March 2012Theme: Acute care

National UpdateNational Update

News

FeaturesACUTE CARE

How hospitals can help to achieve a ‘good death’

‘She died gently and peacefully: what more could I have asked?’

Five key enablers for achieving good end of life care:

Advance care planningjÒ

EPaCCSjÒ

Rapid discharge home to die jÒ

pathway

The AMBER care bundlejÒ

The Liverpool Care PathwayjÒ

A decision support tool for ambulance staff

Co-ordinating end of life care services in London

News in Brief

IN THIS ISSUE:A roundup of what’s happening at the National End of Life Care Programme

Newsletter

‘How to’ guide launch

Although an increasing number of deaths are taking place in people’s usual place of residence, the fact remains that most people still die in hospital. So the importance of the Programme’s latest ‘how to’ guide on improv-ing end of life care in acute set-tings cannot be under-estimated.

The new guide, produced in partnership with the NHS Institute for Innovation and Improvement, should help acute trusts implement the Programme’s 2010 document, The route to success in end of life care – achieving quality in acute hospitals. The emphasis throughout is on the frontline and on practical advice that can be easily implemented.

A total of 26 trusts have now signed up to work with us, using the guide to transform their end of life care services. This includes agreement to ‘buddy’ a neigh-bouring trust about to embark on the process later in the year while a cascade model is being devel-oped to ensure their learning is captured and shared.

We will be inviting further trusts to take part in the autumn so if you are interested please con-tact the Programme at informa-tion@eolc.nhs.uk.

Feedback welcomed

Do you work in heart, demen-tia, kidney care or neurological services? And have you read the end of life care frameworks for

THESEÒDISEASEÒSPECIµCÒAREASÒCO

produced by the Programme?

If so we would very much welcome your feedback on how useful they were to you and your practice and any improve-ments that have resulted for pa-tients. An evaluation survey is being undertaken in partnership with the Institute of Healthcare Management and we are keen to get your views.

The survey can be accessed on www.ihmsurvey.org.uk and will only take a few minutes of your time. The closing date for responses is 5 April. Any queries about the survey should be ad-dressed to education@ihm.org.uk.

Information standard for co-ordinating care

A new national information standard has been published WHICHÒSPECIµESÒTHEÒKEYÒDATAÒ

needed to ensure co-ordinated end of life care in line with the NICE quality standard for end of life care published last November.

The End of Life Care Co-Ordina-tion: Core Content Information Standard will facilitate consistent recording of information by health and social care agencies and, with the consent of the individual, sup-port safe and effective manage-ment and sharing of information.

The standard was developed by the NEoLCP and the Department of Health and approved by the Information Standards Board for Health and Social Care. Its primary purpose is to ensure the correct and effective use of data within Electronic Palliative Care Co-ordination Systems (EPaCCS) but the standard will also be use-ful for paper-based co-ordination systems.

It is backed up by accompanying implementation guidance on de-veloping and using EPaCCS and further guidance on record-keep-ing. See also pages 8 and 11.

Awareness Week

Preparations are now well advanced for Dying Matters Awareness Week which this year runs from 14-20 May.

The theme for the week is “Small actions, big difference” and a large number of initiatives are already planned, including using social media to write peo-ple’s own epitaphs as well as a special photography project and a writing competition.

At a special launch last month the coalition also screened its new µLMÒDying to Know, a drama ABOUTÒTHEÒDIFµCULTIESÒANDÒBENEµTSÒ

in talking about end of life. It has also produced a new range of postcards and posters to encour-age people to get involved.

Chief executive Eve Richardson says: “By being more open about dying and taking small actions such as writing a will, signing up to become an organ donor or looking out for those who have been recently be-reaved, we can all help make a big difference to ensuring peo-ple can live well and die well.”

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Claire HenryNational ProgrammeDirector

March 2012

Ambulance services could support more people in achieving ‘a good death’ and reduce unnecessary or unwanted hospital admissions and treatment, according to a new route to success guide published by the NEoLCP.

The route to success in end of life care – achieving quality in ambu-lance services says well-led ambu-lance services could bring together local commissioners and providers to improve local end of life care and make best use of resources.

Claire Henry, Director of the NEoLCP, said the key role of ambulance services had too often been overlooked. “After all, these are the people regularly faced with the reality of death and dying.”

Closer relationships with other services would enable ambulance service leaders to “feed into the development of consistent policies and procedures around issues such as resuscitation. For too long, that insight has been under-utilised or ignored.”

Key recommendations in the guide include:

Improved information and jÒ

communications systems and better information-sharing Training for ambulance clinicians jÒ

on end of life care issues, particularly in communication skills, bereavement skills and documentation such as PPC documents and advance decisions to refuse treatment

Improved access to 24/7 clinical jÒ

support for ambulance cliniciansTraining of other healthcare jÒ

staff to increase their understanding of the role ambulance services play Improved partnership working jÒ

between the regional ambulance service and local commissioners and providers.

Steve Barnard, Head of Clinical Governance with the North West Ambulance Service Trust, said: “Sometimes ambulance crews are almost working in the dark when they respond to an emergency call. Often they will not be aware that THEÒINDIVIDUALÒHASÒBEENÒIDENTIµEDÒASÒ

nearing the end of life.

“If they have the right skills, informa-tion and training and we put the right protocols in place, ambulance CLINICIANSÒWILLÒASSESSÒTHEÒOFTENÒDIFµCULTÒ

situations they encounter and re-spond appropriately - taking into ac-count the wishes of the individual.”

Deciding right, an NHS North East initiative to cre-ate a fully inte-grated approach to making care decisions in advance, was launched at the 9th Palliative Care Congress in Gateshead this month.

It is being rolled out not only across north east hospitals and

other NHS care settings, but in hundreds of nursing homes, care homes and hospices.

Developed by doc-tors, nurses, social care professionals, as well as patients and carers, the tool creates one standard regionwide process to help people make shared healthcare de-cisions in advance. It will also help patients who do not have ca-

pacity to make their own choices.

