Life expectancy discussions in a multisite sample of Australian medical oncology outpatients

Abstract

Objectives: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients' perceptions of whether they received too little, too much, or the right amount of information about life expectancy. Design: Cross‐sectional survey. Setting: Eleven large Australian medical oncology treatment centres. Participants: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014. Main outcome measures: Patients indicated whether the information about life expectancy they received aligned with their preferences. Results: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42). Conclusions: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail.

Dances With Denial: Have Medical Oncology Outpatients Conveyed Their End-of-Life Wishes and Do They Want To?

“…This requires that patients have an accurate perception of curability of disease. Consistent with findings from previous studies, [32][33][34] a quarter of the patients surveyed herein reported that they were not getting the information they wanted about their life expectancy. Most patients prefer their doctor to ask them before discussing the impact that cancer might have on their life expectancy.…”

Medical oncology outpatients’ preferences and experiences with advanced care planning: a cross-sectional study

“…Perceived importance of prognosis disclosure was not examined. However, previous studies in the literature indicate that the majority of patients perceive this to be an important part of their cancer care [39–41]. Additionally, restricting the question to willingness to participate in ACP in the next month- rather than a longer timeframe- may have also reduced the number of participants who were willing to engage.…”

Radiation oncology outpatients’ patterns of life expectancy discussions

“…In our study, only two‐thirds (64%) of respondents had discussed life expectancy information with at least one cancer care provider. This may have been a product of patient preference, as previous studies indicate that not all patients want to know their life expectancy (Mackenzie et al, ; Zafar et al, ; Zucca et al, ). There are a number of published frameworks, such as the “Serious Illness Conversation Guide,” that help cancer care providers to determine whether patients want to receive life expectancy information, and to deliver this information in a manner that it can be understood and recalled (Bernacki & Block, ; Gilligan et al, ).…”

“…Between 50% and 70% of cancer patients want to be told their life expectancy (Mackenzie et al, 2018;Zafar et al, 2016;Zucca et al, 2015). However, variation in approaches to communication about issues such as life expectancy has been reported in different patient groups (Gysels et al, 2012).…”

“…Life expectancy information should be provided in a manner that is responsive to the individual patients' preferences (Sisk & Mack, 2018), but this does not always occur. For instance, in an Australian study undertaken with 1,431 medical oncology outpatients from 12 treatment centres, 24% of patients reported receiving too little information about their life expectancy, while 4% received too much information (Zucca et al, 2015). Among 590 US patients with advanced cancer, 71% reported they wanted to be told their life expectancy, but only 18% recalled receiving this information (Enzinger, Zhang, Schrag, & Prigerson, 2015).…”