By Jo Moulton, Content Creator
It’s not a nice subject. It’s not an easy subject. It might be something you don’t wish to talk about or even think about, but to state the obvious, it comes to us all.
Just what exactly our end might look like though, is as unique to each of us as the very life we step out of, when the time comes.
Until my Mum passed, on the rare occasion I happened to invite the thought of what was to me, a terrifying enigma, I really couldn’t find a way to believe that there could be such a thing as a ‘good death'. I thought stories about it being ‘peaceful’ and ‘surrounded by love’ were just platitudes to help the living feel better. But, I can assure you that they’re not, there really is such a thing as a good passing, and in my case it came to her thanks to the care taken of both her, and us, my family and I, by our local hospice.
Now care is not a word I use in haste. I really knew that the team that looked after my Mum and us, cared. The only accolade I could think of at the time that came close to describing them was as angels. Which is why it came of no surprise to me, when I was researching charity Hospiscare, to read this quote from one of their patrons:
“They were truly a team of angels.”
Hospiscare are one of four independent hospices in Devon. They operate a specialist ward, three day hospices, and have currently nearly 50 specialist nurses on the road offering day-time care to people at home, with all of their services covering Exeter, Mid and East Devon.
Their specialist services help people who have been diagnosed with a life-limiting illness, and these are as varied as the people they support. For example, people with cancer, heart failure, respiratory disease and neurological disorders in anyone who is over the age of 18.
“Everybody and anybody comes to our door and we have really young patients sadly, and equally we have patients in their 100s. Patients have to be diagnosed with a life limiting illness, anything likely to shorten their life. That might be over years, months or even days.”
Rather than ‘taking over’ a patient’s care, Hospiscare work closely alongside other healthcare professionals to provide a speciality. For this reason, patients might find their way to Hospiscare by a referral from their GP, hospital consultant, specialist nurse or community nurse. Sometimes, their care may be brief to help alleviate symptoms for a while, sometimes at the beginning of a diagnosis to help them adapt, or nearer the end of life as their symptoms get more complicated.
“We’re referred to because our skill is in that high-level expertise around symptom control, pain relief, and the psychological/spiritual support that can be needed when people are facing the end of their life.”
“You do get patients that don’t ever need to see us. They deteriorate really gradually, really peacefully. And they are well supported by their GP and their NHS community nursing team, if they even need them, and that’s all they’ll ever need. It’s the people with the complexities that need that extra bit of support that we are there for.”
National research tells us that 81% of people, if given a terminal diagnosis, would prefer to live out their final days at home. Comfort is to be found it’s true, in a familiar place, with familiar and cherished belongings, memories and faces.
The Hospiscare@Home teams allow people the relief of just that. Their nurses and healthcare assistants are available 24/7, making day visits to patients at home as often as they are needed, as well as being available on call during the night.
“The night-time is very important. It’s when a lot of crises happen. Everything feels worse in the night. A patient can be in distress, and the family do not know what to do. Without this service people panic and call 999 and then they are in an acute hospital when didn’t need to be.”
Hospiscare describe the Hospiscare@Home experience ‘like bringing the hospice into people’s homes.’ That means a wide range of services - that include a patient’s pain relief, or for instance, help to wash, but also, a level of awareness of not only every unique person, but their loved ones too and the needs of each, that goes far beyond the clinical.
“Our approach is very personal, because we will go in and we’ll think, ‘well, we could do that with your pain and that would make you more comfortable’, but we try to ask the patient, the person, actually ‘what’s important to you at the moment? What matters most?’ Hence, it might be their pain, but it might be ‘could you help me Skype my loved one in Australia because I’m not going to see them again".
“It is hard to put into words the wonderful care that was given to us by all of the Hospiscare@Home nurses. They are the most wonderful people that I have ever met and nothing was too much trouble. They took so much pressure away. While my dad was relatively pain free he was able to chat with the nurses about all sorts. He also had a lot of laughs with them. I will never be able to thank them enough for what they did but I will sing their praises everywhere I go.”
And it’s actually because of this individualised approach that their Hospiscare@Home pilot service has won both national and local awards and was described as ‘innovative’ by the Care Quality Commission, citing its ‘outstanding personalised care’.
But that is far from the end of the story I’m afraid. This is an incredible organisation of people who help others die with dignity, in peace and comfort. They allow husbands or wives or other family members be exactly who they are supposed to be to that person during this precious time; not the scared, stressed, worn-out carer or nurse they might have otherwise had to become. And they do it all, for the exact cost of not a single penny to the patient or their family.
But what if…
Unfortunately, Hospiscare@Home’s 24/7 service is not everywhere in Devon that is needs to be. And the sad truth is, if you happen to live in an area that is not covered and you are given a terminal diagnosis, the story for you, could be quite different.
“It can get to a point where it all gets too much. Symptoms can get too much, their families are really starting to struggle with what’s going on, and they’re needing extra support too. They can’t get cover through the night, they might call someone from the out of hours and it might take hours for them to get to you when you’re in pain. During those times it can get really, really complex in those homes for all sorts of reasons and we know that when people are psychologically distressed or socially distressed, their physical symptoms increase as well.”
If symptoms aren’t controlled at home, you may be hospitalised.
"They might not get that package of care and might end up in an acute hospital which is not a terrible thing, but it’s not the place you want to be at the end of your life."
Due to Devon’s rural nature and spread out population in some areas, there are parts of the county that other care services simply do not, or struggle to cover. Hospiscare tell us that if patients can’t die at home then at the very least they want to be near to home. But, due to recent closures of beds in many of our local community hospitals, that might not be possible for them either. Some people are forced to die far away from home and in some cases, where their family simply can’t be with them, because of distance.
In early 2020, after approximately two years of preparation, Hospiscare was due to launch a public appeal to attempt to fund three extra Hospiscare@Home teams to cover the areas of East and Mid Devon lacking its 24/7 service.
They already had some private interest in the appeal, and had held a promising launch event but then… coronavirus happened.
It no longer felt appropriate nor was it possible for Hospiscare to appeal for funds for this additional work when their core services were now being hit hard by the pandemic.
It was during several calls to these initial supporters to tell them this sad news, which indeed had left the involved Hospiscare team members devastated, that the fundraising team spoke to one particular advocate that couldn’t let the matter close.
And this donor has been the instigator of a new and exciting partnership that involves us at Devon Community Foundation.
Can you join us?
We delighted that this donor, who is also a DCF fund-holder, has enabled Devon Community Foundation and Hospiscare to collaborate on a donation match fund. By donating a significant sum that we can use to match to new donations, their generous philanthropy will enable the Hospiscare@home service to be extended to some of the most rural areas of Devon.
If you would like to help us by making a donation – Thank you! Please make your donation of £5 to £1,000 via our Donate page here. The match-fund will add 25% to your donation, and if you are able to apply gift aid we will be able to achieve a 50% uplift on your generosity. The Full amount will then be passed from DCF to Hospiscare.
For bigger donations and possibly a greater match please get in touch with our Philanthropy Director Scott Walker by emailing email@example.com
At Devon Community Foundation, we are both privileged and humbled to be surrounded by extraordinary people who, like the Hospiscare family, also care genuinely about others. None of the work we or they do, would be possible without them.
I’m hoping that our platform to these incredible people can help Hospiscare reach their target and really make a difference to those coming to the end of their days and, to people like me, who will be truly grateful for their support, until the end of theirs.
Read more about the Hospiscare@Home Match Fund Appeal here.
To read more about the work of Hospiscare visit their website here.