The impact of different models of specialist palliative care on patients' quality of life: a systematic literature review

The extent to which a doctor or health professional can make a valid assessment of a patient's quality of life, anxiety and depression was investigated in a series of cancer patients. Doctors and patients filled out the same forms, viz. the Karnofsky, Spitzer, Linear Analogue Self Assessment Scales and a series of simple scales designed for this study, at the same time. Correlations between the two sets of scores were poor, suggesting that the doctors could not accurately determine what the patients felt. A further study examining the reproducibility of these scales demonstrated considerable variability in results between different doctors. It is concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from the patients themselves and not from their doctors and nurses.

The objective of this report is to explore methodologic issues on the basis of a systematic review of the literature of effectiveness research on palliative cancer care with regard to selection and characteristics of a study population, interventions, and outcome assessment. A systematic review was performed of randomized clinical trials on comprehensive palliative care with quality assessment of the studies by three independent observers, using predefined quality criteria. In the literature search, 11 relevant studies were identified. Without exception, methodologic problems were experienced. In two studies, the problems were so severe that no results were reported. Problems were associated with the recruitment of a study population in 10 studies, its homogeneity in six, patient attrition in four, defining and maintaining the contrast between the strategies in six, and selection of the outcome variables in four. Effectiveness research in palliative care is complex and has many pitfalls. To enhance the quality of future palliative care trials and the validity of their results, we particularly stress the importance of careful case finding, strict eligibility criteria, precise documentation of the process of care, and comprehensive outcome measurement. The relation of structure, process, and outcome variables in comprehensive palliative care should be further explored. It is a challenge for future research to link patient outcomes to the quality of care, independent from the autonomous course of the disease and from personal characteristics.

To investigate the current problems and needs of terminally ill cancer patients and their family members, and to discover their views of hospital, community, and support team services. Prospective study of patients and families by questionnaire interviews in the patients' homes. Inner London and north Kent (London suburbs). 65 Patients, each with a member of their family or a career. Ratings of eight current problems and ratings and comments on three services-hospital doctors and nurses, general practitioners and district nurses, and the support team staff-obtained after a minimum of two weeks' care from palliative care support teams. Effect of anxiety on the patient's nearest career. and symptom control were rated as the most severe current problems by both patients and families; a few patients and families identified other severe problems. Families' ratings of pain control, symptom control, and effect of anxiety on the patient were significantly worse than the patients' ratings (p less than 0.05). Support teams received the most praise, being rated by 58 (89%) patients and 59 (91%) of family members as good as excellent. General practitioners and district nurses were rated good or excellent by 46 (71%) patients and 46 (71%) family members, but six (9%) in each group rated the service as poor or very bad, and ratings in the inner London district were significantly worse than those in the outer London district. Hospital doctors and nurses were rated good or excellent by 22 (34%) patients and 35 (54%) of family members, and 14 (22%) patients and 15 (23%) family members rated this service as poor or very bad. Negative comments referred to communication (especially at diagnosis), coordination of services, the attitude of the doctor, delays in diagnosis, and difficulties in getting doctors to visit at home. Family members were more satisfied with the services than were patients. Palliative care needs to include both the patient and family because the needs of the family may exceed those of the patient. Support teams and some hospital and community doctors and nurses met the perceived needs of dying patients and families, but better education and organisation of services are needed.