Quality of Life: Main Goal of Palliative Care

Improving the quality of life is considered a central goal of palliative care, together with the prevention and relief of suffering. However, there is no broadly accepted definition of palliative care. Quality of life may be defined as the gap between expectations, hopes, and ambitions and the present experiences (Calman gap). With progression of the underlying disease and deterioration of physical and cognitive performance status, patients may still report good quality of life, if they reduce their expectations or shift the focus to other areas to find quality of life (response shift). However, patients experiencing rapid progression of severe illness may be overwhelmed with the next steps of deterioration and may not be able to adapt their expectations quickly. Using quality-of-life measures as a primary outcome parameter for palliative care may be difficult, as there are so many things that affect it that have nothing to do with the provision of palliative care. A large number of assessment instruments have been published for quality of life. The Short Form Survey of the Medical Outcome Study (SF-36) and its even shorter forms SF-12 and SF-8 are most prominent for health-related quality of life. The Functional Assessment of Chronic Illness Therapy (FACIT) and the European Organization for Research and Treatment of Cancer (EORTC) family of tools are used extensively for disease-related quality of life. The Schedule for the Evaluation of the Individual Quality of Life (SEIQoL) is a prominent example for the assessment of the individual quality of life. However, many palliative care patients can only complete short and simple assessment instruments. The EQ-5D uses only six items, but also single items have been tested. A number of concepts overlap to some degree with quality of life, such as overall happiness, meaning in life, sense of coherence, or quality of dying and death. However, with all these concepts, some components of the quality of end-of-life care and the quality of dying may be difficult or even impossible to measure.