Breaking the last taboo

Palliative care social work is a mainstay of the hospice
movement, but it is facing many challenges as the demand for it
grows and funding resources shrink. Carol Lewis reports.

Monday morning, 9.30am, and the sunlight streams via a courtyard
of potted plants into the pink-walled reception of St John’s
Hospice, north London. Suzy Croft one of three social workers at
the hospice greets passing patients, by name, with a cheery
hello.

Croft, a specialist palliative care social worker, has a
typically busy day ahead of her. On her schedule is a home visit to
the family of a refugee patient who is in desperate need of
rehousing, followed by telephone calls on behalf of two patients
experiencing housing benefit problems.

At lunchtime an in-patient meeting is scheduled – at these all
members of the hospice team discuss and plan the 20 patients’
physical, social and emotional care.

After this Croft has a family visit to a particularly
heart-rending case of a mother of four who is dying of cancer. She
is helping the family to apply for home equipment grants and to
deal with housing benefit claims while liaising with the local
Macmillan cancer care nurse. This is in addition to copious amounts
of emotional support for the woman and her children. Today she
hopes to persuade the patient and her husband to explain to the
children, aged between 17 and three, what is wrong with their
mum.

“Yes, it can be sad and difficult,” concedes Croft, “but there
are practical ordinary things going on as well; you would be amazed
how people cope. People remain themselves in death and there are
plenty of things you can do to help.”

And, she says, it is this ability to “get things done” which
makes palliative care social work so fulfilling. She says fellow
palliative care social workers often remark how difficult it would
be to go back to local authority work after being employed by
hospices. “It is not as restricted as in local authority care,
where social workers have no resources, time or influence. Here you
can practise social work as it was meant to be. Directly spending
time with people and giving practical help.” In short making a
difference.

Almost all of the 200 hospices in the UK have social workers
within their multi-disciplinary teams. The Association of Hospice
and Specialist Palliative Care Social Workers has 250 members and
is thriving.

It is little known, outside of the hospice world, that Cicely
Saunders, the founder of the modern hospice movement, was a social
worker. In the mid-1940s, while working at St Thomas’ Hospital,
London, Saunders met a Polish cancer patient, David Tasma, who
inspired and encouraged her to establish a place where people were
“allowed to die as themselves, in peace and with dignity”.

She went on to read medicine, completing one of the first
patient-oriented studies into pain control and finally established
St Christopher’s Hospice in Sydenham, south London in 1967.
Specialist palliative care social work developed and grew at St
Christopher’s with social workers teaching colleagues the art of
family-focused care. This continues today with St Christopher’s
offering educational courses, advice and visits for social workers.
And the hospice now employs six part-time specialist social workers
to support the families of 40 in-patients and 480 hospice-at-home
patients.

The expectations of the service have changed greatly since St
Christopher’s opened, and today specialist palliative care social
work faces some of its biggest challenges. David Oliviere, social
worker at Barnet Hospital in north London and Macmillan principal
lecturer in palliative care at Middlesex University, explains: “In
the last few years there has been an emphasis on expanding
palliative care out to all conditions and not just offering a
de-luxe service to a few.”

Traditionally, palliative care has concentrated on people with
cancer, motor neurone disease and HIV. However, the government says
it wants to see palliative care made available for all terminal
illnesses, which could include chronic heart disease, cystic
fibrosis and dementia. This has been welcomed by Oliviere and
colleagues who want to extend palliative care services into the
mainstream.

Nevertheless it is far from clear how funding will follow this
expansion with many hospices desperate for cash and heavily reliant
on fundraising. According to the charity Help the Hospices half of
the country’s hospices are in financial difficulty with some
receiving as little as 6 per cent of their funding from the
NHS.

Oliviere says other challenges include expansion of palliative
care services to reflect the ethnic mix of local communities.
Olivere suspects that some people, including referring GPs, still
harbour the belief that ethnic groups “look after their own” which
as any social worker knows is simply not the case.

In addition palliative care needs to develop more as a
mainstream “support” service. Ideally, Oliviere would like to see
specialist palliative care social workers available to offer advice
and support from investigation and diagnosis, through treatment,
illness to death. This could be provided by a network of liaising
teams of hospital and hospice workers.

But, are there enough social workers willing to work in
palliative care to realise these challenges? “Even among
experienced social workers there is a fear of death and dying.
Death involves powerful emotions, it is the last taboo,” says
Oliviere.

“It certainly isn’t depressing though. It might be very sad
seeing a teenager die or the head of a large one-parent family, but
you really do see people grow in the face of death. The last thing
I want to do is give the impression people die with a smile on
their face, but people face death in incredible ways. People move
on and grow in the face of death.”

But palliative care is no longer simply about terminal care and
hospices are no longer places in which one goes to lay down and
die. The advent of diseases such as HIV and treatment advancements
for cancer mean that patients are living longer. Much of Croft and
Oliviere’s work is centred on rolling respite care with patients
admitted for short stays into the hospice for medical treatment or
to give carers a well-earned break. Meanwhile, hospice-at-home
initiatives are expanding care out of in-patient beds into the
community.

Olivere, who teaches one of just two courses in the country on
specialist palliative care social work, says that it is a subject
which is increasing in popularity. And Croft who is client services
manager of the Association of Hospice and Specialist Palliative
Care Social Workers says the association is “thriving”. It is an
association viewed by its members as unique in its ability to get
things done – an example of which was securing a special fast-track
for terminally ill people to claim disability allowance.

And it is this dynamic professional base which is driving the
profession forward to meet the new challenges set. However,
expansion into the mainstream and attracting the funding necessary
to achieve it, comes hand-in-hand with government targets and
standards.

Peter Beresford, professor of social policy and director of the
centre for citizen participation at Brunel University, says: “The
government is having to respond to real concerns about the state of
the NHS, and this is often measured in terms of hospitals and
operations. And when you see political pressure in these terms, it
does not bode well for services outside the standard NHS definition
dealing with non-curative illnesses.

“Specialist palliative care social work is not a Cinderella
service. It is increasingly seen as a growth area among mainstream
managers and clinicians. What would be great would be if the
principles and strengths of this speciality could be extended as
the standard for the rest of the NHS, with mainstream funding. We
need to level up and not down.”

With an eye on the service standards needed to make this
attractive to politicians, Beresford, Oliviere and Croft are
conducting the “Involved” project. Thought to be the first of its
kind, it will aim to interview 45 palliative care service users and
45 bereaved relatives about what they want and don’t want from
specialist palliative care social workers. It is hoped that the
Joseph Rowntree-funded study findings can be incorporated into
national standards, social worker training material and patient
information. Two representatives from the Department of Health are
advising the study and politicians are being kept fully
informed.

Beresford says: “We are anxious that indicators are based not
just on what managers and bureaucrats want, but what service users
want, and they are not usually the same thing.”

Beresford stresses that this all needs to be done quickly – two
of the people who were taking part in the project have died. “We
need to convey that urgency to politicians. They need to work at a
pace that is meaningful to these people.”

Which takes us back to St John’s Hospice. Hanging in the
spacious day room, with its comfortable yellow sofas, is a
photograph of Princess Diana’s visit to the hospice in 1997. She
died before any of the terminally ill patients pictured with her, a
poignant reminder of the fragility of life for all of us.