The final chapter
“I have a positive outlook and understand that death is part of life so it doesn’t frighten me,” says Catherine Thomson, who is a volunteer with the new Marie Curie Helper Service.
“To me, people who are dying need other people to be normal around them. It is happening to them, not you.”
Recently piloted in Fife, the free service offers people with any terminal illness and their families tailored, face-to-face support, ranging from a listening ear and everyday conversation, to practical help with small daily tasks. It is available from the time the terminal diagnosis is made but can also offer support to family members up to three months after bereavement.
Thomson has been visiting Bunty, who has lymphoma, for the past three months. Bunty, who is in her eighties and widowed, does have family nearby and carers visit a few times a week, but she can spend a lot of time on her own so she looks forward to Thomson’s visits.
“She is a bit frail now so we don’t really go out. I make her a cup of tea and we have a good chat. I think she just enjoys the company. I’m a new audience for her stories,” says Thomson, who has also offered to read to her and take her to the bingo.
I have a positive outlook and understand that death is part of life so it doesn’t frighten me
Thomson counselled people with alcohol problems before she gave up full-time work last year to care for her mother-in-law, who has dementia. However, she says she wasn’t ready to retire so decided to look for some voluntary work that would enable her to get out of the house and meet new people.
“After a few months, being the type of person I am – I enjoy meeting people, I enjoy working with people – I thought, right, I want to do some voluntary work again because I know how much you can get from it as an individual. But I also felt that I had a lot to offer other people. I saw a piece that was in the local Fife Free Press about the new Marie Curie Helper Service and after reading it I thought, that is probably something I could do. So I applied and I’m enjoying it.”
Following the successful pilot in Fife, Marie Curie hopes that the Helpers Service, which is a UK-wide programme, will be rolled out to the Lothians, Grampian, and Dumfries and Galloway next year.
The helpers provide a little extra support and companionship at a particularly difficult time, says Richard Meade, head of policy and public affairs for Marie Curie in Scotland.
“They will have lots of people coming into the house, whether it is for medical or social care, so to have someone there who is just about them and helping them makes a big difference.”
The expansion of the service is part of the charity’s “ambitious” new strategy to make a better life for people and their families living with a terminal illness. However, in Scotland, Meade says there is work to be done to ensure that everybody who could benefit from palliative care gets access to it in a timely way, regardless of their condition.
“Palliative care isn’t well accessed for a lot of people, particularly those with a non-cancer diagnosis. Research we did at the end of last year found that only one in five patients with a non-cancer diagnosis was accessing palliative care, compared to 75 per cent of those cancer patients with a terminal diagnosis. So clearly there is an inequity in terms of diagnosis and for all of those who did access palliative care, including those with cancer, it was only in the last two months of life, which although is still a benefit, most people would say it is the last 12 months that you should be receiving palliative care and support. Clearly that isn’t happening for everybody in Scotland and that is something we should all be striving towards.”
The existing Scottish Government strategy for palliative and end of life care – Living and Dying Well – was published in 2008 and now needs updating, he argues.
“We think this is a perfect time to look at a new strategy, building on what has been successful from Living and Dying Well, identifying where there are still gaps and how we might look to meet them over the next five years, and obviously then reflecting the changes in health and social care policy and how that might impact on making sure we get quality palliative care for everybody, regardless of their diagnosis.”
The Scottish Government has a policy ambition that by 2020 everyone is able to live longer healthier lives at home, or in a homely setting, and Marie Curie’s community nursing service does just that, says Meade.
“It enables people to get the care that they would like at home and, where possible, to die there as well. And that is hugely important for a lot of people because the vast majority of people when asked would prefer to die at home, rather than in a hospital or elsewhere. But unfortunately the vast majority of people still die in hospital. I think just under 60 per cent of the 55,000 people who die each year in Scotland die in hospital, where obviously most would prefer to die at home,” he says, adding that where that isn’t possible the charity’s hospice services can also provide specialist care in a more homely setting.
Next year, however, the Scottish Parliament is scheduled to reconsider the issue of assisted suicide, as Scottish Green co-convener Patrick Harvie MSP takes forward the late Margo MacDonald MSP’s member’s bill.
While Meade says that Marie Curie recognises that people have the right to refuse treatment, he adds that they are not currently seeking a change in the law at present.
“The issue of assisted suicide is just one aspect around the whole discussion around end of life care and while we still have issues around access to palliative care and making sure that everybody who is entitled to palliative care is getting it, then I think we need to be looking at the whole picture at the end of life and what is available to people.
“We would like to see government focus a lot more on those palliative care and end of life issues for the whole spectrum of end of life care and a big part of that is developing a new strategic framework for action, which we really want to see government produce in the new year and make a real focus of in the 18 months before parliament rises.”