The place where people are cared for in their dying days is in direct contrast to their wishes, a survey published in 2003 found. So although most are looked after in hospital, only 11% would choose to be in this setting and whereas 56% prefer to die at home, only 20% do so, discovered researcher Irene Higginson, of the Cicely Saunders Foundation and National Council for Hospice and Specialist Palliative Care Services.
But now it’s easier for people with cancer or advanced illness to be cared for at home and to die there if that is what they want, thanks to a growing movement of hospices at home. Unsurprisingly, some of the 110 or so hospices at home in the UK have seen demand double in the past few months.
No set model exists nationally – each one reflects the local need. In some cases, the nurses are trained to provide treatment and in others they must refer to a district nurse or GP. Some are linked to a local hospital or hospice, or Marie Curie nurses.
“Being cared for at home allows people to have their family around them, and other things that are important to them such as their pets and particular smells,” says Linda Hewitt, clinical services manager at West Cumbria Hospice at Home, which recently won a GlaxoSmithKline award for its work.
As with other hospices at home, Hewitt and her team aim to provide hospice-type services so that patients have a choice of staying at home, with access to a hospital.
Typically, the care starts by being provided one or two nights a week or for an afternoon, so the carers can get out of the house, see friends or go shopping. The arrangement might last a few weeks or several months, and changes in intensity according to the patient’s needs. Access to the West Cumbria service is subject to a patient wanting to remain at home and to referral by a Macmillan nurse, district nurse or GP.
It’s 20 years since Hewitt and her colleagues seized on a research finding that people wanted to die in their homes. “We saw there was limited day and nursing care for cancer patients, and that non-cancer patients and their families would benefit from care provided in their homes,” she says.
These views are echoed in recent research by Gunn Grande and Gail Ewing from the universities of Manchester and Cambridge respectively. It suggests that patients are in a happy and healthy environment when they are with their partner and their family, and that carers feel it is the “right” place for their partner’s death compared with dying on a busy hospital ward.
But despite the obvious need for the services that West Cumbria Hospice at Home provides, securing funding can be a challenge. Of its budget, 40% comes from the NHS and some comes in legacies, but 35% has to be raised from fund-raising. And just last month a report from Help the Hospices showed that the amount of government cash hospices receive as a proportion of their spend has been falling for the past three years. More than one in four (28%) are now in deficit, according to an analysis of the 2004-6 accounts for 186 of the UK’s 194 charitable hospices.
Although providing 24-hour care in the home is the core work in West Cumbria – last year it delivered nearly 11,000 hours of care to 172 patients – the hospice has other services too. It helps people with lymphodaemia and runs two day-care sessions a week. Recently bereaved people are the biggest users of the hospice’s twice-weekly drop-in centres. And carers as well as patients use the complementary therapies.
“It takes a special kind of person to be one of our nurses,” says Hewitt. “They have to cope with being on their own all night and be able to deal with the unexpected.”
Muriel Craddock used the West Cumbria service after her husband, Jim, was diagnosed with multiple myeloma in 2002.
“It was our GP who told us about hospice at home,” she says. “Its nurses were tremendous, especially during the night – giving Jim morphine injections, which allowed me to get a few hours’ sleep.
“I used its drop-in centres as well, for a massage and to help me relax. Without its support, Jim would have had to go into hospital and I would have ended up having a nervous breakdown.”
Interested in setting up a hospice at home? Here’s how:
● Collect data on your local area. What are people dying of, what are the future population projections, and what would local people want from a service?
● Be clear about your objectives. Are you aiming to: increase the numbers of those cared for at home reduce crisis admissions or facilitate discharge from hospitals increase patient-carer support? The needs and emphasis required for each goal may be different.
● Work in partnership. Your service needs to integrate with other health and social care agencies, and those referring need to have a clear understanding of the services you provide.
Cicely Saunders Foundation
This article appeared in the 9 August issue under the headline “Home comforts”