Issues of Control in Palliative Care Decisions: The patien’s perspective Ms Lee, Susan, Monash University, Melbourne, Australia, Professor Kristjanson, Linda, Edith Cowan University, Perth, Australia, Dr. Williams, Anne, Edith Cowan University, Perth, Australia, Associate Professor White, Kate, Edith Cowan University, Perth, Australia |
The complexity of decision making in palliative care is emphasised by unpredictable illness trajectories and the number of individuals with interests in the decisions made. However little is known about the processes underpinning decision making in this area. This paper will present the preliminary findings of doctoral research that utilised grounded theory, in a symbolic interactionism framework, to examine decision making processes of patients and families, and their health care professionals. The objective of the study was to describe the social and psychological processes patients use to make decisions in the environment of palliative care. Data was collected from patients, families and health care professionals in Australia and Japan. Two data collection activities were undertaken: Fifty-nine (59) individual in depth interviews and over ninety (90) hours of non-participant field observations of decision making practices. The data was transcribed verbatim and managed using the Nud*ist Vivo computer software. The constant comparative method was used for analysing the data. Central themes from data analysis highlight that decision making around end of life care is complex, not transparent. Patients commonly experience issues in their perceptions of control over decisions about their care. This perception of control is described by patients in terms of their assessment of the character, approach and focus of their health professionals and in how they access information. Problems in their perception of control resulted in a patients experiencing a lack of confidence, distrust and uncertainty. These findings have implications for palliative care professionals in the development of decision making relationships that foster patient autonomy in decision making.
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