Oral Presentation COSA-IPOS Joint Scientific Meeting 2012

A qualitative analysis of advanced cancer patient and carer responses to a communication support intervention prompting early discussion of prognosis and end-of-life care (#75)

Adam Walczak 1 , Inge Henselmans 2 , Josephine M Clayton 1 , Martin H N Tattersall 1 , Patricia M Davidson 3 , Jane Young 4 , Ronald M Epstein 5 , Phyllis N Butow 1
  1. CeMPED, University of Sydney, Sydney, NSW, Australia
  2. Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
  3. Cardiovascular and Chronic Care Centre, Curtin University of Technology Sydney, Sydney, Australia
  4. Sydney School of Public Health, University of Sydney, Sydney, Australia
  5. Department of Family Medicine, University of Rochester Medical Centre, Rochester, New York, United States of America

Background: Previous literature suggests that while discussing end-of-life (EoL) issues can be challenging for patients, carers and oncologists alike, interventions to promote patient question asking may improve communication and EoL care.

Aim: To explore responses to a Communication Support Intervention (CSI) promoting discussion of EoL issues.

Methods: Patients with heterogeneous cancer diagnoses with <1-year life expectancy, and their primary carers, met with a trained nurse to explore their cancer journey, goals, concerns and a Question Prompt List (QPL) focussed on EoL-issues. Prognosis and Advance Care Planning (ACP) content in the QPL was highlighted. CSI sessions were audio-taped and transcribed verbatim. Two researchers analysed 31 sessions using thematic text analysis in NVivo before reaching data saturation.

Results: Sessions involved 31 patients (male=18/female=13, age(mean)=62.9) and 11 carers (male=2/female=9, age(mean)=60.4). Intent to use the QPL appeared to be related to information needs, involvement in care and readiness to discuss EoL-issues. Many participants expressed a wish not to know about their life expectancy, saying that estimates would depend on treatment outcomes, that doctors are unable to provide estimates, or that they dealt with the disease by not looking ahead. Despite this, a majority displayed interest in ACP, often motivated by experience of EoL in others, the presence of clear treatment preferences, concerns about carers or recognition that ACP is valuable regardless of their illness. Timing emerged as a reason not to address EoL issues, many maintaining that it was too early for these discussions. However, none clearly articulated when such discussions might be appropriate. Some carers seemed more interested in the QPL than patients.

Conclusions: This study provides insight into the reasoning underlying patients’ wish to/not to know about life expectancy and ACP. The emerging themes, related to patients’ and carers’ responses to an EoL-issues focused QPL, might inform quantitative analysis of intervention effectiveness.