The English text of a chapter published only in Portuguese translation, during 2012, as follows:Payne, M. (2012) Serviço Social em Cuidados Paliativos em Fim de Vida. In: de Carvalho, M. I. (ed.) Serviço Social na Saúde. Lisbon: Pactor: 111-38.
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Social work in end-of-life and palliative care - 1 Social Work in End-of-life and Palliative Care Malcolm Payne Introduction: end-of-life, supportive and palliative care Palliative care is a multiprofessional service providing care for people with cancer and other illnesses that have reached an advanced or ‘life-threatening’ stage predicted to lead to death in the near future. Patients move to a ‘dying phase’ of their condition as their body begins to shut down its physical functioning and major organs begin to fail. Palliative care services also support and care for families and other members of the community connected to the patient during the palliative care and dying phases of the patient’s life and the period of bereavement afterwards. Alongside specialised medical and nursing care allowing pain and other serious symptoms to be managed, palliative care incorporates care and treatment for emotional, psychological, social and spiritual issues that affect dying people and their families. The
Transcript
Social work in end-of-life and palliative care - 1
Social Work in End-of-life and Palliative Care
Malcolm Payne
Introduction: end-of-life, supportive and palliative care
Palliative care is a multiprofessional service providing care for people with cancer and other
illnesses that have reached an advanced or ‘life-threatening’ stage predicted to lead to death
in the near future. Patients move to a ‘dying phase’ of their condition as their body begins to
shut down its physical functioning and major organs begin to fail. Palliative care services also
support and care for families and other members of the community connected to the patient
during the palliative care and dying phases of the patient’s life and the period of bereavement
afterwards. Alongside specialised medical and nursing care allowing pain and other serious
symptoms to be managed, palliative care incorporates care and treatment for emotional,
psychological, social and spiritual issues that affect dying people and their families. The
emphasis on the psychological and social means that social work is an important contributor
to palliative care teams.
This service is called ‘palliative’ because it relieves symptoms of the illness, and reduces,
rather than eliminates, psychological, social and spiritual consequences on people and their
families. It originally developed as a service for people in the end stage of cancer, later, being
extended to other patients where an end stage of treatment may be identified and serious
symptoms have to be managed. Among these conditions are the end stages of HIV/AIDS, of
degenerative neurological conditions such as amylotrophic lateral sclerosis (ALS –or motor
Social work in end-of-life and palliative care - 2
neurone disease), multiple sclerosis and Parkinson’s disease and of chronic heart and lung
failure.
Figure 1 about here
Figure 1 shows how palliative care is nested within wider health and social care services,
caring for people with long-term conditions or disability or who are increasingly frail in old
age. Many such people are coming to end of their lives, but a focus on care or treatment for
the long-term condition or frailty dominates care services. End-of-life care enables
practitioners in all health and social care provision to be aware when users of their services
may be moving towards death, so that they can identify this reality and include preparation
for dying and bereavement as part of their care.
End-of-life and palliative care connect with ‘supportive care’, which integrates into medical
and nursing treatment for a major long-term illness such as heart, lung or renal failure,
broader social support. As medical treatment has made it possible for people to survive
serious illness and disability, supportive care has become increasingly important in
healthcare.
The main skill requirements shared by supportive, end-of-life and palliative care are to centre
practice on a detailed attention to factors that prevent the patient from living a good quality of
life; concern for emotional, psychological social and spiritual needs alongside medical and
nursing care and effective rehabilitation to a good level of physical fitness and psychological
and social adjustment. Integration of all these elements of care facilitates a continuing active
life of good quality. Another skill requirement is openness to confronting practical and
personal reactions to approaching death. Such openness is difficult because in many societies
Social work in end-of-life and palliative care - 3
death is sequestered from public view and contained within private life and healthcare
provision.
Transitions in care needs
Figure 1 shows how these elements of services form a pathway for patients and their families
from good health and social well-being to dying, death and bereavement. A crucial element
of this progression is patients’ awareness of changes in their condition. Therefore, an
important professional skill lies in identifying when transitions are taking place, highlighting
consequent change in patients’ needs and helping them develop an appropriate awareness.
Transition from wellbeing to end-of-life care
From a state of wellbeing and good health, when a serious illness, a disability or a long-term
condition may be identified, patients begin to make a first transition into the social role of
being a ‘disabled’, ‘frail’ or ‘sick’ person. As they become aware that the end of their life is
approaching, practitioners may help them plan for a future which is less certain than they
expected.
Case example
An older woman in her late 70s was living at home independently, but becoming increasingly
frail. She fell in a local shop and broke her arm, entered hospital for the first time in her life
and before being discharged was assessed to see if she needed additional support at home.
She became frightened that she might fall again, so limited herself to staying at home,
although her doctor felt that this was overcautious. She became used to being housebound,
and thought her life was nearing its end. In fact, she lived for a further six years. A clearer
Social work in end-of-life and palliative care - 4
discussion about the end of life might have led to her experiencing less social isolation, less
physical limitation and a more satisfying experience in this long end-of-life period.
Transition from supportive to palliative care
Many serious illnesses can be treated; for example, treatment for many cancers is so
successful that patients may become ‘cancer survivors’ for long periods. However, some
people still believe that having cancer is a ‘death sentence’ and fear a recurrence. Other
conditions such as heart, lung or renal failure develop slowly and patients manage them over
many years, although they are progressive; that is, worsening over time. As such conditions
become more serious, patients and family members may become increasingly aware that they
are approaching the ‘end stage’ of the illness and death. However, the long-term nature of the
illness may conceal this transition from them.
Case example
George was a man in his late 50s with renal failure. He had been receiving dialysis two or
three times a week for some years, and his condition gradually deteriorated. This reached the
stage that he was thought unsuitable for a hoped-for kidney transplant. He was used to going
into hospital regularly, so that his two teenage sons and daughters took no notice of his
occasional absences. George was admitted to hospital with an infection, which was treated by
intravenous antibiotics. However, he was told that, if his condition did not improve, further
treatment would be to his disadvantage, and eventually antibiotics were withdrawn. A doctor,
nurse and social worker discussed this with him and his wife and she arranged for his
children to visit him. They asked her why, since they usually did not visit him in hospital, and
Social work in end-of-life and palliative care - 5
she had to explain that he was expected to die soon. An earlier focus on end-of-life care
would have prepared the family for this eventuality.
