During the 1990s, the NHS closed the many long-stay ‘geriatric’ wards and gave the monies to social services in order for them to fund the care of frail older people in more ‘homely’ settings i.e. local residential and nursing homes. In early 2000, residential and nursing homes became known as care homes – care homes with or without on-site nursing. There are now three times the number of care home beds compared to NHS ‘acute’ hospital beds. In Scotland, there are around 850 care homes for frail older people (the majority of which are independent of health/social care) providing in the region of 33,000 beds.
Over the years, an increasing number of residents have wanted to stay in their care home ‘til the end’ with people who know them well and where surroundings are familiar. 22% of the UK population now die in a care home. Care homes are fast becoming the de facto hospice and in many ways resemble patients during the four years when I worked at St Christopher’s Hospice, London (1978-1982). Then, it was not unusual to have patients on my ward for many months – indeed those with a diagnosis of motor neurone disease were often there for 2+ years and provided a certain stability for the staff against those patients who died over a number of weeks/months from cancer. However, hospices have changed considerably over the 50 years since the movement first started and now the average length of stay is around 12 days with a good percentage of patients being admitted for symptom control and then being discharged to receive support at home.
The one difference between a care home and a hospice is that residents in care homes are there for an average of 15 months. Frail older people have a less predictable dying trajectory than dying from cancer in mid-life – in fact, there are many differences but there is not the space in this BLOG to go into them all. One I do want to discuss is the dying trajectory. We have found that around 8% of care home residents died from a terminal condition such as cancer or Parkinson’s disease; with a reasonably predictable downward trajectory. The rest were quite difficult to predict: 57% of residents had a slow ‘up and down’ dwindling trajectory, 10% had a sudden unexpected death (like dying in their sleep during the night), and, 25% died as a result of an ‘acute’ episode which was not anticipated and they died within a matter of days. So very different from the reasonably predictable downward trajectory of cancer.
The day-to-day work in care homes is hard – staff often work 12-hour shifts despite this being shown to increase sickness and reduce quality of care. However, it is cheaper for care home organisations to pay staff a 12-shift. The majority of staff in care homes have little healthcare training but are now being asked to care for some of the frailest of our society. Frail older people in care homes have an average of four co-morbidities that include dementia or cognitive impairment. No longer do frail older people admit themselves to a care home for companionship. It is my belief, that if care homes are becoming the de facto hospice, then a greater palliative care organisational structure alongside greater health service input.
Jo Hockley
January 2020
Jo works at the University of Edinburgh on the Primary Palliative care Research Group as a Senior Research Fellow and has been on the Board of Faith in Older People for4 years