Preparing the ground – how do patients and doctors communicate about remaining life expectancy?

In this study, we searched our collection of 37 recorded doctor/patient/companion consultations for times when the matter of remaining life expectancy came up. There were ten instances where patients made requests about their remaining life expectancy. In seven of these instances, a companion accompanied the patient.  The most common way for life expectancy to come up involved the patient raising it when a doctor provided an opportunity for the patient or companion to steer the conversation – for instance: ‘Anything you’d like to ask me?’.

We found that rather than posing direct questions (e.g. ‘How long have I got?’), patients cautiously display their interest in the doctor giving them an estimate, and that they do so by using statements. In these statements, they did things like mentioning what they had been told or not told before, or saying they wondered if what they had been told before might be inaccurate.

We found that when raising the matter of life expectancy through statements, patients often included information about three matters:

  1. What they had already been told and how they felt about that
  2. Their readiness and/or reasons for wanting to know
  3. Their understanding that giving a precise estimate is difficult

When patients did not cover this within their initial talk, the doctors both encouraged them to talk about what they had already been told, how they felt, and their readiness or reasons for wanting to know, and the doctors themselves acknowledged the uncertainties entailed before going on to provide an estimate (In one case though, after a long intervening conversation in which the patient eventually said that she did not really want to know, the doctor did not give an estimate). 

We concluded that doctors, patients, and companions work together to prepare a conversational environment wherein emotional states and uncertainties have been addressed before any estimate is actually stated. This helps everyone to (a) assess the likelihood of the patient being very distressed by hearing an estimate, and (b) ensure that there is a shared understanding that it is not possible to be precisely accurate when estimating how long someone has left. In our suggestions for practice, we propose that practitioners should be mindful that rather than overtly requesting estimates, patients may seek them more cautiously. Also, that before delivering estimates, they can support patients to articulate their existing understanding and perspective on their prognosis, and their readiness to hear more.

Information

r.parry@lboro.ac.uk @CACEnotes  RealTalk@lboro.ac.uk   @RealTalk_EOLC 

Acknowledgements to: 

Loughborough University, University of Nottingham, LOROS Hospice Leicester, The Health Foundation and the NIHR. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research, Health Education England or the Department of Health and Social Care.