Possible mediators for family and physician perception of dementia as “a disease you can die from” and comfort | P-value GEE regression for adjustedaanalyses | |
---|---|---|
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 |