In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.

Although measuring outcomes is essential to ensuring palliative care effectiveness, there is an absence of properly validated measures in many countries. We undertook a cross-cultural adaptation and validation of the Palliative Outcome Scale (POS) into a Spanish (Argentina) language and cultural context. The methodology used a sequence of phases: 1) verification of conceptual equivalence (literature review, professional interviews, and patient focus groups); 2) multiple translations; 3) committee review; and 4) field testing. Psychometric analysis entailed evaluation of quantitative content validity, construct validity, staff and patients' ratings comparison, internal consistency, test-retest reliability, and responsiveness to change. Conceptual equivalence was achieved. Multiple changes were introduced after the translations and field testing in 65 patients and 20 professionals. Content validity was high for all but one item. Construct validity against a validated quality-of-life measure (European Organization for Research and Treatment of Cancer Quality of Life C-30) was confirmed (rho=0.74, P<0.0005). There was acceptable agreement between staff and patients (Cohen's weighted kappa >0.3) for 5/10, 8/10, and 6/9 items at each of three time-point evaluations and good correlation for all but one item (Spearman coefficient >0.7). Internal consistency was acceptable (Cronbach's alpha=0.68-0.69 and 0.66-0.73) for patient and staff ratings, respectively, and test-retest reliability showed very high agreement for every item (>0.80). The Argentine POS showed adequate responsiveness to change, although significant difference was reached for only 3 out of 10 items for patients and staff, respectively. Completion of the POS did not take more than 12 and 6 minutes for patients and staff, respectively. This study indicates that the Argentine POS is a valid and reliable measure of palliative care outcomes with advanced cancer patients.

Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

Background In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. Discussion Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Conducting well designed trials in the setting of terminal cancer is complex and ethically questionable. Most data retrieved are based mainly on clinical experience. Further high quality research is required to inform clinical recommendations regarding terminal care.