As the volume of new commentary and information on end of life issues increases it can be hard to step back from the daily flow of material. I’ve always enjoyed the BBC Radio 4 programme ‘Pick of the Week’, so from time to time on the blog I will pick out some of the highlights from my week, and perhaps have a little more time for reflection than is afforded by the 140 characters of Twitter. Here goes!
The voice of advocacy for end of life care rang out strong and assured on 21st April when Dr Katherine Sleeman spoke with authority and passion to an audience of some 4,000 people at London’s Royal Albert Hall. The event was called Imaging Medicine and its purpose was to show how collaboration, innovation, imagination and inspiration can make our world a healthier place. Katherine more than fulfilled the expectations of the organisers with a speech (4.21 into this link) which reminded those assembled that despite all the advances of medicine, mortality rates still remain unchanged at 100%. She called on medicine to start ‘saving deaths’ just as it also seeks to ‘save lives’. She showed that the ‘good death’ is something we are still striving to determine and that greater open-ness with dying people is something clinicians continue to find challenging. She also demonstrated that palliative care isn’t about admitting failure to the patient – not only can it improve quality of life and the experience of care, as the Temel et al study showed – it can even increase length of life. Our thanks must go to Katherine for getting some important messages across, beyond a specialist audience, in ways that drew attention to medicine’s engagement with dying and death -and in a manner that must surely have been inspiring to others.
VOICES results available for local areas – if you are in England
The next thing to catch my eye in the last week is the tremendous work being done by Marie Curie in England in combining national and local data on end of life care to improve understanding and access to information. This inspired project has taken the results of two cohorts of respondents (2012, 2013) from the VOICES questionnaire in England. These have been combined by the Office of National Statistics and broken down by local areas – and made easily accessible via the Marie Curie website. The National Bereavement Survey (VOICES) is a postal survey of bereaved relatives which is commissioned by NHS England and delivered by the Office for National Statistics. The 2012 survey achieved 22,292 responses (a response rate of 45.7%). It records bereaved relatives’ perceptions of the care their loved one received in the last months of life. Key measures include levels of dignity and respect afforded by professionals in different settings, as well as pain management and the degree to which services are coordinated. Through this new application users can look at scores for key items on the VOICES questionnaire, broken down to local areas. It shows some striking geographic variations.
The last time the survey was conducted in Scotland was in 2008 – on a sample of less than 1,000 people. There is a huge opportunity to develop this tool in the Scottish context and to make the VOICES data available at Health Board level.
Brilliant graphic on American mortality
The third thing of real note to catch my attention this week has been a recently published slide show on causes of death in America. Produced by Matthew C Klein for Bloomberg, this fascinating presentation shows that the US mortality rate fell by 17% between 1968-2010. This was mostly attributable to improved survival among men. Generally, Americans are living longer and dying of ‘natural causes’. About one third of all deaths are among people age 85 and older. But with this improvement in survival and population ageing has come increased rates of Alzheimer’s Disease – which since 2011 have accounted for 40% of the increase in Medicare spending. It would be interesting to see how this scenario plays out in other western countries.
So … quite a week. Three excellent initiatives making the case about end of life issues – and using the best of modern technologies as the vehicle.