Needs of relatives concerning the Advance Care Planning project

Principal investigator: Prof. Tanja Krones, University Hospital Zurich and Prof. Ralf J. Jox, CHUV
Researchers: Isabelle Karzig-Roduner, Dre Francesca Bosisio, Daniel Drewniak and Betty Althaus

Duration: January - December 2019
Funding: Federal Office of Public Health e (OFSP)

Caregivers of dependent persons are often implicated in decision-making on behalf of the people they are caring for, especially when these people lack decision making capacity. Caregivers are fundamental to the care of dependent people and should thus be involved in anticipating health care decisions in order to respect the wishes and preferences of the dependent person as closely as possible.

This research focused on the needs of family and friends in relation to anticipating health decisions. In this context, and in order to ensure consistency with the national framework "Anticipation of health decisions, particularly in the event of loss of decision making capacity", this research focused on the needs of family members for planning in general (planning), planning in relation to a current illness (care planning) and planning for anticipated care in anticipation of a temporary or permanent loss of the decision making capacity (advance care planning).

This research involved: systematic review of the literature, 8 interviews with experts in anticipating health decisions and 30 interviews with relatives and caregivers of dependent persons. This was conducted in the three linguistic regions of Switzerland.

Results indicated that relatives lack information about the various tools that enable them to anticipate health decisions. In particular, a majority of participants did not know what advance directives and advance care plans are - particularly in the French and Italian-speaking parts of Switzerland - and feel unprepared to play the role of health care proxy. Planning in general and planning day-to-day care require considerable energy and few resources are available to anticipate health decisions in anticipation of a loss of decision making capacity. In addition, professionals do not routinely include the health care proxies in treatment decision-making.

The recommendations at the end of this report are as follows:

1. The public needs to be better informed about available tools to anticipate care decisions for future situations of loss of decision making capacity. 
2. Professionals should encourage patients and their relatives to initiate advance care planning as soon as a life-threatening illness and/or threats to decision making are diagnosed. 
3. Patients and their relatives, in particular the health care proxy, should be informed about diagnoses and treatment options. This includes when the patient is still capable of making decisions.

• Rapport final advance care planning (in French)
• Synthèse Advance Care Planning (in French)