Caring about life’s end
21 November 2018
This month in Leeds, around 50 health and care professionals will take precious time out of their busy schedules to attend an important event. They have agreed to come together to help transform our approach to caring for people across the city who are nearing the end of their lives. The Leeds Palliative Care Network (LPCN) is leading the case for change in Leeds. Palliative care specialists Professor Mike Bennett and Dr Mike Stockton are working with them and summarise here what needs to be considered.
Caring for people towards the end of their lives is known as ‘end-of-life’ or ‘palliative’ care. In Leeds, we are proud of the quality of palliative care we offer people.
What’s working well?
We’ve expanded our Palliative Care Network to help as many health and care professionals as possible work in the best way together for patients. It now includes partners such as Carers Leeds, the Leeds Clinical Senate (the city’s most senior medical, nursing, and social care leaders), Leeds Academic Health Partnership and Leeds Informatics Board. We’re also forging better links with care homes in Leeds.
We have appointed an experienced pharmacist to lead the way in how palliative care medicines should be used in timely, safe ways across all care settings.
Palliative care is for all those who need it, so we include those with dementia and those who are frail.
We have developed a citywide electronic referral system. This makes sure people are referred in a timely way to the most appropriate place for care, including improving the booking process for palliative care ambulances.
By using the recently redesigned Leeds Bereaved Carers’ Survey and by analysing patient information from across the city we can better understand our patients’ experiences and needs.
And we have started providing education and training for our workforce via a new video conferencing system called ECHO. We believe this is critical to help us all continually learn how to provide the very best care.
How do we go from good to great?
Recent research has highlighted further important ways in which we can improve care for people nearing the end of their lives. Many of the research findings are not unique to Leeds.
So how can we go from good to great in the care we offer?
Some of the most important aspects to consider when getting this right are where, when and what? Where do people want to be cared for and die, when should that care start and what should it include?
People often associate palliative care with being in a hospice, but it is also given in people’s homes, in care homes and of course in hospitals.
In fact, 30 per cent of all hospital inpatients are in the last year of their lives and – despite it being people’s least preferred place to die –almost half of all deaths happen in hospital.
Research shows gaps in the timing of palliative care for two main groups of people:
- those who are aged 75 or older and
- those whose illness is not cancer. Palliative care is being offered on average nearly a month later to those whose illness was not cancer.
These groups of people are also much less likely to have an advance care plan, setting out where, when and how they want to be cared for towards the end of their lives.
As a result, palliative care is offered to them late – very near the end of their lives, when they could have benefited from it sooner.
Other recent research led by the University of Leeds showed that terminally-ill people experience significantly better quality of life before they die if they receive early access to palliative care. If they had cancer, the earlier palliative care also meant they were less likely to have aggressive anti-cancer treatments, such as chemotherapy, in the final stages of life and to avoid dying in hospital.
That research also revealed that that one in three cancer patients was not referred to specialist palliative care services at all.
It seems clear that we need to have better, earlier conversations with people about what care they want and where as they near the end of their lives?
Around 27 per cent of deaths in Leeds are of those suffering terminal cancer. But almost as many people die from illnesses related to heart and blood circulation problems, such as heart attacks and strokes. Whatever the cause of illness, suffering pain is often one of the most pressing concerns.
However, research shows that end-of-life pain relief is most effective for those in a hospice but poorest for those at home. Yet home is exactly where most people want to die.
And good pain relief is more than twice as likely for those receiving palliative care and nearly twice as likely for those with an advance care plan.
The future challenge
People are generally living longer but not necessarily healthier lives and the demands on the health and care sector continue to rise.
We know that 20 per cent of NHS costs and one in four emergency hospital admissions happen in the last year of people’s lives. So, for the taxpayer and the health and care system as a whole, it also makes sense to introduce palliative care early and to help people avoid hospital admission.
The number of deaths in Leeds per year is currently around 6,800 and is projected to rise by 25 per cent over the next 20 years. It’s estimated that three quarters of those people would benefit from timely palliative care. So these issues are set to escalate and action to address them is needed.
Commissioners of health and care services in Leeds are using an ‘outcomes-based’ approach for people. That means healthcare funding is based on what matters to the people of Leeds.
Those who are nearing the end of life have told us they want:
- care that is considerate and supportive
- their wishes to be taken into consideration
- consistent information for themselves, their families and carers
- their privacy respected, and
- to choose where they die.
We have superb expertise around us in Leeds to help make all this happen. The Academic Unit of Palliative Care at St Gemma’s Hospice is the first in the UK and a world leader in palliative care research. It is a partnership between St Gemma’s Hospice and the University of Leeds, working to improve care of those approaching the end of life through integrated research, teaching and clinical practice.
Our Leeds Palliative Care Network colleagues represent front line clinicians and managers providing palliative care services in Leeds. The ideas and contributions that they bring to our event this month will help us shape together for Leeds how we can address the issues highlighted by recent research.
We will then take the proposals for change and discuss them with those we care for and with their families and carers.
And with further support from Leeds Academic Health Partnership, we hope to transform these innovative ideas into real change and improvement.
Leeds aims to be the best city for health and wellbeing. That means every day for every person they are living life with as much choice, dignity, respect, comfort and care right to the end.
Professor Mike Bennett is St Gemma’s Professor of Palliative Medicine and Director of the Academic Unit of Palliative Care. Dr Mike Stockton is St Gemma’s Chief Medical Officer and Consultant in Palliative Medicine, and chair of Leeds Palliative Care Network
 The Leeds Informatics Board, a group of senior managers and clinicians from across health and social care organisations in Leeds, commissions the delivery of the Leeds Care Record.
 Allsop MJ, Ziegler LE, Mulvey MR, Taylor R, Russell S, Bennett MI. Duration and determinants of hospice-based specialist palliative care for patients in the UK. A national retrospective cohort study. Palliative Medicine 2018;32(8):1322–1333
 Ziegler L, Craigs C, West R, Hall G, Carder P, Hurlow A, Martin-Milares P, Bennett MI. Is palliative care support associated with better quality end of life care indicators for patients with advanced cancer? A retrospective cohort study. BMJ Open 2018; 8(1):e018284
 Public Health England, End of Life Care profiles (2016) https://fingertips.phe.org.uk/profile/end-of-life
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