‘Rights’ of passage


Norman Warner on end of life choice and the increased pressures on the NHS  

Around half a million people die each year in England, two-thirds of them over 75. A century ago most of us would have died in our own homes. Today most of us will die in hospital despite the findings in the Gomes report (published January 2012) showing an increase between 2004 and 2010 in the proportion of people dying at home. In that study, only 20.8% of deaths took place at home, a lower proportion than the US, Canada and parts of Europe. We also face a period of increasing numbers of deaths involving people with more complex medical needs. This could push our healthcare system towards more people dying in institutions unless we take strong positive action to improve people’s ability to make informed choices about where they die. 

It is very clear that considerable progress has been made on many of the issues identified by the last Labour government in the 2008 End of Life Strategy. Professionals have become much better at identifying people approaching the end of life and discussing their needs, wishes and preferences with them and their families. Education and training of professionals on end of life issues have improved, research and measurement have improved and there have been many excellent local initiatives. All these developments have increased our understanding of how we can improve the prospects of a good death for people. 

We all want to be treated as individuals, but when it comes to dying we also have some common needs – dignity, respect, relief of pain, a preference for familiar surroundings, the company of close family and friends when we want it. Such considerations are being better addressed as a result of the 2008 Strategy but there remains a long way to go. 

Professor Sir Mike Richards, National Clinical Director for End of Life Care, has done so much to take forward the Strategy. In the Fourth Annual Report he identifies “deaths in usual place of residence” as the main marker of progress, adding “while this does not necessarily capture individual patient choice it is nonetheless a good proxy.” Nationally by April 2012 42.4% of people are now dying at home or in a care home, an improvement from about 38% four years ago.

However, this national figure conceals considerable regional variation. If you live in the South West with 48% of deaths taking place in the place of usual residence you have more choice than in London where it is only 35%. ONS data for 2008-2010 shows around 55% of people across the UK dying in hospital, but with huge differences – from 39%  to 70% – between local authority areas. This variation is totally unacceptable and strongly suggests problems with professional and organisational practice and attitudes. It is not just a matter of fairness and patient choice but also cost, as Sir Humphrey would say “not an inconsiderable consideration Minister.” Marie Curie suggest that a week of palliative care in the community at the end of life costs about £1000, while a week of hospital in-patient specialist palliative care costs around £3000. 

So what’s to do? I have three suggestions to help speed up and implement people’s right to have their preferences on where they die. 

First, bring end of life choice into the Secretary of State’s Mandate to the NHS Commissioning Board as many parliamentarians have suggested. 

Second, it is no use simply rewriting the NHS Constitution to give people more rights to have their voices heard if you take no notice of what they say. While Ministers promised a 2013 review of the end of life strategy that “will inform us when a right to die at home, including a care home, might feasibly be introduced”, they need to be bolder. The evidence is strong that this right should be written into the Constitution in order to deal with the huge local variations in patient experience and professional practice. The current postcode lottery is totally unacceptable. 

Third, we should consider going further and provide citizens with a statutory right to exercise such a right to die at home – either in government legislation or in a Private Member’s Bill. On the latter, I would certainly contemplate bringing forward such a Bill if there is no positive progress is forthcoming.

Lord Norman Warner is a backbench Labour Peer in the Lords and a former Health Minister

Published 8th November 2012


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