Route to success - treat

TreatSection 4 The route to success

Section 4

In this section you will be focusing on each of the six steps of the end of life care pathway, which is underpinned by good communication skills to enable early identifi cation of people in your care who will be supported by the pathway:

Step 1–discussionsastheendoflifeapproaches

Step 2–assessment,careplanningandreview

Step 3–co-ordinationofcareStep 4–deliveryofhighqualitycareinanacutesetting

Step 5–careinthelastdaysoflifeStep 6–careafterdeath

This section will guide you through implementing systems to facilitate advance care planning and care co-ordination, ultimately delivering high quality care.

Importantly, your service improvement activities will support you in developing good communication systems both within your hospital teams and with partners working in the community and social care services.

Who to involve

MultidisciplinarywardteamSpecialistpalliativecareteamGPs,primaryandcommunitycarestaffAmbulanceservicesSocialcareservicesGeneralistandspecialistdiseasespecificstaff

SupportstaffOutofhoursservicesDischargeliaisonco-ordinatorsHospicesPharmaciesEquipmentprovidersServicemanagersCommissionersandclinicalcommissioninggroups

MortuarystaffBereavementservicesVolunteers.

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3

The route to success ‘how to’ guide

Section 7 of this guide contains

links to disease specifi c end of life

care resource guides on:

· Advanced kidney disease

· Dementia

· Heart failure

· Neurological disease

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Section 4

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Step 1 – discussions as the end of life approaches

Discussionsastheendoflifeapproaches

Assessment,careplanningandreview

Co-ordinationofcare

Deliveryofhighqualitycareinanacutesetting

Careinthelastdaysoflife

Careafterdeath

Challenge: One of the key barriers to delivering good end of life care is a failure to discuss things openly. Agreement is needed on when discussions should occur, who should initiate them and the skills and competences staff need for this role.

Outcome: People receiving care and their families and carers will be given the opportunity for open and honest discussions with staff that form the basis for advance care planning and meets individual choices wherever possible.

What you need to do1.Implementanidentificationmodelusing

recognisedgoodpracticetoensuregeneralistandspecialiststaffaretrainedtorecogniseadyingperson,forexampletheGoldStandardsFrameworkPrognosticIndicatorGuidance(seestep1resources)

2.Ensuregeneralistandspecialiststaffhavecapacityandarecompetentandconfidentincommunicationsskills,includingbreakingbadnewstoindividualsandtheirrelatives

3.Checkthatyourenvironmenthassafe,privateandappropriateplacesforhavingthesetypesofconversationswithindividualsandtheirrelatives

4.Withyourprimarycareandcommunitypartners,worktowardsestablishinganElectronicPalliativeCareCo-ordinationSystem(EPaCCS)andmechanismsforkeepingituptodate

5.FindoutifyourTrusthasarecognisedendoflifecarepathwayandwhetherstaffaretrainedinitsuse.

Practice example

North West End of Life Care ModelThe North West End of Life Care Clinical Pathway Group included staff who are involved in the care of people at the end of their life, including social workers, ambulance services, nurses, doctors, commissioners and faith groups.

The model of delivery advocated by the

clinical pathway group uses a whole systems approach for all adults with a life limiting disease, regardless of age and setting, moving from recognition of need for end of life care, to care after death.

In order to apply the model, staff across organisations are required to understand the needs and experiences of people and their carers. The pathway model identifies five key phases:

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ADVANCING DISEASE

INCREASING DECLINE

LAST DAYS OF LIFE

FIRST DAYS AFTER DEATH

BEREAVEMENT

1 YEAR6 MONTHS1 YEAR DEATH

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Figure 1: the North West end of life care model (NHS North West)

1.Advancing disease–thepersonisplacedonasupportivecareregisterinGPpractice/carehome.Thepersonisdiscussedatmonthlymultidisciplinarypractice/carehomemeetings(GoldStandardsFramework–GSF)

2.Increasing decline–DS1500eligibilityreviewofbenefits,PreferredPrioritiesforCare(PPC)noted,AdvanceCarePlan(ACP)inplaceandtriggerforcontinuinghealthcarefundingassessment

3.Last days of life–primarycareteam/carehomeinformcommunityandoutofhoursservicesaboutthepersonwhoshouldbeseenbyadoctor.Endoflifedrugsprescribedandobtained,andLiverpoolCarePathway(LCP)implemented

4.First days after death–promptverificationandcertificationofdeath,relativesbeinggiveninformationonwhattodoafteradeath(includingD49leaflet),howtoregisterthedeathandhowtocontactfuneraldirectors

5.Bereavement–accesstoappropriatesupportandbereavementservicesifrequired.

