Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study

Abstract

There is uncertainty regarding the preferred content and phrasing of information when discussing life expectancy with terminally ill cancer patients and their carers. The objective of this study was to explore the various stakeholders' perceptions about these issues. We conducted focus groups and individual interviews with 19 patients with advanced cancer and 24 carers from three different palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from ten different sites in Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Participants' suggestions regarding the content of prognostic discussions included: explaining uncertainty and limitations, explaining the process involved with making survival predictions, and avoiding being too exact. Those patients and carers who wanted to be given a time frame mostly wanted to know how long the average person with their condition would live and/or be given a rough range. HPs had various views regarding ways to phrase life expectancy: days versus weeks versus months, likelihood of the patients being alive for certain events, a rough quantitative range and probabilities (e.g. 10% and 50% survival). However, most HPs said they would rarely if ever give statistical information to patients. This paper provides some potential strategies, words and phrases which may inform discussions about life expectancy. Further research is needed to determine the generalizability of these findings.