Using neighbourhood networks to enable people to die at home

A pioneering initiative in south west England sees family and friends sharing end of life care with community nurses

A pioneering initiative in south west England sees family and friends sharing end of life care with community nurses

Picture: Science Photo Library

When Gail Wilson found her neighbour alone in his caravan trying to stem bleeding from a tumour with kitchen towels and a rubber band, she knew she had to do something.

The man lived alone, had terminal cancer and was clearly unable to cope. But he refused to get involved with healthcare services because he was terrified he’d be forced to move to a care home.

‘He loved living in his van, in the fields, with the deer and badgers and all the other wildlife, and with his cat,’ says Ms Wilson, deputy director of clinical services and head of education and development at St Luke’s Hospice in Plymouth.

Managing pain

‘I said that if he let me refer him he could get help with dressings and with managing pain. He consented, but only if I promised he could stay in his caravan. I told him we would make it work.’

‘What we have to think differently about is death itself’

Gail Wilson, deputy director of clinical services and head of education and development at St Luke’s Hospice in Plymouth

This encounter was to have ramifications not just for her neighbour but also for other terminally ill people in the south west of England, as well as their families and carers. Inspired in part by her own journey, Ms Wilson has been instrumental in pioneering a compassionate communities initiative that uses local networks of informal carers to enable people to die in their own homes, if that is where they want to be.

Gail Wilson: ‘We need to legitimise
compassionate networks.’

The initiative involves formal services working with the informal networks to deliver care to suitable patients. After a successful pilot in Cornwall it will be rolled out across the Devon area.

Help from neighbours 

The scheme draws on the work of Australian nurse academic Debbie Horsfall, who pioneered the ‘ecology of care’ concept. This supports people in rural communities to help neighbours who want to die at home.

Ms Wilson had heard Professor Horsfall speak at a conference in 2015, and was particularly struck by the idea of taking a public health approach to death, as she has a background in public health nursing. It made her think about end of life care in its widest sense, particularly with demand for formal services expected to rise.

‘We have to think differently,’ she says. ‘You can’t put a hospice on every street corner. And what we have to think differently about is death itself.’

Working together

Many people want to die at home, yet only around 20% are able to achieve that aim, says Ms Wilson. Rather than focus on the 80%, Professor Horsfall had looked at the circumstances of those who did manage to die at home, to see what factors made it possible. ‘She noticed that they had informal networks of family, friends and neighbours to do things like shopping, sometimes personal care, bringing or administering medications, and making beds.

‘The nurse is actually in the outer circle rather than being the centre of the patient’s universe’

Gail Wilson

‘When formal (services) and informal networks worked well together, that’s what enabled people to die at home.’

When designing the initiative, Ms Wilson drew on her experience of building up an informal team of local carers to help her neighbour stay in his own home.

Rota of helpers

‘I got together with another neighbour, Beryl (see box), and we drew up a rota of people who were prepared to help John (not his real name),’ she explains.

‘Neighbours would go in three or four times a day, taking meals for him and giving him his medication. If he’d fallen they’d grab a passing dog walker or jogger to help. The community really rallied round.’

The situation wasn’t straightforward. Although the local district nurses helped to care for John, some were reluctant to work with the informal carers because they worried it was unsafe. Matters almost came to a head when local social services visited John in his caravan with the intention of moving him to a care home if he was deemed not to have capacity to make decisions about his own care. Fortunately they found he did, although they still had concerns about his living conditions.

The caring neighbour

For Beryl Badger, helping her neighbour to die at home was a big commitment – but one she doesn’t regret.

She and Gail Wilson had both visited John on the same day, and agreed  they would help him to stay at home to die.

Ms Badger’s role was arduous. It involved taking him breakfast every day and taking turns with Ms Wilson to provide evening meals. She was also the one who found John when he died.

It helped cement friendships

‘The nurses weren’t very keen for us to help – they said just to phone them if anything needed to be done, but it’s a large rural area and they could sometimes be hours away,' she says. 'He couldn’t have coped at home without us.’

