.5) | 282 (55.0) | 167 (56.2) | 61 (50.8) | 207 (53.8) |
65-84 | 542 (41.2) | 218 (42.5) | 114 (38.4) | 53 (44.2) | 157 (40.8) |
85+ | 56 (4.3) | 13 (2.5) | 16 (5.4) | 6 (5.0) | 21 (5.5) |
Mean age (std) | 63.9 (11.4) | 63.3 (11.5) | 64.1 (11.5) | 63.6 (12.7) | 64.8 (10.7) |
Median (range) | 63 (27–96) | 63 (29–92) | 63 (27–96) | 64 (29–91) | 64 (32–93) |
Relationship to decedent
§
| |||||
Spouse/partner | 473 (35.9) | 262 (51.0) | 98 (33.0) | 49 (40.8) | 64 (16.6) |
Their child | 638 (48.5) | 200 (38.9) | 139 (46.8) | 44 (36.7) | 255 (66.2) |
Other | 205 (15.6) | 52 (10.1) | 60 (20.2) | 27 (22.5) | 66 (17.1) |
Education (highest level completed) | |||||
Completed postsecondary | 657 (49.9) | 273 (53.1) | 140 (47.1) | 55 (45.8) | 189 (49.1) |
Some postsecondary | 247 (18.8) | 90 (17.5) | 66 (22.2) | 24 (20.0) | 67 (17.4) |
High school | 234 (17.8) | 83 (16.2) | 49 (16.5) | 20 (16.7) | 82 (21.3) |
Less than high school | 175 (13.3) | 65 (12.7) | 42 (14.1) | 21 (17.5) | 47 (12.2) |
Don’t know/refused | 3 (0.2) | 3 (0.6) | 0 | 0 | 0 |
Health status
| |||||
Excellent | 289 (22.0) | 104 (20.4) | 67 (22.0) | 27 (22.7) | 91 (23.6) |
Very good | 525 (40.0) | 195 (38.2) | 117 (39.4) | 48 (40.3) | 165 (42.9) |
Good | 344 (26.2) | 146 (28.6) | 73 (24.6) | 30 (25.2) | 95 (24.7) |
Fair | 114 (8.7) | 47 (9.2) | 30 (10.1) | 7 (5.9) | 30 (7.8) |
Poor | 40 (3.1) | 19 (3.7) | 10 (3.4) | 7 (5.9) | 4 (1.0) |
Aware of decedent did not have long to live
§
| |||||
Yes | 734 (55.8) | 295 (57.4) | 145 (48.8) | 90 (75.0) | 204 (53.0) |
No | 339 (25.8) | 126 (24.5) | 91 (30.6) | 13 (10.8) | 109 (28.3) |
Not sure | 243 (18.5) | 93 (18.1) | 61 (20.5) | 17 (14.2) | 72 (18.7) |
Informant characteristics
Domain and satisfaction scores
Domain | Perception of unmet need/concerns | ||||
---|---|---|---|---|---|
Frequency (percent) | |||||
All | Home | Hospital (acute/chronic care) | Hospital- palliative unit | Long-term care | |
Physical comfort and emotions: | |||||
Decedent did not receive desired help for: | |||||
Pain | 108 (8.2) | 46 (9.0) | 23 (7.7) | 8 (6.7) | 31 (8.1) |
Dyspnea§
| 74 (5.6) | 49 (9.5) | 12 (4.0) | 0 (0) | 13 (3.4) |
Emotional support†
| 206 (15.7) | 84 (16.3) | 63 (21.2) | 11 (9.2) | 48 (12.5) |
Promote shared decision making§: | |||||
Concerns with communication | 332 (27.2) | 106 (23.8) | 110 (37.8) | 31 (26.1) | 85 (23.3) |
Concerns with the decedent being treated with respect§
| 194 (14.9) | 41 (8.1) | 71 (24.4) | 19 (15.8) | 63 (16.5) |
