Each year around 110,000 people in the UK who need palliative care die without receiving it. What we know from research carried out by the London School of Economics and Political Science
(LSE) is that many of these people will have a terminal illness other than cancer. Across England, Wales and Northern Ireland in 2012/13, 88 per cent of palliative care inpatients had cancer, even though cancer only accounts for 29 per cent of deaths each year.
This is not to say that people with terminal cancer have a particularly ‘good’ experience of care at the end of life – the National Survey of Bereaved People and the recent Public Health Service Ombudsman report Dying without dignity suggest otherwise. But there does appear to be inequity in access to palliative care that leaves many people with non-cancer conditions without the care and support they need.
The reasons for this are complex. But today (23 June), Marie Curie has published Triggers for palliative care, which highlights some of the key barriers preventing people with non-cancer conditions from accessing palliative care.
One of the barriers is a lack of understanding among health professionals about what palliative care is and who it is for. Many people tend to think palliative care is primarily for people with terminal cancer and usually at the very end of life – in the last weeks, days, and hours.
But palliative care can enhance quality of life for most people with a terminal illness, and can be beneficial years before a person dies. Palliative care also plays a vital role in keeping people out of hospital – a key priority for us all. Research by the Nuffield Trust has shown that patients of the Marie Curie Nursing Service are less likely to use A&E, more likely to die at home, and have total care costs of £500 less than people who have not been provided access to a Marie Curie nurse by their local NHS.
Another key barrier is the lack of training for health and social care professionals on when they should refer someone to palliative care (it is notoriously difficult for conditions other than cancer), and also how to have the difficult conversations about death and dying that accompany discussions about such care.
This is especially important for generalists – GPs and district nurses – who hold the keys to palliative care services but might be missing the signs they need to refer someone to a palliative care service, such as high hospital use and persistent and worsening symptoms.
Addressing this situation is important: 110,000 people dying each year without palliative care is too many. And we all know the demographic challenge that, by 2040, there will be 100,000 more deaths every year, many of whom will have conditions other than cancer and often multiple conditions.
This will put extra pressure on the NHS. And without access to palliative care, we will see more of the care failings highlighted in Dying without dignity, such as the man who endured 14 attempts to insert a line because his doctors did not recognise his veins were collapsing because he was dying and they needed to provide subcutaneous pain relief.
In the long term, there certainly needs to be commitment from the Government to improve training for health and social care professionals around the care of people with a terminal illness, and investment in palliative care services as a cost-effective way of moving people out of hospital into the community.
However, there are more immediate ways to improve access to palliative care for people with a non-cancer diagnosis that can be led by health and social care professionals, service professionals and commissioners. For that reason, Marie Curie has written to all medical and nursing directors in the UK, asking them to:
- make sure their staff know who their local palliative care teams are
- provide enough information about palliative care to staff and patients
- work with their clinical leads to increase palliative care access to people with non-cancer diagnoses.
At Marie Curie
, we know we also have a role to play in continuing to draw attention to the huge amount of people missing out on palliative care, and we are working proactively with our partners in the NHS to find solutions. Only through the whole sector working together will we be able to end the inequity in access to palliative care.
Dr Jane Collins is chief executive of Marie Curie. Follow her and the organisation on Twitter: @DocJaneCollins @mariecurieuk
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