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CLINICAL PRACTICE DEVELOPMENT

Know your colleagues: role of


social work in end-of-life care
Malcolm Payne

Effective care at the end of life requires input from all members of the multidisciplinary team. Nurses
working in all settings need to be aware of the different roles and expertise of other professionals so
that they can refer patients accordingly. This article will describe to nurses the role of social workers.
Social work differs from medicine and nursing in that it is not a health care profession. Instead its
practice aims to integrate social justice and social problem-solving with personal help in order to
empower people and enhance their wellbeing. Social work should not be equated with counselling,
taking children into care or merely sorting out social security or discharge problems. Within this
article a detailed case study will illustrate how these different aspects of social work are integrated
within end-of-life care. Declaration of interests: none

experience may mean that the family have some training in psychology and
struggles in the future. Social work often use counselling skills. Counsellors
KEY WORDS focuses on the patient as part of a wider and clinical psychologists mainly focus
Empowerment social network, complementing the on changing the thinking patterns or ‘o
emphasis in health care on the patient. feelings and attitudes of the people
End-of-life care with whom they work. Social work
Family relationships What social work is not aims to help improve people’s
Social change Social work is not a health care relationships with the people, social
Social work profession. Most social workers are networks and organisations around
Problem-solving employed in child protection, family them. So, while they may try to change
work and child development in attitudes and thinking, their role is to
education departments of local councils. work on both sides of the interaction
They also work in education welfare, between individuals and society, and
youth justice and care services. Part not just help people function or feel

S
ocial work has played a role in of their work involves helping people better. Integral to the social work role
health care since the end of the deal with difficulties when using various is trying to make services and policies
19th century. It has always been services in society, including health care. work more effectively for the people
central to the concept of palliative care They also have an important legal role they serve.
because palliative care deals with the in mental health services, since they are
whole person and requires the care responsible for compulsory admissions Social work is not about taking
team to work closely with the patient to mental hospitals. children into care and mentally ill people
and the family and community that into mental hospitals. An important
surround them. Family and community Only a minority of social workers role of social work is safeguarding
may both support and hinder the operate in health care. The majority vulnerable people, such as children,
patient in achieving personal goals at of social workers are located in local frail or disabled people or people with
the end of life, and a bad end-of-life government education and adult social learning disabilities or mental health
services departments and voluntary problems. As a small part of this, they
organisations. However, certain health have responsibility for assessing possible
Malcolm Payne is Director, Psycho-social care specialisms, including end-of-life abuse of, or danger for, people living at
and Spiritual Care, St Christopher’s Hospice, care, are attractive to social workers risk in the community and then doing
Sydenham, London, Emeritus Professor, because the work is interesting and something about it. Much of the social
Manchester Metropolitan University, and complex (Monroe, 2004). work role is helping to sort out the
Honorary Professor, Kingston University/ problems leading to that risk, rather
St George’s Medical School, Kingston-upon- Social work is not counselling or than forcing people to do what they do
Thames. Email: m.payne@stchristophers.org.uk psychology, although social workers not want to do.

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Integral to the social work role is to promote successful interpersonal


helping people maintain independence and family relationships and a better Table 1
while also promoting social justice and society with better services.
freedom. That is why social workers The definition of social work
are often concerned about fairness So what is social work?
to people who have had a raw deal The definition of social work agreed ‘The social work profession promotes
in life: promoting equal opportunities by the international organisations for social change, problem-solving
and reducing inequality is part of the social workers and social work schools in human relationships, and the
definition of what they do. is given in Table1. There are four empowerment and liberation of
elements to this definition: people to enhance wellbeing. Utilising
Some professionals mainly 8 Social work’s aims, e.g. theories of human behaviour and
encounter social workers sorting out empowerment, problem-solving and social systems, social work intervenes
social security benefits or debts, or social change at the points where people interact
organising care services so that people 8 Social work’s knowledge base with their environments. Principles
can be discharged from hospitals and 8 The focus of its work of human rights and social justice are
hospices. However, that is only an 8 Its values. fundamental to social work.’
incidental part of social work. They do Source: International Federation
this in order to reduce unfairness and, The three aims of social work can of Social Workers, International
by ‘negotiating’ between people and be seen as a triangle of territory in Association of Schools of Social Work
society, to ensure that people get what which social workers operate (Payne, (2000); International Association of
is their right. Social workers also aim to 2006) (Figure 1). The example in the Schools and Social Work (2001)
improve how families function, in order case scenario (see box) helps to

Case scenario illustrate the social work role within


the context of end-of-life care.

