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Evidence for transforming community services
Services for end of life care
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1
Top transformations 2
Transforming services 3
Transforming staff 9
Transforming systems 11
Summary: what works? 12
Transforming community services is important
for everyone, no matter how young or old. As
our population continues to age, it becomes
increasingly important to provide high quality,
accessible and appropriate end of life care.
We reviewed about 900 studies on innovative
end of life care in the community to distil the
key transformations required for services, staff
and systems.
Contents
Information in this document is drawn from a rapid evidence review. We searched 10 reference databases for systematic reviews,
randomised trials and observational studies available as of January 2009. Studies were screened for relevance and validity and key
themes were identified. This document provides a summary of only those interventions which are not widespread in the NHS and
which have the potential to transform community services. It is not an exhaustive overview of all literature identified.
2
Top transformations
Ten important issues identified by the research evidence that may
improve end of life care in the community are:
expanding palliative care to cover more than cancer
using formal care pathways
using automated systems to provide practical reminders
focusing on supporting carers and family members
using question lists and checklists can help families
training peers and family members to provide support
educating nursing homes to improve care
addressing gaps in spiritual care
providing GP home visits where needed
considering complementary therapies for some
3
3
England has a strong focus on end of life care. The national Gold
Standards Framework has a primary care component and the
national End of Life Care Strategy, released in 2008, emphasises
caring for people in the place of their choosing, including the
community.
Many examples of good practice are already being implemented
widely in England, and we do not repeat them here. Instead the
focus is on initiatives with the potential to transform community
services and which are not already widely known. Similar to
previous systematic reviews,1 we identified a paucity of literature
about innovative community initiatives at the end of life. The brevity
of this review reflects that.
We have used the terms end of life and palliative care
interchangeably throughout the text to mirror the international
literature, though we acknowledge that the terms have specific
meanings in some contexts.
Who: targeting care
End of life care is about more than cancer
Until recently, the focus of palliative care services has been on
cancer and malignant disease. However, there is an increasing
recognition that everyone nearing the end of their life can benefit
from supportive care.
One study in the UK established a model of care for people with
heart failure near the end of life. Specialist palliative care services
collaborated with community based heart failure nurses. The heart
failure nurses provided regular visits, support groups for patients
and carers in hospice day therapy units, and referred patients for
other palliative care as needed. The evaluators believe that joint
work between community services and specialist hospital care has
potential for sustainable, high quality care for people with advanced
heart failure.2
Transforming services
4
The whole family needs care
Family members are often at the centre of providing care for people
at the end of life, sustaining care when professionals are not
available and supporting the service user both physically and
financially.3 Research suggests that community services could
significantly improve the quality of care available by supporting
caregivers.4
Caregivers generally face five burdens: time and logistics, physical
tasks, financial costs, physical health risks and emotional burdens
and mental health risks.5 To support family members, community
services could focus on ensuring excellent communication with the
family, encouraging appropriate advance care planning and
decision making, supporting home care, showing empathy for family
emotions and relationships, and signposting families to counselling
for grief and bereavement.6,7
Another option is providing practical toolkits and checklists to
support carers and service users. A randomised trial in Australia
found that providing a list of question prompts helped terminally ill
people with cancer and their caregivers to ask questions of doctors
and care teams. The list promoted discussion about prognosis and
end of life issues without creating anxiety or impairing satisfaction.8
Training in coping skills for family members has also been offered in
hospices to good effect. One trial with more than 300 people
compared a control group who received standard hospice care, a
group who received standard hospice care plus three supportive
visits to the family, and a group who received standard care plus
three visits to teach coping skills. Compared with hospice care
alone or hospice plus emotional support, the coping skills training
was effective in improving caregiver quality of life and reducing
burden related to patients' symptoms and caregiving tasks.9 Similar
training, offered either in small groups or one to one, could be rolled
out by NHS community services teams. This would require staff
training, regular review and debriefing and additional capacity.
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What: service delivery
Transformational care blends treatment and palliation
Community teams have identified that it is difficult to know when to
stop offering curative care and move towards end of life care. But
research suggests that the dichotomy of palliative and curative care
doesn’t have to be. Transformational care is a blended model of
care in the early stages of investigation.
