Advocacy without targets: does palliative care practice embody real social work?

“When mainstream social work has got diverted into care management and become bureaucratic, palliative care social work has managed to preserve and go on developing that holistic approach that combines the emotional, psychosocial and spiritual. People believe in what they are doing. They are not following a formula or set of procedures.”

This comment from Anne Cullen, chair of the Association of Palliative Care Social Workers, captures why palliative care is seen widely as a field in which practitioners can retain their values and practice ‘real social work’.

In her day job, Cullen is manager of psychosocial and spiritual care at Princess Alice Hospice in Esher, Surrey. Cullen’s job title – with its focus on providing psychological and emotional support – and the structure of the team she manages further illustrate the distinctiveness of palliative care social work.

The 11 social workers (8.2 full-time equivalent) work alongside two benefits advisers, a chaplain, a bereavement service co-ordinator and over 40 volunteers, mostly involved in providing bereavement support to families or pastoral and spiritual support to patients.

Fluid roles

Roles are fluid across the disciplines while the range of the social workers’ roles in the hospice’s services is vast. Support for patients is provided alongside support for the wider family, including children, particularly after death; individual and family work takes place alongside group work, such as running bereavement groups for families; social work is delivered in the community and on the hospice’s 28-bed inpatient unit; counselling and emotional support is delivered alongside practical help in matters such as claiming benefits, and legal interventions such as making Deprivation of Liberty Safeguarding applications.

This range makes the hospice an attractive setting for students on placement and the Princess Alice takes one or two each year. “It’s all the different elements of social work,” says Cullen. “Having a placement in palliative care is really good preparation for whatever social work you do afterwards.”

But the range of work is complemented by a flexible approach that also makes the hospice – and palliative care more generally – an attractive destination for people who have previously worked in statutory social work, as is the case for much of the team.

‘Patient and family-led care’

“We get such flexibility about how we work with people, such as how frequently we see them,” says Liz Anderson. “We can be entirely patient and family-led.”

This can lead practitioners to undertake tasks that are not exactly part of the social work manual. “I’ve been doing some work with somebody creating memory boxes for her children after she’s died,” says Anderson. “It’s not just advising someone, it’s literally sitting down on the floor with the scissors and sellotape and doing it together.”

Sarah Dowd, a newly-qualified social worker who did a placement at the hospice, recounts a case of a young patient who had bowel cancer but was also a Chelsea fan.

“I have a tenuous link with a Chelsea player and arranged for John Terry to send this guy a signed shirt,” she says. “So we want to see him and give him that. Then we had a really good chat with his mum about strategies she could use to tell his younger siblings that he had cancer and was going to die.”

The approach seems to be strongly appreciated by patients and their families. Palliative care social workers reported that the support of their social worker had increased their ability to cope and quality of life and reduced anxiety, found research carried out for the Jospeh Rowntree Foundation that reported in 2006. Among the reasons for this was the empathy, compassion and kindness of the social worker, the development of a relationship based on reciprocity and even friendship, and a flexible and informal approach.

Advocacy, not targets

Performance is managed and monitored, says Cullen, through feedback from families and analysis of whether people are being cared for or die in their preferred place.

But she adds: “The measures don’t drive us.”  Instead, she says, practitioners can be driven by advocacy for their patients, whether in helping them secure access to continuing healthcare funding or the benefits they are entitled to, or giving them a voice in relation to their families or other services. 

Working outside the statutory sector helps, she admits.

“We are fortunate that we work for a voluntary sector organisation and we don’t have to get involved in rationing. “This gives us a role in advocacy and getting people the service to which they are entitled.”

However, she sees the value of taking on refugees from the statutory sector, precisely because of the different pressures that existing in adults’ services.

“Staff who come here from adult social services come with those skills to assess situations very quickly and assembly resources, fitting together care packages that are apposite to people’s needs.”

Multi-disciplinary working

Princess Alice provides a mixture of community, day and inpatient services: in 2012-13, 2,724 patients were cared for in their own homes, 2,513 visited the day hospice and 668 received inpatient care. It accepts referrals from from people with a terminal diagnosis who need specialist palliative care, and as in other hospices, multi-disciplinary practice lies at the heart of its work, encompassing medicine, nursing, occupational therapy and physiotherapy, as well as social work.

Among the community-based social workers, the typical full-time caseload is 40, and the team provided 3,437 support sessions with people last year.

In contrast to local authorities, where social workers are often care managers, the case management role at the hospice is undertaken by clinical nurse specialists (CNSs).

Though social workers are taking an increasing role in initial assessments, this is generally the role of the CNSs, who then refer patients on to the other professionals.

“A lot of what nurses do in palliative care is ‘soft’ social work, getting alongside families and working out where they are on their journey,” says Andrew Knight, directors of inpatient services, quality and evaluation, and a nurse by background. “But there’s an understanding that social workers have particular skills in palliative care which are unique in social work, spending time with people who are often angry and aggrieved, who are coming to terms with their own circumstances.”

This can be particularly acute among people admitted to the inpatient unit, whether for respite, rehabilitation, the management of particularly difficult symptoms or terminal care. Knight says that in most cases, “there’s a psychosocial crisis”, for example families not being able to cope.

This can be particularly challenging given the negative perceptions of social work among many families – driven by previous experience or media coverage of child protection failings.

“On the ward we try to see all the patients so that people don’t feel singled out as to why a social worker is seeing them,” says lone of the ward social workers. “We are having to break down a lot of barriers.”

Emotional support for colleagues

The nature of palliative care puts a significant premium on emotional support for staff and resilience.

For the social workers themselves, peer support is crucial in helping them manage their emotions and stay resilient, says Cullen.

“In a big team like this you’ve got other people doing the same job and understanding what you are contending with,” she says.

But the social workers at Princess Alice Hospice also take on that role in respect of colleagues from other disciplines.

For example, they often facilitate Schwartz Centre Rounds, open-access monthly sessions in which staff and volunteers from all levels of the hospice get together to talk about and reflect on the emotions of hospice care.

“We have had some very difficult experiences  whether there’s been anger, distress and people feel very conflicted about not being able to help people manage their pain and have a good death, or because the relatives have been very demanding and the patients’ needs have been eclipsed,” says Cullen.

“[The rounds] enable people to have feelings that have been buried for some time come to the surface without anyone feeling the need to resolve the problem, because that’s not what it’s about, it’s about enabling people to share and reflect.”