Grant: Operating Grant

Maintaining the dignity of patients who are approaching death is often cited as the clinical, philosophical, and moral foundation of palliative care. Research into the sources of dignity-related distress can provide tangible guidance on how to deliver holistic, quality, dignity-conserving, end-of-life care. To date, research into stressors that compromise dignity in those at the end of life has focused almost exclusively on cancer patients. We now need to examine dimensions of dignity and distress in those with other life-threatening diseases or conditions, in order to clarify and address the broad spectrum of suffering they carry. In Canada, there are several groups of people who do not regularly access palliative care, but who could benefit from it: those with amyotrophic lateral sclerosis (ALS), end stage renal disease (ESRD), chronic obstructive pulmonary disease (COPD), as well as the frail elderly. In this study, we will interview people from each of those four groups and their family caregivers to explore the factors related to dignity-related distress. We will use a new screening tool, the Patient Dignity Inventory, to help us identify the nature of their distress. We will compare the sources of their suffering and examine how this distress changes over time. This exploration will provide pivotal information in laying the groundwork for the provision of dignity-conserving palliative care for non-cancer populations approaching death.