Dr Claud Regnard, Consultant in Palliative Care Medicine at St. Oswald’s Hospice and Newcastle upon Tyne Hospitals NHS Founda-tion Trust, said it brought together advance care planning, the Mental Capacity Act, cardiopulmonary re-suscitation decisions and emergency healthcare plans.

“At its core is the principle of shared decision-making to ensure that care decisions are centred on the individual and minimise the likelihood of unnec-essary or unwanted treatment.”

NHS North East launches new online advance care resource

NewsNEWS 2

Key end of life care role for ambulance services Most Europeans opt for a home death, says study

Around two thirds of people in a wide range of European countries would prefer to die at home if they had advanced cancer, according to a new comparative study.

The survey, on behalf of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), is published in Annals of Oncology. It looked at people’s pref-erences in seven countries: England, Italy, Germany, Spain, Portugal, Flanders and the Netherlands.

4HEÒµNDINGSÒREVEALÒTHATÒBETWEENÒ

64% and 84% would opt for a home death in every country apart from Portugal where only 51% would prefer a home death.

The study also shows that dying at home appears to be most favoured among those under 45 and then de-clines before reversing in the older age groups.

In England 64% of the sample of 1,351 respondents said they would prefer to die at home with 29% opting for a hospice, 3.2% for hos-pital and only 2% for a care home.

The researchers say that people’s preference for home deaths ap-peared to be dictated by their cir-cumstances and values rather than by their experience of illness, death ANDÒDYING�Ò4HEÒµNDINGSÒSUGGESTÒTHATÒ

home care should remain at the heart of end of life care policies in Europe, the authors conclude.

Claud Regnard: the resource helps shared decision-making

Image courtesy of North West Ambulance Service NHS Trust. © Jason Lock Photography (www.jasonlock.co.uk)

NEWS 3

St Joseph’s Hospice in East London HASÒBECOMEÒTHEÒµRSTÒHOSPICEÒTOÒ

adopt Schwartz Rounds, an Ameri-can-devised forum for health profes-sionals to discuss their emotional dilemmas in a mutually supportive way. More than 200 hospitals in the US now hold rounds on a regular basis. With the help of the King’s Fund, UK hos-pitals have also begun trialling the scheme.

Jenny Watmore-Eve, social work manager at St Joseph’s Hospice, attended rounds at two UK hospitals where she was struck by the opportunity they gave frontline staff to discuss their feelings with colleagues in an open, honest and non-judg-

mental environment, and decided to introduce them at St Joseph’s.

“The purpose of the rounds is not to solve problems but to explore the human and emotional aspects of the experience of delivering good quality compassionate care,

to describe the challenges faced, and pain carried by the staff on a daily basis,” she said. “We have no other multidisciplinary forum to do this.”

The scheme offers a regular scheduled time to discuss so-cial and emotional issues. The hour-LONG�ÒCONµDENTIALÒ

sessions, open to all

staff, have board level support and focus on anonymised cases.

At the beginning of the round the facilitator explains the house rules and then introduces the main speakers. At St Joseph’s second round, themed Feel the fear and do it anyway, a registrar, a community nurse and a social worker recounted incidents in which they felt threat-ened. Each event had had a major effect on those involved. Members of the audience shared similar ex-periences and commented on what they had heard.

“The rounds allow staff to hear and understand one another’s roles,” Jenny said. “When a staff group feel supported and understood their health and well-being will be improved and this will improve the care we give.”

>eif_Y[�WZefji�d[m�iY^[c[�je�^[bf�ijWù�Z_iYkii�[cej_edWb�_iik[i

The care of older people needs fundamental change to ensure all patients and residents are treated with dignity and respect, according to a new report from the Commis-sion on Improving Dignity in Care for Older People.

The commission, which was set up by the NHS Confederation, Age UK and the Local Government Associa-tion following a series of adverse reports, says that in too many cases people have been let down when they were vulnerable and most needed help.

“We want this report to be a call to arms to the whole health and social care system,” say the co-chairs in a foreword. “We need to work together to earn back public CONµDENCE�Ò7EÒKNOWÒTHEREÒAREÒ

some hospitals and care homes providing great care, and we need to learn from them to get digni-µEDÒCAREÒRIGHTÒFORÒEVERYÒPERSONÒ

every time.”

The draft report, Delivering Dig-nity, is now out for a one-month consultation. It recommends giving greater leadership to ward sisters, discussing feedback from patients and their families every day and taking time to understand and record people’s personal preferences.

Residents and relatives should also be involved in the running

of care homes while every home should have a residents’ charter and residents’ group. In addition the government should establish a Care Quality Forum to examine all ASPECTSÒOFÒCAREÒHOMEÒSTAFµNG�

Staff need to be recruited for their compassionate values as well as their skills. And language which denigrates older people should be as unacceptable as racist or sexist terms. “Hospitals and care homes should not tolerate this language and should make this explicit in their policies and practices.”

Achieving all this would mean “changing the way we design, pay for and monitor services that pro-VIDEÒDIGNIµEDÒCAREÒASÒTHEÒNUMBERSÒ

of older people in care continues to grow,” say the authors. Care must also be person-centred and not task-focused.

Older people’s care ‘needs fundamental change’ Advanced kidney disease recommendations

Healthcare professionals who care for people with long-term condi-tions need to implement systems for identifying and recording the wishes of patients nearing the end of life, says a new report by NHS Kidney Care.

Getting it right: End of life care in advanced kidney disease is based on the experiences of three project groups – in Bristol, Greater Manchester and at King’s Health Partners in London – which have worked with NHS Kidney Care to implement the 2009 framework for end of life care in advanced kidney disease, developed in partnership with the NEoLCP.

Effective systems for identifying patients nearing the end of life and for recording their wishes have been IDENTIµEDÒASÒONEÒOFÒTHEÒMOSTÒIMPOR-tant steps in supporting those with advanced kidney disease to live as full a life as possible and to die with dignity in a setting of their choice.

