TILDA report gives unique insight into end of life experiences of older people

Posted on: 12 December 2017

A new study released today by the Irish Longitudinal Study on Ageing (TILDA) at Trinity College Dublin provides a deep and important understanding of the end-of-life experience of older adults in Ireland. The report examines issues such as where TILDA participants died, which services and care they received and their quality of life, health and disability leading up to their death.

The research found that significant proportions of older people experience particular modifiable health problems towards the end of life, which if dealt with appropriately through screening and treatment, could significantly improve quality of life in a person’s last year.

The authors also found that while the use of healthcare services by older adults increases in the last year of life, there is no evidence of the highly intensive end-of-life care that is seen in other countries and which is often associated with inappropriate care and undesirable outcomes. What is striking, however, is the high proportion of unpaid care provided by family members accounting for 42% of all care received.

The research also found that a high proportion of people who needed home, community and allied health services were unable to access them and the reasons for failure to access services suggests that substantial numbers of people were unaware of services and/or were reluctant to apply.

Finally, almost half of those who died, died in hospital. This a relatively high percentage compared to similar countries. It can have a negative impact on the end of life experiences of people and their family as well as a cost implication for the healthcare system.

The research used 375 interviews completed by family members and friends of TILDA participants who died since the study began in 2009, representing 73% of confirmed deaths among TILDA participants between Wave 1 (2009) and Wave 3 (2014) of the study.

Summary of key findings:  

Health and disability

• As well as a high prevalence of serious chronic illness, significant proportions of older people experienced health problems towards the end of life that could be modified to improve quality of life, including falls (41%), regular pain (50%) and regular depression (45%).
• There was a wide variation in levels of disability among older adults in the last three months of life. Approximately a third were active and disability-free while another third needed help with most everyday tasks such as eating, bathing and taking medications.

Access to healthcare services

• On average participants visited the GP six times in the last year of life and experienced one hospital inpatient admission. A minority spent time in a hospice (12%) and/or nursing homes (18%).
• Many people accessed community care such as a public health nurse (45%), allied health care such as physiotherapy (33%) and home care services such as home help (20%) in the last year of life.
• However, significant proportions of people who needed a variety of these community care services were unable to access them – between 15-30% depending on the service. There is no evidence connecting this unmet need to socioeconomic or geographical factors. Rather, the data suggest that inability to access community care stems from lack of awareness of availability and a reluctance to apply for services.

Informal care

• Help from friend-and-family networks, also known as informal care, comprised a substantial proportion of the care received by older people in the last three months of life. On average, people received two hours of care per day but 10% received 24-hour unpaid assistance.
• When the cost of informal care is estimated alongside formal health care costs in the last year of life, unpaid help from friend-and-family networks accounted for 42% of the total cost of care received in their last year of life.
• The level to which people received both formal and informal care in the last year of life was strongly associated with their disability level and the seriousness of their illness.  However, other determinants were also evident: 
  • Older people who lived alone had different patterns of experience in the last year of life from those who lived with others. People who lived alone received less informal help with everyday activities, but this shortfall was not matched by increased use of formal healthcare services. People living alone therefore received less care on average.
  • Those with heart disease or depression were more likely to have been unable to access services that they needed.
  • Old age is itself not a driver of health service use in the last year of life.  Rather, it is factors associated with age such as disability and serious chronic illness that increase health service use.  However, older age is associated with receipt of significantly higher levels of informal care.

It is important to note that average use of healthcare services and receipt of unpaid help from family and friends must be interpreted carefully as these cover important differences that exist by illness and disability burden. As expected, a minority of seriously ill older adults accounted for most of the end-of-life care received from both the formal health service and from friend-and-family networks in the last year of life. The authors argue that this variety of illness burden implies substantial differences in need and circumstance that must be considered in preparing policy and healthcare provision for older adults at end of life.

Place of death:

• Participants died in four main places, with over a quarter (27%) dying at home, nearly half dying in hospital (46%), just over one in ten dying in a hospice (11%)  and one in ten in a nursing home (10%).
• People who lived alone were half as likely to die at home as those who lived with others, and 3.8 times more likely to die in a nursing home.
• People living in rural areas were less likely to die in a nursing home than those living in non-Dublin urban areas.
• Research from seven other high-income countries report the death in hospital rate between 22-52% which places Ireland at the higher end of this group.
• Other research has shown that a high hospital death rate is generally considered an indicator of poor health system performance as it is inconsistent with patient preferences and associated with both high resource use and poor patient experience.

Lead author of the report Dr Peter May said: “Our research shows that there is widespread experience of poor health and disability in the last three months of life among TILDA participants, including a high prevalence of modifiable health problems. We need to do more research to improve identification and management of issues such as pain and depression to improve people’s quality of life in their last year.”

Dr May continued: “Another issue that needs to be addressed through further research and policy is the contribution of informal care. On the one hand, unpaid family carers make an enormous contribution to the care of older people in Ireland yet overwhelmingly receive no support from the state. On the other, older people who live alone in their last year of life have reduced access to informal help and appear to receive less care overall. So there is clearly a need to consider additional supports both for people who live alone and receive insufficient care, and for informal carers who often shoulder a considerable burden.”

Professor Charles Normand, senior author of the report and Edward Kennedy Professor of Health Policy and Management in Trinity said: “Continued consideration must be given not only to improving chronic disease management from prevention and diagnosis to palliative care, but also to understanding the structural and societal factors that determine healthcare access and end-of-life experience in Ireland. Our research tells us that the high levels of unmet need do not appear linked to socioeconomic factors and the reported lack of awareness of service availability should inform and influence policy makers.”

He continued: “We need also to consider carefully how we can reduce the number of people who die in hospital.  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.”

Professor Rose Anne Kenny, Principal Investigator of TILDA said: “This research wouldn’t have been possible without the generosity of family members and friends who gave of their time and emotions to share with us the end-of-life experiences of loved ones. It is our hope that the information provided by this report will assist in planning better services for end of life in Ireland”.

The full report is available at www.tilda.ie