For further information please contact: Elaine OwenTel: 0151 201 4150 ext 6202Email: [email protected]

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Resources1. Electronic Palliative Care Co-ordination

System (see Section 3: plan)

2. AMBER Care Bundle (see Section 3: plan)

3. Gold Standards Framework Prognostic Indicator Guidance Clinical prognostic indicators are an attempt to estimate when people have advanced disease or are in the last year or so of life. This indicates to those in primary and secondary care that people may be in need of palliative/supportive care:www.goldstandardsframework.org.uk

4. Quick guide to identifying patients for supportive and palliative careDeveloped by Macmillan Cancer Support, NHS Camden and NHS Islington to help identify those needing end of life care services: www.endofl ifecareforadults.nhs.uk/publications/quick-guide-to-identifying-patients-for-supportive-and-palliative-care

5. Dying Matters information resourcesNumerous resources available to raise awareness and promote conversations about death, dying and bereavement: www.dyingmatters.org/overview/resources

A Party for Kath is an award-winning, fi ve-minute fi lm produced by the Dying Matters Coalition to demonstrate the benefi ts of greater openness around death and dying.

6. e-ELCA e-learning Free to access for health and social care staff and includes modules on initiating conversations and communications skills: www.e-lfh.org.uk/projects/e-elca/index.html

To view this podcast please visit:tinyurl.com/acute-rts-howtoguide

MEDIAMEDIACONTENTCONTENT

gold standards

9. Case study – development of a communication promptEast Lancashire Hospice and NHS Blackburn with Darwen’s communications prompt aims to assist professionals in having conversations and advance care planning discussions: www.endofl ifecareforadults.nhs.uk/case-studies/development-of-a-communication-prompt

10. Truth-telling and end of life careIn November 2011, Prof Rob George was interviewed by BBC Radio 4 on truth-telling and end of life care

7. Finding the Words A workbook and DVD developed following discussions with people who have life limiting conditions or have experienced the death of a loved one. The aim is to help staff with end of life conversations: www.endofl ifecareforadults.nhs.uk/publications/fi nding-the-words

8. Skills for Health Workforce Functional Analysis ToolSix workbooks which describe the workforce skills required to ensure people receive quality care in their last year of life: www.endofl ifecare-intelligence.org.uk/end_of_life_care_models/skills_for_health.aspx

This edit of Finding the Words focuses on the importance of initial conversations about end of life care and what it means to those who are dying and their families.

Professor Rob George, consultant in palliative care at Guy’s and St Thomas’ NHS Foundation Trust, talks to BBC Radio 4’s One to One show about the importance and implications of telling the truth when people are at the end of life.

11. National End of Life Care Programme support sheets

Support sheet 2 – Principles of good communication: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet2

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To listen to this interview please visit:tinyurl.com/acute-rts-howtoguide


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Step 2 – assessment, care planning and review



Co-ordinationofcare



Careafterdeath

Challenge: An early assessment of an individual’s needs and an understanding of their wishes is vital to establish their preferences and choices and to identify any areas of urgent need. Too often an individual’s needs and those of their family and carers are not adequately assessed.

Outcome: Each individual has a holistic assessment resulting in an agreed care plan with regular review of their needs and preferences. The needs of carers are assessed, acted on and reviewed regularly.