Research suggests that presenting dying patients and their families
with a transformational model of care instead of the traditional
palliative or curative treatments may enhance the patients’ quality of
life and benefit psychosocial aspects during the last few weeks of
life. This model involves a combination of curative and palliative
services provided by a care coordination team of nurses and social
workers. It has been found to be particularly worthwhile in caring for
people with AIDs.10
An important part of new models of end of life care is offering
spiritual support. A systematic review found that spiritual care was
under-researched and underprovided. The review concluded that
spirituality at the end of life is fundamentally important because it
allows people to consider their lives, seek peace and forgiveness
and have better quality of life in their final weeks. No guidance was
provided about how community services could redress current
gaps, but this was highlighted as an area in need of further
exploration.11
6
Other models of care use complementary therapies to address pain
at the end of life.12 A systematic review of 21 studies found that
acupuncture, transcutaneous electrical nerve stimulation,
supportive group therapy, self hypnosis, and massage therapy may
provide general pain relief and that relaxation / imagery can
improve oral mucositis pain. People with severe chronic obstructive
pulmonary disease may benefit from the use of acupuncture,
acupressure, and muscle relaxation with breathing retraining to
relieve dyspnea.13
Regardless of the exact type of care provided in these models, a
common theme emerges. High quality end of life care is based
close to home, requires a mix of generalist and specialist care,
needs to involve and support families fully and should seek to
combine elements of palliation with other care to meet the patient’s
underlying needs. This has significant implications for the NHS
because community services still tend to focus on a medical model
of care, aiming to cure people rather than support them to die well.
There is a need for enhanced training in how to support family
members as well as service users and a need to understand the
range of other therapies available to people. Most of all, there is a
need to build in capacity to provide this mixture of care because
holistic care takes time and skill.
Integrated care pathways improve outcomes
Integrated care pathways are widely accepted to improve
standardisation, continuity and collaboration among
multidisciplinary teams. In end of life care the majority of studies of
integrated care pathways are descriptive rather than outcomes
focused. However there is an evidence base demonstrating
improvements in symptom assessment, documentation of care
goals, compliance with guidelines and pain control.14 In England,
the Liverpool Care Pathway, the Gold Standards Framework and
other approaches are all well known in primary care and take up
rates are increasing. Other countries have similar initiatives.
As this review focuses on initiatives that are not widely known about
or implemented, we have not documented the extensive literature
about care pathways here because this is already a national priority
in England and included in the National Strategy for End of Life
Care.
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Educate nursing homes to improve care
More people are now choosing to spend their final days in a
residential care setting. But nursing homes often send people to
hospital regularly at the end of life, perhaps because they feel that
they cannot cope or because they feel this is what the patient or
their family wants. There is a need to upskill nursing homes on
appropriate end of life care to avoid unnecessary admissions near
the end of life. One study found that community based palliative
care nurse specialists could offer advice on pain and symptom
management to nursing homes and other communal residential
facilities by telephone.15 This is a relatively cost effective use of
nurses’ time and can lead to substantial improvements in
adherence to guidelines and quality of care.
Hospice teams have also offered training to nursing homes. In one
programme, hospices visited nursing homes to provide six
educational sessions to all staff. The education programme resulted
in measureable improvements in care and increased referral to
hospices.16
Where: location of care
Numerous studies suggest that many people want to receive care
at home or close to home in their final weeks and days. Some
suggest people prefer the psychosocial climate in hospices
compared to hospitals and that many want to die at home.
However, reviews suggest that high quality, comprehensive
information about people’s preferences and satisfaction with care in
different community locations is not readily available and more
research is necessary.17
One randomised trial in the US compared usual care versus an in-
home palliative care intervention for people with less than one year
to live. The group receiving home based care also benefitted from
an interdisciplinary team providing pain and symptom relief, patient
and family education, and an array of medical and social support
services. People receiving care at home were more satisfied, more
likely to die at home, and less likely to visit A&E or be admitted to
hospital. This resulted in significantly lower costs of care. The
authors concluded that this provides evidence for reforming end of
life care.18
8
Such intensive home care may be difficult to roll out in the NHS
without building further skills and capacity. Home care may take
more time than usual care and require more travel by nurses and
specialists. Another US study found that home visits from GPs near
the end of life improved outcomes compared to usual care19 and
this may be more feasible in the NHS. In this study GPs did not
have to visit extensively to notice gains in patient and family
satisfaction, knowledge and quality of life.
Supporting people to die in a place of their choosing is a national
priority and community services need to have the capacity and
capability to support this. We identified numerous studies
highlighting the value of patient choice but little high quality
research demonstrating how community services could put this into
practice. The evidence that did exist tended to be small scale or of
low methodological rigour.
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Multidisciplinary teams make a difference
Numerous descriptive studies outline the potential benefits of
community and hospital teams working together, but few studies
have examined the best people to involve in teams.
In New Zealand an integrated palliative care team has proven
successful. A team of palliative care coordinators (augmented by
specialist hospice clinicians), GPs, practice nurses and community
district nurses worked together to improve the quality of palliative
care. The team is funded to work together in the primary care
environment. A mandatory induction course for each staff member
is required along with other support courses.20 This is important
because the team are not expected to be able to come together and
work in an integrated way immediately; they are provided with
clinical training in aspects of end of life care and, perhaps more
importantly, training in how to work together effectively to provide
patient centred care.
