With the number of people needing palliative care expected to rise, what needs to happen within the homecare sector to cope with demand? Alistair Kleebauer examines.
The Covid-19 pandemic revealed a stark increase in the number of people dying at home which should serve as an alarm bell for the government and the social care system. As the Bureau of Investigative Journalism reported in May, more than 25,000 people died in the past year while receiving homecare in England.
This suggests that reported deaths increased by nearly 50% between April 2020 and March 2021 compared to the previous year.
The pandemic undoubtedly had an effect, with people put off from going into hospital and the government making it easier for them to be discharged from hospital into the community.
But the number of people dying at home in the next couple of decades will only grow, placing further strain on homecare companies to provide compassionate end of life care.
A study by King’s College London in 2017 found that, by 2040, at least 160,000 more people each year will need palliative care in England and Wales – an increase of at least 42%.
‘If you ask most people where they’d like to die, it would be in the comfort of their own home, surrounded by their own memories and with the people that they want to be with,’ said The Good Care Group director of operations Hannah Morgan.
‘Even stuff like what scent there is, what music’s playing, who’s there… I think you’ll agree that most people would opt for that rather than being in a very clinical setting.’
The wish to die at home can be very strong for some people, even those with only a short amount of time left.
Morgan said: ‘We had one client who was absolutely desperate to come home to die. He was very unwell and it was a matter of hours from the time he was discharged into our care before he passed away. He had a beloved cat and he absolutely wanted to be at home with his cat. We facilitated that because that was his wish, that was absolutely what was most important to him.’
In addition, people will often not be able to die elsewhere, such as in a hospice, leaving home or a late rush to hospital as alternatives.
SweetTree Home Care Services chief executive officer Nicki Bones said: ‘Hospice is also extraordinarily good, there are extremely good hospices.
‘But the limited spaces for hospice is quite sad. So people may want to but might not necessarily achieve that. Hospice care does not get a lot of funding and it should get more.’
Both The Good Care Group and SweetTree have dedicated palliative or end of life services, which Bones said is ‘relatively unusual’.
That extends to training, with The Good Care Group’s care management team working with palliative care consultant Dr Kathryn Mannix on how to have sensitive but positive conversations with clients about the dying process.
Morgan said: ‘We do train our carers on how to have those sensitive conversations.
‘So really talking to the client in advance of them becoming very unwell around “if you became very unwell, what would be the most important things for you?”
‘And capturing that information in an informal, friendly, non-threatening way.’
Bones said that her company trains its support workers to act as a focal point for communication between the client, the family and staff from other health services who make up the multidisciplinary team.
She added: ‘That’s really important because between discharge from hospital or liaison with the family or the district nurse coming in to do something that the person is not able to recall… it can be all sorts of things [so] that continuity of communication is a central focus point.’
The pandemic illustrated the immense pressures placed on the social care system and highlighted problems around funding, recruitment and training that hinder homecare providers, including their end of life care.
A survey of directors of adult social services in England in June showed three-quarters were concerned about the financial sustainability of some of their providers, while 15% were worried about most of their home and community care operators.
Marie Curie’s head of policy and public affairs for England Ruth Driscoll said:
‘The pandemic has just accelerated concerns that were already there about the financial viability of social care service providers to cope with the increasing demand…
‘Even the Care Quality Commission has warned that providers have not yet borne the full cost of the pandemic and that there may be a delayed impact on their viability. So these pressures are only going to increase as demand for social care grows in the next few years.’
She also pointed to ‘chronic workforce challenges’, highlighting low pay and high staff turnover.
Homecare Association learning and development specialist Jayne Easterbrook said: ‘You’ve got to have the right staff because it’s not right for everyone to give end of life care. Not all people are able to deal with that. So you’ve got to find the right staff and then get them trained.’
She added that ‘a lot of’ families have been ringing her organisation during the pandemic saying that hospitals across the UK have asked them to find their own homecare when a loved one is discharged from hospital.
Easterbrook said: ‘They’re struggling a bit to find care provision. That’s only going to get worse because, until the sector is properly funded for even the basics, finding good provision is going to become more and more difficult for people and it’s going to take that choice away of dying at home if that’s what they want.’
Driscoll said the pandemic showed that community services for people at the end of life are not adequate.
As of the end of August, the government said it had provided £6.6bn this year to support the recovery from Covid, including £594m towards safe hospital discharge.
Since then, it unveiled its health and social care tax, which will raise £12bn a year.
But the majority of this will go towards clearing the backlog for NHS treatment created by Covid, with £5.4bn going on changes to the social care system over the next three years and more money promised after that.
The focus on the health service though raises questions about the extent to which reforms can improve end of life social care at home.
Driscoll said she wants to see a comprehensive plan for ‘health and social care in the future which meets the needs of people with a terminal illness and especially their carers’. She remained concerned much of the burden of care for people with terminal illnesses will fall on family and friends.
For now, homecare providers will continue to go above and beyond to ensure people end their lives in the place that is most precious to them.
Easterbrook said: ‘Providers make sure, especially at end of life but all the time, that their service users have got everything that they need.
‘The conversations that I’ve had with the delegates on our training, the things they do to go above and beyond what they are paid to do just to make sure that person has everything they need – it never fails to amaze me. ‘They act as advocates for the client, they make sure the GP comes out… they really make sure they provide the best service they can.’
Source: laingbuissonnews.com | OCTOBER 2021 | 36 – 37