Transition from end-of-life to palliative care
Medical treatment and health and social care services cure a condition or assist in managing a
long-term condition or disability. Even though this means that patients are aware that they are
ill, they develop a way of life which takes into account their illness, perhaps adapting work
patterns and relationships to fit in with treatment or periods of increased sickness or
disability. When doctors make it clear that no further curative treatment is available and
palliative care is offered, patients and their families may be unaware of the significance of
this changed medical status (Larkin, 2007).
Case example
Marcella was a woman with a husband and two teenage children. An episode of breast cancer
in her thirties was successfully treated, so when breast cancer recurred during her fifty-fifth
year, she and her family expected that treatment would again be successful. However, after
two operations, doctors told her that treatment had failed and invited her to join an
experimental programme using newly developed drug treatments. She and her husband
continued to believe that the new drugs would be effective, that medical science would
prevail. She was shocked therefore when told some months later that this treatment had also
failed and she was offered palliative care for the last few weeks of her life. The family
searched the internet for other treatment options, and she followed a special diet for some
weeks. She became weaker until her family doctor arranged for admission to a hospice for
Social work in end-of-life and palliative care - 6
symptom management, telling her that she would be able to come home once her symptoms
were stabilised. She took this as another message that she would be cured, despite being
warned by hospice doctors on admission that she had only a short time to live. It was the
summer holiday period and the children, who were staying with relatives in the country were
unprepared. She and her husband resisted contacting the children, since she expected to
return home before they returned. In fact, she died in the hospice a few hours later. A more
open shift into the palliative care phase would have assisted all family members to balance
the concern for finding a treatment with recognising that death was likely.
Transition from palliative to bereavement care
When someone dies, their loss disrupts their social networks and family relationships. People
may have to deal with emotional reactions to their loss and also to make practical adjustments
in their lifestyle. All this takes place after the dying period in which contact between family
members may be hectic. The practical effort of arranging the funeral and the emotional
climax of the day of the funeral may bring a later period of reflection. Family support is often
important, but there may be family conflict also.
Case example
Carlos and Emily were living together as a married couple. Carlos had not been divorced
from his previous wife, who because of her strong Catholic faith rejected the idea of divorce.
Two children of this marriage were now adults, and two children of Carlos and Emily’s
partnership were in their teens. Carlos was found to have untreatable late-stage lung cancer,
and was admitted to a hospice, expected to die very shortly. Both sets of children wanted to
visit him. Carlos had written a will that provided inheritances for the teenage children of his
Social work in end-of-life and palliative care - 7
partnership with Emily and left his house to her, on the ground that they remained in need of
financial support after his death; he had made no financial provision for the adult children of
his marriage. In the hospice, Emily and Carlos’s wife got into an aggressive public dispute
about these matters, and the hospice had to make arrangements for a timetable for the
families to visit separately. Moreover, Emily had been made responsible in Carlos’s will for
organising the funeral, but did not want his wife and her children to take part. They were
angry about this, and sought legal advice to contest the will. The hospice made arrangements
for a separate memorial service to be held for the wife and her family. The family and legal
dispute continued after Carlos’s death and led to strained relationships and financial problems
in resolving Carlos’s estate. In this case, the death led to a need to deal with unresolved
family tensions in the period of bereavement.
Hope, reality and openness in social relationships at the end of life
One of the aims of end-of-life care in the early stages of people’s care careers is to facilitate
an appropriate degree of openness when death becomes closer, so that people can prepare for
dealing with dying and bereavement. They can also express preferences for the kind of care
they want to receive, at home for example rather than entering a care home, and for any
treatments they do not want to receive. For example, many people who are clearly dying do
not want heroic efforts to resuscitate them if their heart fails.
Similarly, an important characteristic of palliative care is openness by professionals and
others about the dying process. However, being open about death is affected by cultural
assumptions and social rituals. The sequestration and medicalisation of death is common in
many societies, treating it as a private, individual experience that the dying person goes
through, rather than an event that has major consequences for the social relationships in
Social work in end-of-life and palliative care - 8
which they live. Medicalisation means that most dying people receive treatment and care by
health and social care professionals, many dying in hospitals and care homes, with death
being certified by doctors (Howarth, 2007). As a result, many people are not aware of the
physical process of dying, do not know how to provide care appropriately and do not know
what to expect in the final stages of an illness, when death occurs or during the social rituals
of funerals and bereavement. Important beliefs may clash with the reality
Case example
James, a man of 82 years, was dying of heart failure in a nursing home. His doctor advised
the manager of the home that he was likely to die within 36 to 48 hours. As a result, nurses
removed the intravenous drip through which he was receiving nutrition and hydration, since
when someone is actively dying their body does not need and often cannot absorb nutrition
and hydration and it may lead to discomfort. They also arranged for his priest to visit him.
These are typical actions suggested by the ‘Liverpool Care Pathway’ protocol (Ellershaw and
Wilkinson, 2011) a benchmark for good care for dying people. They had been discussed with
and explained to his wife and sister who were his main informal carers. However, his son
complained that this was withholding the possibility of life from him and tried to give water
by mouth in the absence of nursing staff. James choked and some of the water entered his
lungs.
The case examples so far discussed show that although death is a personal experience
because only an individual can die, many people are affected by each individual death.
Therefore, reaching the end of life, dying and being bereaved are all social experiences
because death usually takes place when others are present and involves them in social
interactions as an individual dies. Also, death alters the network of existing social
Social work in end-of-life and palliative care - 9
relationships and leads to social states and statuses such as being ‘at risk’ of dying or suicide,
or being bereaved. As a result, social institutions exist that are specifically concerned with
death such as hospitals, clinics, social agencies, funeral directors, cemeteries and crematoria.
Social rituals arise, such as caring for and visiting dying people, dealing with dead bodies,
certifying and investigating death, funerals and making memorials of people who have died.
This may have an impact on other social institutions and rituals; for example, schools,
community organizations, workplaces and homes for older people (Reith and Payne, 2009:
30-1).
The social nature of death, dying and bereavement means that services based only on
healthcare and medical intervention are likely to be insufficient to deal with the whole range
of issues that people face. These important social experiences may also generate powerful
emotions including shock and denial, anger, bitterness and depression (Kübler-Ross, 1969).
Such emotions may affect the dying person, family members and others in their social
network.
