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Evidence for transforming community services

Services for end of life care

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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.

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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

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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

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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

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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

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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

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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.

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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

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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?

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References

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