The voices of dying subjects on hospice, pain, and dying

In recent decades, hospice has emerged as an important option for the care of people who are dying. This development has coincided with the demand for the freedom to choose death with dignity. In the hospice movement, a person's right to die -- with dignity -- is respected. If the promise of hospice can be realized then death may no longer be feared but will be understood for what it is -- the natural end of life. The overarching research question for this study is: What do dying subjects -- women and men aged 19 to the over 90 -- have to say about their experiences of hospice care, including control of their pain, and about their imminent deaths?; A central goal of the study was to capture the voices of dying subjects in order to investigate how dying subjects came to be in hospice and how they experience hospice care, in particular, how they dealt with and understood pain, what they had to say about their dying process, and how these concerns differed by the age and gender of the dying subjects. The interviews are framed by a substantive theory about awareness of dying, and the interpretation of the interviews is grounded in feminist thinking about knowledge production. The analysis reveals something of a disconnect between a central means by which hospice supports people in the dying process -- that is, through family involvement -- and the expressions by dying subjects themselves for more control of their dying process. In addition, the analysis indicates a gap between the goal of hospice to relieve the pain of dying subjects and the continuing pain experienced by the dying subjects interviewed. This disparity raises the question of the extent to which the living attach the same meanings to pain as the dying do. As the voices of dying subjects are heard more widely through studies such as this one the concerns dying subjects express should rise to the same degree of prominence in the hospice movement as the concerns their living advocates have championed. Dying subjects made clear how important it is for them to be able to talk about death and dying and the crucial importance for others to listen to them and hear what they have to say -- not only for the sake of the well-being of dying subjects themselves but for the living as well. A central lesson of this study is how much the dying can teach the living about the dying process.