I regularly hear comments like those in the image above when I tell people I’m a hospice director. Then the conversation stops - who wants to talk about death and dying at a dinner party?
No one, including me.
But hospices are about so much more than that. They’re about living and creating memories, and providing the best experience possible for patients and their families at the most difficult time of their lives.
This year’s Hospice Care Week, taking place from 9-15th October, is about celebrating hospice care, explaining its reality, and countering the misconceptions and fears so many people have. So this is my take, as a Sue Ryder hospice director, on the facts and fiction.
MYTH: A hospice is where people go to die, isn’t it?
REALITY: Yes, but the specialist end of life care provided by our seven Sue Ryder hospices is only part of the picture.
Before reaching the end of life stage of their illness, patients with life-limiting conditions need palliative care – that’s about stabilising symptoms and managing pain to make them as comfortable as possible. We’re really good at that too. Almost half of our patients, 46%, are discharged after receiving a stay of palliative care.
MYTH: It sounds like a depressing place...
REALITY: There’s a widespread assumption hospices are sad, morbid places. I challenge you to spend an hour in one of our hospices without hearing laughter.
At Sue Ryder, we talk about not being able to change the outcome but changing the journey. We want every patient’s journey to be the best it can be. We want them to have the choice to do what they want, whether it’s watching a film, eating a favourite meal or enjoying our gardens – patients at Duchess of Kent Hospice and here at Thorpe Hall can open their bedroom doors directly into the garden.
And we do what we can to make sure their loved ones are left with wonderful memories of their precious time with us.
MYTH: Hospice patients are lonely
REALITY: Some people think a hospice is a lonely place where patients are isolated from loved ones. This couldn’t be further from the truth.
Our hospices are open for visitors 24 hours a day – family, friends and pets are all welcome – we regularly have dogs, a horse has visited St John’s Hospice and the team at Nettlebed Hospice recently welcomed a tortoise!
For those patients who don’t have many visitors, there are volunteers who have time to talk, do arts and crafts, and help patients Skype far-flung families. There’s certainly no need for a patient to be lonely.
MYTH: 'Hospice' is another name for a care home or hospital
REALITY: Hospices frequently get mistaken for care homes and hospitals. We like to think we combine the best aspects of both.
We have consultants, doctors, nurses and nursing assistants to provide expert healthcare. But people’s emotional, psychological and spiritual wellbeing are just as important.
At our hospices we have family and bereavement support teams; chaplains; occupational therapists, physiotherapists and complementary therapists; and social workers. At Thorpe Hall we have a ‘Get Creative’ team providing activities for patients and families as part of our holistic care.
MYTH: Hospices only care for people who are dying
REALITY: Our care and support doesn’t end when a patient passes away. The death of a loved one can devastate individuals and families. We’re here to provide the support they need for as long as it’s helpful.
Trained bereavement teams offer one-to-one counselling, support groups and even activity groups joining together bereaved people with shared interests. At St John’s Hospice, for example, our Carers’ Group introduces carers to each other over tea and cake.
MYTH: Hospices are where you go when you have cancer
REALITY:We’re often mistaken for a cancer charity and the majority of our patients do have the disease – around 86%.
But it’s worth knowing that we care for people with more life-limiting conditions than any other UK charity.
MYTH:You can’t stay at home and receive hospice care
REALITY: Oh yes, you can. Thanks to our network of Hospice at Home teams, the care Sue Ryder is so proud of can be delivered to you if you choose to stay at home.
Some hospices, including Wheatfields and Manorlands, have community nurse specialists providing home visits seven days a week, and Sue Ryder volunteers offer ‘good neighbour’ help to people in their own homes through our befriending services.The day service at Leckhampton Court Hospice offers practical care and emotional support tailored to each person.
MYTH: Sue Ryder is funded by the NHS
REALITY: We are a charity; we’re not part of the NHS and we have to fundraise the money we need to provide our services which are, overwhelmingly, free of charge to patients and their families.
It costs around £42.5m to run our services each year, providing 2.7 million hours of care. Statutory funding covers £27.8m of that, leaving us with £14.7m to raise by working with donors and supporters like you.
MYTH: It must be horrible working in a hospice
REALITY: All of us at Sue Ryder are immensely proud not only of what we do but of what hospice care is, and consider it a privilege to be here for people at the most difficult time of their lives.
If you’d like to know more about hospice care or to visit one of our hospices to see for yourself, just let us know.
What are your perceptions of a hospice? Have these been altered by experience?
Please feel free to join the conversation and comment below.