1.UtilisingtheAMBERCareBundlewilltriggeraholisticneedsassessmentandshouldprovidetheopportunityforinitiatingAdvanceCarePlanningconversationsaspartofanongoingprocess

2.Establishamechanismforcheckingwhetheranindividualhasanexistingpersonalsupportplanorsocialcareassessmentandwhetherajointassessmentmightbeappropriate

3.Agreeanappropriateholisticassessmenttoolortoolsforyourward/Trust

4.Establishasystemwherebyneedsofcarersareassessed,plannedforandactedupon

5.Workwithmultidisciplinaryteamsandsocialcareservicestoraiseawarenessandbroadenunderstandingoftheissuesrelatedtoendoflifecareinordertoensurethatbothhealthandsocialcareneedsaremet

6.Establishmechanismsforsharingresultsofassessmentsacrossteamsandagenciesthataremeaningfulbutdonotconflictwithconfidentiality,forexamplewithGPoutofhoursandambulanceservices

7.Ensurethatappropriatetraining,whichincludesAdvanceCarePlanning,takesplaceforallprofessionalsundertakingassessments.

What you need to do

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Key principles in advance care planning

Advance care planning (ACP), when done well, can achieve a number of important outcomes. It can help:

Improvepeople’swellbeingbyimprovingtheirunderstandingoftheirillness

Helppeopletobeinvolvedindecisionsabouttheircare

Enablecommunicationbetweenindividuals,familiesandclinicalteams

Ensurethatthecareandtreatmentpeoplereceiveisinformedbytheirowndecisionsandpreferenceswhentheybecomeincapableofdecisionmaking

Improvethehealthcaredecisionmakingprocessbyfacilitatingshareddecisionmakingbetweentheindividual,theirfamilyandclinicalteams.

One useful way of thinking about advance care planning is to consider it as a series of steps:

1.Assesstheperson’sunderstandingoftheirillness

2.Determinehowthepersonwantstomakedecisions

3.Determinewhattheperson’sexpectationsareabouttheirillnessandtreatment

4.Determineifthepersonhasanyimportantcarepreferencesorchoicesabouttheirtreatmentandcare,includingendoflifecare,thattheywanttobetakenintoaccountoncetheycan’tmakedecisionsforthemselves.

Helping staff to start advance care planning conversations is crucial but can be something that many fi nd challenging

Advance care planning conversations must be sensitively introduced and not imposed on an unwilling person. However, all individuals should be provided with the opportunity to participate if they wish.

• Get the environment right

• Consider the person’s emotional state and

cultural background

• Create an opening

• Ask the person who they would like to include

• Arrange for appropriate support services

• Be prepared with information and the

prognosis/options

• Don’t avoid it until the need for a decision is

urgent

• Allow time for refl ection.

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In addition, research-based suggestions include the following examples of better words to say:

Instead of: Better words to say:

There is nothing more we can do Wewanttofindouthowtohelpyou

Would you like us to do everything possible? Howwereyouhopingwecouldhelp?

Withdrawal of treatmentWithdrawalofventilation(orotherspecifictreatments)andmakingsureyouarecomfortable

Davison S et al. (2010) Advance care planning in patients with end-stage renal disease. In: Chambers EJ, Germain MK, Brown EA (eds) Supportive Care in the Renal Patient. Oxford: Oxford University Press (2nd Edition)Pantilat, S (2009) Communicating With Seriously Ill Patients - Better Words to Say. JAMA, 301(12): 1279-181


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Barnsley preferred priorities of care (PPC) pilot study

Practice example

NHS Barnsley launched the use of PPC in June 2010 and it was decided:

Toavoidusingabbreviationswithinanyprofessionaloruserdocumentationorinformation

TousearegistertorecorddetailsofthosewhohavecompletedaPPCdocument

ToattachastickerwithinformationprovidedonthePPCandanyadvancestatementsdecisionsdocumentationtolinkeachdocumenttotheother.

To introduce the PPC into practice, a project plan was formulated and agreed with the Barnsley end of life care strategy group. One of the key milestones of the implementation plan was to produce an audit report in July 20113 to review progress and present to relevant governance groups.

To support the introduction of PPC a signifi cant amount of training was undertaken, including a launch, study days, and community workshops. In addition a leafl et to support the use of the PPC was developed.

From June 2010 to June 2011 over 120 PPC documents were completed. Early evidence demonstrated that use of the PPC document benefi ted care home residents by establishing their preferred place of care and reducing unnecessary hospital admissions and the distress this causes.

