Care fears over level of cancer deaths at home
A LEADING palliative care charity said it is concerned that many cancer patients are not receiving the end-of-life care and support they need, as record numbers die at home with the disease.
The number of people dying at home with cancer in Scotland reached an all-time high of 6,940 in 2021, up from 6,825 in 2020, at a time when community nursing, social care, and charity resources are more stretched than ever.
This compares to an annual average of 4,937 in the four years prior to the Covid pandemic – an increase of 39 per cent.
Homes and private addresses overtook hospitals as the most common place of death for cancer in 2020, and the shift is expected to continue.
As of 2021, 41% of cancer deaths in Scotland were occurring at home compared to 37% in hospital, 14% in a hospice, and 8% in a care home or other institution – such as prison.
Although there has been a long-term upward trend in deaths at home with cancer, the scale of the increase and the sudden spike has put providers under pressure.
It also comes against an overall increase in deaths at home – from any cause – since the beginning of the pandemic, with nearly 18,000 deaths at home registered in Scotland since the beginning of 2022.
Amy Dalrymple, associate director for policy & public affairs at Marie Curie in Scotland, said: “With such an increase in the number of people dying at home, and despite the best efforts of health and social care teams, we are concerned that many people may not have received some or all of the care and support they needed in their final
hours, days, weeks and months of life.
“Our Marie Curie Nursing Service experienced a 15% increase in demand in 2020/21, and the team cared for almost 9,000 people across Scotland – the highest on record since the charity began 75 years ago.”
Research carried out by the charity predicts that, by 2040, up to 95% of all the people who die in Scotland may need some form of palliative care, with the conditions managed by end-of-life professionals becoming increasingly complex.
Ms Dalrymple added: “The number of people dying from more than one terminal condition, such as cancer and organ failure for example, will also have risen by 80% by 2040.
“As a result, disease trajectories will be more complex, and this means different and sometimes increased palliative care needs. There is greater need for the coordination of relevant health and social care services.”
The Scottish Government is currently worked on an updated cancer strategy and is reviewing evidence on end-of-life care.
Dr Donald Macaskill, chief executive at Scottish Care – the umbrella body for independent social care providers – said the growing demand for care at home was putting the system under strain.
He said: “Homecare staff have for many years offered quality palliative and end of life care to individuals living with cancer and many other lifelimiting conditions.
“Nevertheless, the enormous pressures which the care at home and housing support sector are currently facing are putting a very real strain on the ability to continue to deliver quality end of life care.
“Faced with sharp reductions in the availability of a skilled workforce and with contracts which no longer reflect the true cost of delivering compassionate care, many organisations are choosing to either hand back contracts or withdraw completely from public funded care delivery.
“At present there is a renewed focus on the unsustainable state of our care home sector but there should be equal concern for the parlous nature of homecare in Scotland.”
Colin Poolman, director for the Royal College of Nursing (RCN) in Scotland, said district nurse shortages were a particular problem.
The most up-to-date available statistics show that the district nurse vacancy rate in Scotland doubled from 6.5% to 12% between June 2019 and June this year. In Lothian it had reached 30%, compared to 1.6% in
June 2015.
Mr Poolman said: “Complex clinical needs are increasingly being met within a homely environment, which means that the skills and availability of community nurses is becoming ever more important.
“While this patient group will be prioritised to ensure the best quality care possible, community nursing teams are under-resourced and shortstaffed with increasing workloads.
“Over 1,800 NHS community nursing posts are vacant, with a 12% vacancy rate in the district nursing workforce.
“All staff should have the appropriate time to deliver quality care, and these challenges are a huge frustration for many community nurses who may be unable to give the time they want to patients receiving palliative and end of life care.”
Gordon Mclean, a palliative care nurse and strategic partnership manager for Macmillan Cancer
Support in Scotland, said: “The sudden change a couple of years ago, and the increase in demand – that obviously created pressures and at that particular point in time, people probably weren’t getting the service they required at the end of life.
“In response to that, services have actively made the changes to anticipate and plan and coordinate the support that people need when they’re going to be dying at home or in the care home.
“Lots of discussions have taken place across the service and across Scotland in how to improve that, but that’s against the pressures and the constraints that are on the NHS and social care at the moment, so inevitably yes, we could do with more capacity on the system to support people at the end of life. More clinical staff, more social care staff, would help.”
A Scottish Government spokesman said: “We want people to receive care where they feel most comfortable. For many this will be at home with their loved ones.
“We are developing a new strategy to achieve the very highest standards of care right up to the end of life, and ensure high quality palliative care wherever and whenever it is needed. We have appointed a National Clinical Lead for Palliative and End of Life Care to progress this.”
There should be equal concern for the parlous nature of homecare