Memorandum by St Christopher's Hospice
Founded by Dame Cicely Saunders in 1967, St
Christopher's was the first modern hospice, now providing the
highest quality care to over 1,800 people each year in its 48-bedded
Hospice, and in people's homes. It provides a comprehensive palliative
care service to an ethnically and socially diverse area in south
St Christopher's provides specialist hospice
and palliative care, offering expert pain and symptom relief,
nursing care and psychological, social and spiritual support and
care to people with life-threatening illnesses as they approach
the end of life and to their families and carers during the illness
and after death. This work connects with non-specialist health
and social care provision in the area it serves. It carries out
research and provides extensive education in palliative care locally,
nationally and internationally, involving its clinicians and practitioners,
based on its daily experience of service provision.
St Christopher's is a member of, and supports
the evidence submitted by, Help the Hospices. This evidence is
supplementary, and builds on our current direct experience over
nearly 40 years of providing palliative care, which has developed
to offer a comprehensive service.
Everyone dies; everyone will be bereaved. The
universality of this experience is why people want the security
of good care around the end of life and during bereavement; it
is why there is such community support through fundraising and
volunteers for the hospice movement. The focus of our evidence
is on the importance of interweaving complex aspects of care at
a high standard within palliative care to enhance the resilience
of communities and wider non-specialist care services.
When families and communities and health and
social care services require a response to extremely difficult
care needs, they need the certainty that it can be made available.
Good specialist palliative care offers a security that enables
non-specialist, community and informal care to function. It is
in this way integral to the fabric of all caring services.
Our experience suggests that a comprehensive
service must include a wide range of elements, implemented flexibly.
By way of example, St Christopher's offers:
in-patient medical and nursing care
led by consultants in palliative medicine and experienced and
specially qualified nurses, also providing an important training
site for medical and nursing professionals;
home care led by clinical nurse specialists
in teams focused on each of our five local-authority and primary
care trust (PCT) areas, to strengthen liaison with community services;
home nursing and other care to patients
in their own homes, supplementing district nurse and other community
services where palliative care patients have needs requiring additional
our home care services will go out
to patients 24-hours, seven days a week, rather than the more
limited NICE guideline of 24-hour advice;
extensive day care and creative living
support, discussed more fully below because we think this is an
area that demands greater commitment and clarity;
in-patient and home care multiprofessional
teams that include social workers and chaplains;
social work is necessary to assist
patients in resolving family and community relationships and emotional
responses to their impending death and bereavement, and to facilitate
access to a wide range of public and private services. People
and services are sympathetic, but it is not easy to ring up an
official or company to say: "please help me with this, I'm
for the same reason, we are increasing
our complement of welfare advisers because of the demand to help
with debt problems, homelessness, severance from work, private
and public pensions and allowances. A recent audit of this service
has shown that there is a particular burden of housing and council
tax benefit problems, since these benefits are notoriously badly
administered, but in particular because they change every time
people's circumstances change, sometimes weekly, and families
with a dying member and in bereavement often experience successive
rapid changes in circumstances;
chaplains to provide spiritual care
to help people with thinking about their lives, the contribution
they have made to the world, the meaning and value of their life,
their value to their community and family, and many other spiritual
issues; for people with a faith commitment, religious services
are necessary; we regularly baptise and marry and perform funeral
and other relevant religious services;
psychiatric treatment, since a large
minority of dying people and their families have symptoms of anxiety
physiotherapy is an important treatment
for many symptoms of dying patients and we offer a general lymphoedema
service responding to fluid retention problems; and
complementary therapies such as acupuncture
(where there is research evidence for effectiveness in some areas
of pain relief and reduction of stiffness), aromatherapy, hypnotherapy,
massage and reflexology are appreciated by patients as experiences
and also because they offer the chance for someone with a damaged
body and disrupted body image to receive gentle physical care.
All these are incorporated into a complex texture
of care that responds to the particular needs of the communities
Patients' choice of where to die is not the
end of choice in palliative care. Most people choose to die in
their own home, and palliative care services set out to achieve
that wherever possible, and often manage to do so. In making this
choice, patients often have an image of dying peacefully surrounded
by their family. Many will achieve this.
However people become aware of the particular
effects of an illness on them and their families, their choices
will change; services have to be flexible to accept and respond
to this. Our experience is that choices are made throughout the
patient's journey, not only by the patient but also by their carers,
families and others around them. Dying in your own home may not
be the best choice where the patient is being physically or sexually
abused by a carer or financially abused by a relative. Dying in
your own home is not so attractive when it is an isolating flat
with little furniture and poor facilities. Dying with your family
around you is not the picture for many elderly people whose family
are estranged or scattered across the world. Dying in your own
home of a serious illness may mean that even a loving family cannot
manage complex and demanding care needs.
The complexity and changing nature of these
needs and the choices that people must make is the reason why
palliative care must be established and managed to interweave
a wide range of professional and community responses together
in a complex texture of public and voluntary services and personal
Recommendation: government policy needs to
recognise the personal importance of care around the end-of-life
and in bereavement to many people, and the importance of managing
services in such a way as to interweave services not to intervene
or impose but to respond to care and support needs in ways that
increase people's resilience and the resilience of communities
around them to the experience of dying and bereavement.
