Key findings and policy implications from the Cambridge City over-75s Cohort (CC75C) population-based study
We are living longer, which means more of us are dying in ‘older old age’ 1: health and care services are having to adapt to meet rapidly changing needs of a growing population of very old people.
This has implications around the globe, for low to middle income countries as well as the developed world. In the UK, for example, nearly half of all deaths now are people aged 85 or older, up from only a fifth in 1990. 2 3 Increasing life expectancies in many developing countries mean that the very old (≥80 by the United Nations definition) now account for the majority of age-related disease cases worldwide, 4 including over half the world’s current dementia prevalence. 5 6
The Cambridge City over-75s Cohort (CC75C) study is addressing some of these major challenges for clinical practice, public health and service planning as part of the Cambridge Institute of Public Health’s programme of research on dying in very old age. 7 8 9 10 11
Key findings from the CC75C study
- Reported symptoms were common: distress, pain, depression and delirium or confusion each had affected 40-50%, and most had experienced combinations of two or more of these.
- Although the majority of those who died were reported as having been comfortable in their final illness, in part due to symptom relief, only 1 in 10 died without any of these symptoms.
- Symptoms were reported to be not always treated effectively, particularly depression, though the study was unable to measure whether these symptoms were reported to healthcare professionals at the time.
- People who died at their usual address (at home or in a care home) were four times more likely to have been reported as having died comfortably than those who died in hospital.
- People living in the community who relied on formal services for support more than once a week, and people who were cared for at home during their final illness but then died in hospital, were less likely to have reportedly died comfortably.
As more of us reach ‘older old age’ and require increasing support, care providers across all sectors will need to adapt to meet increasingly complex multiple needs. Community care is becoming more and more reliant on non-specialists and even in acute hospitals the NHS faces a shortage of palliative care specialists. Important policy considerations for planning community, primary and secondary care provision include the needs to:
- Improve training in end of life care for all staff, at all levels, in all settings.
- Ensure we start training adequate numbers of palliative care doctors and specialist nurses to address the current shortage. 12 13
- Support non-specialists to develop palliative and supportive care skills. All members of the multi-disciplinary teams needed to support very frail older people near the end of their lives require access to good training – in hospitals as well as in community settings, such as care homes.
- Improve access to supportive and palliative care in the community in order to ensure that those who would prefer to die at home, and whose situations are conducive to this, are able to receive the care they need.
- Improve support and access to information and training for family and other informal caregivers who provide much of the care and support for older old people, including many carers who themselves are in older old age. 14
- Raise awareness of depression to ensure potentially treatable depression is not overlooked in very old people.
- Ensure effective links with primary and community healthcare providers that facilitate care homes accessing timely supportive and palliative care for their residents.
- Recognise that contrary to public perceptions, good care homes can provide end of life care akin to hospice care for the very old. For care homes to provide valuable continuity of care, from familiar staff who know their residents, strategies are needed to encourage low staff turnover. This reinforces the need to address staff pay, training and career development opportunities as part of urgently required review of the funding for long-term care and community social care. 15
For whom are these findings relevant?
- The general public
- Voluntary sector organisations representing older people and informal carers
- National and local politicians and policymakers
- Commissioners and service planners
- Care home providers, regulators and staff
- Community and primary care staff
- Training and professional bodies, including the GMC, NMC and Skills for Care
- Study of dying in very old age (n=180 median age 91)
- Retrospective analyses linked three data sources for n=180 deceased study participants (68% women) aged 79-107 in a representative population-based UK study, the Cambridge City over-75s Cohort (CC75C):
1. Prospective in-vivo dementia diagnoses and cognitive assessments,
2. Certified place of death records,
3. Data from interviews with relatives/close carers of deceased study participants including questions about symptoms and “How comfortable was he/she in his/her final illness?”
- Public Health England and National End of Life Care Intelligence Network. End of life care profiles. 2017. ↩
- Office for National Statistics. Estimates of the Very Old (including Centenarians) for England and Wales, United Kingdom, 2002 to 2013. Office for National Statistics. 25-9-2014. ↩
- Office for National Statistics. Estimates of the Very Old (including Centenarians) for England and Wales, United Kingdom, 2002 to 2014. Office for National Statistics. 30-9-2015. ↩
- United Nations Department of Economic and Social Affairs Population Division. World Population Ageing 2015. http://www.un.org/en/development/desa/population/publications/pdf/ageing/WPA2015_Report.pdf ↩
- Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: A systematic review and metaanalysis. Alzheimer’s & Dementia 2013; 9(1):63-75. ↩
- Norton S, Matthews FE, Brayne C. A commentary on studies presenting projections of the future prevalence of dementia. BMC Public Health 2013; 13:1. ↩
- Jane Fleming, Morag Farquhar, CC75C study collaboration, Carol Brayne, Stephen Barclay Death and the oldest old: Attitudes and preferences for end-of-life care – Qualitative research within a population-based cohort study. PLOS ONE 2016 April 5,DOI:10.1371/journal.pone.0150686
Featured on BuzzFeed: http://www.buzzfeed.com/tomchivers/the-only-thing-im-worried-about-is-my-sister and The Conversation: http://theconversation.com/heres-what-people-in-their-90s-really-think-about-death-58053 ↩
- Anouk J. Perrels, Jane Fleming, Jun Zhao, Stephen Barclay, Morag Farquhar, Hilde M. Buiting, Carol Brayne and the Cambridge City over-75s Cohort (CC75C) study collaboration
Place of death and end-of-life transitions experienced by very old people with differing cognitive status: retrospective analysis of a prospective population-based cohort aged 85 and over. Palliative Medicine, 2014 Mar 3;28(3):220-233 (e-pub ahead of print Dec 2013) ↩
- Fleming J, Zhao J, Farquhar M, Brayne C, Barclay S and the Cambridge City over-75s Cohort (CC75C) study collaboration Place of death for the ‘oldest old’: > or =85-year-olds in the CC75C population-based cohort. British Journal of General Practice 2010 (April); 60(573): e171-179, DOI: 10.3399/bjgp10X483959. ↩
- Zhao J, Barclay S, Farquhar M, Kinmonth AL, Brayne C, Fleming J and the Cambridge City over-75s Cohort (CC75C) study collaboration The “oldest old” in the last year of life: population-based findings from CC75C study participants aged at least 85 at death Journal of the American Geriatrics Association 2010 Jan;58(1) 1-11
Featured on GeriPal (Geriatrics and Palliative Care blog) and The Conversation: http://theconversation.com/heres-what-people-in-their-90s-really-think-about-death-58053 ↩
- Fleming J, Evans R, Scheibl F, Buck J, Barclay S, Farquhar M, Brayne C, and Cambridge City over-75s Cohort (CC75C) study collaboration.
Very old people dying – what would relatives like to have seen managed differently? BMJ Supportive & Palliative Care 2016; 6(3):392. ↩
- Public Health England, National Council for Palliative Care, and Mouchel. NCPC Specialist Palliative Care (SPC) Workforce Survey: SPC Longitudinal Survey of English Strategic Networks. 2014. ↩
- Gomm, S. Association of Palliative Medicine Workforce Report June 2016. 2016. ↩
- Retirement on hold – Supporting older carers. 1-20. 2016. London, Carers Trust. ↩
- Care Quality Commission. The state of health care and adult social care in England 2015/16. 1-149. 2016. London, Care Quality Commission. ↩