The case examples also showed the importance in end-of-life, palliative and supportive care
of awareness. The extent that someone, a patient or family member, is aware that death is
close affects their reactions (Glaser and Strauss, 1965). An important aspect of end-of-life
and palliative care is the process by which patients move from being unaware or suspicious
that towards open awareness. Expectations develop from certain death at an unknown time,
the position of most of us, towards a knowledge that death is close, even though the exact
time is unknown (Glaser and Strauss, 1969).
The social nature of death and dying experiences means patients need to complete important
psychological and social tasks during the dying process and this leads to an important role for
Social work in end-of-life and palliative care - 10
social work. Corr et al (2006: 143) identify tasks that people need to carry out during the
dying process as follows:
Physical tasks, satisfying bodily needs and minimizing physical distress
Psychological tasks, achieving security, autonomy and richness
Social tasks, sustaining significant interpersonal attachments during the dying process
Spiritual tasks, identifying, developing or affirming sources of energy and hope (Corr
et al, 2006: 143).
The social work role in end-of-life and palliative care
Settings for end-of-life and palliative social work
Every social worker finds themselves dealing with end-of-life issues, even if they are not
providing care to disabled or frail people. For example, practitioners might have to help all
sorts of clients with bereavement, and work with offenders or mentally ill people might
involve working with people who have committed murder, who have caused death by
dangerous driving or who are thinking of suicide.
Palliative care services are provided in the following settings:
Community health and social care services – since most people die at home, or in a
care home, everyday health and social care provision needs to identify clients who are
approaching the end of life, to provide appropriate care and, if people need it, can
refer them to specialised palliative care. Social work may be part of community
healthcare provision or may be delivered through broader social care services.
General hospitals – patients receiving in-, day or out-patient care for a disease such as
cancer, renal failure or chronic heart and lung disease will reach a point at which
Social work in end-of-life and palliative care - 11
doctors are unable to offer further treatment and the two elements of cure and care are
re-balanced in the whole treatment regime. Many hospitals have a specialist palliative
care team providing consultation to ward staff on this phase of care and sometimes
have specialist palliative care beds or day centres to provide sensitive care to patients
who are dying; often specialist social work is included within this team.
Hospices – hospices may provide a building in which specialist palliative in-patient or
day care can be provided, or may primarily be a community home care service,
supporting community health and social care services where the specialised approach
of palliative care is required for particular patients. Palliative care teams usually
include social work provision. Sometimes, in- and day patient and community
provision is combined in one organisation; elsewhere only some elements of this
provision may be available.
Social work in the multiprofessional team
The range of professional skills engaged in palliative care has expanded since the 1960s,
when these services began to develop. Medical and nursing staff are at the centre of any
provision, since pain and symptom management are crucial elements of a holistic service and
care for increasingly complex and hard-to-manage symptoms is the starting point of the
service. Many other healthcare professionals such as physiotherapists, occupational and arts
therapists are crucial contributors to the rehabilitation and supportive care that facilitates a
good quality of life for dying people. Spiritual care practitioners, including ministers of
religion relevant to the population served, are needed to offer consultation to other
practitioners with whom spiritual issues are raised as well as providing direct support and
help to patients and their families.
Social work in end-of-life and palliative care - 12
From the outset, social work professionals have been integral to palliative care teams. In end-
of-life and supportive care, their role can be even more important since for many people end-
of-life help may not require medical and nursing assistance. Many older people receive
mainly social care services rather than medical care. Palliative care services may need to call
on psychological and psychiatric care, either to offer assessment, consultation and
supervision in particular therapies to other practitioners or to provide psychological and
psychiatric care directly; social workers play a major role in this work of psychological
support.
Communication and helping to complete social tasks
Palliative social work focuses first on facilitating communication among family members
affected by the patient’s illness and quite often on helping children come to an understanding
of the approaching death of a family member who is important to them. Members of the
family may find a focus on interpersonal tasks at the end of life useful. For example,
Saunders (Earnshaw Smith, 1990) emphasised working on the tasks of saying ‘goodbye’ ‘I
love you’ ‘thank you’ for care and support, and ‘sorry’ for real or imagined difficulties in
their relationships.
Case example
A father in his fifties maintained unrealistic hope that he was close to death from cancer, and
told his children his health was improving. His daughter, who was away from home at
university, accepted advice from his social worker and visited for a weekend. She took the
opportunity to tell her father how she had valued him and his help in her life, enabling her to
do well at university. He died shortly afterwards, and she was pleased that she had been able
Social work in end-of-life and palliative care - 13
to make this contact, while his son, who had accepted his father’s statements that his health
was improving, was disappointed at having missed the opportunity to talk with his father.
Other important but difficult areas of communication include:
Breaking ‘bad news’, that is, communicating information that seriously and adversely
affects patients’ views of their future.
Discussing prognosis, communicating risk and discussing recurrence of disease, when
long-term and advanced disease is highly variable in its impact (Kissane et al, 2010:
Section B).
In both of these situations, practitioners help people to deal with maintaining a balance
between hope and the reality of their position.
While both of these tasks start from medical decisions and are therefore initially the province
of the doctor, people take time to absorb the implications of medical information. It is useful
to provide information sheets about common issues that people will face. Also, practitioners
involved with patients and families, including social workers, will often have to reaffirm
information and help people consider the impact of it on their particular family. This is
particularly so where people with learning disabilities are involved: they will often need to
have information repeated, to have it presented in alternative ways and to be prompted to
think about possible implications. The same may also be true for children and older relatives
whose mental capacity mean that providing information needs careful handling.
A useful approach to discussing bad news is to start by asking clients and family members to
tell the story of diagnosis and treatment so far and how they see what has happened. Is there
anything that they particularly fear or are worried about? There may be things about which
Social work in end-of-life and palliative care - 14
practitioners can offer reassurance, as well as situations where fears must be confirmed. If
clients seem unrealistically pessimistic, it may be useful to ask them to compare how their
condition differs from a previous period, moving on to asking whether they have had any
thoughts about plans for the future, or if any immediate action needs to be taken. From this
kind of conversation, practitioners can gauge an appropriate approach to any further
information-giving; this may include arranging for a doctor, nurse, or other health-care
professional to talk through information and treatment or care options, and the likely
progression of an illness.
Other important and difficult issues are often dealt with directly by social workers:
Social work brings a whole system approach to dying. One of its important
contributions it to a healthcare service is its incorporation of family, community and
cultural perspectives into a healthcare service. Achieving shared decisions between
professionals, patients, family caregivers and others in the patient’s social network
and assisting communication with relatives, and in family meetings is also an
important social work role.
