After you: conversations between patients and healthcare professionals in planning for end of life care
Top Cited Papers
Open Access
- 17 September 2012
- journal article
- Published by Springer Science and Business Media LLC in BMC Palliative Care
- Vol. 11 (1), 15
- https://doi.org/10.1186/1472-684x-11-15
Abstract
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. 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. 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. 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
This publication has 32 references indexed in Scilit:
- Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of lifeBMC Palliative Care, 2011
- Recording patient preferences for end-of-life care as an incentivized quality indicator: What do general practice staff think?Palliative Medicine, 2011
- ‘I live for today’: a qualitative study investigating older people’s attitudes to advance planningHealth & Social Care in the Community, 2010
- Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issuesBMC Palliative Care, 2010
- Implementing advance care planning: a qualitative study of community nurses' views and experiencesBMC Palliative Care, 2010
- Advance Directives and Outcomes of Surrogate Decision Making before DeathThe New England Journal of Medicine, 2010
- Health Care Costs in the Last Week of LifeArchives of Internal Medicine, 2009
- Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement AdjustmentJAMA, 2008
- Hope and advance care planning in patients with end stage renal disease: qualitative interview studyBMJ, 2006
- Developing palliative care practice in the communityNursing Standard, 2002