Allied professionals may also have a role. One US study found that
care co-ordination provided by allied health professionals helped
people near the end of life develop advance care plans and
improved satisfaction with care. The authors concluded that
sometimes the best carers are those who have empathy and
compassion, rather than just those who have specialist training.21
Peer mentoring is being developed
In the US an approach to incorporating peers as part of the care
team has been trialled. Dialysis patients were trained as peer
mentors to help others think through end of life planning. The peer
mentors focused on communicating information about advance care
plans. A randomised trial with more than 200 people from 21
centres found that peer mentoring significantly influenced the
completion of advance care plans compared to distributing standard
printed information or no intervention. The influence was most
prominent among minority ethnic groups. The authors concluded
that this approach may be culturally appropriate. They argued that it
is commonly assumed that printed materials are effective in
educating people about healthcare and decision making, but that
the relationship-centred peer mentoring approach may be more
effective in some cultural groups because it focuses on oral
traditions.
“Acknowledging cultural differences and tailoring our
approach could be powerful in enhancing trust and
participation and decreasing potential disparities in
healthcare outcomes.”22
Transforming staff
10
Similarly, partners of people with cancer have been taught how to
provide supportive pain management. Partners involved in the
programme felt more confident in their caregiving role and were
able to better manage people’s pain at home. A nurse visited at
home and taught the patient and their partner about pain
management protocols, spread over three sessions. There were
significant improvements in quality of life.23
Research about working with patients and carers as part of the care
team is in its early stages and is a very sensitive issue. However
seeing service users and their families as active participants in care
right through to the end of life has the potential to transform
community services and may be worth exploring further.
A first step may be to work with patient and carer representatives
and voluntary sector organisations to explore whether involving
service users and carers in this way might be acceptable in the UK
context and if so, the types of training, infrastructure and support
that may be needed. It might be assumed that asking someone who
is dying to mentor or educate others about this might be very
emotionally upsetting, but research from the US found that this was
not the case and that supporting others had positive effects on the
dying person’s wellbeing and sense of worth. Service users would
need to be carefully assessed as appropriate and regularly
supported to ensure no adverse effects or additional stress.
11
11
Automated systems give easy access to information
Information systems have been designed to provide automated
data, guidelines and reminders to staff offering end of life care.
These systems have the potential to reduce variation and human
error. Artificial intelligence techniques such as data mining, neural
networks and case-based reasoning have been built into some
systems, particularly in the US. For example, palliative information
systems are being used to provide reminders about guidelines to
reduce variations in outcomes and to disseminate expert level
'know how' to frontline clinicians caring for people in the
community.24 Such automated information systems have been
found to work well in other clinical areas when used as part of a
more comprehensive care package. The same may be true in end
of life care, though research is in the early stages.
Example of using information to make change
The Department of Health’s draft quality markers for end of life
care emphasise the importance of regularly auditing care to
ensure it meets best practice guidelines. A small pilot ‘national
audit of end of life care in primary care’ is underway and due to
report at the end of 2009. Every GP practice in 15 PCTs has been
invited to submit information about all patient deaths occurring in
February and March 2009. The practices use an online audit tool
known as ADA (After Death Analysis) to submit basic details about
an individual’s death, the services they used in the last six months
of life, the type of support provided to families and carers, use of
care pathways, and whether the person died in their preferred
place. The questions are based on best practice identified in the
Gold Standards Framework. No patient-identifying information is
provided.
The online tool takes 10-15 minutes per death to complete. It
provides feedback to each individual practice and data can also be
collated on a PCT, SHA-wide and national level. As soon as a
practice submits information online the programme immediately
provides a summary of the practice’s performance compared to
regional and national averages. The aim of the audit is to generate
a national benchmark to help monitor improvement over time, but
the ability to provide immediate individual comparative feedback to
practices has been positively received.
Transforming systems
12
This overview has briefly outlined examples of good practice for
improving end of life care in the community. We summarised
common themes from about 900 studies, including a small number
of illustrative examples of key points. We focused not on examining
individual services or models of care, but rather potential high
impact changes that are not currently well embedded in the NHS.
The priorities for further consideration are as follows:
Intervention Evidence quality Effect Priority
Formal care pathways High Positive H
Expand palliative care to cover
everyone
Medium Positive H
Automated audit and feedback
systems
Medium Positive M
Address gaps in spiritual care Medium Positive M
Palliative care at home Medium Positive M
Training for family members Low Positive M
Question lists for families Low Positive M
Training for nursing homes Low Positive M
Peer support for people at the
end of life
Low Positive M
GP home visits Low Positive M
Include complementary
therapies in care packages
Medium Mixed M
Written education for families Low Mixed L
Blending curative and palliative
care
Low Positive L
Priorities for further consideration are based on an assessment of
the amount of evidence available, the quality of evidence, the effect
of interventions and the extent to which initiatives are already being
implemented in the NHS. It is important to emphasise that not all
possible interventions are listed here. Also, in many cases there is
not a strong evidence base. This does not mean that an
intervention does not work well; only that it has not been well
researched. For this reason, the Department of Health used the
evidence as just one of the components considered when
developing high impact changes. Expert opinion, consensus
workshops and other methods were used to form a well rounded
picture, underpinned by this rapid evidence review.
Summary: what works?
13
13
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