Other recommendations include:Using appropriate IT systems for jÒ

end of life co-ordination so all groups are aware of a patient’s expressed preferencesOffering advance care planning to jÒ

all dialysis patients0ROVIDINGÒSPECIµCÒENDÒOFÒLIFEÒCAREÒjÒ

and communications skills training for staff.

Jenny Watmore-Eve: supported staff give better care

FEATURES / ACUTE CARE 4

Four years on from the publication of the National End of Life Care Strategy, it is a sad fact that many health professionals involved in caring for older peo-ple continue to see death as a failure on the part of the hospital or their team.

Yet, as the strategy emphasised, it is possible for care professionals and organisations to work together with each other and the individual to help increase the number of people who experience ‘a good death’. Our new ‘how to’ guide aims to show exactly how that can be done.

Roberta Lovick, the user representative who helped produce that guide, speaks powerfully about her two very different experiences of end of life care. She says: “My daughter died in a busy A&E department on a Friday night because I was anxious and lacked THEÒKNOWLEDGEÒTOÒCARRYÒONÒCARINGÒFORÒHERÒINÒHERÒµNALÒ

hours at home - despite that being my fervent wish. That had, and continues to have, a devastating impact on me.

Our theme this month is acute care and coincides with the publication of two important NEoLCP guides - our ‘How to’ guide to implementing high quality end of life care in hospitals and our route to success guide to ambulance services and end of life care.

We begin by explaining why the ‘how to’ guide is needed and what difference it can make. We also HIGHLIGHTÒTHEÒµVEÒKEYÒENABLERSÒANDÒDESCRIBEÒHOWÒ

they are working in practice. Finally, we describe two ambulance service initiatives that are helping to improve care and ensure joined-up working.

“By contrast, I was able to be actively involved in my mother-in-law’s excellent palliative care. She was treated with dignity and respect throughout her period in hospital.

“For the sake of people nearing the end of life and their relatives, all hospitals and other care organisa-tions should be striving to provide end of life care that relieves families and carers of unnecessary guilt and anxiety.”

Roberta describes her contrasting experiences in more detail on the following page.

The new guide, produced in partnership with the NHS Institute for Innovation and Improvement, should help acute trusts implement the Programme’s 2010 document, The route to success in end of life care – achieving quality in acute hospitals. It draws on the principles and approaches used in Releasing Time to Care: The Productive Ward.

Transforming end of life care in acute hospitals: the route to success ‘how to’ guide encourages frontline clinicians to consider how they, their colleagues and their partners currently work to meet the needs of those nearing the end of life. They are then asked to consider whether those practices could be redesigned to improve care or ensure it is delivered systematically, RELIABLYÒANDÒEFµCIENTLY�

This needs to begin with an assessment of current provision and a plan for change that includes key milestones and gateways where progress is meas-ured. Using the six-step approach to continuous im-provement within the Productive Ward (see diagram) can help to achieve this.

High on the list of key enablers that will deliver im-provement are individual and organisational practices that include:

Open communication with the individual and jÒ

his or her carers and relatives that allows for

The NEoLCP’s new ‘How to’ guide aims to give hospital staff the tools to ensure patients receive the best end of life care. Deputy Director Anita Hayes explains how it works while user representative Roberta Lovick relates her own experience

How hospitals can help to achieve a ‘good death’

Acute care

FIGURE

The six-step continuous improvement model from the Productive Ward.

(© NHS Institute for Innovation and Improvement)

achieved success and top tips - and its emphasis on the frontline – the guide is a step-by-step map to support clinicians as they improve their own practice and the services offered by their hospital and their partners.

.ORÒISÒTHISÒAÒONE SIZEÒµTSÒALLÒAPPROACH�Ò4HEÒGUIDEÒ

recognises that staff and organisations will have very different starting points.

It provides everyone working with people nearing the end of life with additional tools to ensure their patients are involved in planning their care and make it more likely that they receive the care and services they wish to receive in the setting of their choosing.

FEATURES / ACUTE CARE 5

genuine shared decision-making, advance care planning and respect for the individual’s preferences for careCo-ordination of care, both within a hospital and jÒ

with partners such as the individual’s GP, social care, hospices, district nursing and specialist palliative care nursing services – including through use of electronic palliative care co-ordination systems (EPaCCS)Rapid discharge home to die arrangementsjÒ

Appropriate access to training and education andjÒ

Strong executive leadership and commitment.jÒ

The new resource is not another set of guidance outlining an ideal that hard-pressed clinicians should be striving for. With examples of how others have

"EINGÒAÒCARERÒCANÒBEÒAÒDIFµCULTÒJOB�ÒESPECIALLYÒIFÒITÒ

entails caring for someone at the end of their life. We all want the very best death for a loved one but sadly this doesn’t always happen, often leaving the carer with a heavy burden of guilt - as I know only too well

While caring for my daughter, who died from breast cancer aged just 28, I was determined to do my ut-most to give her the best care and attention in order to ease her journey.

However, I feel that due to ignorance and fear I failed Louise.

To this day this weighs heavily on me. If only the medical staff that we came into contact with had seen beyond my Oscar-winning facade of a carer cop-ing so well. That would have allowed me to drop the pretence and seek the information that I so desper-ately needed in order to cope.

I just wasn’t brave enough to ask. I could and did give Louise all the love and attention only a mother could give but even that was not enough.

Sadly, Louise died in an accident and emergency department on a busy Friday night because I, through lack of knowledge, called 999 in desperation.

Since her death I have become an active campaigner for better end of life care based around communi-

cation, co-ordination of care (particularly between hospital and community services) and advance care planning. I have recently been the user representa-tive on the NEoLCP and NHS Institute working group that has developed a practical guide for hospitals and their staff to improve their care of dying people and their families.

In helping with that guide, I was also able to draw on a more positive experience of supporting a dy-ing relative, my mother-in-law. I witnessed wonder-

ful care in the hospital as she was placed on the Liverpool Care Pathway.

The nurses and doctors involved her and the family in discussions about her care.

I was allowed to stay with her for four days and nights, which enabled me to help with her various needs, including oral care. I read to her, sang to her and simply held her hand. When she was anxious I was there to ease her concerns, and it was an honour and a privilege.