Social work has a concern with ameliorating the practical and social impact of
change.
Social work can also help families and other colleagues deal with difficult emotions
(Kissane et al, 2010: Section B; Small 2001).
Advance care planning in end-of-life care
Advance and anticipatory care planning (acp), are processes for finding out and recording a
client’s preferences for how they want to be cared for or treated by health and social care
Social work in end-of-life and palliative care - 15
services in the future. Evidence suggests that this increases patients’ satisfaction with services
and the likelihood that patients’ plans will be achieved (Ratner et al, 2001; Royal College of
Physicians et al, 2009). Acp involves ‘thinking ahead’ about a client’s care arrangements to
‘create opportunities to explore wishes and choices for the future for end of life, crisis, respite
and rehabilitation needs’ (LTCC-JIT, 2009: 9). It helps to achieve participatory engagement
in social work practice because it enables clients’ preferences to emerge at a stage in clients’
care careers when there is a good chance that they can have impact on resource allocation in
later care decisions. Existing practice tends to delay client engagement in decision-making
until the point at which resource allocation decisions must be made, when the range of
choices may have been reduced by preceding events. The involvement of families and a
policy shift to providing acp early in people’s care careers clearly makes this an important
social work role.
Many people would value acp discussions but do not have this opportunity, and have clear
and stable views on how they would like to be treated (Payne, 2010). Four issues of acp
practice are:
Initiation – at what point in their care career and how does a practitioner begin a
conversation about future care planning with a patient?
Scope – who is involved in the planning and what areas of care are covered?
Follow-up – is the initial planning process referred to and used in everyday care and is
the plan reviewed regularly?
Documentation – how is the documentation kept and disseminated and does it transfer
satisfactorily to new care settings with the patient? (Shanley et al, 2009)
Useful preliminary steps before developing a document are:
Social work in end-of-life and palliative care - 16
Make sure that people have all the relevant information and access to alternatives.
Communicate appropriately.
Help people feel at ease.
Support them while they go through the process of making decisions (DCA, 2007: Ch
3).
Good interpersonal skills are therefore crucial in introducing what for some may be a difficult
topic. These can be enhanced by having an organisational system that asks routinely for
people’s preferences as they are assessed for the first time, or at an early stage of care.
Starting at this stage promotes clients’ engagement in planning as a natural process; this is
reinforced by regular reference to their plans and regular review. At a later stage, asking the
‘surprise’ question to medical staff (‘would you be surprised if this person were to die in the
next six to twelve months?’) enables them to integrate a holistic view the stage of an illness
or disability that patients have reached and may help practitioners to decide to instigate acp
processes.
Acp in practice with long-term conditions covers issues such as:
What happens if your carer becomes unwell?
What will you do if your condition flares? How will you access help, advice and
treatment?
What would you like to happen if you became acutely unwell with...?
Preferred place of care – home, community hospital, care home, or acute hospital.
Resuscitation status (LTCC-JIT, 2009).
Social work in end-of-life and palliative care - 17
As the process moves towards documentation, it is important to consider how preferences can
be best recorded. Many people prefer documents that state positively what they want to
achieve, rather than directives about specific treatments in specific circumstances, but
professionals find these more difficult to interpret in making treatment decisions. Therefore,
maintaining a balance between expressing personal preferences in a narrative with specific
advance refusals is important (Royal College of Physicians et al, 2009). A clear format and
guidance in asking concrete questions also helps; even the most articulate people may have
trouble thinking what particularly is good about their life.
Helping with caring
Among the most important aspects of working with families is their role in providing
informal care to a patient who is dying. Equally important, patients need to accept that they
now need care, while still doing as much as possible for themselves.
Recognising informal carers’ needs and concerns is an important part of any initial
assessment and a separate discussion with informal carers may help to focus on their needs.
For example, prolonged caring responsibilities, however willingly accepted, may exclude
them from the job market or cause considerable stress. Finding ways of offering support will
strengthen family relationships, help to integrate formal with informal care and maintain
relationships for the benefit for the older person. Failing to recognise them may lead to
caregivers feeling excluded from engagement with the practitioner and from formal services.
They may then try to carry on without formal help, thus adding to the demands on them.
Useful strategies may include the following:
Social work in end-of-life and palliative care - 18
Helping users and carers strengthen their own support networks by identifying useful
friends, neighbours, organisations and past contacts.
Helping carers check on social security, other official benefits and finances generally
to ensure they are receiving their entitlements
Helping carers think through possible changes or jobs around the house, and get
equipment that will make things easier.
Helping carers plan to take time to go on leisure or caring related courses, or to build
qualifications for the future.
Encouraging carers to take opportunities for education, social events, visits, trips both
on their own and with the client– enjoyment and stimulation will result and freshens
relationships.
Encouraging carers to cultivate activities or talk that caregiver and client both enjoy.
Ensuring that carers are prepared for possible medical or other emergencies (have the
contact numbers to call if the user has a fall or a sudden worsening), keeping them
informed about possible progression of the disability or illness so that they are ready
to cope with changes.
Helping with loss
Since social work in many situations is concerned with loss, death is a clear candidate for
social work practice skills (Small, 2001). Among the losses that people experience are:
Loss of persona, their own in death, or the persona of the deceased person in
bereavement
A reduction in loving support in their lives
Companionship – someone to do things with, ‘my best friend’
Social work in end-of-life and palliative care - 19
Instrumental support – the person who did the shopping, cooking, organized the
garden or finances
The feeling that there is no one to whom the bereaved person matters
Loss of contact with social ties that came as part of the loved one’s social network
Loss of material resources, including income, or pension
A loss of history, a joint knowledge about a shared past, including a personal history
and a family history
Loss of a planned future together (Reith and Payne, 2009).
Experiencing loss and bereavement leads to physical and psychological changes (Payne et al,
1999). Among the physical reactions that people may experience are: fatigue, insomnia or
other changes in sleep patterns, aches and pains, loss of appetite, digestive changes and
increased likelihood of minor infections. The psychological changes may include emotional,
cognitive and behavioural changes. Among the emotional changes may be depression,
including sadness, anxiety, inability to relax, anger, guilt or self-blame, and loneliness.
Cognitive changes may include poor attention and concentration, a preoccupation with the
loss, helplessness and lack of hope in carrying on the tasks of daily living, and a feeling of
detachment or disengagement from things that have previously been of interest. Behaviour
may change so that the person experiencing loss is more irritable, restless and often distressed
or withdrawn in social situations.