The vast majority of people who had completed a PPC died in their expressed preferred place.

Preferred place of care met

Preferred place of care not met

Preferred place of care not stated

Figure 2: Highlights from those who have died, how many people died in theirpreferred place of care? (South West Yorkshire Partnership NHS Foundation Trust)

9%15%

76%

For further information please contact: Suzanne WiseTel: 01226 433558Email: [email protected]

3 www.endofl ifecareforadults.nhs.uk/case-studies/barnsley-preferred-priorities-for-care-pilot-study-audit

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Resources

1. AMBER Care Bundle (see Section 3: plan)

Dr Irene Carey and Dr Adrian Hopper, consultants at Guy’s and St Thomas’ NHS Foundation Trust, outline the AMBER Care Bundle and its benefi ts to both staff and those at the end of life.

2. Holistic common assessment Guidance for holistic common assessment of the supportive and palliative care needs: www.endofl ifecareforadults.nhs.uk/publications/holisticcommonassessment

See also: www.ncat.nhs.uk/our-work/living-with-beyond-cancer/holistic-needs-assessment

3. Capacity, care planning and advance care planning in life limiting illness This guide covers the importance of assessing capacity to make particular decisions about care and treatment, and of acting in the best interests of those lacking capacity: www.endofl ifecareforadults.nhs.uk/publications/pubacpguide

4. Thinking and planning ahead: learning from each other This training pack is designed to help people understand what advance care planning is, how to do it, and how to assist others: www.endofl ifecareforadults.nhs.uk/education-and-training/acp-for-volunteers

5. Advance decisions to refuse treatment A guide to help understand and implement the law relating to advance decisions to refuse treatment: www.endofl ifecareforadults.nhs.uk/publications/pubadrtguide




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6. Preferred Priorities for Care toolsIncluding documentation, an easy-read version, leafl et, poster and support sheet: www.endofl ifecareforadults.nhs.uk/tools/core-tools/preferredprioritiesforcare

7. e-ELCA e-learningFree to access for health and social care staff and includes modules on advance care planning and assessment, as well as a secondary care learning pathway: www.e-lfh.org.uk/projects/e-elca/index.html


• Support sheet 3 – Advance care planning: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet3

Jane Seymour, Sue Ryder Care professor in palliative and end of life studies at the University of Nottingham, talks through the principles of advance care planning and its importance in a hospital setting, providing practical top tips for getting started.

• Support sheet 4 – Advance decisions to refuse treatment: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet4

• Support sheet 6 – Dignity in end of life care: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet6

• Support sheet 12 – Mental Capacity Act (2005): www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet12

• Support sheet 13 – Decisions made in a person’s ‘Best Interests’: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet13

• Support sheet 16 – Holistic assessment: www.endofl ifecareforadults.nhs.uk/publications/support-sheet-16-holistic-assessment

• Support sheet 17 – Independent Mental Capacity Advocates (IMCAs): www.endofl ifecareforadults.nhs.uk/publications/support-sheet-17-independent-mental-capacity-advocatesTo view this podcast please visit:

tinyurl.com/acute-rts-howtoguide


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Step 3 – co-ordination of care



Co-ordinationofcare



Careafterdeath

Challenge: If a holistic assessment has been carried out and shared appropriately it should be possible to co-ordinate care for the individual, their family and carers. This should cover primary, community and acute health providers, the local hospice, transport services and social care. Electronic Palliative Care Co-ordination Systems (EPaCCS) provide the good practice model.

Outcome: Systems developed across local primary, community, secondary and social care as well as ambulance services will ensure co-ordinated care that is responsive to individuals and their carers’ needs and choices.

1.Ensurethereisamechanismtoidentifyacrossagencykeyworkerforallpeoplereceivingendoflifecare

2.Examinethesystemsandprocessesinplaceforcommunicatingacrossagenciesandresolvingblockages

3.Establishaframeworkforkeyagenciestoensurejointworking,includinggovernancearrangements

4.Establishasystemtoensurefasttrackdischargeplanningandaccesstocontinuingcare

5.Establishamechanismforreviewoffasttrackdischargeprocesses

6.Establishasystemtoensureaccesstospecialistpalliativecareservices24hoursaday

7.Ensurethedaytodayco-ordinationofcarefortheindividualwhilsttheyareinhospital.