She did not die at home, as was her wish, but she died gently and peacefully: what more could I have asked? This time there is no burden of guilt.

These two experiences of end of life care could not have been more different. On both occasions I know that the nurses and their colleagues did their very best under the circumstances.

My mother-in-law’s case shows what is possible when the carer and staff form a partnership, thus fostering the very best care and a death that, while sad, we are ABLEÒTOÒRE¹ECTÒONÒWITHÒPEACEÒOFÒMINDÒANDÒIMMENSEÒ

gratitude.

MORE INFORMATION

The document is available at http://bit.ly/wuHii3

ABOUT THE AUTHOR

Anita Hayes is Deputy Direc-tor of the NEoLCP

ABOUT THE AUTHOR

Roberta Lovick was the user representative on the ‘How to’ guide working group

‘She died gently and peacefully: what more could I have asked?’

We all want the very best death for a loved one but sadly this doesn’t always happen

Roberta Lovick

“

”

FEATURES / ACUTE CARE 6

Adopting tried and tested approaches to implementing high quality end of life care will improve your chance of SUCCESS�Ò(EREÒWEÒIDENTIFYÒµVEÒKEYÒENABLERSÒANDÒDESCRIBEÒHOWÒTHEYÒAREÒALREADYÒMAKINGÒAÒDIFFERENCEÒ

Five key enablers for achieving good end of life care

Advance care planningAdvance care planning is a voluntary process of dis-cussion and review with the aim of helping someone who has the capacity to indicate what their prefer-ences and wishes are for future care.

If the individual wishes, they can record choices about their care and treatment and an advance deci-SIONÒTOÒREFUSEÒAÒTREATMENTÒINÒSPECIµCÒCIRCUMSTANCES�

These choices can then be referred to by those responsible for care and treatment if, as the illness progresses, the individual loses capacity to make deci-sions for themselves.

Advance care planning involves a series of conversations in which a person’s wishes AREÒEXPLORED�ÒIDENTIµEDÒANDÒTHENÒRECORD-ed. Policies should be agreed locally about where care planning documentation should be kept, including any formalised

outcomes. There should also be systems in place to en-able health and social care professionals involved with the individual – including out of hours providers and ambulance services – to share information.

Useful ACP support tools are:Capacity, care planning and advance care planninjÒ g in life-limiting illness: a guide for health and social care staffPlanning for your future carjÒ ePreferred priorities for carjÒ e documentation The jÒ differences between general care planning and decisions made in advance Holistic common assessmenjÒ t of supportive and palliative care needs for adults requiring end of life careConcise Guidance to Good Practice: jÒ Advance Care Planning (RCP, 2009).Thinking and planning aheajÒ d: learning from otherse-ELCjÒ A End of Life Care for All e-learning, which includes modules on ACP

In recent months Blackpool Teaching Hospitals Foundation Trust has been running special half-day training ses-sions for its staff on communications as part of its plan to introduce advance care planning for all patients approach-ing the end of life.

The trust’s end of life care team found that one of the main stumbling blocks to ACP was staff’s apprehension about ENTERINGÒINTOÒWHATÒTHEYÒSAWÒASÒDIFµCULTÒ

conversations.

!SÒAÒRESULTÒTHEÒTRUSTÒIDENTIµEDÒFUNDINGÒ

to train a cohort of six facilitators who are now starting a rolling programme of three-hour sessions on communications skills which will be made available to all staff within the organisation. So far 30

staff a month are going through the training but it is hoped shortly to expand the number of facilita-tors and therefore double the numbers receiving the training each month.

These are very early days, says Lead Cancer Nurse Andrea Doherty, but anecdotal evidence suggests the training is already having an effect. “A couple of people have said they actually used the model in clinical practice and that it has worked well.”

The initiative is part of a wider end of life care strategy across the entire health economy aimed at ensuring that people are cared for and die where they wish. The next stage of this process will be the gradual introduction of the PPC within selected

wards as well as making use of the AMBER care bundle (see p8).

The current policy began in 2009 when the trust carried out an audit of deaths within its hospitals. It found that of 60 deaths, 45 had been expected where the patient expressed a wish to return home but for one reason or another had been unable to.

A number of changes have been made to improve the rapid discharge pathway, including making use of a private ambulance that can be ready within a COUPLEÒOFÒHOURS�ÒTAKINGÒAÒMOREÒ¹EXIBLEÒAPPROACHÒTOÒ

equipment and ensuring that prescriptions are avail-able within half an hour.

The hospitals are now discharging around 20 peo-ple a week within 24 hours and one or two a week within four hours. And, says Andrea, the numbers appear to be growing.

The end of life care team is also working closely with other parts of primary and secondary care as well as local hospices to ensure that all aspects of care are co-ordinated and that, for instance, people aren’t ADMITTEDÒTOÒHOSPITALÒUNNECESSARILYÒINÒTHEÒµRSTÒPLACE�Ò

!LTHOUGHÒITÒISÒDIFµCULTÒTOÒµNDÒHARDÒMEASURESÒOFÒ

PROGRESSÒINÒSUCHÒAÒCOMPLEXÒµELD�Ò!NDREAÒSAYSÒTHEÒ

response of patients and families to the new policy has been very positive. She relates an example where a patient who was being discharged home said her dying wish was to see the sea one last time. “So the ambulance took her home but on the way pulled up at the promenade and the lady was able to sit looking at the sea for 30 minutes before going home.”

CASE STUDY: BLACKPOOL TEACHING HOSPITALS FOUNDATION TRUST

FEATURES / ACUTE CARE 7

Rapid discharge home to die pathway

EPaCCSThe Electronic Palliative Care Coordination System (EPaCCS) – previously known as the end of life local-ity register – allows for the recording and sharing of key information about the individual at the end of life, including their care and preferences.

Information can be accessed by a range of services with the ultimate aim of improving the co-ordination of care and ensuring that people’s wishes for where they are cared for and die are respected.

