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  • Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

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Palliative care
Research
Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial
  1. Martin A Denvir1,
  2. Gill Highet2,
  3. Shirley Robertson1,
  4. Sarah Cudmore1,
  5. Janet Reid1,
  6. Andrea Ness1,
  7. Karen Hogg3,
  8. Christopher Weir4,
  9. Scott Murray5,
  10. Kirsty Boyd2
  1. 1Department of cardiology, Royal Infirmary of Edinburgh, Edinburgh, UK
  2. 2Department of Palliative Care, Royal Infirmary of Edinburgh, Edinburgh, UK
  3. 3Cardiology Department, Glasgow Royal Infirmary, Glasgow, UK
  4. 4Edinburgh Health Services Research Unit, Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  5. 5Primary Palliative Care Research Group, Community Health Sciences—General Practice, University of Edinburgh, Edinburgh, UK
  1. Correspondence to Dr Martin A Denvir; martin.denvir{at}ed.ac.uk

Abstract

Objective To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals.

Design Qualitative interview and focus group study.

Setting Community and hospital-based focus groups and interviews.

Participants Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11).

Results PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial.

Conclusions PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

https://doi.org/10.1136/bmjopen-2014-005021

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