Aim. The aim of this paper is to report a study exploring patients’ understanding of their discussions about end-of-life care with nurses in a palliative care setting.
Background. It is assumed that nurses are central players in patients’ major decisions about their care, yet minimal information is available about the complexity of patient–nurse interaction in palliative care, and patients’ views of the impact of such interactions on decisions that are made.
Method. A modified version of grounded theory was used to collect and analyse interview data collected in 2001–2002 with a convenience sample of 11 patients in a palliative care setting. Interviews focused on each patient's selection of two decisions they had made in the past 6 months that had involved nurses in the decision-making process.
Findings. Processes were identified between nurses and patients that facilitated or blocked open discussion and discernment of patients’ preferences for care. Six approaches that patients used in their conversations with nurses about their care: wait and see, quiet acceptance, active acceptance, tolerating bossiness, negotiation and being adamant. These approaches are described in terms of how they assisted or impeded autonomous decision-making.
Conclusion. Palliative care patients often adopt passive roles and tend not to engage in important decision-making, for various reasons. Professionals need to be made aware of this, and should facilitate an open, trusting relationship with patients in order to ensure that important information passes freely in both directions. Professionals should learn to prioritize patient participation and negotiation in their work. With further research, it should be possible to identify the factors that will allow patients to take a more pro-active role in making decisions about their care, where desired.