Respiratory disease is the third most common chronic illness in the United Kingdom. For people with advancing non-malignant respiratory disease (NMRD), their quality of life and decisions about care are determined by end-of-life discussions. Such discussions are particularly important as the patient starts to experience acute exacerbations of their condition including repeat hospital admissions.
The purpose of this project was (i) to understand more clearly what helps and hinders end-of-life conversations with patients and carers and (ii) to evaluate the impact of an end-of-life conversation framework for people with non-malignant respiratory disease.
The End-of-Life Care (EoLC) Conversation Framework comprised: (i) dedicated patient visits from respiratory specialist nurses, in addition to routine visits to monitor disease progress and care management, (ii) support from respiratory nurses with palliative care training, (iii) fortnightly clinical supervision for the respiratory nurses, and (iv) structured written reflections of the EOLC conversation visits.
The Framework was evaluated through semi-structured interviews with the nurses and analysis of the documented EOLC conversation visits.
Eleven patients were recruited during the two years of the project and 118 conversation episodes were documented. Most of the patients did engage in end-of-life conversations. The likelihood of having an EOL conversation was largely dependent on the interaction between the nurse and patient but very clearly guided by the patient’s wish to discuss. End-of-life conversations were rarely started and completed in a single visit, emphasising the importance of building a rapport with the patient.
A number of factors act as barriers and facilitators to nurses having end-of-life care discussions with patients and carers. The unpredictable disease trajectory is a clear barrier and, occasionally, was used as an overt reason for avoiding EoLC discussions. The two factors to come through most strongly were the distinction between whether a patient is ready or willing to have such discussions and the presence of relatives. The latter barrier resulted in all parties skirting around the issue of the EoLC conversation.
Each component of the EOLC conversation framework was perceived to influence the likelihood of the conversation taking place. Dedicated visits allowed the BLF nurses to commit time to building a relationship with the patient and family, allowing conversations to develop more naturally. The BLF Nurses reported that the palliative care training and clinical supervision gave them more confidence to talk about end-of-life care and opportunity to review their practice. The interviews at the beginning and end of the project also showed a sense of personal growth for the nurses; the structured written reflections became more detailed as the project progressed and were valued by the nurses. However, the extent of guilt and fear reported by nurses in these reflections emphasises the need for regular supervision.
Stephen N, Skirton H, Woodward V, Prigmore S, Endacott R, (2013) End-of-Life discussions in non-malignant respiratory disease: a systematic review. Journal of Palliative Medicine16:555-565
This project was supported by a King’s Fund Partners for Health grant.
Professor Ruth Endacott, Plymouth University
Nicole Stephen, Plymouth University
Samantha Prigmore, St George's Hospital, Tooting, London (on behalf of The British Lung Foundation)
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