Stamping out the variation in end of life care in England
A report by Macmillian Cancer Support highlighted the pitfalls in end of life care despite a government pledge to drive up standards by 2020.
The government has made clear that it wants to improve end of life care. It has pledged a national commitment to drive up standards and end variation by 2020 in England.
The aim is to ensure people receive personalised care and support throughout their final months and are able to choose where they die when the time comes.
To achieve this goal, the 44 local sustainability and transformation partnerships have been tasked with driving forward change on the ground.
But just how well are people with cancer currently cared for and supported at the end of life? According to a report by Macmillan Cancer Support, there is a long way to go to achieve the government’s goal.
The charity looked at the experiences of cancer patients across England by analysing data from the past five years covering more than 500,000 people, as well as taking first-hand testimonies from patients, families and staff.
number of people who died from cancer in 2015
(Source: Public Health England)
The report, The Final Injustice, shows that for too many end of life is plagued by repeated emergency visits to hospital, a lack of support in the community, inadequate pain relief and little choice over where to die. What is more, those from deprived areas seem to be adversely affected.
'Change must happen'
Macmillan specialist adviser for end of life care Adrienne Betteley says things must change.
‘How we treat people in their dying months shows the value that we, as a society, place on life,’ she says.
‘Access to the right care and support when you die should be a universal right and not depend on who you are or where you are from.
‘But this is far from the case. The fact that people are suffering in their precious final weeks is heartbreaking.’
In 2015, Macmillan looked at 130,700 people who died from cancer – around 57,000 of them within a year of being diagnosed.
On average, they were admitted into hospital as an emergency 4.5 times in their last 12 months of life, with people from the most deprived areas 15% more likely to have an emergency visit.
'How we treat people in their dying months shows the value that we, as a society, place on life'
There is also a tendency to end up in hospital at the end of life despite few wanting to.
Just 1% of people with cancer say they want to die in hospital, yet more than one third do, and those in the most deprived areas are 18% more likely to.
And this is not just a matter of personal preference. Those who die in hospices are much more likely to get good care at the end of life. The Care Quality Commission rates 90% of them as outstanding, while 42% of end of life care services in hospitals are judged to be not good enough.
Families ‘haunted’ by end of life care
When good palliative care is not provided, the result for the patient and their loved ones is terrible, says Macmillan Cancer Support.
The stories of two families who provided evidence to the charity illustrate this.
Caroline Shead says she was left feeling guilty about the death of her father, Dave, at the age of 69. He had advanced lung cancer and had a stroke and heart attack in the final six weeks of life.
She says he ended up dying in hospital with ‘no dignity’ and the family received no support as his health failed.
He was eventually admitted to hospital where he fell into a coma and had an emergency chest drain inserted.
‘There was no joined-up care between the cancer team, heart team, the GP and palliative care,’ she says.
‘As strange as it sounds, no one told us he was dying. It was only on the morning he died that the nurse said we only had a few hours left.’
Charity Bagwell says she is still haunted by the death of her mum, Valerie, three years ago at the age of 65
The family had discussed Valerie moving into a hospice after she was diagnosed with terminal pancreatic cancer.
But two months after diagnosis she was rushed into the emergency department after her condition deteriorated. Her bowel had perforated and doctors said there was nothing that could be done.
Charity, 30, says despite her mother being in obvious discomfort she had to fight for pain relief.
‘I spent the last hours of my mum’s life running round the hospital trying to get her some pain relief. When my mum died, she didn’t look peaceful. Those final hours are the lasting memories I have of mum.
‘I’m still angry. The thing that will always haunt me is that I had promised her that no matter what happened, she wasn’t going to die in pain. I wasn’t able to keep that promise.’
RCN Cancer and Breast Care Forum chair Sue Cruickshank believes some of the pull towards hospitals is unavoidable given the tendency to keep patients on treatment at the end of life. ‘These are toxic treatments that have side effects,’ she explains. ‘We can’t expect them not to come to emergency departments. Some will need to.’
average number of emergency hospital admissions in last year of life
(Source: Macmillan Cancer Support)
Macmillan palliative care consultant Ollie Minton agrees. ‘In some cases when a person is extremely unwell and has a lot of complications, hospital can be the best place.’
But he says that can come at a cost. ‘When a person is in hospital at the end of their life, surrounded by all this medical support, it’s easy for them to be over treated and for extending their life to be prioritised over maintaining their quality of life.’
Lack of 24/7 specialist palliative care services
But Chesterfield Royal Hospital NHS Foundation Trust cancer information and support service lead Maria Leadbeater says the problem is being compounded by a lack of specialist palliative care services that can provide 24/7 support in the community.
‘Patients may need advice, medication or care during the night, but a lot of these services are only available nine-to-five.
‘It’s not always possible for them to get the help they need. That is when they end up at the emergency department.
‘I think there is a particular problem in more rural areas. Services can be working over a large geographical area and it can mean the distances between patients is too much for staff to respond to calls quickly.’
One major consequence of this, according to Macmillan, is that many patients struggle to get hold of adequate pain relief when they need it. The charity points to evidence gleaned by patients’ relatives in the National Survey of Bereaved People, which suggests 12,500 people with cancer found themselves in this position last year.
Lack of staffing exacerbating the issue
London North West Healthcare NHS Trust palliative care clinical nurse specialist Kelly Critcher says the problem is also exacerbated by the lack of district nurses and GPs available to provide home visits as well as hospice places.
She says this situation has resulted in families with money resorting to paying for private care.
‘I feel there should be more information given to cancer patients earlier on in their journey'
But she also believes panic plays a role too, particularly right at the end of life. ‘People can suffer very distressing symptoms when they are dying,’ she says. ‘Even with the best preparation and planning, carers can reach crisis point at home and if this happens to be out of hours, when there is limited support available, often panic sets in and family members call an ambulance.’
of end of life services in hospitals were judged as not good enough by inspectors
(Source: Care Quality Commission)
To tackle this, she would like to see all healthcare professionals take a more proactive approach at the end of life.
‘I feel there should be more information given to cancer patients earlier on in their journey. Often we meet people when they are in the last weeks of life and they have come into hospital because, to them, their symptoms are distressing and unexpected.
‘But to us they are symptoms that we see daily. Being able to empower people with knowledge about their illness, as well as giving them information on what to expect, can take away the panic that sets in when new symptoms occur.
‘Often we only see people when they are in the last week of life, yet we are the ones initiating both advanced care planning and end of life discussions, despite there having been numerous contact points with other professionals.’
What good palliative care looks like
Macmillan Cancer Support has set up a specialist care at home service to try to improve end of life care.
It is being piloted in six areas – Hull, West Norfolk, Isle of Wight, Birmingham and Solihull and Dudley – having first been developed in Sussex where the ‘24/7 hands-on service’ was shown to reduce emergency department visits, length of hospital stays and increase a person’s likelihood of dying in their preferred place of care.
Each pilot involves a slightly different model. For example, in north London the service is based out of a hospice with a team providing a rapid response crisis service.
Meanwhile, in Hull a community interest company has been set up and involves nurses and palliative care pharmacists.
But the overarching principles are the same: consultant-led, early referral during active treatment and advanced care planning and treatment, including blood transfusion, IV antibiotics and intrathecal pain relief, are provided at home or close to home.
Evidence from the most recent National Survey of Bereaved People suggests the approach is having an impact. In the areas where the pilot was conducted, eight in ten people died in what was considered to be the ‘right place’.