End-of-life decision-making and patient self-determination: A multi-stakeholder analysis

Advances in high technology medicine and life support technology have resulted in patients being kept alive much longer than was previously possible, although not always with good quality of life. Community members are demanding more say in how such technology is used, and more control over treatment decisions at the end stage of life. An increasing number of older people in the community, and concern about escalating costs of health care, make treatment decisions at the end stage of life a major public health issue. The provision of hostel and nursing home care will be an increasing component of health care costs.

A broad investigation of a range of end-of-life decision-making issues, including advance directives, proxies, pain management, palliative care, physician-assisted suicide and euthanasia is required to allow all stakeholders involved in these issues to express their perspectives and concerns. This thesis study, as part of the end-of-life decision-making projects being undertaken in the Department of Social and Preventive Medicine at the University of Queensland, will assist in addressing that requirement.

Twenty-eight key informant interviews and 15 focus groups were held in the developmental phase of the Projects. The aim of these interviews/groups was to identify issues of concern to health professionals and community members with respect to end-of-life decision-making and patient self-determination, and to include identified issues in the questionnaires developed for the Projects. Participants included: hospital – and hospice-based health professionals; community- and nursing-home-based health professionals; community-based professionals from related disciplines; and community members representing patients, carers and the broader community. Interviews and groups were tape-recorded and the transcripts analysed for this thesis study.

Issues were identified around the major theme areas, which included advance directives, proxies, pain management, palliative care, education and training, legal issues, physician-assisted suicide and euthanasia. A major issue identified by all groups was the need for improved communication between patients and health professionals, as well as among health professionals. The need for clear policies, protocols and guidelines was evident from responses of participants, particularly with respect to pain management, physician-assisted suicide and euthanasia.

Attitudes of all groups in the study were rated on four possible options for patient self-determination: advance directives, proxies, physician-assisted suicide and euthanasia. Older community members were most in favour of the use of advance directives, followed by nursing home staff. No group was against this option. In contrast, older community members were least in favour of appointing proxies to make their decisions in case of future incompetence, and nursing home staff were most in favour. Attitudes towards physician-assisted suicide were evenly divided, with three groups in favour, three against and one neutral. Surprisingly, there was less opposition to euthanasia with four results in favour, two against and one neutral. However, no group was strongly in favour of this option.

A final component of this study identified differences between nursing homes and other institutions in attitudes and practical consideration relating to patient self-determination in terminal care. Differences were identified with respect to use of technology, levels of dementia, resource allocation and palliative care, the role of the doctor in nursing homes and the long-term nature of nursing home care. The issues identified from the transcripts ensured that the questionnaires for the main project accurately reflected the concerns of the broader community, and the qualitative data will assist in the interpretation of findings from the main study.