OLDER people at the end of their lives are being let down by the care system, with too many unable to achieve a “good death” and dying alone, according to a survey from Scottish Care.
The umbrella organisation for independent care providers says staff in care homes or providing care in people’s own homes are stretched to breaking point by the needs of terminally ill residents.
Calling for more investment in palliative care services, Dr Donald Macaskill, chief executive of Scottish Care said that death and dying are often taboo subjects, but that means planning for end of life care is often inadequate.
“As a society, we continue to struggle with having open conversations about this inevitable part of life, and often fail to see planning for a good death as an essential discussion to be had at an early stage with loved ones and professionals.
“Palliative care and end of life can be traumatic.... It can be painful, frightening and lonely. It stretches and strains everybody involved in supporting someone at end of life, often more than they have ever been before and sometimes to their absolute limits.”
A report, to be launched at Scottish Care’s conference in Glasgow today, is based on nationwide focus groups with people working on the frontline of elderly care. It says more than 100,000 people work in independent care homes and home care services, supporting more than 63,000 people, including around 52,000 aged over 65.
Scots are dying older, often affected by frailty, dementia and multiple other conditions, Scottish Care says, and by 2037, deaths will have gone up by 12% to 61,600 with more than eight out of ten of those people likely to have a need for end-of-life pallaitive care.
Dr Macaskill said more recognition for the work of staff should include better resourcing for care at home and care home services. “We owe it to our social care staff to listen to what they say in this report. It is their voices who console, whose hands offer the touch of comfort, and whose presence instils solace.”
However the report finds that many care workers feel unappreciated, excluded from professional decision making and unrecognised by the public for the important role they play.
“Whilst we refer to ‘health professionals’, we do not attribute care workers with a similarly esteemed title and we certainly do not explicitly recognise their often specialist palliative and end of life care abilities,” he said. “Of crucial importance to many people is the desire to die at home and not in a hospital.”
One worker quoted in the research said: “The nurses and the GP pop in and out but we are the ones who are there. It is us who have to be with them and care for them and answer the family’s questions and try to calm them,” while another added: “The nurses have no idea of what it is we do – they still think of us as home helps and treat us as such… It feels like nurses and us.”
Dr Macaskill added: “At present, many care staff feel subordinate to their health colleagues and that their role is not valued by others.
“The report highlights how excluded many care workers feel from support within their organisations and from wider health and social care integrated working arrangements.
“We would argue that this is no longer acceptable.”
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