Failure to discuss prognosis is detrimental for patients nearing the end of their life

A failure to discuss prognosis with patients nearing the end of their life is having a detrimental effect on their appropriate care according to experts from the University of Sheffield's School of Nursing & Midwifery.

A ground-breaking study conducted into the provision of palliative and end of life care at two hospitals in England, found there was a significant gap between NHS palliative care policy and current practice.

Researchers discovered a lack of communication between medical staff and patients, and their families, with regards to their prognosis which severely limits their ability to be involved in important decisions about their care and treatment.

A doctor, who took part in the pioneering study, described how prognosis is not routinely discussed with patients in hospitals.

Improvements needed for palliative careHe said: “We never do that. I think for a variety of reasons. It’s not because we don’t want to provide information but quite often breaking bad news to a patient can be pretty difficult and we take a very different approach which may not be right but unless the patient asks for their prognosis we don’t tell them the prognosis.”

However, the report published in the NIHR Journals Library discovered many patients would like to hold such discussions. The son of a patient with palliative care needs explained his father’s preference for open discussions. He said: "He’s told the doctor, he said,'look I don’t want no shilly shallying, if there’s anything wrong I want to know just tell me straight'.”

Improving provision of palliative and end of life care is a priority for the NHS –ensuring an appropriately managed transition to a palliative approach to care when patients are nearing the end of life, is central to current policy. Within this context, a transition is defined as a shift from curative treatment, with a focus on cure and chronic disease management, to palliative care, with a focus on maximising quality of life.

During the study, which involved more than 500 patients and 50 medical staff, health care professionals reported difficulties in recognising that a patient had entered the last 12 months of life and admitted prognosis was not routinely discussed with hospital inpatients. This represents a barrier to a structured transition to palliative care being initiated.

An urgent need to build capacity in palliative care management amongst clinicians working in the acute hospital setting was also identified. Medical staff in particular need support to help them discuss prognosis, and care and treatment options at the end of life, with their patients.

Principal Investigator, Christine Ingleton Professor of Palliative Care Nursing at the School of Nursing and Midwifery, said: “The number of people requiring palliative care is increasing rapidly in the UK because of our ageing population. Most people want to make choices about the care and treatment they receive at the end of life.

"However, our research shows that a failure on the part of health professionals to discuss prognosis and goals of care means that many are not given this opportunity. Only a small minority of patients will receive care from specialist palliative care clinicians; most will be cared for by non-specialists."

Project manager, Dr Clare Gardiner, who conducted the study at the University of Sheffield and is now based at the University of Auckland, New Zealand, added: "Our research shows that these clinicians need much more support and training to help them provide appropriate palliative care for the significant numbers of hospital inpatients with palliative care needs. It's hugely important that people at the end of their life are helped by skilled clinicians to make decisions about what happens to them. After all, we only have one opportunity to get it right.”

The study, which was carried out in collaboration which Co-Principal Investigator Professor Merryn Gott from the University of Auckland, was funded by the National Institute for Health Research Service Delivery and Organisation (SDO) Programme. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the SDO Programme, NIHR, NHS or the Department of Health.

Additional information

To view the paper online visit http://www.journalslibrary.nihr.ac.uk/

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Contact

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Amy Pullan
Media Relations Officer
University of Sheffield
0114 229859
a.l.pullan@sheffield.ac.uk