In 2009 eight pilot sites were set up to test out how this would work in practice and the recommenda-tions were included in an Ipsos MORI evaluation.

The Information Standards Board for health and social care has subsequently approved a national in-FORMATIONÒSTANDARDÒFORÒENDÒOFÒLIFEÒCARE�Ò4HISÒSPECIµESÒ

the core data that is essential to be recorded in the EPaCCS and is in line with the NICE quality standard on end of life care.

Many hospitals now operate a rapid discharge scheme to enable dying patients to be transferred home within 24-48 hours. Some are even working towards discharge within four hours for especially urgent cases.

All this requires clear pathways based on local proce-dures and close co-ordination between all those in-volved. It also needs to take account of local working practices. For example, some district nursing services will not care for someone at the end of life if there is not a hospital bed within the home, so this may need careful advance planning.

The handover of medication is also important. This means good documentation is needed, using local

prescription formats, to ensure that the medications started in hospital can be given by community staff without having to wait for a GP to prescribe them.

Ideally a member of the hospital staff should ac-company the person home where they would be met by community staff. Face-to-face handovers tend to be more effective, although this is not always possible.

Another critical element is careful, sensitive discus-sion with the individual and their family so they understand the implications of a transfer. It also makes sense to place relevant information on EPaCCS to ensure care is co-ordinated between the different services.

Weston Area Health Trust is in the process of rolling out the EPaCCS approach ward by ward, building on two years of implementing an end of life care strategy.

This has included a project with Help the Hospices that involved taking nurses off the ward to provide them with specialist end of life care training. These nurses have also been funded to devote time to this co-ordinating role once back on the ward.

The end of life care team has also worked with consultants,

junior doctors and ward staff to ensure they can identify those patients with end of life care needs and then alert GPs and other non-hospital services upon discharge.

One key message, says Dr Julian Abel, Consultant in Palliative Care with the trust, is that EPaCCS cannot be separated from all the other elements of good end of life care. “It is about being part of a process. You’re talking about a variety of different things in

the context of what’s appropriate for somebody en-tering on the end of life pathway. And the question TOÒASKÒIS�ÒHOWÒDOESÒTHISÒµTÒIN�i

So if someone has started to discuss advance care plans on the ward, staff need to consider what hap-pens next and ensure this information is included not only in EPaCCS but also in the discharge letter to the GP.

Above all, the process must be straightforward and easily implementable if it is to work on a busy ward. “It may be great in principle but it’s no good with-out having easily accessible information about what TOÒDOÒNEXTÒATÒYOURÒµNGERTIPS�Ò)TgSÒTHISÒNITTYÒGRITTYÒ

which is so important”

(EÒIDENTIµESÒTHREEÒBASICÒOPTIONSÒWHENÒAÒDOCTORÒSENDSÒ

a discharge letter to the local GP asking them to place the patient on EPaCCS. They can either say the PATIENTÒHASÒBEENÒIDENTIµEDÒASÒBEINGÒINÒTHEÒLASTÒ� ��Ò

months of life and ask the GP to begin advance care planning discussions; or they can indicate that some discussions have taken place that need to be contin-ued; or that these discussions have been completed.

“What we have to do is to make it as easy as pos-sible for colleagues to participate at the level they feel most comfortable with,” he stresses. “This is SENSITIVEÒSTUFFÒBUTÒWEÒNEEDÒTOÒµNDÒAÒWAYÒINÒWHICHÒ

all staff can participate.”

CASE STUDY: WESTON AREA HEALTH TRUST

FEATURES / ACUTE CARE 8

The AMBER Care BundleThe AMBER Care Bundle was developed at Guy’s and St Thomas’ Hospital to support teams in identifying and responding to someone’s end of life care needs when their recovery is uncertain. It is designed to en-able treatment to occur alongside palliative care.

The tool incorporates and is supported by a package of interventions which includes staff training and de-velopment required to embed the tool in daily ward and operational practice.

The AMBER acronym stands for:AssessmentManagementBest practiceEngagement of individuals and carersFor people whose Recovery is uncertain

Emerging evidence suggests that using AMBER improves decision-making. It also has a positive impact on multi-professional team communication ANDÒWORKINGÒANDÒINCREASESÒNURSESgÒCONµDENCEÒABOUTÒ

when to approach medical colleagues to discuss treatment plans. In addition people are treated with greater dignity and respect and there is greater clarity around preferences and how they can be achieved.

The Royal Liverpool and Broadgreen University Hospi-tals Trust has been operating a rapid discharge path-way for the last 10 years. Two years ago the Hospital Specialist Palliative Care Team made a number of changes to bring it into line with version 12 of the

Liverpool Care Pathway for the Dying Patient.

Lynne Cannell, Acting As-sistant Directorate Manager, explains that following a stakeholder meeting they addressed several key themes that had the potential to delay the smooth operation of the discharge process.

These were the release of key medications from pharmacy, the production of equipment for the home and the speed of response of the ambulance service. In most cases this was a matter of speeding up the process but with equipment, for example, it could be a matter of deciding which the priority was: locating the right equipment or getting the patient home? The key was

¹EXIBILITYÒANDÒPLACINGÒTHEÒPATIENTgSÒWISHESÒATÒTHEÒ

heart of everything.

The team also established two levels of urgency for those awaiting rapid discharge. In future it would aim to discharge level one patients within six hours while level two patients would be discharged within 12-24 hours.

The result has been a more streamlined service with all those who expressed the wish to go home to die achieving their wishes within the allotted time. Inevitably, in such a fast-moving scenario, some change their minds, says Lynne. “For some families we start going through the process and then for one reason or another they say we can’t do this and the patient stays in hospital.”

The key to success is close co-ordination and good teamwork. “We work very closely with our discharge planning team and always have joint meetings with them and, especially, the patient and FAMILYÒTOÒµNDÒOUTÒWHATÒTHEIRÒEXPECTATIONSÒARE�i

An average of 30 patients return home each year through the rapid discharge pathway, she says, and so far none has had to be readmitted or re-referred. “Everyone knows that the patient wishes to be cared for at home and this is what we set out to achieve.”

