It is unclear for most of us when the last year of our life will be, or what it will look like. A research project has mapped out the last year of over 53,000 Scots, to see what life looked like in a basic way: whether we lived alone, whether we needed palliative care, and where we died.
The sort of care we receive in our final weeks and days isn’t great dinner party fodder - our ability to foresee our own demise isn’t something that comes naturally, let alone what sort of care we’ll be receiving, and if we live alone or not.
World Health Organisation stats say that over half of us die of something that requires end-of-life care of some sort. This number is probably higher, since this all depends on definitions. A German study (Scholten et al, 2016) put end-of-life care at more like four people out of every five. This fits in with researcher Anna Schneider’s 2018 research in Scotland.
Point is, most of us will need looking after before we die to a larger or lesser degree, with the need growing with an ageing population. As we age, we develop more care-worthy ailments, including losing our mental faculties. This period of lowering faculties increases with older age, due to frailty or dementia. According to death records in Scotland, deaths from dementia doubled from 2001 to 2011, and rates of dementia continue to increase.
Those with shorter life expectancy from illness, for example cancer patients, increased to almost 30 per cent of deaths in Scotland in 2011.
The data: what is the last year of our lives like?
We would like to think that everyone gets the support and care that they need, but this isn’t always true, and much of this is preventable with a little better planning - and better financial products that account for living longer and requiring increasing levels of care.
Schneider and research partner Iain Artherton mapped out the last year of life using census data and death records of Scots, and here’s what they found.
The research examined the records of the 53,517 people who died in Scotland in the year of the 2011 census.
The age division was as follows:
One in five were aged under 65
Fifty per cent were aged 65-84
Just under a third were aged 85+
One in three people lived alone, while about 40 per cent were widowed. The closer people were to dying, the more likely they were to live with others, however this differed by socioeconomic status.
The worse off someone’s home neighbourhood was, the more likely someone was to live alone. Thirty-seven per cent of those aged 70 and over (high-care ages) in more deprived neighbourhoods still lived alone, even in the last month of their lives. This rate in higher socio-economic areas was sitting at 25 per cent. In this age group overall, 18 per cent of people died in a care facility.
Eurostat data (2014) shows that 32 per cent of those aged 65+ in Europe live alone. The United Kingdom numbers are almost identical.
In Australia the 2012 census data show that living alone in older age runs along gendered lines, with 39 per cent of women aged over 70 living alone , compared to 19 per cent of men. In the 80+ age group, 23 per cent of men and 40 per cent of women live alone.
What this means is that many of us will require extra hands on deck for living - strangers providing community care services.
Considering new options - we have to do better
We need to think out of the box, Schneider says, and consider new options to ensure we are the decision-makers, instead of ending up in the role of the dependent. She asks, what about retirement villages, housing complexes with people from different generations, or living with friends in adjacent flats or one house?
When it comes to the crunch, care decisions are often made on the fly when a situation that requires immediate action presents itself, which is not ideal. Taking the time to find the very best home for a family member or ourselves takes time and research, and places are not always available. This can result in someone being placed into a care facility that will not meet their needs in important ways.
How we prepare for the end of our lives
We get life insurance but don’t prepare for end-of-life care, that in all likelihood we will need. Some of us will need care for quite some time, if current life expectancy increases continue.
Schneider said in an article on the Conversation: ‘I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.
‘Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation.
‘It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.’
Scholten N, Günther AL, Pfaff H, Karbach U. The size of the population potentially in need of palliative care in Germany--an estimation based on death registration data. BMC Palliat Care. 2016;15:29. Published 2016 Mar 8. doi:10.1186/s12904-016-0099-2
Demographics of living alone, David de Vaus and Lixia Qu, Australian Family Trends No. 6 — March 2015, Australian Institute of Family Studies
End of Life Care in Scotland: Trends in the Population in Need of Palliative Care, Anna Schneider Iain Atherton, https://ijpds.org/article/view/502