Many don't know of end-of-life aid available for their final months

A high proportion of people were not aware of the health services available to them in the final months of their lives, a long-term study of older people has found.

The Irish Longitudinal Study on Ageing (Tilda), published by Trinity College Dublin in collaboration with an inter-disciplinary panel of scientific researchers, has today published its latest report, which focuses on the end-of-life experience of older adults in Ireland.

It also found that people can enjoy a better quality of life in their final months if some risks are avoided and treatable conditions are screened and tended to accordingly.

More than 8,500 people over the age of 50 initially took part in Tilda, and its latest findings are based on interviews with the family members and friends of 375 participants who have died since the study began.

The Tilda end-of-life findings also revealed that “a high proportion of people who needed home, community, and allied health services were unable to access them”.

However, researchers found that this access was not due to disability, their socioeconomic background, or where they lived.

The report’s authors said: “It is perhaps surprising that socioeconomic and geographic factors are not presenting particular barriers but reasons for failure to access services suggests that substantial numbers of people are unaware of services and/or reluctant to apply, which should be of immediate relevance and interest to policy-makers.”

The study also found that as they reached the end of their lives, people experienced conditions such as falls, regular pain, and depression, that could have been alleviated.

“Recognising the risk and presence of such modifiable conditions by practitioners is essential to improving end-of-life experience, since appropriately addressing these challenges is associated with better quality of life,” said the study.

Researchers also found that while an older adult’s healthcare usage increases in their last year of life, “there is no clear evidence of the highly intensive end-of-life care that is seen, for example, in the United States and is associated with inappropriate care and undesirable outcomes”.

It also found that unpaid care by family and friends accounted for more than four out of every 10 hours of care received by people in the final months of their lives.

“On average, unpaid friend-and-family networks provided two hours of help per day at end of life but 10% of people received 24-hour unpaid care,” the report stated.

“When the cost of this care is estimated alongside formal care costs in the last year of life, unpaid help from friend-and-family networks accounts for 42% of the total cost of care received.”

Researchers also found that while people who lived alone received less informal help with everyday activities, this shortfall was not matched by increased use of formal healthcare services.

Nearly half (46%) of those who died passed away in hospital, something report author Charles Normand said needs to be reduced.

“While it is sometimes necessary for someone to be in hospital to access support for complex needs and hard to manage symptoms, it is clear that in many cases we could improve experiences for families and possibly reduce costs if care were provided in more appropriate settings,” said Prof Normand.