Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure

ArticleinPsycho-Oncology 22(12) · December 2013with11 Reads
DOI: 10.1002/pon.3337 · Source: PubMed
A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was -0.04 (95% CI, -0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure (p = 0.74). In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure. Copyright © 2013 John Wiley & Sons, Ltd.


    • "By contrast, there was little change on the item " disclosure of life expectancy " from 2006 to 2012. Many physicians and nurses around the world still have difficulty in talking to patients about life expectancy (Arbabi et al., 2010; Kumar et al., 2009; Mackenzie et al., 2013; Rogg et al., 2010), but particularly in Japan there is considerable reluctance to provide information about the end of life (Horikawa et al., 1999; Kawakami et al., 2001). The results of our study are thus consistent with recent research. "
    [Show abstract] [Hide abstract] ABSTRACT: Most cancer patients experience the time when a doctor must "break the bad news" to them, a time when it is necessary for patients to call upon their self-determination to aid in the battle with cancer. The purpose of our study was to clarify the percentage of times doctors deliver bad news to patients at the end of life in each of four different situations, and to define the most common recipients of this bad news. We compare these results for two timepoints: 2006 and 2012. The study had a national cross-sectional design consisting of self-completed questionnaires sent to all hospitals that provide cancer care. We mailed them to hospital directors in January and February of 2012, requesting a reply. The results of the same survey in 2006 were employed as a point for comparison. A total of 1224 questionnaires were returned during 2012. 1499 responses collected in 2006 were employed as reference data. Some hospital characteristics had changed over that interval; however, the new data obtained were representative for patients being treated in Japanese cancer care hospitals. In hospitals with 300-499, there were significant differences between 2006 and 2012 in the providing information about ("disclosure of cancer diagnosis," "therapeutic options for treatment," and "a life-prolonging treatment"). In addition, the likelihood of doctors delivering bad news to patients and family members (as opposed to family members only) at the end of life increased from 2006 to 2012. Our results suggest that the overall incidence of bad news being disclosed has increased, especially in hub medical institutions for cancer care. Advanced treatment options or domestic legislation may have influenced the frequency or type of bad news.
    Full-text · Article · Apr 2015