Having the support of the others in the network helped keep her going, she says, and it also helped cement friendships in the local community.

‘It was difficult, but I would do it again – I don’t think I could live with myself knowing that someone badly needed help.’

The arrangement also required a considerable commitment on the part of the informal carers. ‘Initially we thought it would be around six weeks, but he lived for five months,’ explains Ms Wilson. ‘But the network didn’t break down – and he eventually died in his caravan, as he wanted.’

Nurses could delegate tasks

Reflecting on this experience, Ms Wilson realised it would have worked better if there had been a formal partnership between statutory services and the local carers from the community. ‘My thoughts were “Can I make things better?” and “Can we do this in other rural areas?”,’ she says.

She gained funding from the Burdett Trust for Nursing to test the concept, choosing a small pilot site in Cornwall and working with the local crisis team. Cornwall was chosen because it already had third-party delegation in place, meaning that nurses could delegate tasks such as giving medication to others.

Empowering patients

There were several aims, but at its heart the project sought to ensure that people near the end of life were empowered so their care – from informal and formal carers – was truly person-centred.

‘We surveyed staff and there was a bit of resistance,’ Ms Wilson admits. ‘The professionals worried about what would happen if something went wrong – they needed to know they had organisational support behind them.’

There was also the question of choosing the right patients to take part. All potential participants were risk-assessed and screened so that, for example, if there were fears that someone wanted to end their life prematurely, perhaps through inappropriate use of diamorphine, they would be deemed unsuitable.

Challenging assumptions

In the event, 29 patients were referred to the team. Of these, about a quarter were deemed too unstable to take part, and just over half died within three days of referral. Just eight patients were regarded as eligible for the study, and six of them agreed to take part.

Training for the nursing staff involved was vital, says Ms Wilson. It included challenging assumptions as well as education in how to equip lay people with skills such as giving medication. ‘Some nurses still referred to “my” patient, rather than seeing that they were there to provide a service for the patient and their families. The nurse is actually in the outer circle rather than being the centre of the patient’s universe.’

Sharon Smerdon, leader of the crisis team that took part in the pilot, concedes that she had some concerns about how the process would work. ‘Initially I was horrified,’ she admits. ‘I thought of all the training we have to become nurses – how could we trust other people to do some of the things that we do? But then I listened to Gail and heard about her experience, and realised that we needed to find a way of doing this.’

Help with shopping and personal care

The project involved setting up compassionate networks, with a coordinator to bring together the professionals and the volunteer carers. Crucially, the team created a tool to help document the care the patient received, which any of the volunteers or professionals could write in.

‘Initially I was horrified, but then I realised that we needed to find a way of doing this’

Sharon Smerdon, crisis team leader

    Of the six patients who took part, two had networks of friends and neighbours and the other four had networks of family and friends. All died at home, none were re-admitted to hospital and all had a positive experience.

    Help from relatives included giving medication, personal care and even subcutaneous injections. In these six cases, family members did not administer diamorphine, although there were processes in place to allow this to happen. Friends and neighbours helped with things like shopping, meals and keeping people company.

    People want to be involved

    ‘What we found is that lay people really want to be involved – they just need to be asked,’ says Ms Wilson. She said members of the network reported feeling a sense of achievement that they had helped someone to die at home. Nursing staff also found the process positive, despite their initial concerns.

    Ms Smerdon says starting the process of what they are calling ‘supportive mapping’– building a network of helpers – at an earlier point would mean more people would be eligible to receive care under this kind of initiative.

    The plan is to roll out this patient-centred leadership approach across the Devon area, with the need to create compassionate networks firmly on the agenda across the whole system, says Ms Wilson.

    ‘When nurses support informal networks to care for a person at the end of life, they are enabling people to die at home, cared for by those who love and care about them,’ she says. ‘We need to legitimise compassionate networks as a vital part of care and support plans.’


    For more information contact Gail Wilson: gwilson@stlukes-hospice.org.uk

    Jennifer Trueland is a health journalist

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