The dying person will lose their life and many things that are important to them; bereaved
people irrevocably lose the deceased person. Bruce and Schultz (2001) suggest some
important principles of helping people with these losses:
Social work in end-of-life and palliative care - 20
Help people gain control of their social situation and their life
Help people preserve their personal identity
Honour the significance of the loss that they are experiencing or that is impending.
These principles set the agenda for social work practice in dealing with loss at the end of life.
Loss takes place within a biography. People build their lives within a social context, a place,
relationships and social institutions that they are part of. They develop expectations of how
their life will progress; death interrupts those expectations. An important social work aim is
to help them get back in control. Among ways of helping people to regain control of their
lives is to clear away practical and emotional difficulties that seem to obstruct their own
control of their life.
Case example
Anna, a woman of forty-five with terminal cancer, had three children at home. She wanted to
move to a larger apartment so that her sister could stay to help during the later stages of her
illness, but this was not possible because she could not pay off rent arrears on her present
property. By checking her social security entitlements, her social worker found that she was
not receiving the full income she should have been getting, and the arrears of her benefits
allowed her to pay off the rent. Anna was separated from her husband, and he would become
the caring parent when she died, but he had expressed the intention of returning to their home
country in Africa. Her children did not want to go with him, because they had never lived
there. Anna’s relationship with her husband was not good enough to negotiate with him about
what the children wanted, so the social worker began the process of talking this through,
involving the children and eventually Anna at later stages.
Social work in end-of-life and palliative care - 21
Other ways of helping people regain control of their life include convincing them that
existing capacities or skills they can learn can help them and helping to identify possible
alternatives to their present lifestyle or direction in life.
Bereavement care
Bereavement care is an essential aspect of social work services in palliative care and has
become an increasingly important public service. There are four elements:
A positive public image for bereavement care and effective professional referral
networks so that people who are experiencing difficulties can easily find a service or
be referred to one by professionals involved with them.
Accessible information about bereavement so that people do not mistake common
experiences such as hearing the deceased person talking to them for mental illness.
Support services often involving volunteers who have well-integrated personal
experience of bereavement to listen to and support people troubled by bereavement.
Specialist counselling and mental health services for people with complex
bereavement.
Stroebe et al’s (2007) systematic review of bereavement intervention identifies serious
potential consequences of bereavement:
Increased risk for a bereaved person of mortality, including suicide.
Physical health consequences including increased rates of disability, medication use
and hospitalization compared with similar non-bereaved people. Widowed people
consult with doctors more frequently than other similar people.
However, people suffering intense grief often fail to seek help.
Social work in end-of-life and palliative care - 22
Psychological reactions, which may range from mild and short-lived to extreme and
long-lasting.
Other medical consequences, including impaired memory, nutritional problems, work
and relationship difficulties and difficulties that arise because with the loss of a life
partner or other important person in their social network, opportunities or motivation
for participation is social life may be reduced.
Bereavement care has been influenced by stage or task models of bereavement, which
suggest that people move through a sequence of psychological adjustments or deal with a
number of personal tasks. Worden (2003) for example, refers to the tasks of accepting the
reality of the loss, working through the pain of grief, adjusting to a life without the lost
person and emotionally relocating the deceased person as part of the bereaved person’s life
and moving on to a renewed life. However, sociological criticism of a focus on emotions and
psychological adjustment has led to formulations of bereavement that are more concerned
with social adjustment within cultural expectations. For example, Stroebe and Schut’s (1999)
dual process model proposes that responses to grief have two aspects, both necessary for grief
resolution. The loss-oriented focus involves behaviours concerned with emotional reactions
including missing the person who has died, yearning, reminiscing, and reviewing. The
restoration-oriented focus involves attending to solving practical problems for the future.
These include learning new skills to enable the person to construct a new identity for life
without the deceased person. Stage or task and social orientations to bereavement are not
mutually exclusive; many practitioners seek to emphasise both emotional and social
adjustment.
Social work in end-of-life and palliative care - 23
Helping skills in end-of-life and palliative care
Practitioners’ helping skills start from the ability to establish a relationship and begin to elicit
clients’ stories. Building on these, skills in planning and integrating services that will benefit
clients and in intervening helpfully are also important. To use generic skills in end-of-life and
palliative care, they have to be adapted to the particular needs of the setting. This account is
based on Geldard and Geldard (2005), Payne (2011) and Reith and Payne (2009).
An important role for social workers in all social care systems is assessment for and
organisation of services, and is the starting point for all social work. The assessment role can
be used as a way of exploring clients’ and families’ lives and relationships and can be helpful
in thinking through what they want for the future, thus connecting with acp. Sometimes, this
thinking through enables families to deal with many issues without further intervention.
Social workers in end-of-life and palliative care have three important assessment roles:
Contributing a social element to the multiprofessional assessment by end-of-life and
palliative care teams.
Assessing the need for social work help.
Assessing the need for health, social and other care services to help patients manage
the dying phase of their lives and support their informal carers.
At the outset, practitioners need to greet and observe clients and family members, put them at
ease and explain the social work role. Since many palliative care settings are healthcare
agencies, and in end-of-life care referral may have come from healthcare colleagues,
involvement with a social worker may be unexpected, and practitioners need to be clear that
clients consent to receiving social work help.
Social work in end-of-life and palliative care - 24
After this practical starting point, practitioners can use the narrative approach of inviting
clients and family members to talk about what is happening. Many people may have incorrect
perceptions of diagnoses because they are not aware of modern treatment or care options, but
rely on experience of a previous generation’s illness, and a useful early approach might be
may be to ask about other recent experiences of illness and treatment. Practitioners may
express support and interest through nonverbal behaviour, by concentrating on what clients
and family members are saying and picking up subsequent questions from something they
have said. This is an important beginning in the process of creating a working relationship
with clients and family members. In end-of-life and palliative care particularly, clients and
family members may be experiencing unaccustomed emotions that they find hard to express,
and support in doing so is an important way of building trust. When clients go quiet, they are
often thinking through something that they have not encountered before or managing an
emotional response to something. Giving them time to do this, rather than pushing them on to
something else, shows them that their feelings and reactions are important to the practitioner.
