Improving quality of death - Terminal care should aim to preserve dignity of dying patients
Embargoed 0001 h (London time) 20 December 2002
Canadian authors of a study in this week's issue of THE LANCET highlight how the preservation of patients' dignity should be a priority for end-of-life care to minimise the physical and psychological trauma of terminally-ill patients.
Little research has been done which addresses the concept of dignity among terminally-ill people. Harvey Max Chochinov from the University of Manitoba and CancerCare Manitoba, Winnipeg, Canada, and colleagues assessed the extent to which dying patients perceive they are able to maintain a sense of dignity, and to identify how demographic and disease-specific factors relate to the issue of dignity.
213 terminally-ill cancer patients (with a life expectancy of less than six months) from two palliative care units in Winnipeg, Canada, were asked to rate their sense of dignity. The main outcome measures included: a 7-point sense of dignity item; the symptom distress scale; the McGill pain questionnaire; the index of independence in activities of daily living (IADL); a quality of life scale; a brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, and will to live; burden to others; and requirement for social support.
Surprisingly few patients-only 7% of the study population-expressed that loss of dignity was a great concern. These patients were far more likely than other patients to report psychological distress and symptom distress, heightened dependency needs, and a loss of will to live.
Harvey Max Chochinov comments: "This study points to the importance of dignity considerations in dying patients. Palliative care has long struggled with the extent to which it can address suffering beyond the realm of physical symptom distress. Although there have been many advances in our understanding and treatment for physical sources of discomfort in patients near the end of life, less headway has been made in our ability to intervene effectively when suffering lies outside the domain of somatic discomfort. Hence, understanding the dignity concerns of patients near the end of life could raise our sensitivity to many important aspects of human suffering, and provide the groundwork required to develop effective management strategies. Dignity-conserving care needs to become part of the palliative-care lexicon, and an overarching therapeutic aim and standard of care for all patients close to death."
In an accompanying Commentary (p 1997), Manish Agrawal and Ezekiel J Emanuel from the National Institutes of Health, Bethesda, USA, conclude: "Clearly, the data on dignity reported by Chochinov and colleagues need to be confirmed by larger studies of diverse groups of dying patients. However, the data do suggest that the dying process may not be as bad as many people fear-at least as regards dignity. The results also emphasise the importance of educating the public about the dying process, so that unrepresentative horror stories do not lead to misguided policy-making about death and dying."