NCARE (Nottingham Centre for the Advancement of Research into Supportive, Palliative and End-of-life Care)

Ways to communicate with patients about future illness progression and end of life: a synthesis of observational conversation and discourse analytic research

Project Duration

February 2011 – January 2013

Funder

University of Nottingham (Small Grant Funding, School of Nursing, Midwifery and Physiotherapy)

Project Staff

  • Ruth Parry (PI) 1
  • Victoria Land 2
  • Paul Drew 2
  • Merran Toerien 2
  • Jane Seymour 1

Staff Institutions

  1. The University of Nottingham
  2. University of York
 

Aims

  • To explore what is known about how people talk about possible and sensitive future matters from studies that have recorded and analysed naturalistic communication 
  • To collate and review evidence generated from linguistic, social science and clinical research that has examined communication about persons' future states, events, actions or circumstances

Methods

Systematic literature review including refining scope of question, electronic database search, citation tracking, bibliography search, quality assessment, data extraction, realist and narrative synthesis. 

Protocol available at PROSPERO: www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42011001626

Outcomes and Findings

Searching and data extraction are complete, synthesis is in progress. Paper describing methods has been submitted for publication. 

19 of the 2026 publications identified met the inclusion criteria, nine were social science, four clinical and six linguistics publications. Six examined oncology clinics, seven HIV and genetic counselling sessions, and the other six examined a variety of settings including home, clinical, and management. Communication practices that have been documented are: attempting to elicit talk on the topic via general questions about concerns (3/19); using allusive or general references and 'unpacking' these depending on responses received (7/19); using hypotheticals, especially hypothetical questions about future scenarios (12/19); raising concerns by treating them as general rather than individual matters (3/19); using a variety of resources to display sensitivity and seriousness (4/19); and steering the conversation from troubles to more optimistic aspects (3/19). The evidence suggests practices differ in how strongly they encourage talk about future difficulties. Most studies have focused on practitioners' behaviours, although there are indications that patients and carers use similar practices. 

Conversations about future illness, loss of capacity, and end of life can be initiated and pursued in a variety of ways. Asking general questions about concerns, and making allusive references show sensitivity and can open up the topics, but also allows their avoidance with relative ease. Sensitively posed hypothetical questions more strongly oblige recipients to talk about the topics. Although playing a role in maintaining hope, shifting conversations towards more 'optimistic' aspects also closes off further talk about difficulties: doctors may want to delay doing so. There are large gaps in knowledge, particularly about: patients' and carers' practices, the role of body movements, the practices that end of life care specialists use; and about when and how these conversations move towards the making of decisions and plans.

 

 

NCARE (Nottingham Centre for the Advancement of Research into Supportive, Palliative and End-of-life Care)

University of Nottingham
School of Health Sciences
Queen's Medical Centre
Nottingham, NG7 2HA


email: kristian.pollock@nottingham.ac.uk