Particularly if clients are elderly, or have learning difficulties, it is important to speak clearly
at a suitable speed and volume. Where clients or family members have dementia,
practitioners should avoid using a questioning approach, since this places people with a short
term memory loss at a disadvantage. A suitable approach is to start with a statement about
who the practitioner is and why the reasons for the contact, allowing clients to pick up on
these statements (Marshall and Tibbs, 2006, pp. 98–99).
An important listening skill is to put into the practitioner’s words the content of clients’
communications, to check and demonstrate their understanding. Practitioners should try to
experience clients’ feelings and reflect back your understanding of feelings that the client
Social work in end-of-life and palliative care - 25
expresses to check understanding. Summarizing at appropriate points overall understanding
of what clients have said puts the account into a context of the implications and direction of
their narrative as a whole.
Every meeting with clients and family members needs a comfortable closure. Practitioners
should make a final summary of the important points of what has taken place, with an
opportunity for clients to make any other points that they think have been important. This
should be followed by a clear explanation of what each person involved has agreed to do
next. Plans for further contact need to be confirmed.
These basic social work skills enable practitioners to engage and begin to work with clients
and their families, using the assessment role. Once the assessment is carried out, social
workers use intervention skills.
Confronting clients respectfully is an important intervention skill in end-of-life and palliative
care because many avoid important issues or have an unbalanced view of hope and reality.
For example, if they say that their symptoms are improving, practitioners can ask them to
compare their present problems with an earlier period, or say specifically what improvements
have occurred. Part of the process of rebalancing reality and hope is helping clients think
about and adjust their behaviour and reactions so that they are appropriate to their situation
Case example
Joseph was dying of cancer and wanted to visit his family in Africa to see his grandchildren,
following up a visit he had made a year ago, but his doctor said that his condition was not
good enough to make the journey. Joseph’s social worker asked him to think about journeys
he had made recently, and in particular how tired he felt after a half day at the day centre. He
Social work in end-of-life and palliative care - 26
suggested Joseph took a three day rest before coming to the centre again, and Joseph finally
admitted to himself that he felt exhausted coming to the centre even after the rest. Instead,
they planned a supported visit to see his favourite football team play.
Other intervention strategies are to reframe clients’ experiences so that clients or the services
they use can see them differently, to challenge or change destructive beliefs, drawing on
techniques from cognitive behavioural therapy. For example, experiencing one or two
increasing symptoms does not mean that clients need to withdraw from social activities.
Practitioners can also help clients to identify situations in which they hide important emotions
or other aspects of their situations. An example is where they hold back from telling
caregivers about changes in their symptoms to avoid worrying them, or that something that
has upset them for fear of losing their support. It is often useful to help clients identify and
make use of their strengths, focusing on things that clients can do, rather than what is going
wrong. For many people receiving end-of-life and palliative care, focusing on the here and
now helps them to see what can be improved. Clients can be helped to maintain hope by
having targets, for example to complete something they are making to say thank you to a
carer. Practitioners can find help to support them in these activities.
Exploring alternative options for is another important strategy. Many people want unrealistic
care options that their family or services cannot support. Sometimes, through trying things
out, they can discover that this will not work. Another strategy is to agree to pursue their
favoured option, but also to agree with them a Plan B in case their preferred option does not
work out.
Case example
Social work in end-of-life and palliative care - 27
Marilyn was a sixty-five year old woman with severe lung disease, who had experienced
frightening bouts of breathlessness at home on her own. Her daughter was concerned about
safety if she returned home. The social worker suggested that they should try a weekend
when the family would be more available as a test. The Plan B agreed with Marilyn was that
if this did not work out she would live in a care home but visit her home for half-days when
the family was available. In fact, the weekend worked quite well, but when this was
extended to weekdays, Marilyn could see how anxious her daughter and son were, and so she
happily agreed to the Plan B option.
Much of social work involves helping people take action through encouragement,
demonstrating confidence in their ability to achieve what they want to achieve. Allied to this,
practitioners can often intervene with family members, other agencies and more widely, for
example with schools and workplaces, where they can smooth the path of clients and family
members in achieving what they want.
Networking involves building, within the agency, connections with other agencies relevant to
clients’ needs immediately with the aim of coordinate involvement with the client or family,
and, taking a longer view, to establish and build up relationships that may be useful in future
contacts. Practitioners can build on higher-level agency networks with networks connecting
with practitioners in their locality. Making links locally may also identify networks that
agencies should key into more generally. Agencies and practitioners should develop plans
and strategies for building their networks over time and sharing them with colleagues.
Teamwork may be promoted by carrying out team projects to investigate and update
information about other agencies.
Social work in end-of-life and palliative care - 28
Integrating services also involves negotiation skills. The well-researched psychological
approach of setting an exaggerated demand and accepting reductions until a compromise is
reached is not appropriate in social work, because it leads to excessive expectations among
clients and to conflictual or cynical relationships with partner agencies. Instead, a strong
focus on evidence drawn from effective assessment of the client and family’s needs and their
plans can lead to outline plans identifying acceptable and unacceptable choices. Practitioners
can then adopt an advocacy approach, trying to achieve the best results for the client. Relying
on this, a partnership approach with other agencies of joint exploration of options is more
helpful.
More broadly, advocacy for the client’s needs and preferences is an appropriate role for
social workers, since their job usually involves understanding and then representing client,
family, and community needs within their agency decision-making processes. Informal
representations and further evidence-gathering can lead to reconsideration. Formal appeals
against agency decisions may be handled by negotiating a separate role as advocate within
agency systems or getting the help of an external advocate.
A particular area of concern is dealing with discrimination against older, sick and disabled
people. The social work profession often carries an important responsibility in this area; for
example, where families are not caring for or responding appropriately to the needs of people
approaching the end of their lives.
Case example
A man in his eighties living in a nursing home had broken hearing aids and spectacles, but
family members would not pay for replacements because he was going to die soon. The
Social work in end-of-life and palliative care - 29
social worker persuaded them that it would be worth improving the quality of his life in the
few weeks remaining to him to be able to hear the people caring for him and others around
him, watch and hear television, see the garden and take part in social activities.
Groupwork
Groupwork is an important aspect of end-of-life and palliative care social work because
humans naturally live much of their lives in groups, for example families and social clubs.
Because people at the end of life sometimes become socially isolated, taking part in group
activities is both their right as citizens and a benefit to psychological health. Care services are
often provided in groups, in care homes or in day care and groupwork can be helpful in
supporting informal caregivers.
