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Open Access Highly Accessed Research article

After you: conversations between patients and healthcare professionals in planning for end of life care

Kathryn Almack1*, Karen Cox1, Nima Moghaddam2, Kristian Pollock1 and Jane Seymour1

Author Affiliations

1 School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Queen’s Medical Centre campus, B Floor, South Block Link, Nottingham, NG7 2UH, UK

2 Clinical Psychology, Bridge House 1207, University of Lincoln, Brayford Pool, Lincoln, LN6 7TS, UK

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BMC Palliative Care 2012, 11:15  doi:10.1186/1472-684X-11-15

Published: 17 September 2012

Abstract

Background

This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.

Methods

The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.

Results

Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.

Conclusions

This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

Keywords:
Advance care planning; Palliative care services; Preferred place of care; Qualitative research