What you need to do

Remember to consider the needs of carers.

Provide key worker contact details and

signpost them to information and support

services, such as:

• Healthtalkonline: www.healthtalkonline.

org/Dying_and_bereavement/Caring_for_

someone_with_a_terminal_illness

• Macmillan Support Services: be.macmillan.

org.uk/be/s-330-information-for-carers.aspx

• NHS Choices end of life care guide:

www.nhs.uk/Planners/end-of-life-care/

Pages/End-of-life-care.aspx

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Integrated health and social care community discharge planning in Essex

Practice example

Service manager Jill Catchpole and discharge facilitator Claire Walker set out the steps taken at NHS West Essex towards an integrated health and social care rapid discharge pathway.

Partner organisations in West Essex had been working to improve integrated management of end of life care, but it was recognised that more needed to be done, particularly in relation to the discharge from hospital of people with life-limiting conditions.

A discharge facilitator was appointed at the start of the project which ran from March to May 2011. The facilitator sought to raise awareness of end of life care and the preferred priorities for care, and encouraged referrals from both the hospital and the community. She worked with a range of agencies to support discharges from hospital of those who

wished to die elsewhere and in some cases accompanied the person home.

During the project 78 referrals were made of which 87% were appropriate – making an average of 7.5 referrals each week. Of these 64.6% were discharged within 48 hours of referral and 47% of these were within 24 hours. Nearly 90% were discharged to their preferred place of care.

The project has helped to dispel a number of myths and engender greater trust between the different sectors. It has also raised awareness of the role of social care at the end of life and the value of an integrated approach to service delivery.

Adopting a holistic and integrated approach can make a signifi cant difference to the quality and effi ciency of discharge for people at the end of life in a short space of time.

For further information please contact: Claire WalkerTel: 07989 204148Email: [email protected]




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7. The six steps to success programme for care homes This North West workshop style training programme enables care homes to implement the structured organisational change required to deliver the best end of life care, with a view to reducing inappropriate admissions to hospital: www.endofl ifecumbriaandlancashire.org.uk/six_steps.php

Resources1. NICE end of life care for adults quality

standard (2011)The NICE standard consists of 16 quality statements and measures to defi ne high quality end of life care: www.nice.org.uk/guidance/qualitystandards/endofl ifecare/home.jsp

2. Electronic Palliative Care Co-ordination Systems (see Section 3: plan)

4. End of life locality registers evaluation: fi nal report This Ipsos MORI report (2009) presents the fi ndings from an evaluation of eight locality register (now EPaCCS) pilot sites across England and includes case studies: www.endofl ifecareforadults.nhs.uk/publications/localities-registers-report

5. e-ELCA e-learningFree to access for health and social care staff and includes modules on integrated learning and a unifi ed DNACPR policy: www.e-lfh.org.uk/projects/e-elca/index.html

Dr Julian Abel, medical director at Weston Hospicecare, discusses Electronic Palliative Care Co-ordination Systems and how they benefi t people at the end of life in hospital. Practical steps and challenges for implementation are also identifi ed.

6. NHS continuing healthcareMore information about continuing healthcare is available on the NHS Choices website, including frequently asked questions: www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/continuing-care-faq.aspx

3. National end of life care information standard This national standard sets out the minimum core content required to be recorded in Electronic Palliative Care Co-ordination Systems: www.endofl ifecareforadults.nhs.uk/strategy/strategy/coordination-of-care/end-of-life-care-information-standard



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8. Unifi ed Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) principlesSeveral Strategic Health Authorities across the country are working towards implementing DNACPR policies: www.endofl ifecareforadults.nhs.uk/case-studies/south-east-coast-dnacprprinciples and www.southcentral.nhs.uk/what-we-are-doing/end-of-life-care/do-not-attempt-cardio-pulmonary-resuscitation/

NHS South of England has produced an extensive DVD on the subject of DNACPR. This edit focuses particularly on achieving best practice through the use of a universal DNACPR form.

