A positive agenda for the end of life.

A recently published report introduces a welcome and positive note into choice at the end of life

A report published last month is worth reading.  Its title is “What’s Important to Me” and it looks at how the quality of death and dying can be improved by expanding choice.  It was commission by the Government and carried out by a group of people with first-hand experience of health and social care at the end of life.

Too many people, says the report, do not receive good quality care as they die which meets their individual needs and wishes.  This is a challenge, moreover, that is going to grow in size, with the number of deaths projected to grow by 15 per cent over the next 20 years and with more of us living longer and coping with complex medical conditions.  Most people want to be cared for and die in their normal place of residence.  Yet nearly half of all deaths take place in hospital and only one in five at home.  “Up to a third of people at the end of life who died in district general hospitals”, says the report, “could appropriately have been cared for at home”.

The group found that palliative care was accessed unevenly (more often by patients with cancer than by people with other life-limiting illnesses such as heart, lung, liver or kidney disease) and too late – on average only eight weeks before death.  It found variations in care standards between locations, age groups and medical conditions; and that out-of-hours care was not universally available.

There was, says the report, an overwhelming desire among those questioned for better coordination of care.  If more people are to die at home, that means more care in the community, which in turn means more effective links between primary and secondary care and between health and social care practitioners.  And those needing care need to know where to turn.  “Trying to access help and support at such a stressful time can be extremely challenging: how to access support and who to contact was not clear to many”.

These are just a few highlights from a wide range of issues raised in the report: there are many others and the report is worth reading in full.  The group’s response is to recommend the introduction of a National Choice Offer, to be in place by 2020, for everyone receiving end of life care.  The offer should be embedded in the NHS Choice Framework and should include a range of measures to correct the deficiencies which the group has identified. 

This report is important for two main reasons.  The first is that it addresses something which is of relevance to every one of us.  We are, all of us, going to die one day and, for most of us, that is likely to involve a period in which we are aware we are dying and need help and support.  Getting end of life care right, therefore, is not something to be done for this or that group of people but for all of us.

The report is important also because it introduces a welcome and long-overdue positive note into the public debate on the end of life.  Too often these days choice and control at the end of life is discussed in the narrow context of campaigning for what is being called ‘assisted dying’ – ie physician-assisted suicide.  Those who argue that ‘assisted dying’ should be just another choice at the end of life need to recognise that for most of us dying is a highly vulnerable time of our lives and that deficiencies in health and social care, such as the report has identified, can intensify those vulnerabilities.