Attend to the needs of the family: | |||||
a) Unmet need in obtaining information‡
| 525 (40.2) | 220 (43.1) | 137 (46.8) | 37 (30.8) | 131 (34.3) |
b) Concerns with knowing what to expect†
| 862 (66.0) | 346 (67.7) | 211 (72.0) | 80 (66.7) | 225 (58.9) |
Concerns about support for the emotional and spiritual needs of the family | 860 (65.8) | 338 (66.4) | 196 (66.4) | 77 (64.2) | 249 (65.0) |
Coordination of care concerns†
| 202 (15.9) | 81 (16.2) | 61 (21.7) | 11 (9.2) | 49 (13.2) |
Overall satisfaction‡: | |||||
Not completely satisfied | 729 (57.0) | 256 (51.1) | 190 (66.4) | 64 (54.2) | 219 (58.6) |
Multivariable adjustments
Location of care | |||||||
---|---|---|---|---|---|---|---|
Unadjusted (Unadj) and Adjusted1(Adj) Odds ratio (95% confidence interval) | |||||||
Outcomes: | Home | Hospital (acutechronic care) | Hospital palliative unit | Long-term care | |||
Decedent did not receive the desired help for: | Unadj | Adj | Unadj | Adj | Unadj | Adj | |
Pain | Referent | 0.9 (0.5-1.5) | 0.8 (0.5-1.5) | 0.8 (0.3-1.7) | 0.8 (0.4-1.9) | 0.9 (0.5-1.4) | 1.2 (0.7-2.2) |
Dyspnea2
| Referent | 0.4 (0.2-0.7) | 0.3 (0.1-0.6) | 100% had their needs met | 0.3 (0.2-0.6) | 0.2 (0.1-0.5) | |
Emotional support | Referent | 1.3 (0.9-1.9) | 1.1 (0.7-1.7) | 0.6 (0.3-1.1) | 0.6 (0.3-1.1) | 0.8 (0.5-1.1) | 0.7 (0.4-1.1) |
Shared decision making. Informant had concerns with communication | Referent | 1.9 (1.4-2.6) | 2.0 (1.4-2.8) | 1.1 (0.7-1.8) | 1.3 (0.8-2.1) | 1.0 (0.7-1.4) | 1.2 (0.8-1.8) |
Concerns with the decedent being treated with respect | Referent | 3.7 (2.4-5.6) | 3.2 (2.1-5.0) | 2.0 (1.1-3.6) | 2.1 (1.1-3.9) | 2.2 (1.5-3.4) | 2.3 (1.4-3.8) |
Attend to the needs of the family | |||||||
a) Unmet need in obtaining information | Referent | 1.1 (0.9-1.5) | 1.0 (0.8-1.4) | 0.6 (0.4-0.9) | 0.6 (0.4-1.0) | 0.7 (0.5-0.9) | 0.7 (0.5-1.0) |
b) Concerns with knowing what to expect | Referent | 1.2 (0.8-1.6) | 1.1 (0.8-1.5) | 1.0 (0.6-1.5) | 1.1 (0.7-1.7) | 0.6 (0.5-0.9) | 0.7 (0.5-0.9) |
Concerns about support for the emotional and spiritual needs of the family | Referent | 1.0 (0.7-1.4) | 0.9 (0.6-1.2) | 1.0 (0.7-1.5) | 1.0 (0.6-1.6) | 1.0 (0.8-1.4) | 0.7 (0.5-1.0) |
Coordination of care concerns | Referent | 1.4 (0.9-2.0) | 1.4 (0.9-2.0) | 0.5 (0.2-1.0) | 0.5 (0.2-1.0) | 0.8 (0.5-1.1) | 1.0 (0.6-1.6) |
Not completely satisfied with overall care | Referent | 1.8 (1.4-2.5) | 1.6 (1.2-2.3) | 1.1 (0.7-1.6) | 1.1 (0.7-1.7) | 1.3 (1.0-1.8) | 1.2 (0.8-1.6) |