St Columba's Hospice appeal: Creating peace and comfort amid the fear and heartbreak

Published on 26/04/2010 09:54

It is something that all of us, rich or poor, healthy or sick, will face at some point: dying. Yet it's a fact few of us want to face until we are forced to, convinced it will be terrible. As part of our Buy a Brick campaign to build a new home for St Columba's Hospice, SUE GYFORD speaks to the doctors who make dying a peaceful, sometimes even joyous, experience

HOW do you want to die? No one wants to think about it, few of us talk about it. And yet, if we are honest with ourselves, we know the answer: peacefully, without pain, with our loved ones at our side.

But creating peace and comfort amid the fear and heartbreak of terminal illness takes expertise, honesty, patience and love. Fortunately, all of those exist in abundance at St Columba's Hospice.

If you have never set foot in a hospice, the very idea can be frightening. The image it conjures up is of a rather grim place full of terrified patients, traumatised families and doctors murmuring in hushed tones.

But the reality is different. At St Columba's, every last day of life is celebrated with care, thoughtfulness and even humour.

However, the idea that underpins St Columba's – that a good death is achievable – had to be fought for by its founders. When the idea of creating a hospice for Edinburgh was first mooted in the late 1960s, palliative care was very new. It was being pioneered at St Christopher's hospice in London by Dame Cicely Saunders, but there was no similar institution in Scotland.

St Columba's first Medical Director, Dr Derek Doyle, recalls: "There was considerable suspicion on the part of doctors, who thought, was it needed? A lot of the challenges actually came from within the caring professions. There was doubt and bewilderment."

And in those days doctors had a very different approach to death, he says: "There was always the assumption that no patient ever knew that they were dying, no one could ever have worked it out and, of course, that wasn't the case.

"Of 20 to 25,000 people that I've been involved with, most people do know what's wrong with them. Everybody I spoke to said, 'I'm losing weight, the doctors are frightened, the nurses are frightened when they come near my bed. My family have been crying when they speak to me'."

Dr Doyle and his colleagues in the hospice movement turned palliative medicine into a recognised speciality, in which end-of-life care is based on meeting patient needs, not following medical check-lists.

"Most people fear dying, not death," he says. "They're terrified of uncontrolled sickness, uncontrolled pain, the doctors shrugging their shoulder, saying 'There's nothing we can do' but there's always something you can do."

He illustrates the point with a story about a patient at the hospice. "I went to an old lady when she came in and said 'What would you like me to do, what is my role?'

"She said, 'Go and get a platform ticket. It's a funny feeling, getting a single ticket, when you know you're not coming back. It's all very well having a doctor with lots of letters after his name, but what I want is a friend, and I want you to be a friend. I didn't know it was so lonely – dying is so lonely'."

Dr Doyle patted his pocket and assured her that he had his platform ticket ready to see her off. Then one day, she called him over. "She said, 'I've been waiting so long, but it's come. Have you got your platform ticket with you? Come with me'. She held my hand. 'You can't come with me all the way, but I'll feel quite safe as long as you've got your platform ticket.'

"She took my hand and gave it a little squeeze, and her hand dropped. And that was what, for me, it was all about. What anybody wants from their doctors at this time of life is someone who will stay by them, know their needs and their feelings and be friends to them, not just be super highly-trained specialists."

The idea of being surrounded by other dying people might seem hard to bear, but the companionship and understanding of others can make all the difference. Dr Doyle said: "We had a chap who was very quiet and I thought he was suffering quietly and I said 'What's your interest?' and he said 'Chess'. We had a volunteer who was a chess master, so I phoned him up."

The chess master agreed to visit the hospice and sat down with the patient, playing his best game as they sipped malt whisky.

The patient won the game, and the chess master offered him a rematch, but Dr Doyle recalls: "He said, 'No, I think I'll just go and have a rest,' and he lay down on his bed, and that was it. And that was actually wonderful for people to see that was all it was – people thought 'If it's just like that, maybe it's not so bad'."

Patients are never forced to confront issues that frighten them, but those who do want to talk will always find a member of staff with the courage to listen.

Dr Duncan Brown is one of those to tackle the task on a daily basis. He says: "I suppose everybody's different in the type of conversation that we have with them. For some people that's where we tell them that there isn't any more treatment that is going to make them feel better. Some people know fine what's going on but they don't want to acknowledge it.

"And there will be some people who need to make plans, they may need to write a will, they may want to write cards, create memory boxes to pass on to family. Some patients actually need to hear that time is short because they're worried it's going to drag on and they're feeling so terrible."

But staff at St Columba's are also committed to helping patients make the most of their remaining life, whether it's a dramatic family reconciliation or a cup of tea with friends.

Dr Brown says: "We try and put the emphasis on making sure people have the opportunity to do some of the things they want to do – go and look at the sea view, go out with their family. We try to encourage people to do what they want to do if it's physically possible.

"I remember one patient in particular who hadn't seen some of his children for more than 20 years and he really wanted to see his kids to say goodbye. He actually managed to do that, and maybe about a week before he died, he said, 'The last three months of my life have been the best months of my life' and a lot of that was down to the restoring of family relationships. Clearly life's messy and it's not always like that, but that blew me away, that was fantastic."

'Good death' message getting through

IT IS no longer just hospices that recognise the importance of a "good death". The need to plan palliative care has been acknowledged by the NHS and by politicians.

NHS Lothian is currently compiling a new palliative care strategy for 2010 to 2015, called Living and Dying Well in Lothian, based on input from St Columba's and Marie Curie Cancer Care.

The draft version report, put out for consultation early this year, suggests that palliative care and discussions about the end of life should be introduced earlier in patients' care.

It says 57 per cent of all deaths in the Lothians occur in hospital, with 42.3 per cent in either the ERI, Western General, Sick Kids or St John's, Livingston.

It sets a target to cut the second figure to 38 per cent by the end of 2015 and increase the number of people dying in "community settings" (including care homes and their own homes) from 34.4 to 38.8 per cent.

Dr Duncan Brown of St Columba's said: "There's a lot more talk about people dying somewhere of their own choice and maybe for some people not to die in an acute hospital out of preference."