After cancer returned for a third time David (known as DD) and his family decided to forego further treatment and enjoy life, his mother Sacha Langton-Gilks is keen for other families to think positively about end-of-life preparation and talk of a death plan as we do for a birth plan
Then in May 2012, the cancer re-appeared for the third time: it was clear he could not be cured. People advised the family to stay positive and try everything to keep DD alive. However, the teenager and his parents decided to be positive in a different way: by rejecting the powerful medication that might prolong his life by a very short time, and by focusing on enjoying the time he had left.
“He’d already suffered high dose chemotherapy and it hadn’t worked,” says his mother. “Rather than trying to prolong his life with all that entailed, we chose maximum quality of life in a shorter time because that was right for our child.”
Mrs Langton-Gilks 47 who lives near Shaftesbury, Dorset, with husband Toby and children Rufus, 17, and Holly, 12, says that without doubt the way her son died “is going to be the single biggest achievement of my life. Instead of going back and forth to hospital hoping he was going to be cured and putting him through more suffering, we focused on keeping him calm and comfortable at home.
“He had a stonkingly good party with all his friends. But mainly we just chilled out and kept things as normal as possible.”
David died three months later at the age of 16. His last lucid words were “I love it here”.
Mrs Langton-Gilks is keen to help other families think positively about end-of-life preparation and in May gave a powerful talk about her son’s death at an event for parents run by the Brain Tumour Charity[www.thebraintumourcharity.org/dyingwell]. She is part of a growing movement of professionals, carers and patients who say we should approach death the same way as we do that other universal rite, birth – with ante-mortem classes, groups and end-of-life midwives.
“You wouldn’t dream of giving birth without some idea of what to expect and a birth plan” says Mrs Langton-Gilks. “Yet we face death with no equivalent preparation. We need to get to the point in society where it is as acceptable to talk about a death plan as a birth plan.”
Hermione Elliott agrees. In 2011, the midwife and palliative care nurse founded Living Well, Dying Well, a non-profit training provider for end-of-life doulas; like birth doulas, these are self employed laypeople who provide practical and emotional support to families during this rite of passage, either voluntarily or for a small charge.
Seventy per cent of Britons say they would prefer to be at home when they die, yet half of us spend our final moments in hospital.
“We handed over death to doctors many years ago,” said Ms Elliott. “Families don’t encounter it in a natural way and lack confidence. A lot of people don’t even know they’re allowed to die at home or they can get funding for adjustable hospital beds or aids that they can use at home to make it easier.
“The kneejerk reaction is often to dial 999 if there are difficult symptoms, but paramedics may be duty-bound to take someone to A&E which is often not the right place for someone who is at the end of their life,” she said.
Others are doing similar work. Susan Court, who works for terminal illness care charity Marie Curie, is running a lottery-funded pilot project in Wales providing “ante-mortem” sessions in which family carers referred by their GPs can get information and support to prepare for the death of a loved one: sessions cover anticipating grief and guilt, dealing with end-of-life symptoms such as loss of appetite and breathing changes, and practical matters such as coping with the sudden end to carers’ benefits after a loved one dies.
“Marie Curie nursing services tend to support people at the very end of their lives,” she said. “But feedback from carers is that there are many things they wish they’d known far earlier. This is very much about building carers’ confidence before any crisis.”
The government is also keen to get people thinking about the end of life. ItsAdvance Care Planning initiative, introduced nationwide in 2008, is similar to a birth plan – only it enables people to communicate their dying wishes rather than what they want for the birth. For example, one person might want to refuse treatment and to die at home with only close family nearby and the cat on the bed; another might want to go and watch Manchester United, have lots of visitors and die in a hospice.
It may sound morbid but US research suggests that making such wishes known may even help us live longer. And in a UK study of almost 1,000 patients in North Somerset, three-quarters of those who had completed advance care plans died in their preferred place, usually home. Just one in 10 died in hospital – significantly fewer than the national average of 50 per cent.
Of course death, like birth, does not always go to plan. All the more reason, then, to make it part of common conversation, says Barbara Chalmers, founder of award-winning website finalfling.com. Here people can get help to get their affairs in order, write bucket lists, upload precious photos, tell their life stories and even plan their final farewells.
“We want to be to death what Mumsnet is to birth,” says Ms Chalmers, a communications consultant whose website gets 8,000 visitors a month. “This is going to be a massive movement within the next 10 years. “
Jon Underwood couldn’t agree more. He is the driving force behind the worldwide Death Cafemovement, which enables people to break the taboo around death over coffee and cake, in local cafes or community centres. Going to a “death café” may seem a world away from meeting your antenatal group for a coffee, but the principle is the same. Only, instead of grappling with the dilemmas of how to bring up baby, the group discusses the end of life – with similar amounts of laughter and tears.
This time last year only 100 cafes had been held worldwide since Mr Underwood co-founded the social franchise in 2011. As of this month the number has skyrocketed to more than 2,000 in 31 countries. Today’s older generation says Mr Underwood, want their lives to be “properly celebrated” as they near the end.
It seems the taboo that surrounds death is set to finally be breaking.
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