About 100,000 deaths each year happen in care homes, which is 20% of all deaths of people over the age of 65. This startling statistic suggests that caring for people with a terminal illness should be an intrinsic part of what homes do.
As Ian Philp, national director for older people’s services, says: “Treating residents with respect for their dignity is fundamental to all care provided by care homes, but it is especially true for care at the end of life.”
Research commissioned by Help the Hospices, a charity supporting more than 200 hospices, and carried out by Lancaster University’s Katherine Froggatt, senior lecturer at its Institute for Health Research, sought the views of people in care homes about the care they received when they were terminally ill. Its findings have informed the charity’s outreach training programme.
With £70,000 of grants – funded by healthplan provider HSA – the scheme provides a variety of training, teaching, mentoring and problem-solving sessions designed to improve end of life care in care homes.
“We have provided grants for all sorts of training models,” says Terry Magee, director of education and research at Help the Hospices. “From Macmillan care nurses visiting a home every week to talk though difficult, complex cases to regular training sessions in the home where staff study pain and symptom control, spiritual care, talk about death and dying and even e-learning.”
One programme, End of Life Care in Care Homes, aims to improve the knowledge, skills and understanding of nurses and care staff in West Suffolk and South Norfolk. It is run by Madeline Bass, who works for St Nicholas Hospice in Bury St Edmunds. “We set up a forum of five care managers to take ideas forward to develop them and their staff. As well as looking to provide practical support for the person dying we also look at how to support their family. And let’s not forget, a lot of staff have very close relationships with many residents and it affects them personally when someone dies.”
Bass plans to link her work with the government’s end of life care initiative, a three-year, £12m scheme to ensure all adult patients and residents nearing the end of their life receive high quality specialist care and are able to live and die where they want. In particular, she intends to tap into the gold standards framework for care homes – a programme where all residents will receive a “gold standard” of care at the end of their lives, helping them “live well until they die”.
This will, Bass says, help prevent last-minute and inappropriate admissions to hospital. “Managers and staff, particularly those in residential care homes, may not have the training to know which staff to get in at what point be it the district nurse, GP, occupational therapist, or a palliative care or Macmillan nurse. Some private care homes cannot even access equipment from community stores, and yet this can make a huge difference to whether a person can be kept in their own (care) home.”
These outreach training programmes are simply bringing specialist care into the community. According to Magee, the outreach programmes have “empowered care home staff to work closely with local specialist staff and build that relationship so that residents get the sort of service they’d get if they lived in their own home”.
Magee continues: “When Macmillan nurses and hospice nurses have been into the home and know the staff it’s so easy for a member of staff to pick up the phone and say ‘Sally – it’s Anne here. Mrs Smith has had her medicine but she’s still fidgety and in pain – what should I do next?’.”
Also it breaks down barriers so that care staff can spend a day working in a hospice. Says Magee: “Working with in-patients who are dying can really help care staff feel that they can help people at the end of their life to maintain their dignity and to be free of suffering. This is an important and aspirational project.”
● Advance care planning should be considered. Discussing advanced wishes and preferences to inform an advanced care plan can be a natural way to start a conversation about end of life care and any questions people have.
● End of life care should feature in staff induction and regular training.
● Staff need to be aware that most people die over a longer period than in the traditional cancer or palliative care pattern, and there can be difficulty in recognising the end of life phase.