"Aber schön wäre auch noch ein bisschen mehr". Untersuchung zur Erfassung der Lebensqualität von Palliativpatienten

„The legitimacy of QoL assessment is not in question; the challenge is how best to do it.“ There is no consensus of how best to measure quality of life: Numerous different and sometimes even contradictory definitions of the subject in question have led to a vast number of methods and instruments. Therefore an extensive literature research was essential to obtain a general idea of what constitutes quality of life and its assessment. There are three main methods of assessment: Interview, semistructured interview and questionnaire. Based on literature research, these three were then further investigated concerning their practicability. Next, close to 100 instruments for the assessment of quality of life were identified, of which four were chosen to be examined further. These were then applied to three patients of the palliative care ward in the Karl-Hansen-Klinik in Bad Lippspringe to find out more about their suitability for routine use. To gain a more personal insight on quality of life patients and experts, namely doctors and nurses on the palliative care team, were then interviewed. It became evident that even patients as frail as those in palliative care can (and indeed want to!) take part in clinical trials and research – they were grateful to participate. The results thus obtained can be used to individualize care and thereby improve patients’ quality of life. After thorough analysis of the results of literature research and interviews it became apparent that there is no universally accepted definition for quality of life. A restriction to health related issues – as convenient as it might be for medical practitioners – does seem too limited as most patients deem other things important in their lives. Patient B enumerates: „Wie gesagt, erstmal muss man sich selber helfen können, also essen, kleiden, gehen wäre schön wenn man kann, und Hände habe ich auch, und wenn noch die Gesundheit so weit da wäre, dann könnte man auch was anderes noch dazu tun ausser nur für sich zu leben. Das ist mir ein bisschen zu wenig. Telefonieren, Leute besuchen, in die Kirche gehen, mit anderen zusammensein und anderen helfen.“ („As said before, first you have to be able to look after yourself, to eat, to dress, to walk would be nice if you can, and I have hands, too, and with health, too, then one could do more than just to live for oneself. This would be too little for me. To talk on the phone, meet people, go to church, be with others and help others.”). Hence the author endorses Joyce’s definition of quality of life: „Quality of Life is not merely what the patient says it is, but what he tells himself or herself it is.” 2. However, this definition with its emphasis on the individual view further complicates the assessment of quality of life. In general, interviews seem predestined for individual assessments because of their flexibility and close involvement of the patient. Nevertheless, they are time-consuming, often unstructured, difficult to document and analyse. Still, they remain indispensable (pre-) forms of assessment for quality of life in daily clinical setting. Semistructured interviews are considerably more organised in that the questions offer a certain frame of reference and yet remain flexible and patient-centered. Questionnaires, however, follow a rigid concept and are therefore more formal and impersonal. Thus they are more suitable for use in clinical trials but can also provide helpful input in daily clinical work. By combining the results of literature research and application of the instruments, several recommendations can be made concerning the four chosen instruments: The EORTC QLQ-C15-PAL (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire – Core 15 – PAL) is, like most classical questionnaires, quick and easy to use. It seems therefore especially appropriate for use in clinical trials, but less applicable for use in daily clinical practice, as it is rather formal and sterile. The RSCL (Rotterdam Symptom Checklist) as symptom checklist offers a swift and uncomplicated view of the patient’s physical and mental condition. But it remains doubtful, whether a simple scanning of symptoms can actually define quality of life. The POS (Palliative Care Outcome Scale), especially designed for palliative care patients, differs pleasantly from other questionnaires by its open-ended question and a second part to be completed by staff. Its routine use is somewhat hindered by its complexibility – therefore it does not seem suitable for all patients in palliative care. The best choice for assessing quality of life in a clinical situation seems to be the SEIQoLDW (Schedule for the Evaluation of Individual Quality of Life – Direct Weighting). As a semistructured interview it promotes the relationship between doctor and patient and facilitates discussion. It provides important information, even though its application involves effort. The SEIQoL-DW with its individual concept adapts perfectly to the diverse needs of the patients. Every researcher has his or her own goals and preferences. This thesis provides assistance in finding a suitable method for assessing quality of life in palliative care. In spite of multiple difficulties to overcome, such an assessment is shown to be possible. Even though we might not always be able to convert the results into clinical practice, the assessment itself forces us to concentrate on the patient and to better understand his or her living and dying.