One in five of all deaths is in a care home, so a new guide to providing end of life care for residents published this week should prove useful.
Chief executive of the English Community Care Association Martin Green said: “We are pleased that end of life care in care homes is receiving greater attention and there is finally recognition that many people end their lives in care homes.”
The need for practical guidance was identified by the National Council for Palliative Care, after talking to the care home sector. The NCPC hopes the guide will “aid care home staff in delivering the best possible care for their residents” and “generate awareness of the important role of palliative care within care homes”, said chief executive Eve Richardson. The guide is published by the government in partnership with the NCPC.
Taboos about death prevent many staff from discussing what care residents want at the end of their lives, a Help the Aged study found earlier this year.
However Martin Green at ECCA believes older residents are often more comfortable talking about death than care home staff.
The new guidance acknowledges the difficulties of broaching the subject of death in helpful plain direct language.
“We often find it difficult to talk about death and dying,” it begins.
Issues for staff to consider are listed in the guide, including the following:
• How many of your residents die each year either in your care home or after transfer to acute care?
• Do all your residents have up-to-date care plans including care at the end of life?
• Can you identify the patients who are nearing the end of their lives?
• Do you talk with your residents about where they would like to live and die?
• What are the main disease groups among the residents in your care home?
• How many GP practices provide medical care to your residents?
• What links do you have with social care and specialist palliative care such as a link Macmillan nurse?
Information in the short guide is basic but includes many sources of further information and best practice.
Issues affecting end of life care that may need tackling, according to the guide, include staff training, access to medical help and drugs, GP liaison, and the cultural and language differences of staff and residents.
Accessible guidance is vital because the entire home staff team should learn about end of life care, says Green. This is likely to prove a “major challenge”, in a low-paid high turnover sector, he acknowledges.
There is concern over the quality of palliative care provided by care home staff, according to a research briefing by the Social Care Institute for Excellence.
Scie says most terminal care in homes is provided by general staff, with specialist palliative care teams only becoming involved in “certain circumstances.” Research has highlighted the value of developing links between palliative care teams and care home staff, it says.
Involvement by specialist palliative care teams with care homes is “variable”, according to the new guidance.
Scie’s research brief found that specialist involvement “tends to be restricted almost entirely to older people with cancer, although…the majority of older people with terminal illness in care homes die from circulation problems, respiratory disease and end-stage organ failure.”
The guidance concurs, saying there “may be fewer service users with cancer but a high incidence of chronic bronchitis and emphysema, heart failure and dementia.”
Sensitivity to the cultural needs of older ethnic minority people receiving palliative care is urged, in a separate joint report by the Policy Research Institute on Ageing and Ethnicity and the National Council for Palliative Care published in May 2006.
Palliative care offers physical, psychological, social, spiritual and financial support to people.
The government is committed to improving palliative care, including better staff training, and to more social care involvement within palliative care.
The Association of Directors of Social Services, Help the Aged, the English Community Care Association, the National Care Forum and the Registered Nursing Home Association all support the guide.
Further information on best practice in end of life care Preferred place of care plan
Record kept by the patient including thoughts on their care and where they would prefer to die.
Gold standards framework in care homes programme: http://www.goldstandardsframework.nhs.uk/
Tools and resources for staff to improve end of life care. It focuses particularly on improving collaboration with GPs who look after patients who are care home residents.
Liverpool care pathway for the dying patient: http://www.lcp-mariecurie.org.uk/
Guidance on using the hospice model of care in other settings including care homes.
NHS End of Life care programme, http://eolc.cbcl.co.uk/eolc aimed at improving the quality of care for terminally ill people.