New research on the increasing amount of care people need at the end of life.

A paper recently published in the Lancet (and available online), has been reported widely. The headline statement is that “the amount of time spent needing daily care at the end of life has doubled in England over the past two decades.” See articles by the BBC and the Guardian for example.

The study compares data for people aged 65 and over from 1991, with corresponding data from a similar demographic in 2011. The paper contains much useful data beyond the simplistic headline. First, life expectancy for a 65 year old has increased significantly. In 1991 a 65 year old man could expect to live for 12.9 years. By 2011 this had increased to 17.6 years, an increase in life expectancy of 4.7 years over the 20 year period. The equivalent figures for women show life expectancy has increased from 16.5 to 20.6 years – an increase of 4.1 years.

More interestingly, the study shows how the care needs for the over 65s are changing. The report uses a measure of care needs in terms of the frequency with which care actions are needed. “High dependency” is defined as needing 24-hour care to cater for frequent unpredictable needs. This could be as a result of being bed or chair bound, or incontinent for example. “Medium dependency” refers to needing care at regular intervals throughout the day, for example with preparing meals. “Low Dependency” refers to help needed less than once per day, such as with baths, shopping or cleaning. “Independent” means anyone else.

People have different views as to how much care they would be happy to receive in later life. Some wish to live as long as medical science can enable, regardless of how much care they would require. Others would prefer to have assistance to die when their quality of life gets permanently below a certain minimum level they consider tolerable. We can roughly equate this quality of life measure with the level of care that is necessary. Those who do not wish to live as long as possible might reasonably choose to end their life when they reach “high dependency”, or for some, possibly “medium dependency”, depending on their specific situation. Obviously any decision a particular person might reach, that their life is complete and they should take steps to end it, depends on many factors, but dignity and independence in terms of care needs, and the anticipated duration of this level of care, are likely to be strong factors.

In 1991, men of 65 or over could expect to require high dependency care for 0.4 years. This rose to 1.3 years by 2011. For women the figures are 0.6 years in 1991, rising to 1.9 years by 2011. This is a more than three-fold increase for both men and women over the 20 years considered.

If we look at the duration that a 65 year old could expect to need either medium or high dependency care, (the “daily care” referred to in the headline report), the figures for men are 1.1 years in 1991, rising to 2.4 years by 2011; and for women, 1.6 years in 1991 rising to 3.0 years by 2011. This is the “doubling” which was widely reported.

Of course, these expectancy figures are averages. Some people will have much longer than average periods of medium and high dependency care, while for others they will be much shorter.

The figures are highly significant for those who would prefer not to spend an extended period of time with substantial care needs at the end of life. For them it is perhaps the three-fold increase in expected duration of high dependency that is the most worrying statistic.

MDMD would like such people to have the legal option of a medically assisted death, if that is their own well-informed and settled wish, without having to travel abroad. This report reinforces our view that assisted dying legislation needs to provide help for people based on their quality of life, irrespective of their life expectancy. To limit assisted dying to those with a life expectancy of six months or less, (as recent failed parliamentary attempts have tried to do), misses the point that today’s 65-year-olds can expect to live in a state of high dependency at the end of life for well over a year for men, and nearly two years for women. This is not the sort of good death that some people want.