Table 1

Possible mediators and associations between perception of dementia and patient comfort when dying (EOLD-CAD)
Possible mediators for family and physician perception of dementia as “a disease you can die from” and comfort P-value GEE regression for adjusteda analyses
Association with perception of dementia Association with EOLD-CAD comfort score
a and b. Factors affecting family decision making (Caron, Griffith and Arcand, 2005) [5]
a. Family attitudes and family-patient relationship
Family indicates being critical considering care for resident (3 categories; family, baseline) 0.40 0.03, interaction 0.08
Preference for decision making on care and treatment (family, baseline)
- family prefers to decide him/herself versus physician, or shared 0.39 0.96, interaction 0.08
- family prefers to leave decisions to the treating physicians, versus self or shared 0.24 0.89, interaction 0.10
Family’s degree of confidence that understood what patient would and would not have wanted with respect to his/her health care and treatment (three categories, family, after death) 0.37 0.17, interaction 0.01
Families’ evaluation of quality of the relationship with patient in terms of intensity and how warm before the patient’s dementia (five categories, family, baseline)b (Mediator) 0.046 0.01, interaction 0.28
b. Family – physician (or family – health care team including physician) interactions
b1 Quality of the family-physician relationship
Physician’s perception on how well family could cope with the patient’s situation, in general (three categories, physician, after-death assessment) 0.62 <0.001, interaction 0.93
Additional person involved in (discussions about) care for the patient in the last month of life (relative who had not or hardly been involved before) (physician, after-death assessment) 0.45 0.06, interaction 0.60
Physician’s satisfaction with how the communication on directives, goals of treatment, and care with the patient’s representative was going (5-point, physician, after-death assessment) 0.97 0.12, interaction 0.008
Family’s satisfaction with how the communication with the physician(s) was going (discussions on future care, goals of treatment, and care in the last phase of life) since previous assessment (zero to six months before) (5-point, family, after death) 0.49 0.65, interaction 0.11
b2 Frequency of contact with physicians or team
Family spoke to elderly care physicians in the last week of the patient’s life (zero to seven days, after-death assessment) 0.24 0.36, interaction 0.39
Family did not spent time in the nursing home in the last month of the patient’s life (family, after-death assessment) 0.94 0.24, interaction 0.02
Patient received visitors in last week of life, according to nurse or physician (four categories, physician, after death) 0.40 0.49, interaction 0.75
b3 Level of trust in relationship with physicians
Family indicated trust in physicians (5-point, family, after-death) 0.01 0.69, interaction 0.95
Family had relationship of trust with physician, as perceived by physician (5-point, physician, after-death) 0.57 0.48, interaction 0.39
b4 Concordance of values and beliefs between family and physicians or team
Degree to which all persons involved in treatment(s) and care (nursing home staff and family members), agreed about the best treatment(s) and care in the last month of the patient’s life as perceived by family (three categories, family, after death) 0.67 0.08, interaction 0.55
Degree to which all persons involved in treatment(s) and care, agreed about the best treatment(s) and care in the last month of the patient’s life as perceived by physicians (three categories, physicians, after death) 0.27 0.22, interaction 0.01
c. Care process
c1 Palliative care (indicators)
Treatment goal that took priority: palliative (including symptomatic)c versus other goal (physician)
- at day of death 0.75 0.54, interaction 0.45
- at baseline assessment 0.42 0.22, interaction 0.69
Any burdensome interventions in the last week of life [6] 0.88 0.71, interaction 0.81
c2 Perceived quality of end-of-life care
Family’s overall rating of care that patient received in the last week of life (5-point, family after death) 0.15 0.86, interaction 0.76
Physician’s overall rating of (quality of) care that patient received in the last week of life (5-point, physician, after death)b (Mediator) 0.02 0.005, interaction 0.56

EOLD-CAD, End-of-Life in Dementia-Comfort Assessment in Dying score; GEE, generalized estimating equations.

aAdjusted for potential confounders: assessment of EOLD-CAD by physician versus nurse (last column only), family education, and three variables that related to the time of the patient’s death: families’ baseline understanding, the physician’s assessment of perception of dementia mid-way data collection, and time since the first death in the study. P-values represent models without imputation (n = 122 to 143). Significance did not differ for models with simple imputation (n = 160).

bValues of the two mediators: quality of the relationship: excellent 46%, good 41%, moderate 10%, fair 3%, poor 1%. Physician’s overall rating of quality of care: excellent 6%, very good 37%, good 57%, fair 1%, poor 1%. When combining the last three categories to improve the distribution when used as an outcome variable in the association with the perception of the dementia, the P-value for quality of the relationship was 0.02, and for physician’s overall rating of the quality of care: 0.051.

cPalliative and symptomatic treatment goals both refer to comfort, quality of life and well-being, but differ as to whether prolongation of life is desirable.

van der Steen et al.

van der Steen et al. BMC Medicine 2013 11:105   doi:10.1186/1741-7015-11-105

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