For many people groups may be good sources of sharing and support, energy and creativity,
social learning, experience of heightened emotions, they can generate powerful norms and
pressure for development or improvement and offer new multiple relationships (Finlay,
1993). This is so in part because groups in end-of-life care re-create the emotions of earlier
experience of groups in people’s lives. The past experience may be positive and negative, so
people may resist or embrace involvement in groups and may need to be helped to use them
appropriately at this stage in their life.
Different types of group can be distinguished by looking at their main purposes:
Exploring emotional or cognitive issues in people’s lives – these are more
psychotherapeutic in character.
Providing information, education or practical experience.
Activity groups that help people have fulfilling and interesting experiences
Social work in end-of-life and palliative care - 30
Case example
In the hospice where I work activity groups are formed around various creative activities and
around physical exercise for people with disabilities. There are information or education
groups for carers to receive teaching and share experiences about the financial problems of
suffering from an advanced illness, and more therapeutic groups for people who have learned
that they are dying, for their carers and groups for bereaved people or bereaved carers to
explore their personal reactions to their experience.
The main elements of groupwork in end-of-life and palliative care are as follows (Doel,
2006). Aims should be carefully specified in the form of a statement about what the group
members will be like at the end compared with the beginning: ‘better informed about…’
‘more confident in…’ Defining the target membership means thinking about gender, age
range and different types of relationship. Leadership should be considered. Criteria for group
membership should be agreed: should it be open, so that new members might join after the
beginning, or closed? Should there be a set number of sessions or should the group continue?
These questions are related: a continuing group will probably need to manage open
membership, while a set membership probably means setting a time limit. The structure of
the groupwork means making decisions about how long and how frequent sessions should be.
What time of day should they happen? Where should they be? Should there be a programme?
Are there any rules of behaviour to set?
Case example
A hospice social work team considered groups for spouse carers of dying people. The team
found that carers gave priority to practical tasks and being with their spouses. They did not
Social work in end-of-life and palliative care - 31
want to use their scarce time away from caring tasks in unnecessary meetings. The team
therefore carried out a survey to identify a programme that carers thought would be useful
and organised specific information giving and education events, clear time limits to the
number and length of sessions and transport to and from the group. Mutual social support was
programmed in before and after the information sessions. Later, the team provided groups for
carers who had had very long experience of their caring roles; a similar survey found that
these carers were more interested in the emotional consequences of their caring role and in
sharing experiences and ways of coping as a form of mutual support. While they wanted
fixed timings for sessions, they wanted an open-ended group, which met less frequently.
They also preferred discussion topics, which they set at the previous session, rather than
information.
Particularly with closed membership or time-limited groups, endings need to be considered.
Also, in many cases, a group will have members who are clients of several practitioners and
feedback and triggers, for example for colleagues to chase up people who do not attend, are
needed. Some people will require transport to and from the group, toilet and smoking
arrangements and equipment for activities will need planning.
Reminiscence groups provide verbal interaction between people eliciting memories (Gibson,
2011). Group leaders use various triggers to stimulate memory. Group members recall or tell
each other about events or memorable early experiences. Recent events and experiences are
excluded. The aim is generally to increase interactions with peers, to focus conversations
between them and the find commonalities. It can therefore be a technique that enhances a
sense of equality between people. It may help to reduce isolation, increase self-esteem, and
Social work in end-of-life and palliative care - 32
improve communication skills. It may also provide a basis for story-writing, poetry, or music
activities. Life review is a similar process used in working with individuals
Macro practice
Macro social work interventions influence social structures and organisations to create the
best environment and quality of life for people at the end of life and in bereavement. Macro
practice is needed because it is important for dying people to exercise their rights as citizens
to plan and live their own lives, and to participate in service development, planning and
strategic issues that affect the service they are receiving. Also, communities and societies
need to find ways of organising to contribute to the involvement, care, support and personal
development of older people; to understand what dying and bereavement means to
individuals and to society more generally.
Organising social support networks and groups has a long history in social work and is also
well-established in health care. Support groups may be locality-based, or may form around
particular medical conditions or disabilities, or particular social needs such as bereavement.
They may be for clients themselves, their supporters and informal caregivers of other family
members. Self-help groups are formed by the people affected themselves, sometimes with
help or guidance from professionals. Support groups may also be created by professionals
who identify a need within their agency or workload and as part of the agency’s practice. A
basic requirement of mutual or other support groups is a shared personal identity that includes
the issue that the group focuses on. Practitioners can form a link between professional help
for these issues and people working together to deal with issues that face them, or to
campaign for policy or social and cultural change.
Social work in end-of-life and palliative care - 33
Practitioners can encourage existing non-specialist community organisations to support and
include organisations for dying and bereaved people and their carers within their
programmes. This may offer additional activity or support groups. More important, it
connects them with organisations in the community who can learn more about dying and
bereavement. Practitioners might look for faith and church groups, work groups and
commercial organisations such as pubs and restaurants.
A variety of ways of involving people in making decisions about the services they use have
been reported (Janzon and Law, 2003). These include:
User panels. These are useful where users meet in reminiscence groups, or in a day
centre or care home. Attenders and residents can elect people to represent them in
occasional discussions about issues of concern.
Forums. This refers to one-off events about a topic of public concern, for example a
change in service, or regular events which may have an information-giving focus.
Qualitative in-depth interviews carried out by service managers in users’ own homes.
This would give more precise and complex information, but loses the opportunity that
groups and meetings offer for users to stimulate creative responses from each other.
More broadly, work within local communities can improve everyone’s quality of life near the
end of life. Kellehear (2005) argues that current approaches to end-of-life care fail to develop
public health responses to death in society. He argues that social work can contribute to a
redirection of effort to develop a health-promoting practice in palliative care, and end-of-life
care can support communities to respond effectively to death and dying in their midst and
also to make changes in patterns of death.
Social work in end-of-life and palliative care - 34
Among Kellehear’s (2005) policy proposals are:
community education that connects healthcare and compassion in society.
practical compassion in workplaces, schools and facilities for caring for older people.
fostering understanding of effective responses to death and loss.
fostering positive views of the special needs of ageing, dying and bereaved people and
the experience of aging, dying and bereavement.
fostering commitment to effective social responses to cultural difference and social
inequalities in services for older people, and people who are dying or bereaved.
Various studies and commentaries suggest that, as with many health and social care services,
there are inequalities in the provision of end-of-life and palliative care (Oliviere et al, 2011).
