Sarah Vallelly explains how the personal and professional dedication of staff can overcome awkwardness and improve end-of-life care.
The Great British sense of reserve might have faded in many areas, but for many, death and dying are still awkward subjects for discussion.
It is not surprising then that an evaluation of a project aimed at improving end-of-life care for people living in extra care housing, suggests staff often carry this sense of awkwardness into their work.
Encouragingly, however, the project also found a great desire among service commissioners, care providers, staff and relatives to ensure that tenants have had the choices they wanted over their end-of-life care and where to die.
The service improvement project run by Housing 21 and the National End-of-Life Care programme, which studied the experiences of tenants in three Housing 21 schemes, revealed that some older people are ready to talk about their final days.
Many worry about ‘ending up' in hospital. Others might not want to talk about it, but it is something they often reflect on. As one older person living in an extra care scheme said: ‘We think about this more than people realise'. The evaluation of the project concluded that often, it is only fear of doing wrong which holds staff back from engaging with them on the subject. Despite the mystique which continues to surround death, the core lesson to emerge from the six month project was simple – listening and learning work. For professionals, this means sensitively finding out where extra care tenants wish to die, respecting those wishes as far as possible, and ensuring that the necessary services and support are available.
End-of-life care is clearly not just an NHS responsibility, and the evaluation will be highlighted in a policy session on end-of-life care at the adult and children's services conference in Liverpool next week.
As one local authority commissioner told us: ‘The extra care housing environment almost automatically puts together the components needed for tenants and their families at the end of life – like not being alone, not being frightened or lonely, and having the flexibility of care.' But the issue ties in so closely with the dominant theme in government policy towards care services – personalisation – that it goes beyond extra care managers and staff.
Policy-makers and commissioners have a crucial role in informing people that extra care housing can provide support for older people in their own homes – right to the very end of their lives.
They need to explain to professionals and the public that extra care housing is part of the continuum of living at home – part of the community rather than a care home. Commissioners are seeking to provide services and housing which allow older people with ever-higher levels of disability and illness to remain in their own homes.
That means they need to ensure their policies and procedures cover palliative and end-of-life care. And making a reality of the choice to die at home in extra care housing will require flexibility and speed on the part of commissioners.
If a person's end of life approaches suddenly, or their condition changes rapidly, those offering support must be able to change the care provided quickly. The evaluation uncovered a recognition of this most sensitive of issues. In such circumstances, extra care teams either need to have a pre-agreed blanket permission to increase support immediately, or have a system in place to secure approval within hours. When extra support is funded at short notice, commissioners should acknowledge that this will often rely on the goodwill and forbearance of staff. In practice, this often means a support worker will translate their dedication, compassion and loyalty into working long, extra hours at very short notice.
As our conclusion says: ‘These personal and professional attributes need to be understood and recognised as an important part of what is funded and commissioned overall.
‘Although the "extra housing" element is relatively easy to understand, there are still gaps in comprehending that the "extra care" element is not simply that staff are physically present at all times. It is also very much concerned with how staff, through their behaviour and attitudes, ensure the delivery of the service's ethos.'
Agreement on the ethos of the service can form part of the commissioning process for both housing support and extra care.
The commissioners we spoke to in our evaluation, voiced a desire for detailed examples of end-of-life care and support so they can work to introduce such flexibility. After all, there are no second chances to get this funding decision right for an individual and his or her family.
Sarah Vallelly is research manager at older people's housing and care provider Housing 21