Serious illness restricts social opportunities
and stimulation. There is no point in preserving life, reducing
the effects of symptoms and treating physical and psychological
problems if people cannot make use of the life left to them. They
might wish to complete important life tasksto see the new
grandchild on the other side of Europe, to fly an aeroplane, to
renew a relationship with an estranged child have all been recent
objectives for some of our patients. At least, they do not want
to stare at four walls all day and every day, and be a boring
nuisance to family and friends because all they have now is their
illness. Worthwhile palliative care must meet these needs, and
this goes well beyond health care objectives. St Christopher's
day centre offers a stimulating social environment and the chance
for a day away from staring at four walls. Among the options available,
which vary from time to time are:
Art, drama, sculpture, pottery, music,
horticultural and other creative therapieswe use the artistic
work as a means to help people develop stimulating social and
groups relationships and engage in discussion about issues that
are important to them.
Visits with skilled nursing and social
support to events and social opportunities, such as concerts,
parks, pubs, restaurants.
To share ideas and experiences with
others in the same situation, develop new social relationships.
Through Rosetta Life (see www.rosettalife.org.uk)
to give people the chance to express themselves though digital
and video photography and the creative use of internet presentations.
Day care forms a crucial element in a comprehensive
palliative care service. It is not everyone's choice, but it offers:
Respite for carers at home.
Stimulation for patients, who are
usually isolated from social contact by the restrictions imposed
by their illness.
Education and self-development for
patients until their last moments of life.
Stimulating social relations for
patients with other people who have something new to contribute
from their experiences.
We have a current research project assessing
the impact of day care and some examples of the benefits that
patients felt they gained are given in the Appendix.
Two emphases in day care focus on:
nursing and medical treatment on
a day basis; such day provision can otherwise often be little
more than glorified waiting rooms; and
comprehensive social care designed
to give patients stimulating new experiences, to improve education
and self-development and to improve social relations.
Research shows that patients who attend value
enormously the experience they have in day care. However, recent
research has aggregated the wide range of types of day care, so
it has been hard to disentangle what is beneficial and what is
not. There is a need to identify the value of different kinds
and mixes of provision. In particular, simply using day care as
a diversion while waiting for medical treatment may reduce worthwhile
Recommendation: identify and support a small
number of beacon day centres to achieve a comprehensive range
of provision and evaluate outcomes of different elements of the
provision with a well-managed research study, to achieve valid
guidance on appropriate services.
The availability of specialist palliative care
across the country is unequal, and the mode of provision varies.
This may be appropriate, since palliative care in our conception
should respond to the needs of the community and individuals it
serves. However, comprehensive provision that meets the World
Health Organisation model of providing for both health and psycho-social
and spiritual care needs in an integrated way is central to an
Psychological and social needs may be raised
in particular ways for different ethnic and social groups, and
it is important that social divisions do not hinder appropriate
care for the populations serviced, or exclude particular groups.
Information about the palliative care needs of different population
groups is not easily available, and to allow an appropriate response,
health and social care services should work to identify population
needs to guide the development of local services.
Recommendation: The Government should ensure
that PCTs and other commissioners work to identify palliative
care needs of the particular population and social mix of their
areas, and should fund research to identify the particular needs
of specific population groups.
Much of the concern about communication has
been focused on delivering "bad news", because of evidence
that this has been handled badly in many situations. The position
has been much improved even if more work needs to be done. However,
we wish to emphasise the importance of communicating a sense of
hope, optimism, personal worth and value of patients, families
and their carers, of concern for their resilience and strength
in facing a difficult time in their lives and of preparedness
to be alongside them in facing their difficulties. It is also
important to intervene to help patients communicate with their
carers and families, even where their physical symptoms and the
psychological state and social relationships of those involved
are fragile. This does not always mean speaking about matters
of difficulty, it also involves making judgements about what people
want to communicate and how, and the use of metaphors and mechanisms
for communication: art, music, religion, drama and other opportunities
for indirect communication and self-expression are relevant. Research
carried out at St Christopher's recently published by Rachel Stanworth
(Recognizing Spiritual Needs in People who are Dying, Oxford
University Press, 2003) illustrates in relation to spiritual metaphor
the complexity of communication that may take place and that professionals
in this field need to be able to deal with.
Recommendation: Guidelines on and regulation
of specialist palliative care services need to research and recognise
complex communication needs.
Palliative care includes specialist medical
and nursing care, both for in-patients and for patients at home,
but essentially it offers extremely high-quality multi-professional
care by well-qualified staff. The evaluations given by our patients
of the care demonstrate the high quality of care that would be
possible to provide for people moving towards the end of life,
mentally and physically frail and with medical conditions affecting
their social life. Such care is not routinely offered to people
whose deaths are the result of non-cancer conditions. This is
a fundamental inequity in health and social care provision.
Recommendation: research to establish the
applicability of the lessons of palliative care skills and service
organisations for long-term health and social care, particularly
of elderly people and of people with long-term illnesses and disabilities.
