We obtained response from 261 physicians and 176 caregivers of 341 identified patients (response rate 76.5% and 51.6% respectively); this led to 138 cases were both physicians and caregivers of the same patient participated. Most physicians (95%) confirmed they were the treating physicians. All caregivers were family members: partner of the deceased (n = 26, 19%), parents (n = 6, 4%), siblings (n = 23, 17%), children (n = 72, 52%), and other family members (n = 14, 10%). Half of the caregivers had lived with the patient; most had an educational level of high school or lower (66%); 91% described themselves as “very involved in the patient care”.
The median time between death and the physicians´ completing the questionnaire was nine days (IQR 6–20 days). The median time between death and the interview with caregivers was 23.8 weeks (IQR 22.1–27 weeks).
Table 1 presents the distribution of patients' general characteristics – mean age was 61.5 years (SD 15.3), half were female, and most had died in hospital (86%).
Table 1
General characteristics of patients
|
Total n = 138
n (%)
|
HUSI* n = 43
n (%)
|
INC* n = 83
n (%)
|
HUSJ* n = 12
n (%)
|
Age (mean ± SD, median [IQR])
|
61.5 ± 15.3
64 [51–73]
|
64.7 ± 15.3
67.5 [60.5–75.5]
|
58.9 ± 14.5
59 [50–69]
|
67.9 ± 18
70 [50.7–85.7]
|
Female gender
|
72 (48)
|
15 (35)
|
49 (59)
|
8 (67)
|
Top three cancer diagnosis
|
Gastric 26 (19)
Colorectal 14 (10)
Breast 13 (9)
|
Gastric 8 (19)
Colorectal 5 (12)
Breast 3 (7)
|
Gastric 15 (18)
Colorectal 9 (11)
Breast 8 (10)
|
Gastric 3 (25)
Breast 2 (17)
Cervical 2 (17)
|
Health care insurance
|
Contributive 70 (51)
Subsidized 56 (41)
Other 12 (8)
|
Contributive 42 (98)
Subsidized 0 (0)
Other 1 (2)
|
Contributive 24 (29)
Subsidized 49 (59)
Other 10 (12)
|
Contributive 4 (33)
Subsidized 7 (58)
Other 1 (8)
|
*HUSI: Hospital Universitario San Ignacio; INC: Instituto Nacional de Cancerología; HUSJ Hospital Universitario San José. |
Physicians and caregivers agreed in most cases that the patient had received drugs to control pain and other severe symptoms (physicians: n = 123, 89%; caregivers n = 125, 91% - absolute agreement physicians – caregivers 83% (Table 2).
Table 2. Affirmative responses by physicians and caregivers and agreement between them regarding end-of-life questions
Question
|
Affirmative response by physicians
n (%)
|
Affirmative answer by caregivers
n (%)
|
Proportion of absolute agreement (%)*
|
Did the patient receive palliative care?
|
120 (87%)
|
122 (88%)
|
78%
|
Did the patient receive treatment for pain or other symptoms?
|
123 (89%)
|
125 (91%)
|
83%
|
Did the patient have any explicit advance care directive?
|
8 (6%)
|
36 (26%)
|
34%
|
*Absolute agreement was calculated by adding the number of affirmative and negative responses in which physicians and caregivers agree, divided by the total number of ratings [10]. |
In 44 cases (32%), physicians reported that they spoke to the caregiver regarding the potential effect of hastening the patient's death because of the decisions made in the last phase of life. In 11 of those cases (25%), not postponing the patient's death was requested by caregiver. In 24 cases (17%), physicians responded that they spoke directly with the patient about the potential hastening of their death because of the intervention. Three patients requested to hasten their EoL, but their requests were not fulfilled. Physicians indicated they agreed regarding the non-use of resuscitation manoeuvres at the EoL with the patient in 26 cases, with patients' family members in 80, and other caregivers in 14 cases. There was absence of agreement on this matter in 9 cases.
In the absence of a conversation about interventions at the EoL, physicians indicated mostly they had not discussed this because the treatment option was “clearly the best for the patient” (n = 30, 22%) or that it was “not necessary to discuss treatment with the patient” (n = 18, 13%).
Few caregivers (n = 36, 26%) indicated that someone from the medical team spoke with the patient about medical treatment preferences during the last week of life, (vs. n = 71, 51%) no conversation, 12 (9%) did not know). In 23 of the 36 patients who had a conversation (67%), caregivers felt that the information provided by the medical team was unclear or incomplete. Caregivers perceived those medical interventions had prolonged patients´ life in 46 cases, and in 32 of these, the caregiver felt that this prolongation had increased the patient's suffering.
Physicians outlined eight patients had ACD (6%), from which three were explicit. For most cases (n = 90, 65%), physicians did not know if the patient had any ACD (no answer provided for 40 cases). Most caregivers (n = 71, 51%) indicated that their relative had no ACD or explicit requests, 3 did not know and in 36 cases, the caregivers indicated that the patient did have requests (26%) (10 formally, 26 informally formulated). The proportion of absolute agreement on whether the patient had an ACD was very low (34%, Table 2).