Strategies may focus on particular social groups who may have difficulties in gaining access
to palliative care, such as minority ethnic groups, or more broader public health approaches.
Artistic activities are an important part of palliative care work because they provides
fulfilling experiences in people’s lives. The quality of work produced often challenges the
excluding attitude that the creative arts are owned only by the gifted few. Supported and
encouraged, many people can produce work that communicates something of their life
experience. Because dying and bereaved people share significant experiences, artistic
expression of their experience can help others. It can be motivating to members of the public
to see the achievements possible at the end of life, and also acts as a memorial to the dying
person, which is often valued by their family.
Social work in end-of-life and palliative care - 35
Any end-of-life care service has opportunities through open days, annual meetings, reporting
and accountability mechanisms and fundraising initiatives to contribute to the development of
public understanding in this way.
Case example
The St Christopher’s Hospice schools project arranges for classes in local schools, usually
around the age of nine to ten years, to visit the hospice to meet a group of patients in the day
unit to ask questions about their life and the fact that they are dying. Art work involving
patients and children is shared over several weeks, culminating in a display of patients’ and
children’s work, involving parents and children. In this way, children’s resilience to death
and bereavement issues in their lives is strengthened; this rubs off on parents as well. Patients
feel they are making a positive social contribution (Sands, 2008).
Conclusion
Social work plays an important role in end-of-life and palliative care. Patients follow a
pathway involving a series of transitions from well-being, moving towards the end of life.
Supportive care for people with long-term conditions, end-of-life care for everyone who
becomes aware of increasing frailty or illness that may lead them towards death and palliative
care where a major advanced illness has been diagnosed use similar practitioner skills. It is
important to help people achieve an appropriate balance between hope for recovery and an
acceptance of the reality of the limitations that their illness imposes upon them. Practitioners
can help to achieve this by fostering awareness of the reality of people’s situations, through
an appropriate openness in communication about the illness, which allows people moving
towards the end of life to complete social tasks that are important to them.
Social work in end-of-life and palliative care - 36
Important professional responsibilities in end-of-life care include fostering advance care
planning (acp), so that people can express their preferences and plan for care as their illness
progresses, and help and support for informal carers. Supportive, end-of-life and palliative
care all involve helping with important actual or potential losses in people’s lives: this is most
apparent in the significant social work role in providing bereavement care, both as part of
palliative care services and more widely. Social work helping skills are important in engaging
with and assessing clients and their families and in providing interventions that assist people
to deal with the end of life constructively and creatively. Groupwork and macro practice also
make important contributions to social work in end-of-life and palliative care.
Although palliative care is often primarily seen as a healthcare service, end-of-life care is a
crucial element of all health and social care services if they are to help people make early
plans for appropriate care throughout their care careers. Also, because death and bereavement
are significant social events in everyone’s life, the social work focus on relationships with
family and community and in developing the capacity of social institutions to respond to
people’s social needs makes an important contribution to supportive, end-of-life and
palliative care.
Social work in end-of-life and palliative care - 37
Further reading
Reith, M. and Payne, M. (2009) Social Work in End-of-life and Palliative Care. Bristol:
Policy Press.
A broad general text on palliative social work.
Altilio, T. and Otis-Green, S. (eds)(2010) Oxford Textbook of Palliative Social Work. New
York: Oxford University Press.
A comprehensive guide to international palliative social work.
Gibson, F. (2011) Reminiscence and Life Story Work: A Practice Guide. 4th edn. London:
Jessica Kingsley.
A useful and comprehensive practical guide.
Social work in end-of-life and palliative care - 38
Bibliography
Altilio, T. and Otis-Green, S. (eds)(2010) Oxford Textbook of Palliative Social Work. New
York: Oxford University Press.
Bruce, E. J. and Schultz, C. L. (2001) Non-finite Loss and Grief: Psychoeducational
Approach. Baltimore: Brookes.
Corr, C. A., Nabe, C. M., and Corr, D. M. (2006) Death and Dying: Life and Living. (6th edn)
Belmost, CA: Wadsworth
DCA (Department of Constitutional Affairs)(2007) Mental Capacity Act 2005: Code of
Practice. London: TSO.
Doel, M. (2006) Using Groupwork. London: Routledge.
Earnshaw Smith, E. (1990) Editorial: the hospice social worker in the multiprofessional team.
Palliative Medicine. 4(2): i-iii.
Ellershaw, J. and Wilkinson, S. (2011) Care of the Dying: A Pathway to Excellence. 2nd edn.
Oxford: Oxford University Press.
Finlay, L. (1993) Groupwork in Occupational Therapy. London: Chapman and Hall.
Geldard, K. and Geldard, D. (2005) Practical Counselling Skills: An Integrative Approach.
Basingstoke: Palgrave Macmillan.
Gibson, F. (2011) Reminiscence and Life Story Work: A Practice Guide. 4th edn. London:
Jessica Kingsley.
Social work in end-of-life and palliative care - 39
Glaser, B. G. and Strauss, A. L. (1965) Awareness of Dying. New York: Aldine.
Glaser, B. G. and Strauss, A. L. (1968) Time for Dying. Chicago: Aldine.
Howarth, G. (2007) Death and Dying: A Sociological Introduction. Cambridge: Polity.
Janzon K and Law S (2003) Older people influencing social care - aspirations and realities,
unpublished paper, cited in RIPFA (2007) Evidence cluster: effective involvement of older
people in service planning. Dartington: Research in Practice for Adults.
http://www.ripfa.org.uk/images/downloads/evidence_cluster_06.pdf (Accessed: 6 May
2010).
Kellehear, A. (2005) Compassionate Cities: Public Health and End-of-life Care. New York:
Routledge.
Kissane, D. W., Bultz, B. D., Blutow, P. N. and Finlay, I. G. (eds)(2010) Handbook of
Communication in Oncology and Palliative care. Oxford: Oxford University Press.
Kübler-Ross, E. (1969) On Death and Dying. New York: Macmillan.
Larkin, P. J. (2007) Transition towards end-of-life in palliative care: an exploration of its
meaning for advanced cancer patients in Europe. Leuven: Katholieke Universiteit.
LTCC-JIT (2009) Long term conditions collaborative: improving complex care. Edinburgh:
Scottish Government.
Marshall, M. and Tibbs, M.-A. (2006) Social Work and People with Dementia: Partnerships,
