Palliative Patients, Surrogate Decision Maker
Conditions
Brief summary
Multiprofessional Advance Care Planning and shared decision making for end of live care for terminal patients and their relatives. The aim of this study is to develop, implement and test a complex intervention for improving patients' preparation for and participation in end of life decisions. In cooperation with local, national and international partners, the investigators will focus on strategies to enhance advance care planning and shared decision making on end of life issues, and documentation and transferability of end of life decisions across health care settings in coordinated approach involving patients, their families and care givers (in and out of hospital).
Interventions
OTHERAdvance Care Planning ACP
Patient of the intervention group get a decision aid video and library and up to 3 consultations with qualified Advance Care Planning Facilitators.
OTHERControl Group
A routine care discharge planning with the social service
Sponsors
University of Zurich
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
TRIPLE (Subject, Caregiver, Investigator)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
-patients in which the treating physician on the ward would not be surprised if the patient died during the next year (surprise question of Weissman et al 2011) * male and female patients above 18 years of age * signed informed consent after being informed * patients able to appoint a surrogate decision maker (SM) and/or responsible physician to be contacted after discharge
Exclusion criteria
-patients not capable of speaking german * patients having no responsible physician to be contacted after discharge and no relative/future surrogate decision maker (SM) * inhouse patients being discharged within the next 2 days or ambulatory patients not regularly coming to the wards (at least every two month) * patients assessed by their physician to be in obvious denial of their situation (illness/prognosis)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| end of life wish on resuscitation known (if alive) or fulfilled(if dead) after 6 month by responsible physician and/or surrogate decision maker (SM) | during 2 weeks six months after discharge |
Secondary
| Measure | Time frame |
|---|---|
| decisional conflict scale (DCS), O Connor et al 1995 | at discharge and during 2 Weeks six months after discharge |
| Satisfaction with information and care, (see Detering et al 2010) | at discharge |
| Hospital Anxiety and Depression scale (HADS) | discharge and during 2 weeks six months after discharge |
| Having an Advance directive | at discharge, during 2 weeks three months after discharge and during 2 weeks six months after discharge |
| Having an appointed surrogate decision maker | at discharge, during 2 weeks three month after discharge and during 2 weeks six month after discharge |
| end of live decisions on last place of care, antibiotics for pneumonia, feeding tube, intravenous fluids, dialysis, intubation and sedation, | during 2 weeks six months after discharge |
| Decisions regarding end of life issues already having been made/taken place | during 2 weeks six months after discharge |
| open question on important medical decisions being made | during 2 weeks three months after discharge |
| Treatment against patients wishes | during 2 weeks three months after discharge and during 2 weeks six months after discharge, or 3 month after death |
| Distress of Patients or relatives because of content of the consultation | at discharge, during 2 weeks three months after discharge and during 2 weeks six months after discharge |
| Any hospital stay | during 2 weeks three months after discharge and during 2 weeks six months after discharge |
Countries
Switzerland
Outcome results
None listed