Discussion of the case scenario


Social workers in any service often
Mrs Onukwe was in her 40s and had been diagnosed with cervical cancer
have to deal with complicated family
and lung metastases. She was in the terminal stages of her condition but
problems. The approach is usually to
was managing to stay at home. She had three children: a young woman in
assess the situation in order to be
her twenties, and a son and daughter who were in their late and early teens
clear about the many factors involved,
respectively. She was separated from her husband, who was thinking of
and then to divide them up into small,
returning to the Caribbean. She also cared for her elderly widowed mother,
manageable tasks. Dealing effectively
who lived alone nearby. The elder daughter had learning disabilities and lived
with a clear practical problem first
with a group of other people with learning disabilities, supported by carers
often gives families the confidence
from social services.
to go further with more complex
Mrs Onukwe had serious rent arrears with the local council as well as problems. In Mrs Onukwe’s case, the
other debts. She was worried about her teenage son who had to help her social worker dealt with five family
with toileting and personal care; she thought that this was inappropriate for issues which are discussed below.
a young man of his age, although he wanted to help her. She was contacted
by the education social worker because her daughter was missing school as First: The social worker targeted the
a result of her anxieties about her mother’s impending death; she wanted rent arrears. She called in a welfare
to spend more time with her mother. benefits adviser, who found that
The nurses and doctors involved with Mrs Onukwe’s care were the rent rebate that Mrs Onukwe
concerned with her health and enabling her to maintain a good quality of life was entitled to had been wrongly
for as long as possible. This was crucial as Mrs Onukwe needed the time and calculated; this wiped out thousands of
capacity to deal with the many affairs that had to be sorted out. The social pounds of debt. Doing this eased family
worker’s role, however, was to work alongside Mrs Onukwe to remove as anxieties. Social workers are problem-
many of her problems as possible. For a social worker involved in end-of-life solvers, but they also empower families.
care, this would be partly for Mrs Onukwe’s benefit, so that she died feeling As mentioned above, if the family
at ease, but mainly for the benefit of family members and their security and has confidence in the social worker,
future development. If Mrs Onukwe died leaving such a complicated and they may believe that even apparently
disorganised family situation, it would be more difficult to maintain the family impossible problems can be sorted out.
in the future and its fragmentation might lead to social and bereavement
difficulties at a later stage. Second: The social worker then talked
to the carers from social services about
the elder daughter. Like many people