Guy’s and St Thomas’ Foundation Trust has been operating the AMBER care bundle in around half of its wards since last August. And, says Consultant in Palliative Medicine Irene Carey, it is having a notice-able effect.

During this time over 600 patients have been identi-

µEDÒASÒBEINGÒATÒRISKÒOFÒDYINGÒINÒTHEÒNEXTÒONEÒTOÒTWOÒ

months or facing an uncertain recovery and gone through the AMBER process. Of patients managed with the AMBER care bundle in 2011, 55% were discharged home to die while the rest stayed in hospital, often because they chose to rather than because they were too ill to transfer. Latest available

CASE STUDY: ROYAL LIVERPOOL AND BROADGREEN UNIVERSITY HOSPITALS TRUST

CASE STUDY: GUY’S AND ST THOMAS’ FOUNDATION TRUST

FEATURES / ACUTE CARE 9

The LCP is a multi-professional, outcome-driven docu-ment that provides an evidence-based framework for the delivery of care in the last days or hours of life.

The use of the document should be underpinned by an implementation, education and training pro-gramme and sit within the governance agenda of INDIVIDUALÒORGANISATIONS�Ò)TÒHASÒBEENÒIDENTIµEDÒASÒBESTÒ

practice within the NICE Guidance for Supportive and Palliative Care, was highlighted as one of three end of life care tools by the Department of Health and is recommended in the End of Life Care Strategy and Quality Markers.

Version 12 of the LCP, which was published in De-cember 2009, retains the focus of earlier documents on communication, information and comfort care in the last hours and days of life. It also includes an ALGORITHMÒTOÒSUPPORTÒTHEÒIDENTIµCATIONÒOFÒTHEÒDYINGÒ

phase and more explicit goals on hydration, nutrition and skin integrity.

Over 2,000 organisations in the UK are currently reg-istered with the LCP central team, including hospitals, hospices, care homes and home teams. In addition more than 20 countries outside the UK are working with the LCP.

The Liverpool Care Pathway (LCP) for the Dying Patient

The Marie Curie Palliative Care Institute Liverpool (MCPCIL) has been running a pilot for the last nine months to introduce the latest version of the LCP into all 11 intensive care units within the Cheshire and Mersey Critical Care Network.

The project, funded by the Merseyside and Cheshire #ANCERÒ.ETWORK�ÒHASÒIDENTIµEDÒKEYÒCHAMPIONSÒINÒ

each site who meet on a monthly basis to discuss progress. They are also responsible for delivering education and training to their staff.

The LCP is an integral part of intensive care where, inevitably, the number of unexpected deaths tends to be high. One major difference from other areas of care, says Project Manager Maureen Gambles, is that the pathway may only come into play when decisions are taken to withdraw treatment and this may be very shortly before the patient’s death.

“When a patient is on a life support system then discussions start to take place involving the fam-ily and multidisciplinary team. If it is decided to withdraw treatment, the space of time between withdrawal and death can be measured in hours or even minutes.”

So far 10 of the 11 sites have achieved their targets of providing training to the majority of CCU staff and have also placed an average of 17.5 patients on the adapted LCP. One site has been unable to meet the targets and will not therefore take part in the auditing process.

The implementation period of the pilot ended LASTÒMONTHÒANDÒAÒµNALÒREPORTÒONÒWHATÒHASÒBEENÒ

achieved will be produced in the summer.

µGURESÒSUGGESTÒ���ÒOFÒTHOSEÒWHOÒDIEDÒACHIEVEDÒ

their preferred place of death.

While the majority of those dying in hospital died within a fortnight of being placed on AMBER, most of those who returned home died within 100 days. “The reality is that many people feel safer in hos-pital and don’t want to go home,” explains Irene. h3OMEÒPEOPLEÒDOÒWANTÒTOÒGOÒHOMEÒANDÒTHATgSÒDEµ-nitely enabled because of our earlier detection.”

A possible indication of the wider effect of AMBER is a reduction in the overall hospital death rate. This may be linked to increased numbers of patients be-ing fast-tracked home to allow them to die there if this is their wish.

Irene also suggests that teamwork has improved on the wards that use the care bundle. “Everybody knows what AMBER means and have a mutual under-

standing of what the plans are.” They also appreciate the clarity of having particular deadlines to meet when someone is being prepared for rapid discharge.

“The fact is that the philosophy is now embedded in [these] wards,” she adds. “They are not depend-ent on the palliative care team.”

Irene hopes the bundle will now be rolled out to most of the hospital’s remaining wards. It is also planned to increase its use at neighbouring King’s College Hospital as well as piloting it in surrounding community areas.

!-"%2ÒHASÒBEENÒIDENTIµEDÒASÒAÒKEYÒENABLERÒINÒTHEÒ

Transform hospital end of life care programme. The team at Guy’s & St Thomas’ is working with trusts across the country to support implementation.

More information can be found on the GSTT website.

CASE STUDY: CHESHIRE AND MERSEY CRITICAL CARE NETWORK

FEATURES / ACUTE CARE 10

!MBULANCEÒCREWSÒCANÒOFTENÒµNDÒTHEMSELVESÒATÒTHEÒ

sharp end of end of life care decisions – and on occasions they may feel ill equipped to make them. Now, however, a new decision support tool, which has been piloted for the last six months in the West Midlands, may be about to change that.

The tool was devised by Warwick University and West Midlands Ambulance Service. Associate Clinical Pro-fessor Dan Munday explains that the idea emerged after he and colleagues conducted a survey among ambulance crews in the area two years ago.

A questionnaire and follow-up interviews aimed to discover how much ambulance staff knew about end OFÒLIFEÒCAREÒAND�ÒSPECIµCALLY�ÒHOWÒTHEYÒWOULDÒRESPONDÒ

to DNACPR orders and make decisions about hospi-talisation for those who were terminally ill.

The results highlighted a number of misunderstand-ings and confusions, said Dan. For example, when faced with a do not resuscitate order written by a hospital consultant only 80% said that would be valid while when the order had been signed by a GP or nurse the numbers dropped further. Yet in fact all these orders were valid.