12. National End of Life Care Programme support sheetsSupport sheet 1 – Directory of key contacts: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet1


10. Lincolnshire discharge liaison nurse The Marie Curie Cancer Care delivering

choice programme in Lincolnshire developed the role of the discharge liaison nurse and an independent evaluation found that 61% of patients referred to the service were transferred to their preferred place of care. Download the Lincolnshire evaluation reports: deliveringchoice.mariecurie.org.uk/independent_evaluation/

11. Safeguarding adults practitioners guide

Developed by Birmingham Safeguarding Adults Board, this guide promotes every adult’s right to live in safety, be free from abuse and live an independent lifestyle free from discrimination: www.birmingham.gov.uk/safeguardingadults

9. Blackpool rapid discharge pathway Blackpool Teaching Hospitals’ rapid

discharge pathway for people at end of life aims to facilitate a safe, smooth and seamless transition of care from hospital to community: www.endofl ifecareforadults.nhs.uk/case-studies/blackpool-rapid-discharge-pathway



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Step 4 – delivery of high quality care in an acute setting



Co-ordinationofcare



Careafterdeath

Challenge: Individuals and their families and carers may need access to a complex combination of services. They should expect the same high quality of care regardless of the setting. Their care should be informed by senior clinical assessment and decision making.Outcome: Each individual will have access to tailored information, specialist palliative care advice 24/7 and access to spiritual care within a dignifi ed environment, wherever that may be.

1.Ensureafullycomplementedspecialisthospitalpalliativecareteamispresent,inlinewithNICEguidance

2.Gatherinformationonhowyouaredoingfromcomplaints,compliments,suggestionsandsignificantevents

3.Whenthingsgowrongidentifywhathappenedandsetupmechanismsforremedialaction

4.Workthroughblockagesacrossorganisationalboundariesandsystems

5.Identifywhathasworkedwellandsetupmechanismstoreplicateforserviceimprovement

6.Ensureallstaffaretrainedandareconfidentandcompetentinendoflifecare

coreprinciplesandvalues,includingafterdeathcare

7.Ensureappropriatestaffhavecommunicationskills,assessmentandcareplanning,symptommanagement,andcomfortandwellbeingtraining

8.Examineyourwardenvironmenttoensureitissupportiveofdignityandrespectforindividualsandcarers.Ensurefeedback,commentsandcomplaintsareactedupontoimproveyourwardenvironment.

What you need to do

Consider the individual’s physical,

cultural and spiritual needs,

for example those with learning

disabilities or dementia.

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Analysing hospital complaints about end of life care

Practice example

In 2010 the National End of Life Care Programme undertook a small scale exercise looking at the number of complaints about end of life care received by four hospital Trusts over a six month period.

Working with Trusts from the North East and Midlands, results showed that between 3-6% of all complaints received were specifically about end of life care.

The emerging complaint themes leaned strongly towards communication issues and appropriate clinical care, as interpreted by the complainant. The analysis report suggests it may be feasible to consider that improvements in levels of communication and understanding may also result in improvement of what is considered to be good end of life care.

The report highlights the Solihull Bereavement Pathway Project, which offers one suggestion as a way of reducing complaints by offering volunteer bereavement support and guidance following a death in hospital.

This exercise provided some helpful information to support hospitals in considering end of life care complaints reporting. While it does not provide evidenced based large scale study findings, it may help you to consider the current processes for review within your hospital.

For further information please visit: www.endoflifecareforadults.nhs.uk/publications/an-analysis-of-the-numbers-of-hospital-complaints-relating-to-end-of-life-care-over-a-six-month-period


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Resources1. Route to success in end of life care:

achieving quality environments for care at end of life This guide identifi es a number of key environmental principles to help improve privacy and dignity for individuals and their families at the end of life: www.endofl ifecareforadults.nhs.uk/publications/routes-to-success-achieving-quality-environments-for-care-at-end-of-life

2. Nottingham information prescriptionsNHS Nottingham City piloted a scheme of information prescriptions aimed at giving people approaching the end of their life more control over the management of their care: www.endofl ifecareforadults.nhs.uk/case-studies/information-prescription-for-end-of-life-care-in-nottingham-city-pct and www.nottspct.nhs.uk/my-nhs-services/end-of-life-care.html

