Problems of role change in the establishment of hospice-oriented terminal care environments

Abstract

This thesis examined 1) the roles of terminally ill patients and their families and of doctors and nurses interacting in terminal care environments and 2) the environments of persons afflicted with a terminal illness in order to isolate significant factors. The terminally ill were defined as those persons diagnosed as having a fatal, incurable illness for whom nothing more in a curative way could be done. For the purpose of this study, only those patients afflicted with cancer were subjects of this study. Terminal care environments were defined as the home, the hospital or the hospice and encompass the family and others who are meaningful to the sick person. Terminal care environments were examined based on three variables: pain relief and symptom control, the ability of the family to cope and the availability of the health services. This study began after medical intervention and prognosis had taken place and focused upon subsequent care. It was undertaken in the Wellington area and carried out with the permission of general practitioners in charge of the cases and the Community Health Service. Observations and interviews with terminally ill patients were undertaken over a six-month period. Two independent but parallel developments have contributed to the model of health care operating in Wellington for the care of the terminally ill cancer patients. Hospice-concept care programs appear to have evolved in the Wellington area coincidental with 1) the creation of the oncology nurse specialty position by the Community Health Service and 2) the practice of admitting overflow cancer patients from Wellington Hospital to the then Calvary Hospital, now The Mary Potter Hospice, and the establishment of Te Omanga Hospice in Lower Hutt. The health services program of home care achieved a fit with a voluntary hospice-concept of care and a service model evolved which has provided a significant terminal care environment for dying patients and resulted in changing role perceptions for patients and caregivers. It was found in the study that the use of the dying role was crucial to changing role perceptions of terminally ill patients and their families and of doctors and nurses interacting in hospice-oriented terminal care environments. It was further found that the most significant factor in the terminal care environment was the emergence of hospice-concept care which appeared to fill a deep need in terminally ill patients and their families. Some tensions were observed surrounding the lack of use of the dying role by doctors, resulting in patient dependence and apparent role strain in doctors. The role of the oncology nurse appeared overdemanding. Lines of communication from nurses to doctors appeared deficient and same role ambiguity about the roles of oncology nurses was apparent. It was noted that hospices were supported by voluntary agencies and were not structurally integrated into the health care delivery system. These observations may have implications for individuals, families, medical personnel and health care planners.