There was also confusion about how long a DNACPR was valid and a tendency to err on the side of caution when considering whether to hospitalise.

4HESEÒµNDINGSÒWEREÒUSEDÒINÒTHEÒDEVELOPMENTÒOFÒANÒ

online end of life care training course for all ambu-lance staff in the region, led by Coventry University and involving the ambulance service and Myton Hos-pice. So far over 1,000 staff have taken the course.

However, Dan and his colleagues were concerned that education by itself might not be enough when it came to making those heat of the moment decisions in the individual’s home. So they bid for funding from NHS West Midlands to develop and test a decision support tool.

The tool devised by Dan and his colleagues was then tested out on focus groups of ambulance profession-als before being piloted among 65 crews across the region between last September and this February.

4HEÒTOOLÒHASÒTHREEÒSECTIONS�ÒÒ4HEÒµRSTÒRELATESÒTOÒWHATÒ

to do when crew are called out to someone who is terminally ill and has had a cardiac arrest. The tool takes them through the different steps and stresses that if they are presented with a written do not resus-citate order then they have to accept it even if they might not know the background to it. They should be aware that a verbal order from an appropriate clini-cian is also valid.

The second section covers “peri-arrest” – that is, when crews are called to someone who is in the process of dying. It is important to look for clues such as district nurse notes or information from the family which might indicate the patient is close to death. In these circumstances the ambulance staff are advised not to attempt resuscitation even though there may not be a written DNACPR in evidence.

4HEÒµNALÒSECTIONÒCOVERSÒTHEÒQUESTIONÒOFÒWHETHERÒTOÒ

transport someone to hospital or not. If someone is in the advanced stages of a chronic illness then staff need to recognise this and discuss with the patient and family whether they want to be taken to hospital. Equally, if someone lacks capacity, they are encouraged to ask about the availability of an ACP, to talk to the family and contact other professionals for advice before decid-ing to transport them to hospital. Each section provides AÒ¹OWÒCHARTÒTOÒHELPÒSTAFFÒREACHÒTHEIRÒDECISION�Ò

Dan stresses that the tool should always be used in conjunction with the online education programme. But so far, he says, the response from those who have tested it out has been positive.

“The initial indications are that all those who have used the tool agree it’s a useful document,” he says. “Not all felt it had changed their practice but it made THEMÒMOREÒCONµDENTÒTHATÒWHATÒTHEYÒWEREÒDOINGÒWASÒ

appropriate.”

In the interviews many had been concerned they could face criticism or even disciplinary action and that the organisation’s policies wouldn’t back them up. “A lot of them felt that the way a policy is writ-ten meant it prevented them from doing what they felt was morally right,” says Dan. “But of course often they are interpreting [policies] in the most risk averse way and that has been the problem.”

The evaluation of the pilot is not yet complete. But Dan hopes that if things go to plan it could become a part of normal practice for the ambulance service across the West Midlands within a matter of months. He would also like to see it incorporated in the clini-cal practice guidelines produced by the Joint Royal Colleges Ambulance Liaison Committee (JRCALC).

A new support tool looks set to help ambulance staff in the West Midlands reach the right decisions when they are called to help end of life care patients in their home. Andrew Cole talks to one of its authors Dan Munday

7�Z[Y_i_ed�ikffehj�jeeb�\eh�WcXkbWdY[�ijWù

The West Midlands decision support tool could be part of normal practice within months

CONTACT DETAILS

Dan MundayjÒd.munday@warwick.ac.uk

The origins of London’s Coordinate My Care service go back several years to a night when a terminally ill patient who had asked to die at home was rushed by ambulance to A&E where he died later that day.

David Whitmore, Senior Clinical Adviser to the Lon-don Ambulance Service (LAS) Trust Medical Direc-tor, recalls how an angry head of the local hospice contacted him “demanding to know why the blazes one of her patients had died on a trolley in a hospital corridor when he was supposed to die at home. And I had to say we just didn’t know about these plans.”

As a result David sat down with LAS Control Staff and doctors and nurses and had a serious discussion about “how we were going to stop this ever happening again”.

The process of ensuring that all services are made aware of people’s end of life care plans has gone though several stages since then.

But the latest and most ambitious is Coordinate My Care, a clinical service underpinned by an electronic end of life care co-ordination system. This enables GPs and other primary care professionals to enter rel-evant clinical information about an individual, and for this to then be communicated to all those who need to know. In all cases the individual must consent to this information being recorded or have it included according to the best interests rule.

The new scheme began last year. So far 1,086 pa-tients have been entered onto it. Five trusts have al-ready adopted it and the aim is that everyone across London will be using it by April 2013.

“The LAS is the only pan-London acute trust,” says David. “We are currently dealing with 31 PCTs, several hospices and an unknown number of GP commission-ing groups. For the patient to get the best deal we need a standard system so that everyone is in the loop.”

Under the new system the LAS is alerted by email as soon ASÒSOMEONEÒISÒPLACEDÒONÒTHEÒ#-#�Òh7EÒTHENÒPUTÒAÒ¹AGÒ

ONÒTHEÒPATIENTgSÒHOMEÒADDRESSÒANDÒTHATÒ¹AGÒWILLÒSITÒTHERE�Ò

If an ambulance gets a call to that address they will be alerted and, if needed, can ask the clinical support desk in

Staff need access to all the relevant information when they are called to an individual’s home

CONTACT DETAILS

David WhitmorejÒdavid.whitmore@lond-amb.nhs.uk

jÒwww.londonambulance.nhs.uk

FEATURES / ACUTE CARE 11

the emergency operations room to access the records.”

All this means that when they arrive at the patient’s home they should be able not only to establish their condition but know what is the best course of action, whether there are any resuscitation requests and who to contact if they need more specialist support.

The importance of this cannot be over-estimated, says David. “We tend to get called at the crisis moment when maybe the plan has failed and the carer is dog-tired or the patient has had enough. In this situation they may forget that the plan was, say, to phone the palliative care nurse. The fact is that when things go wrong sometimes care plans go out of the window.”

