PATIENTS close to the end of their lives are not always receiving proper emotional support to help them have the death they want, a Scottish study shows.
Previous research has found that most would rather die in their own home than in hospital.
But researchers in Edinburgh found that most people who died after suffering serious illness never had a conversation with staff about how they might be cared for in their final months.
Experts and campaigners said death was still a taboo among medical staff and the public, denying patients the chance to express their wishes.
The researchers found that the lack of planning and support around death could place unnecessary stress on patients’ families.
They spoke to patients and doctors in Scotland and England about their experiences in the year before they died, and asked patients’ families to track all their contacts with the NHS.
The researchers found that 80 per cent of patients with advanced illnesses were likely to have two or three medical conditions at the same time.
But despite this there was a failure to co-ordinate their care and prepare them for what was likely to happen.
The researchers found that the absence of care plans for patients could prevent patients from dying at home as they wished to do.
They said that doctors needed to do more to identify patients who may be approaching the final year of their lives and talk to them about how they would like to be cared for.
Professor Scott Murray, St Columba’s Hospice Chair of Primary Palliative Care at the University of Edinburgh, said: “This study shows that patients with a number of terminal illnesses who appeared to be approaching the end of their lives had the most need for co-ordinated, joined-up health care.
“If patients and doctors felt more able to talk together and discuss their wishes, then health services could be much better coordinated and responsive to patients’ choices.”
Dr Bruce Mason, a research associate in palliative care research, said some doctors and patients were very open and willing to talk about the subject of death.
“Professionals often tend to think they don’t want to bring the subject up in case it upsets the patients and they would rather wait until it is much later on. ” the researcher said.
Dr Mason said patients may not think that the illnesses they are suffering would lead to their deaths and so did not feel the need to talk about it.
He said that many people ended up dying in hospital when they would have preferred to die at home.
Margaret Watt, chair of the Scotland Patients Association, said
“Nobody wants to talk about it because they do not want to think about death,” she said.
“There is a lot of education we need to do with patients on this subject.”