‘We need to talk about death’

A RECENT survey showed that people in the North-East are the most uncomfortable talking about death. Which makes it surprising that the region is the first in the country to have its own ‘Good Death’ charter, the first document of its kind in Britain.

The charter is part of a wider health revolution in the North-East, driven by NHS North East, the region’s strategic health authority, which aims to dramatically improve the quality of health in this part of the world.

The charter was launched last month after research revealed that those who are dying, their families or carers, may not be receiving the end of life care and support they want, because they are not discussing death or dying.

Prostate cancer patient Stafford Scholes, 76, can vouch for our collective reluctance to face up to the realities of death. After being diagnosed with an aggressive form of prostate cancer in March 2003, Stafford, who lives in Esh Winning, County Durham, has spent the past six years living under its shadow.

Although he is currently in a period of remission, his consultant has warned him that he does not have much time left.

“I have responded quite well to chemotherapy so I have been given a bit of a respite,” says Stafford, who reacted to his diagnosis by setting up the North Durham Prostate Cancer Support Group.

“My consultant will not be drawn on the future but the statistics are fairly obvious. The next stage of my illness will no longer respond to therapy.

At that point we are talking about surviving up to one year,” he says.

Knowing the clock is ticking, Stafford set about putting his affairs in order, right down to where he wants to die – St Cuthbert’s Hospice in Durham City – and who he wants to officiate at his funeral.

The former industrialist, who set up Joblings glass research centre at Brancepeth Castle, near Durham City, only ran into difficulties when it came to his own family. So far, he has found it very hard to persuade his son and his twin daughters to face up to the fact that their father is going to die in the near future.

“I know it is not easy for them because it is not long since they lost their mother,” says Stafford, whose wife Stella, who devoted much of her time to helping people with disabilities, died of liver cancer in January 2008. “They don’t want to face the prospect of losing me. They don’t want to get used to it – but they will have to.”

Stafford feels that issues such as whether he wants to be resuscitated should his heart suddenly stop while he is at St Cuthbert’s should be discussed in advance by family members.

He has already made it clear, by filling in an advanced care planning document, that he does not want to be resuscitated. He has also ruled out other techniques which can be used to prolong the life of a cancer patient who might be suffering from difficulty swallowing.

Because his children did not want to discuss such matters with him, Stafford has given his son and his daughters copies of the document.

Stafford, who strongly supports the NHS North East Good Death initiative, says the fact he has been able to lead an active life despite his illness, may have made it difficult for his family to accept what is happening.

“They can’t see me deteriorating, but they have got to be prepared for what is going to happen,” he adds.

Stafford believes the medicalisation of death in the last half century, which means that six out of ten of us now die in hospital rather than our homes, may have made it more difficult for families to talk about death.

“A century ago, death, especially among children, was very common.

We also went through two wars, but most of the people who didn’t come back died in Europe or the Far East.

People were not having to talk to people who were dying,” he adds. “The object I would like to achieve would be to make it easier for people to talk about death, including their own death.”

Fiona Vallis, clinical services manager at St Cuthbert’s Hospice, agrees that there has been a huge historical change in how most people die.

“At the end of the 19th Century many people died of infections at home or industrial accidents. We didn’t have the NHS and people tended not to die in hospital. Death was witnessed, it was much more open in those days.”

Mrs Vallis says the hospice very much supports the Good Death initiative.

“We are trying to raise awareness that death is a natural event and happens to all of us. It is the one certainty in life.”

Mrs Vallis says that busy hospitals are not the right environment for someone who is dying, who does not need acute medical care. “If they are on an open ward they won’t get the privacy and dignity they need,” she says.

Professor Edwin Pugh, consultant in end of life care for NHS North East, is encouraged that more than 5,200 North-Easterners have already had their say on death and dying as part of a public consultation around the charter.

“Our aim is to get a clear understanding of the local population’s attitudes towards death and dying,” he says. “Then we can make sure our society, and the support services people rely on during these difficult times, respond with compassion to the needs of those people who are dying and their loved ones.”

■ To have your say on what constitutes a good death, visit agooddeath.co.uk

IN RESPONSE to recent research by the College of Optometrists, Specsavers is offering a free UV treatment with all scratch-resistant Pentax children’s lenses to help protect their eyes from the harmful rays of the sun. The offer is available to all children under the age of 16 with an NHS voucher.

An online poll of 2,000 adults found that more than three-quarters of parents do not protect their children’s eyes in the sun.

While almost half limit their children’s time in the sun and 76 per cent apply sunscreen to their skin, protection for the eyes does not appear to be a priority. It’s important to protect them in the winter, too, when the sun’s rays bounce off snow.

UV rays can damage the eye’s lens and retina, increasing the risk of developing certain conditions, such as cataracts and macular degeneration, which can lead to blindness, in later life.

“According to the World Health Organisation, up to 80 per cent of a person’s exposure to UV rays occurs before the age of 18 so it is especially important that parents take every step to minimise any longterm damage,” says David Rose, store director of Specsavers in Stockton.