To Acknowledge Dying in Palliative Home Care

A translational research project on recognizing and acknowledging the process of dying in palliative home care as a prerequisite to improve practice in end-of-life care A society`s humanity should be measured by the way in which it deals with its sick and most vulnerable members (Simone de Beauvoir, 1998). Life`s last phase, dying, must therefore become the focal point of its attention. This is all the more important as it concerns us all: since everyone dies, so the quality of end-of-life care should be one of health care`s most prevalent issues. Although numerous attempts to improve end-of-life care have been noted in recent years, both hospice work and palliative care (WHO 2002) are demonstrably successful attempts at alleviating suffering and making dying as humane as possible, many questions remain. As preliminary research has shown, one problem as yet largely unresolved is the fact that dying is often not recognized as such, and when it is, it is often not acknowledged. Yet if everyone involved is to come to terms with the situation, if the treatment, support and care are to be adapted accordingly, then such recognition is a basic requirement. In other words, the quality end-of-life care, possibly even in the familiar environment of one`s own home, depends enormously on the acknowledgement of dying. Acknowledging dying is a multi-layered process, in which physical, emotional, social and spiritual aspects all play a role, and it is shaped by health care professionals working together with those concerned and their relatives. The research project looks at how these processes take place in palliative home care and should, in particular, ascertain how an understanding between all parties, both professional and otherwise, can be achieved, so that an acknowledgement of dying will go along with the recognition of dying. Based on qualitative ethnographic research, the project combines a systematic analysis of the literature with participant observation in an outpatient palliative care service. The observation is to be complemented by interviews with involved health care professionals and patient`s relatives. For ethical reasons, the viewpoint of the latter group is to be obtained through retrospective interviews, at an appropriate interval after the death of the deceased person. The project is to provide fundamental knowledge on a key process in end-of-life care, and it is to be used to create the basis for subsequent development of implementation-tools.

A society`s humanity should be measured by the way in which it deals with its sick and most vulnerable members (Simone de Beauvoir, 1998). Life`s last phase, dying, must therefore become the focal point of its attention. This is all the more important as it concerns us all: since everyone dies, so the quality of end-of-life care should be one of health care`s most prevalent issues. Although numerous attempts to improve end-of-life care have been noted in recent years, both hospice work and palliative care (WHO 2002) are demonstrably successful attempts at alleviating suffering and making dying as humane as possible, many questions remain. As preliminary research has shown, one problem as yet largely unresolved is the fact that dying is often not recognized as such, and when it is, it is often not acknowledged. Yet if everyone involved is to come to terms with the situation, if the treatment, support and care are to be adapted accordingly, then such recognition is a basic requirement. In other words, the quality end-of-life care, possibly even in the familiar environment of one`s own home, depends enormously on the acknowledgement of dying. Acknowledging dying is a multi-layered process, in which physical, emotional, social and spiritual aspects all play a role, and it is shaped by health care professionals working together with those concerned and their relatives. The research project looks at how these processes take place in palliative home care and should, in particular, ascertain how an understanding between all parties, both professional and otherwise, can be achieved, so that an acknowledgement of dying will go along with the recognition of dying. Based on qualitative ethnographic research, the project combines a systematic analysis of the literature with participant observation in an outpatient palliative care service. The observation is to be complemented by interviews with involved health care professionals and patient`s relatives. For ethical reasons, the viewpoint of the latter group is to be obtained through retrospective interviews, at an appropriate interval after the death of the deceased person. The project is to provide fundamental knowledge on a key process in end-of-life care, and it is to be used to create the basis for subsequent development of implementation-tools.