Table 3 Participatory decision making of the family caregivers
A) Percentage of caregivers who answered “no” at Visit 1 | B) Percentage of caregivers who answered “no” at Visit 1 but participated in decision making before Visit 2 (or planned to do so soon) in parentheses: “yes” or “yes, I plan to participate soon” at Visit 2/ “no” at Visit 1 | ||
|---|---|---|---|
1. I carefully thought about the following topics: | |||
Considerations | 1a. Symptoms, course of dementia, prognosis | 3% (1/36) | 100% (1/1) |
1b. Goals of palliative care; palliative/ hospice care services | 61% (22/36) | 72% (16/22) | |
1c. Life prolonging measures: tube feeding admission to hospital, resuscitation; consequences for the patient | 11% (4/36) | 75% (3/4) | |
1d. Pharmacological, non-pharmacological symptom relief (e.g. dyspnea, pain, agitation, anxiety, delirium) | 20% (7/36) | 14% (1/7) | |
1e. Dying, death (what is to be expected when the patient is dying) | 11% (4/36) | 50% (2/4) | |
Level of information exchange | 2. I discussed following topics with the doctor/ care team: | ||
2a. Symptoms, course of dementia, prognosis | 17% (6/36) | 50% (3/6) | |
2b. Goals of palliative care; palliative/ hospice care services | 81% (29/36) | 58% (17/29) | |
1c. Life prolonging measures: tube feeding admission to hospital, resuscitation | 28% (10/36) | 10% (1/10) | |
2d. Pharmacological, non-pharmacological symptom relief (e.g. dyspnea, pain, agitation, anxiety, delirium) | 26% (9/35) | 67% (6/9) | |
2e. Dying, death (what is to be expected, when the patient is dying) | 42% (15/36) | 67% (10/15) | |
Caregiver participation in decision making | 3. I made a decision regarding the following topics: | ||
3a. Goals of palliative care; palliative/ hospice care services | 67% (24/36) | 67% (16/24) | |
3b. Life prolonging measures: tube feeding admission to hospital, resuscitation; consequences for the patient | 28% (10/36) | 80% (8/10) | |
3c. Pharmacological, non-pharmacological symptom relief (e.g. dyspnea, pain, agitation, anxiety, delirium) | 26% (9/35) | 67% (6/9) | |
3 d. Dying, death (what is to be expected when the patient is dying) | 42% (15/36) | 60% (9/15) | |
4. I suggested a certain kind of treatment/ care to the doctor/ care team | 42% (15/36) | 40% (6/15) | |
5. I expressed doubts about treatment/care that the doctor/ care team suggested | 47% (17/36) | 18% (3/17) | |
6. I gave my opinion (agreement or disagreement) about treatment and care | 17% (6/3) | 33% (2/6) |