Multiprofessional Advance Care Planning and Shared Decision Making for End of Life Care

Study Overview
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Brief Summary
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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).

Official Title
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Multiprofessional Advance Care Planning and Shared Decision-making for End of Life Care MAPS Trial

Conditions
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Palliative Patients, Surrogate Decision Maker

Intervention / Treatment
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* Other: Advance Care Planning ACP
* Other: Control Group


Participation Criteria
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Eligibility Criteria
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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)

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Triple


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Active Comparator: Control Group<br>A routine care discharge planning with the social service | Other: Control Group<br>* A routine care discharge planning with the social service<br>|
| Experimental: Advance Care Planning ACP<br>Patient get a decision aid video and library and up to 3 consultations with qualified Advance Care Planning Facilitators. -------------------------------------------------------------------------------- | Other: Advance Care Planning ACP<br>* Patient of the intervention group get a decision aid video and library and up to 3 consultations with qualified Advance Care Planning Facilitators.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 | 
| 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 | 
| Any hospital stay |  | during 2 weeks three months after discharge and 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 |