The patient perspective in end-of-life care: personal dignity, preferences and participation (WC2009-070)
Background
Starting date: 01/09/2009End-of-life care is of enormous societal importance. In the field of end-of-life research the care perspective and especially the physician perspective has been studied extensively. Based on these studies it is now time to investigate and build up knowledge on the patient perspective. The patient perspective is of special importance because in the terminal phase quality of life, which is highly subjective, is the prime focus of care and treatment.
While end-of-life care is an increasingly important topic in many countries, the openness about and regulation of end-of-life decision-making in the Netherlands provides a unique possibility for studying this subject. From the patient perspective three themes are essential: dignity, patient preferences and patient participation.
Preserving dignity is frequently mentioned by patients when considering the end of life and is a central goal in end-of-life care. The dignity concept can contribute to end-of-life research because it, more than regular quality-of-life concepts, goes beyond assessment of physical and psychosocial health status and includes ones perception of worthiness.
Patient-centeredness is dignity preserving. Key to patient-centeredness is taking account of and, when possible, following, patient preferences on care and treatment. When patients are competent, the best way to achieve this is by adequate patient participation.
However, towards the end of life a substantial number of patients is incompetent. For these patients advance directives (ADs) are often seen as a solution.