St Luke's Hospice highlights putting patients' wishes at the centre of its work during Dying Matters Week
Dying Matters Awareness Week is back from May 10 to 16, giving people across the country the chance to talk openly and frankly about end of life issues.
This theme for this year’s week - which highlights the issues surrounding end of life, dying and bereavement - is ‘In a Good Place.’
It’s a topic that has been much more in the nation’s mind in the past year as the Coronavirus pandemic affected the choices available for people facing end of life care.
For St Luke’s Hospice in Sheffield, Dying Matters Awareness Week provides the opportunity to share the many ways in which the charity has continued to offer support throughout the city to both the terminally ill and their families during the crisis.
Statistics now show that more than four in five people say they would prefer to die at home, a figure which is reflected in the St Luke’s experience.
At any one time the St Luke’s team is caring for 20 patients in the charity’s In Patient Centre at Little Common Lane - a total of 300 in any one year.
But at the same time, the specialist St Luke’s Community team has a supports around 350 patients in their own homes – a total of around 1,800 annually.
The past year, however, has seen the Covid-19 pandemic stretch national health support resources to the maximum and the increased number of deaths across the country means the topics of death and dying have been highlighted more than ever.
St Luke’s has been a key part of the network of support throughout that time, working harder than ever throughout the crisis, with the emphasis always on maintaining full levels of support for all patients, both at the hospice and in their own homes.
“We aim to review Advanced Care Planning (ACP) with all our patients each time we visit them at home to ensure we’re focussing on their wishes, their families’ wishes and checking that these wishes haven’t changed,” said St Luke’s Director of Care Jo Lenton.
“This wish might include where they want to die, which for some people may be at home - in which case our Community team provide support to enable this - but for others they want may want to be on our In Patient Centre.
“The important thing, of course, is that being ‘in a good place’ means different things to different people and that is particularly reflected in the many different communities we serve.
“There’s the physical side to being in a good place but there’s an emotional one too.
“Our teams have, for instance, had conversations with people from the homeless community who wished to die on the street where they felt most at home.
“Patients from the traveller community have wanted to die within their circle of support and we have even had one patient who wanted to die on the narrow boat which they called home.
“And for some patients, our teams help to support them emotionally as well as supporting family members during what can be an incredibly difficult and frightening time.”
The pandemic, of course, saw many people reflecting on the care they wanted to receive.
“The pandemic has significantly impacted on the care some people choose to have because their options were not the same as before Covid-19 took hold,” Jo explained.
“It increased the amount of patients choosing to die at home because people were afraid to leave their homes.
“In some case people chose to be isolated as they were afraid to access help from external health care providers in fear of catching Covid but at St Luke’s we continued to we provide our full assurance that patient care was still our primary concern, be it on our In Patient Centre or in the community.”
It is this very personalised approach to end of life care that teams across the whole of St Luke’s work hard to embrace and accommodate.
The St Luke’s Community Engagement Worker Naureen Khan has been working with different groups throughout the city on a ‘My End of Life’ programme, which has given the St Luke’s team chance to explore and understand the different protocols involved for a whole range of ethnic groups to ensure their wishes for end of life care are honoured.
And for the St Luke’s Chaplaincy and Bereavement services, that enhanced knowledge all contributes to a service that is designed to reflect the needs of an increasingly diverse society.
“We want people of all ages and ethnicities to be in a good place when they die – physically, emotionally and with the right care in place,” said Jo.
“Getting there means having some important conversations, and taking some careful decisions and Dying Matters Awareness Week is here to encourage that to happen and help to remove some of the taboos that still exist around this very important subject.”