Quality end‐of‐life care

In recent decades it has been argued that technological advances in medicine have obscured the need for human compassion for the dying and their loved ones. We have come to realize that more humility about the reach of medicine, and more compassion, empathy, and caring for people approaching death is essential. There are approximately 50 million deaths in the world each year. If we make the modest assumption that each death profoundly affects the lives of five loved ones, then 5% of the world’s population are affected by this issue each year – a significant statistic relative to other health care issues. Many front line initiatives have evolved to improve the quality of end-of-life care, but we have only begun to identify the possibilities. Published literature reveals evidence that the quality of end-oflife care is often unsatisfactory. For example, Lynn et al. (1997) found that four in 10 dying patients had severe pain most of the time. Ahronheim et al. (1996) found that 47% of incurably ill patients with advanced dementia and metastatic cancer received non-palliative treatments. Solomon et al. (1993) found that 78% of health care professionals surveyed reported that they sometimes felt the treatments they offered patients were overly burdensome. Hanson et al. (1997) found that bereaved family members felt that communication concerning end-of-life care issues was poor.And, commenting on end-of-life care in general, Berwick contends, ‘evidence is mounting that the excellence of the status quo is a sentimental illusion’ (Berwick 1998). When medicine can no longer promise an extension of life, dying patients should not have to fear neglect, preventable pain or distress, or care that is inconsistent with their wishes. Rather, patients and their loved ones should be able to expect that health care professionals – and the health care system itself – will provide reliable, supportive and humane care. While many important innovations – such as hospice programmes and palliative medicine – have improved the care available to dying patients, changes in attitudes and practices in the broader health care culture have been more limited. A fundamental barrier in the quality of care at the end-of-life is the lack of clear measurement that is based on the perspectives of the people who matter most: patients and their families. Patient-centred Journal of Evaluation in Clinical Practice, 6, 1, 51–61