Hospices are regulated by the National Care
Standards Commission, being treated as a special category of independent
hospital, and will shortly be regulated by the Commission for
Healthcare Audit and Inspection. The experience of regulation
by the NCSC has been marred by a formulaic approach. For example,
a glance at the standards will show that they are primarily about
the production and availability of policies and procedures, rather
than the assessment of actual care. Another example is the requirement
to report deaths every 24 hours, an important indicator of something
going wrong in hospitals, perhaps, but surely inappropriate as
an indicator for hospices, where care for people dying is an important
aspect of their existence. Some requirements are unreasonable
for a relatively small charity. For example, a requirement to
translate all the contents (including extensive documentation)
in an NCSC-specified patient care handbook into numerous languages
applicable to our population, ignores the extensive printed information
we already provide to patients in plain English and the availability
of audiotapes for people with sensory impairments and interpreters
provided at our expense for people whose first language is other
Recommendation: careful establishment of
the CHAI process so that it focuses on patient care outcomes rather
than procedural compliance with inflexible guidelines.
A crucial aspect of quality is extensive and
increasing user involvement. St Christopher's has played a leading
role in introducing user involvements as an important aspect of
its services and developing user involvement nationally and internationally.
Two brief published papers on our experience and approach are
attached as appendices.
There are two aspects to involvement:
over individual matters concerning
a user's own situation, strengthening interpersonal interaction
between client and worker, within the context of assessment and
intervention. Thus, we see working with a user as partnership,
and see the responsibility as to create an agreement about mutual
goals that reflect our professional knowledge and experience and
the personal and social aims of patients and those around them.
We avoid doing things to and for patients, carers and their families.
over service development, where the
collective voice of service users can make a difference to the
planning and operation of services. Here we have a consistent
process involving questionnaires to patients, those close to them
and visitors to the Hospice, regularly analysed and reported,
supported by user forums which make their own comments, receive
reports of questionnaire analysis and make suggestions and receive
a report back about action taken. We get very high satisfaction
ratings, so that every individual detailed comment is needed and
is crucial to providing a individualised response to a very diverse
user group. Individual comments give us ideas for improvements,
as well as contributing to a collective view. Results are taken
very seriously at clinical governance meetings of managers and
a trustee held every two months. In addition the Trustees' services
committee reads and comments on the detailed reports every time
they are produced.
Among the outcomes of user involvement that
we have experienced are.
Enhanced self esteem and control
of their lives for patients.
A more satisfying experience of using
health and social care services for patients.
. More accessible, sensitive and accountable
health and social care service.
Significant service innovations.
A greater sense of ownership by patients,
carers and their families of the service. This applies to ownership
of both the whole service and of what happened in individual cases.
Recommendation: user participation practices
and outcomes should be a crucial part of quality audit and regulation.
The Cancer Plan has delivered some important
improvements in services, but in many areas the money for palliative
care has been spent catching up with adequate provision. Similarly,
while the NICE guidelines set a reasonable basic standard, they
focus on and only fully represent needs in the health care aspect
of palliative care; they do not, of course, set out wider standards.
In particular, the detailed funding recommendations, which will
guide allocations of funding to achieve equitable standards, need
to include the full range of provision, rather than just in-patient
care, which may be the most expensive care per patient, but is
the least important part of the whole service to a patient throughout
their illness and to their family and carers during the illness
and after it. More effectively researched guidance on home care,
day care and social, psychological and spiritual care elements
will be essential to develop a rounded service provision nationally.
Placing palliative care development wholly within
the framework of the Cancer Plan is limiting, since increasingly
palliative care looks to deal with the consequences of a wider
range of illnesses. The focus on cancer may hold back diversification
of palliative care, since it can mean that other services do not
think that palliative care services can be used with other illnesses,
general practitioners and community health and social care professionals
do not refer when palliative care could make a difference and
people in the community do not benefit from palliative care skills
It is still the case that community and health
and social care provision is patchy for people approaching the
end of life with a diagnosis other than cancer. Such situations
may continue for many years, and quality of care is variable.
Poor care for people moving towards the end of life will affect
many more people as the post-second world war jump in population
reaches old age, and is likely to lead to demands for greater
policy attention. The skills and experience in palliative care
could be transferred to less specialised care and community understanding
through programmes of community and non-specialised professional
education. For example, St Christopher's Candle Project has worked
with the Metropolitan Police to train police family liaison officers
to deal more effectively with people whose family members are
believed dead or who are suddenly and often violently bereaved.
Candle also works to help schools affected by bereavement. Much
more needs to be done to strengthen the capacity of individuals
and communities through faith groups and churches and many community
groups that contribute to the resilience of communities and individuals
to respond to death and bereavement.
Recommendation: planning for all areas of
health and social care, not just cancer and diagnosed degenerative
diseases, should include provision for care of service users approaching
the end of life and bereavement care, drawing on the experience
of palliative care.
Recommendation: community and continuing
professional education for many health, social care, education
and community professions should include components to strengthen
the resilience of communities and individuals in dealing with
death and bereavement.
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