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����������� of care services could be organised. were aiming to help Mrs Onukwe
This included regular checks on her maintain her quality of life and health
condition, assistance in managing her for as long as possible, the aim of the
household, referral to a day centre and social worker was to assist her to make
regular delivery of hot meals. This was use of that life and health, to achieve
mainly a problem-solving role. what she wanted with her remaining
time. The object of the social work
Fourth: The next issue was to help was to benefit Mrs Onukwe’s family
Mrs Onukwe talk with her younger and the other people around her. In
daughter about staying away from this way, social work contributes to the
school. Mrs Onukwe was encouraged stability of society, by assisting people
��������������� �������������
to organise herself so that she could to contribute what they can to their
find some special time for her daughter. relationships with others.
Figure 1. The three aims of social work. However, while facilitating this process,
Source: Payne (2006). the social worker uncovered a concern This is particularly relevant within
about whether after Mrs Onukwe’s families. When someone has very
death the separated father, who would little time left, they often need help in
who are inexperienced with regard to take on parental responsibilities, would deciding their priorities, working out
the process of dying, they had thought want to return with the daughter to what to do and how to get through
that the best thing was not to tell the the Caribbean. The daughter wanted to a lot of different tasks. Many people
daughter about her mother’s impending stay in England, perhaps with her elder can do this on their own or with the
death to avoid upsetting her. They had brother, who was willing to help. Mrs help of their families. However, for
also decided to reduce the daughter’s Onukwe’s relationship with her former people like Mrs Onukwe, who find
contact with her mother. This is a husband was not good enough for themselves in difficult situations, social
common reaction. The aim is to protect her to negotiate with him and so the work provides extra personal support,
children from distress. However, it is social worker started that negotiation experience and knowledge of how
an inappropriate reaction, as it does by approaching the husband, arranging things work.
not help children to prepare for the a date and neutral place for a meeting
death. The social worker helped the and helping Mrs Onukwe prepare what Where does social work come from?
carers to realise the problems that this she wanted to say. The meeting was All societies have systems of social
would cause in the future. The social difficult. However, after two subsequent welfare for dealing with problems that
worker helped Mrs Onukwe to plan the meetings and a discussion with his arise in the relationships between
discussion with her daughter, rehearse daughter (whom the social worker also people and groups, such as their
what to say and think how to reply helped to prepare what she wanted to families, and people at their workplace
to difficult questions. This gave Mrs say), he agreed to rethink his plans. This and in their communities. Social work
Onukwe confidence to manage again was a problem-solving role, with is a modern form of welfare, and
a difficult process. a strong element of empowerment for is based on professional practice. It
the people involved. The social worker grew up in the late 1800s at the time
As a result, Mrs Onukwe and enabled all parties to talk and plan of urbanisation and industrialisation
her daughter worked together to child care for the future. in European countries and the USA,
prepare a memory box that would when local help received from
help the daughter to remember her Fifth: Another role was to talk with churches declined. This was part of a
mother. A memory box is a collection the son about his caring responsibilities, general social trend for the state to
of personal items that will remind a helping him to feel valued for the take responsibility for dealing with
bereaved person of important shared contribution he was making, before social problems (Offer, 2006).
experiences with the person they have identifying people outside the family
lost. This task was about fulfilment who would give him support. This The main focus of British and
and empowerment for the daughter was also a problem-solving role. It American social work is to help people
and Mrs Onukwe; it also related to empowered the son to learn the sort out their family problems so that
social change, as it helped to educate importance of planning personal more supportive social structures
the carers from social services and support for difficult life-tasks and develop. An alternative form of social
their department about appropriate events. Eventually, more home care had work, ‘social pedagogy’, as practised
responses in the future. to be provided, but the son continued in Europe (Lorenz, 1994), emphasises
to make a valuable contribution that he education through groupwork as a form
Third: The social worker also talked felt was a personal achievement. of self-help, rather than the Anglo–
with social service staff about the American problem-solving approach,
future care of the patient’s elderly As can be seen from this case which is a bit like medicine: ‘diagnose’
mother, so that a suitable package scenario, although health care services the ‘problem’, then ‘cure’ it. In the UK,

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some of the work of community and was first introduced for mentally of using discretion and professional
family support centres for families who ill people and people with learning judgment in order to put together
need help in bringing up their children is disabilities in the 1960s (Payne, 2005). new ways of providing care that fitted
similar to social pedagogy. people’s needs (Payne, 1995). However,
In recent years, this ‘social care’ the British system was introduced
The method of social work service, e.g. residential care homes as part of restraining the expanding
developed through two important and the provision of personal care costs of community care (Lewis and
influences: charity organisation and in people’s own homes, has been Glennerster, 1996). To achieve this
reform. It therefore always contains distinguished from nursing and health end, care management has sometimes
elements of social help and social care by government policy (Twigg, become a tick-box exercise, i.e. fitting
change, which are sometimes in tension. 2003). Social work aims to help people people into administrative categories
The ‘charity movement’ of the late 1800s and families achieve personal and rather than looking for imaginative
tried to organise rich people’s donations social fulfilment, and strives for social responses to their needs. Some social
to the poor, and to encourage the change. In contrast, the emphasis services departments have used
poor to provide for themselves rather of social care is on organising social administrative workers rather than
than relying on charity. One aspect of services efficiently and making them social workers, with the result that
charity organisation was to give alms more responsive to people’s needs and professional discretion and flexibility
only after an assessment of character. wishes which, in the UK, is now called in creating care arrangements have
This encouraged friendly visiting to help ‘care management’. declined. Hence, many people see
families in their own homes and efficient care management as being inflexible,
recording of information about people bureaucratic and cost-cutting (Gorman
applying for assistance; that is one origin Heath care professions and and Postle, 2003). However, at its best,
of social work. In addition, a welfare role social work share many it should be the exact opposite.
in hospitals grew up, where ‘almoners’ values, i.e. to help people
were employed to check people’s
in difficulties and to treat How is social work different from
eligibility for the free health health care professions?
care provided from charity hospitals. people with respect and Health care professions and social
This led eventually to medical social dignity and in confidence. work share many values, i.e. to help
work (Payne, 2005). people in difficulties and to treat
people with respect and dignity and
Social work was also part of social What is ‘care management’? in confidence. As stated earlier, the
movements in the early 1900s designed Many staff in adult social services are primary aim of social work is to
to change society and improve the called ‘care managers’; some, but not all, make society work more effectively.
lives of poor people. This led to the are social workers. Care management Social workers also try to improve
development of group and community was introduced into community care society’s services and way of dealing
work methods (getting groups of by the British government in the with people who present with social
local people together to identify their 1990s, after experiments with an problems. Trying to improve services,
problems and organise means to solve American form of social work called e.g. by using decisions in individual
them), and self-help (setting up new ‘case management’ in the 1980s cases to effect change in policy or
services or campaigning to develop or (Payne, 1995). Care management practice that benefits society in general,
change social policy) (Payne, 2005). focuses on caring services rather than is an important part of social work
therapeutic social work. It uses the values. As a result, social workers are
A third element of social work traditional assessment role of social often regarded as trouble-makers.
is the provision of social care. From work to try to identify the care needs Rather than accepting decisions,
medieval times until the 1900s, of adults. It then puts together, from it is part of the role to apply the
many social problems were dealt the family/social network of the person principles established in one case to
with by setting up institutions, e.g. concerned and formal social care other cases, arguing for people against
almshouses, asylums, hospitals, prisons agencies, a ‘package’ of services that is unfair procedures or consequences of
and workhouses, to take difficulties ‘tailored’ to meet the person’s needs. inflexible service provision.
out of ordinary society and provide Part of the skill is tailoring without
specialised help. When the British seams: the package from different The focus on improving social
welfare state emerged in the 1940s, agencies and people should fit relationships is one of the most
some of these institutions became together, so that the service user important differences between social
the backbone of the NHS and of cannot see the joins. work and health care. The primary
residential care provision. Since then, emphasis of health care is to improve
much of this care has come to be This development is controversial. the health of individuals and the health
provided outside institutions, through The American approach and the of society in general. Social work
the policy of ‘community care’, which original policy were a creative way supports that aim, and health-related

