HEALTH experts have issued new guidelines explaining what happens when someone is dying amid concerns that death has become an alien experience for many of us.


Shallow or rattly breathing, swelling hands and sleepiness are among the changes described in the official NHS Scotland guidance, which is being promoted in the belief that having some idea of what to expect in the last days and hours of a person's life can be reassuring.

The advice has been issued as a survey revealed just 14 per cent of Scots have asked a family member about their end of life wishes.

While 84 per cent say quality of life is more important to them than how long they live, and 68% think society is more comfortable with discussing death today than 10 years ago - the vast majority of people have not recorded their own future care preferences.

Edward Small, an English tutor at Dundee University who has just completed a thesis on the culture of death in Scotland, said: "We used to be, as a nation, much more open about death. People were dying at home, in their communities. Neighbours would go along to see people after they had died."

However, he said, in 1937 the first funeral parlour opened its own chapel of rest and it became increasingly common for bodies to be taken away from homes. The advent of the NHS in 1948 also led to many more people dying in hospital.

Mr Small said: "The speed at which we became unfamiliar and then strangers and then alien to death is remarkable really."

The new guidelines highlight noticeable changes in the physical condition of the gravely ill, which can include:

A reduced appetite

Changes in breathing

Skin getting colder and changes in colour

Becoming restless and agitated

Mark Hazelwood, chief executive of the Scottish Partnership for Palliative Care, said in 1949 80% of people died at home - but now the figure was closer to 20%.

The survey, of 182 people in Scotland this spring, found more than three-quarters felt it would be easier for people to have their end of life wishes met if people felt more comfortable discussing death and bereavement. However, just 7% told the researchers, working on behalf of Dying Matters, that they had written down their wishes about their future care should they reach a point where they cannot make decision for themselves.

Mr Hazelwood said: "We have a health and social care system that was really intended and set up to fix people and its default response for good reasons is to treat and try and fix people, but if what is important to you is quality of life rather than clinging on for as long as possible it is really important you take steps to let your doctor know that."

He added: "I think what happens if we do not do that is the NHS will tend to continue to admit you to hospital, take tests and potentially you will be undergoing medical procedures which are futile and quite burdensome - not doing anything for your quality of life.

"If you look at what doctors choose towards the end of their lives, they do not choose that."

He called for a "cultural shift" where talking about death and planning it becomes a normal thing - the same way expectant mothers have a birth plan. At the moment, he said, even healthcare professionals can find it difficult to admit that someone is approaching the end of their life.

The new information about death, is published under the heading "What is dying like?" on the NHS Inform website. As well as describing how the body changes, there is a section which answers questions such as: How can I make the person more comfortable?

Lynne Huckerby, head of information services for NHS 24 - which oversees NHS Inform, said: "NHS Inform's Palliative Care zone was developed in partnership with a number of specialist organisations in end of life care and we are very pleased with the way it has progressed and how it has been received by those using it. The zone offers quality assured content to help and support people in Scotland seeking advice about palliative care and this information is regularly reviewed and updated to ensure it continues to meet the needs of the people who use the site."