Abstract

[corrected] This review of the literature intended to get insight into the international standards of quality of life assessment in palliative care, the conceptual and research literature addressing illness related quality of life and an examination of how nurse researchers define and assess this concept in the context of terminally ill cancer patients. Clearly stated goals for measuring quality of life as well as an understanding of the pragmatic and theoretical explanations for current trends in quality of life measurement are fundamental to this focus. Most clinicians and researchers agree that the primary goal of palliative care is to optimize the quality of life of patients with advanced incurable diseases through control of physical symptoms and attention to the patient's psychological, social and spiritual needs. Palliative care therefore is the achievement of the best quality of life for patients and their families. Consequently, the outcomes of care should be measured in terms of the extent to which this goal is achieved. Quality of life is difficult to define and measure; it is a multidimensional, dynamic and subjective concept. During the past decade, multidisciplinary research measuring the impact of cancer and its treatment on the quality of people's lives escalated rapidly in international literature but not in the German speaking European countries. This international escalation was accompanied by a proliferation of measurement strategies and tools. Nursing shared this interest and began to generate substantive research of the phenomenon. In the oncology and palliative care nursing societies quality of life and numerous closely related areas of symptom management rank among the highest research priorities. This paper examines nursing literature published between 1990 and 2004, retrieved through a computer review of MEDLINE and Cumulative Index of Nursing and Allied Health Literature. The review includes reports that systematically describe or measure the quality of life of people with a terminal cancer in palliative care as a variable of interest. This article also describes conceptual and operational definitions of quality of life and explores the implicit and explicit goals of research. Quality of life is a concept relevant to the discipline of nursing. Nurses, especially oncology and palliative care nurses, actively contributed to the development of the quality of life concept through instrument development and population description. Nurses working in German palliative care settings do change the quality of life of patients they care for, but there are no systematic standards of assessing these outcomes. There are challenges related to measuring quality of life in patient-focused palliative care and research. Systematic quality of life assessment in all palliative care settings will establish quality assurance and the further development of this very young discipline in Germany.

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