A first step in the development of an international self-report instrument for physical functioning in palliative cancer care: a systematic literature review and an expert opinion evaluation study.

Decline in physical functioning (PF) in progressive cancer increases risk of psychological problems, dependence, and distress, and it considerably affects quality of life. Despite this, assessment of PF has received little attention. Standardized, internationally endorsed assessment tools are needed that assess activities of relevance to palliative cancer patients from very low to high levels of PF. This study was done in cooperation with the European Association for Palliative Care Research Network. It was initiated to develop a computer-based symptom-assessment tool and aimed to 1) identify relevant existing PF-assessment instruments, 2) extract relevant items and classify them into meaningful subdimensions, and 3) construct unidimensional scales of selected PF domains. A systematic literature review was performed to detect relevant PF items from existing instruments. The International Classification of Functioning and Health was used to decide relevant subdimensions of PF, and expert panels within palliative cancer care were consulted to make decisions on activities to be included. One hundred and thirty-five instruments containing 743 items were included from the literature review. Two relevant PF subdimensions were revealed: Mobility (386 items representing 65 different activities) and Self-Care (143 items representing 30 different activities). The final PF tool consisted of two unidimensional scales: 24 hierarchically ranked Mobility items ranging from turning in bed to running, and 16 non-hierarchically ranked Self-Care items. Further testing of the instrument in a palliative cancer population is needed to develop the final PF instrument.

Pain assessment tools: is the content appropriate for use in palliative care?

Inadequate pain assessment prevents optimal treatment in palliative care. The content of pain assessment tools might limit their usefulness for proper pain assessment, but data on the content validity of the tools are scarce. The objective of this study was to examine the content of the existing pain assessment tools, and to evaluate the appropriateness of different dimensions and items for pain assessment in palliative care. A systematic search was performed to find pain assessment tools for patients with advanced cancer who were receiving palliative care. An ad hoc search with broader search criteria supplemented the systematic search. The items of the identified tools were allocated to appropriate dimensions. This was reviewed by an international panel of experts, who also evaluated the relevance of the different dimensions for pain assessment in palliative care. The systematic literature search generated 16 assessment tools while the ad hoc search generated 64. Ten pain dimensions containing 1,011 pain items were identified by the experts. The experts ranked intensity, temporal pattern, treatment and exacerbating/relieving factors, location, and interference with health-related quality of life as the most important dimensions. None of the assessment tools covered these dimensions satisfactorily. Most items were related to interference (231) and intensity (138). Temporal pattern (which includes breakthrough pain), ranked as the second most important dimension, was covered by 29 items only. Many tools include dimensions and items of limited relevance for patients with advanced cancer. This might reduce compliance and threaten the validity of the assessment. New tools should reflect the clinical relevance of different dimensions and be user-friendly.

Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit.

BACKGROUND: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy. METHOD: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit. RESULTS: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent. CONCLUSION: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.