Seven things you didn’t know about hospice care: Nurses bust myths this Hospice Care Week

Hospices make 1.4 million community visits each year, helping people at the end of their lives live well in the place they love most: their own home. They deliver expert care closer to home, managing complex symptoms, providing specialist pain relief, supporting families through emotional and practical challenges, and preventing unnecessary hospital admissions.

Alongside this vital specialist care, hospices also help people live as fully as possible: whether that’s helping a patient attend a loved one’s wedding, enjoying a day in the garden, or simply spending precious time with loved ones.

This Hospice Care Week, hospices across the UK are highlighting the full breadth of hospice care, from community nursing and wellbeing groups to hospice-at-home services, and sharing the stories of staff who deliver care in so many different settings.

These services could – and should – be growing and expanding to meet the rising demand of our ageing population. But in actual fact, they are shrinking. Many hospices are on the brink, with surging costs leading to many services being cut back.

With the right support, there is so much more they can do. So that’s why, this Hospice Care Week, we’re celebrating all the things that hospices do to make people’s live better in their own homes, and the hospice staff and volunteers who do them – to help raise awareness that these services should be properly funded. 
 

Seven things hospice nurses wish you knew

“When I talk to people about my work, they often assume I’m based in an in-patient hospice unit. They’re usually surprised to hear about the variety of places we care for our patients - such as in their own homes, in a church hall, at our hospice community hub, or even at a cricket club! I explain that our community hospice care is about helping people live their lives as fully as possible. We provide information, training sessions, and care where needed; we also signpost patients to other agencies and professionals who can support them.

But what I hold most dearly in my heart is this: I see our patients—and very often their families, gradually relax when they join our community hospice groups. They begin to open up and share with us: their worries, their wishes, their celebrations, funny stories, and sometimes regrets. There’s a lot of laughter, and sometimes there are tears. What they tell us, time and again, is how much the connection with others in the group and the staff means to them. I think even if we can’t change the outcome, maybe somehow… we can change how someone feels in the time they have.” - Angie, Staff Nurse at Lewis-Manning Hospice Care, Poole
 

“We want people to understand that hospice care is far more than what happens within our inpatient unit. My role is to meet individuals with life-limiting illness, and their loved ones, wherever they are, providing support from diagnosis through to end of life, and into bereavement. Hospice care is about living well until the end of life. It’s never just about the individual; it’s about embracing and supporting their whole network of family, friends, and carers. Hospice without walls means being present, compassionate, and supportive wherever people need us most.” - Charlotte, Wellbeing and Outreach Lead at St Leonard’s Hospice, York

“It might surprise you to know that hospices can be very happy places. Sometimes patients haven’t been able to do something they love for a long time, and we’re able to help them with that. We had a patient who hadn't been outside in their garden for more than a year because they'd been housebound. When they stayed in our In-Patient Unit, they could see the view of the lake and our gardens. They weren't able to transfer to a wheelchair, but we could wheel their bed out onto the balcony, so they had an even better view. The tears in the patient’s eyes showed how much it meant to them.
We also have patients who bring in their pets, so they can be on the bed with them. All of these things make patients feel more comfortable in our care.” - Chloe, In-Patient Unit Lead Nurse at Willen Hospice, Milton Keynes

“When people think of a hospice they think of a building, but hospice care is so much more than that. I wish more people knew that we are there for the whole family too, not just the patient. The daughter of a patient recently told me having that wraparound care is just so important because their mum needed extra attention and care at night, as she got very stressed and anxious.

“It was hard on their dad too as he felt he had such a lot of responsibility constantly caring for his wife, giving medication and making sure she was comfortable, eating and drinking.

“We are told all the time it is having that extra help at night that is so comforting. It's the reassurance that we are there looking after them and their loved ones, and they haven't got that fear of being alone in the dark while everyone else sleeps. I’m so proud of the job that I do.” - Pauline, Hospice at Home night sitter at St Clare Hospice, West Essex

“What makes me most proud of the care we provide is being able to support patients in achieving a goal and doing something they want to be able to do. For one of our patients, her goal was to attend her daughter’s wedding. So we came up with a plan of exercise and therapies to help improve her strength and breathing over a number of months. Being at the wedding was still a huge challenge and very tiring for her, but she was absolutely thrilled to be there and enjoy it.” - Jenni Marks, Therapeutic & Wellbeing Operational Lead at Willen Hospice, Milton Keynes

“Even in the quietest hours of the night, being there for families when they are most exhausted and vulnerable is incredibly meaningful. I value the time spent with families - listening, offering comfort, providing care and support, or administering medication when needed. I know our service makes a real difference in our community, and I wish more people knew about it sooner, so many families could benefit from earlier support.” – Lucy, Nurse at Tynedale Hospice at Home

“When I first went into palliative care, my family worried it might be too hard emotionally. They thought it was only about death and dying. Now they see how meaningful the work is, and they’re proud that I can help patients and the people important to them through some of life’s most difficult moments.

“For me, palliative care is about helping people live as well as they can, for as long as they can – and making every day matter.” - Helen, Nurse at Ashgate Hospice,  Chesterfield 

“I wish more people understood that hospice nursing is about living rather than dying. We meet wonderful people who share their stories with us and it’s a privilege to spend time with them. You can’t change the outcome, but you can ease it for them – make what is a very difficult time a little bit more manageable. People often express an unexpected sense of relief when they come to us, as if a weight has been lifted. Many of the people we support online, especially those who are housebound, describe us as a lifeline.” - Heather, Senior Staff Nurse at Princess Alice Hospice in Surrey