Families of dying excluded from 'critical conversations'


The families of people who are dying are too often excluded from "critical conversations" about what happens at the end of life, experts have warned.

More needs to be done to involve the dying and their loved ones to ensure people have the death they want, they said.

Dr Jonathan Koffman, senior lecturer in palliative care at King's College London, said around 500,000 people die in England every year, with around a fifth dying from cancer.

"How will we identify these individuals and provide them with impeccable assessment?," he said, adding "you can't undo these moments".

He said NHS care was variable for those who were dying and there were examples of poor care.

"There's inconsistency and poor quality care meted out to people at critical moments in their life," he said.

"Then there's poor management of really distressing symptoms.

"This is not a vocal constituency - they can't talk. And, of course, the family members who are subsequently bereaved are too wounded by those experiences to then talk and help us work out what to do better."

Around 50% of people die in hospital despite the fact most want to die at home, Dr Koffman said.

"The reality is that they don't get what they want."

He and his colleague, Dr Katherine Sleeman, clinical lecturer in palliative medicine at King's College London, called for better end of life training for doctors and nurses.

Dr Koffman said doctors and nurses were sometimes not very good at dealing with the psychological aspects of dying.

"Sometimes it's a case of don't just do something, listen," he said.

Dr Sleeman pointed to inadequate training in medical schools on end of life care, adding that just 19% of NHS trusts have mandatory training on the issue.

Only one in five hospitals have palliative care services seven days a week, despite recommendations to do so.

She said: "We should be meticulously assessing people dying - their social situation, who cares for them, where they live, their spiritual and psychological needs."

The Liverpool Care Pathway, which was introduced in the late 1990s, led to controversy after some patients were deprived of food and water.

It was introduced in an attempt to ensure people had a dignified and comfortable death.

But an independent review found some patients had been left thirsty, families were uninformed and decisions were sometimes taken by inexperienced staff.

Dr Sleeman said the LCP was problematic because it focused on processes and "ticking boxes".

When it was phased out some nurses said they did not know what to do, she said.

"That made me feel it was the right thing to do to get rid of it - it suggests they were using it far too much as a crutch," she said.

New draft guidelines were introduced by the National Institute for Health and Care Excellence (Nice) in July.

They stress the need to provide personalised care, good communication and shared decisions between staff, relatives and patients.