The bottom line, he adds, is to act always in the pa-tient’s best interests. “One very strong principle is, wher-ever possible, to avoid an inappropriate admission to hospital and/or an inappropriate resuscitation attempt.”

He gives the example of a recent case where the crew were called out to the home of a man dying of cancer because his carer was alarmed by a sudden deteriora-tion in his condition. Because the crew had access to the individual’s care plans, including who to contact in an overnight emergency, they were able to phone his hos-pice and arrange for him to be transferred immediately. The man died peacefully there about 10 hours later.

“If we hadn’t had access to the records, the only option open to the crew would have been to take him to the A&E department,” David points out. “But because we were able to get into the record we got all the right contact details very quickly.”

He stresses that the information on the CMC is very se-curely protected and is available to LAS staff who need access on a read-only basis. “We have very strong infor-mation governance to make sure only the right people have access to it and those people who are accessing it are doing so for the correct reasons. At the moment this is only the clinical support desk staff.”

Over the coming years ambulance staff are likely to encounter a growing number of people wishing to die at home, he says. With this in mind the LAS has developed an end of life care training package. But staff also need to have access to all the relevant information when they are called out.

4HISÒISÒCRUCIALÒIFÒTHEYÒAREÒTOÒFULµLÒTHEIRÒPRIMARYÒROLEÒ

of representing and achieving the patient’s best interests. “By all means take into account what rela-TIVESÒSAY�ÒWANTÒORÒDOÒBUTÒµRSTÒOFÒALLÒYOUÒHAVEÒGOTÒTOÒ

advocate for the patient.”

Co-ordination is key to good end of life care. Senior Clinical Adviser David Whitmore tells Andrew Cole how a new electronic system could transform ambulance service responses within the capital

Co-ordinating end of life care services in London

Spirituality resource

The RCN has produced a new online resource about spirituality in nursing care. The resource expands upon the 2010 Spirituality in nursing care pocket guide.

Innovation prizes

Entries are invited for this year’s NHS Innovation Challenge Prizes. The scheme, which offers substantial cash prizes, recognises and rewards ideas that tackle some of the most challenging areas in healthcare.4OÒµNDÒOUTÒMOREÒCLICKÒhere.

Kidney care evaluation

A new report from NHS Kidney Care HIGHLIGHTSÒTHEÒBENEµTSÒTHATÒPEOPLEÒ

with a long-term condition can gain from monitoring and managing their condition online. The evaluation shows that patients using Renal Patient View (RPV), a secure internet-based system, feel more informed and involved in decisions about their treatment. To download the report click here.

Dementia rise

The number of people diagnosed with dementia in England and Wales has increased, according to new µGUREs from the Alzheimer’s Society. The number of people diagnosed with dementia rose from 265,000 to 283,000 in a year. But only 41% of people living with dementia have a diagnosis.

NICE guideline

NICE is consulting on a new guide-line on the prevention and manage-ment of neutropenic sepsis, for use in the NHS in England, Wales and Northern Ireland. The deadline for comments is 28 March.

Dignity code

The National Pensioners Convention has produced a new dignity code setting out minimum standards for THEÒDIGNIµEDÒTREATMENTÒOFÒOLDERÒ

people, whether in hospital or the community.

Patient experience

The NHS Institute has produced a new guide which aims to help health and social care professionals improve the patient experience. Transforming patient experience: the essential guide INCLUDESÒTHEÒFULLÒRESEARCHÒµNDINGSÒ

from a study undertaken by King’s College London and The King’s Fund.

COMING EVENTS

Volunteers conference

The Commission into the Future of Hospice Care is holding a confer-ence on 20 April to consider the role of volunteers in hospices. For more details or to book a place, contact the courses and conferences team.

Diversity course

The Woolf Institute and Bart’s and the London NHS Trust are running a one-day course entitled Diversity in End of Life Care: A Muslim/Jewish Case Study at Bart’s and The London School of Medicine & Dentistry Old Library on 23 April. Further details from Dr Claire Henderson Davis at claire.hd@woolf.cam.ac.uk or phone 01223 478 175.

Cancer outcomes

Abstracts are being invited for oral and poster presentations for the NCIN Cancer Outcomes Conference in Birmingham from 14-15 June. The deadline for submissions is March 31. Click here for more information.

News in BriefNEWS IN BRIEF 12

Older people research

New research funded by UK Re-search Council’s New Dynamics of Ageing programme indicates that older people feel their health prob-lems pose a challenge to their sense of independence, dignity and identity and sometimes the healthcare they are given makes things worse. The µNDINGSÒAREÒBASEDÒONÒMaintaining dignity in later life: a longitudinal qualitative study of older people’s experiences of support and care.

DH fact sheets

The Department of Health has pub-lished a number of fact sheets on the Health and Social Care Bill. They focus on different themes, setting out the government’s vision for the NHS and its reasons for the proposed changes.

Hospice at home

All hospice at home services are be-ing urged to take part in a project, run by Help the Hospices, which will collect information on the inputs and outputs of hospice at home services over a three month period. To regis-ter your interest, email Anne Garley.

Mary Seacole awards

The deadline for applications for this year’s Mary Seacole Leadership and Development Awards programme is 1 May. The awards are for projects THATÒBENEµTÒANDÒIMPROVEÒTHEÒHEALTHÒ

outcomes of people from black and minority ethnic communities.

Telecare newsletter

Telecare LIN’s February newsletter is out and includes information from the 3 Million Lives initiative, the aim of which is to have three million PEOPLEÒBENEµTINGÒFROMÒTELEHEALTHÒ

and telecare.

NATIONAL END OF LIFE CARE PROGRAMMEPHONE: 0116 222 5103EMAIL: information@eolc.nhs.ukTWITTER: @NEoLCP

3rd FloorSt John’s HouseEast StreetLeicester LE1 6NB

For more information on the National End of Life Care Programme, including discussion forums and an events calendar, please visit:WWW�ENDO¸IFECAREFORADULTS�NHS�Uk