Development and testing of a generic patient decision aid for end-of-life care

Objectives: The objective of this study was to develop and test a patient decision aid for end-of-life care to be used when some or all life-sustaining treatments have been withheld or withdrawn.

Methods: A multi-professional, multi-sectorial group together with patients and relatives used a systematic process to develop and test the patient decision aid, including alpha and beta testing.

Results: Healthcare professionals, patients and relatives were involved in the development and testing. The final Decision Helper included three areas with nine options: follow-up (outpatient clinic and general practitioner), palliative care (primary care, specialised palliative care team, hospital admission and hospice) and treatment level (intensive care, resuscitation attempt and nutrition via feeding tube). Most participants agreed that the amount of information in the Decision Helper was appropriate, that it clearly presented benefits and disadvantages and that it was useful in the value clarification process, helping to verbalise preferences and what is most important for patients.

Conclusions: Most patients and healthcare professionals found that the decision aid would be helpful in facilitating shared decision-making in an end-of-life conversation.

Practice implications: The decision aid will be usable in different healthcare setting ensuring that end-of-life care is in accordance with patients' wishes.