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social workers try to help people Conclusion 0/04082120.PDF (last accessed 27 February
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is ill or dying. This helps health care show nurses how the social objectives Community Care: A Distorted Vision? Venture
Press, Birmingham
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International Association of Schools
but has the eventual aim of improving different from, the objectives of health
and School Work (2001) About IASSW:
how society works and developing the care. The social science basis of social International Definition of Social Work.
strength of social structures, such as workers’ training and knowledge base IASSW. www.iassw-aiets.org/ (last accessed
families and communities, to cope gives their work a different emphasis, 27 February 2007)
with adversity. but is an important contributor to the International Federation of Social Workers,
mix of skills and knowledge available International Association of Schools of
In end-of-life care, as in Mrs in end-of-life care. Social Work (2000) Ethics in Social Work,
Statement of Principles. IFSW http://www.
Onukwe’s case, social workers help ifsw.org/en/p38000324.html (last accessed
the families of people who are dying Health care professionals often 27 February 2007)
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each other, arrange finances and plan in which care is provided and which the New Community Care. Open University
future child-care arrangements. They can hinder or support good care at Press, Buckingham
hope to strengthen the family’s ability the end of life. Social workers, on the Lorenz W (1994) Social Work in a Changing
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its treatment. However, people in often help a patient and family think
specialist posts will usually have through how they will manage the
extra training in the biomedical change in life when a seriously ill patient, Key Points
information they need. approaching the end of life, returns
home and needs more care. The social 8 Social work is not a health care
Another practice difference is that worker will also help people to think profession, although social workers
the emphasis on social change in the through changes, such as the need to and health professionals share
values of social work, and a training move to a nursing home because their many values.
based on social policy studies, leads spouse can no longer manage to care 8 The aim of social workers is to
social workers to be more interested in for them and the subsequent feelings of promote social change, encourage
the organisation and policy of services loss and grief that may be engendered. problem-solving within families and
than many health care workers, who Social work is characterised by a mix of to empower people within society
tend to focus on individual health managing the practicalities and feelings, to enhance wellbeing.
needs. Also, social workers often come while being alongside people as they go 8 At the end of life it is important
across aspects of services that are not through the changes that the process of to help people use what time they
working well. As a result, the social dying brings. EOLC have left to achieve what they
work view of advocacy is not only can, both for themselves and their
sticking up for patients’ needs in the families. By working with families
system, which health care workers do References through this difficult time, social
Department of Health (2001) Reform of
as well, but also arguing for changes workers can help bring stability
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