3. NHS Choices end of life care guideThis online guide is for people approaching the end of life and their carers. It explains what to expect from end of life care and provides information on rights and choices: www.nhs.uk/Planners/end-of-life-care/Pages/End-of-life-care.aspx

environmental principles to

4. e-ELCA e-learningFree to access for health and social care staff and includes modules on symptom management and fast track discharge: www.e-lfh.org.uk/projects/e-elca/index.html

5. Royal College of Nursing’s dignity resourceThis resource aims to support everyone working in the nursing team in the delivery of dignifi ed care: www.rcn.org.uk/development/practice/dignity

6. Social Care Institute for Excellence (SCIE) – stand-up for dignityThis online resource features a wealth of information about dignity in health and social care: www.scie.org.uk/publications/guides/guide15/standupfordignity/index.asp

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7. The Dignity in Care networkHosted by SCIE, the network consists of dignity champions across the country, as well as the National Dignity Council: www.dignityincare.org.uk/

8. The route to success in end of life care – achieving quality for people with learning disabilitiesThis practical guide supports anyone caring for people with learning disabilities to achieve high quality end of life care: www.endoflifecareforadults.nhs.uk/publications/route-to-success-people-with-learning-disabilities


• Support sheet 1 – Directory of key contacts: www.endoflifecareforadults.nhs.uk/publications/rtssupportsheet1

• Support sheet 6 – Dignity in end of life care: www.endoflifecareforadults.nhs.uk/publications/rtssupportsheet6


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Step 5 – care in the last days of life



Co-ordinationofcare



Careafterdeath

Challenge: The point comes when a person enters the dying phase (the last hours or days). It is vital that those caring for them recognise that the person is dying and deliver the appropriate care. How someone dies remains a lasting memory for families and carers as well as staff.

Outcome: The person dying can be confi dent that their wishes, preferences and choices will be reviewed and acted upon and that their families and carers will be supported throughout.

1.Ensuregeneralistandspecialiststaffaretrainedtorecogniseadyingperson

2.DevelopTrustguidelinesfortheuseoftheLiverpoolCarePathway,includingdiagnosingdying

3.IdentifyrelevantstaffandensuretheyaretrainedintheuseofprognosticindicatorsandtheLiverpoolCarePathway,andskilledincommunicatingtheimplicationstoindividualsandtheircarersasappropriate

4.Establishamechanismtoinitiatereviewofadvancecareplanningdocumentationatregular

intervalssothataperson’schoicescanbetakenintoaccountandacteduponwhereverpossible,forexamplePreferredPrioritiesforCare

5.Establishasystemforrapiddischargeidentifiedthroughadvancecareplanningorthroughdiscussionwiththeindividualandtheircarerstoenablethepersontodieinaplaceoftheirchoice.

6.Re-examineyourwardenvironmenttoensureitissupportiveofdignityandrespectforindividualsandcarersthroughouteverystageoftheendoflifecarepathway.

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The National Care of the Dying Audit – Hospitals (NCDAH)

Practice example

NCDAH is undertaken by the Marie Curie Palliative Care Institute Liverpool in collaboration with the Royal College of Physicians. Specifically, it examines care delivery in the last days or hours of life for people who have died in acute hospital settings supported by the Liverpool Care Pathway for the Dying Patient.

In June 2011, the NCDAH was incorporated within the Department of Health Quality Accounts, which offers an important driver for increased participation.

The audit consists of two major components:

Organisational Data–pertinentdatafromparticipatinghospitalsarecollectedtoprovideimportantcontextualinformation.Suchinformationincludesthenumberofdeaths,hospitalsize(wards/beds),educationandtrainingprovisionandstaffingtosupportendoflifecare.

Patient Level Data–informationcodedatthepointofcaredeliveryisextractedfromaconsecutivesampleofcompletedLiverpoolCarePathwaysusedwithinparticipatinghospitalsduringthethreemonthdatacollectionperiod.

The data is analysed descriptively to provide an overall benchmark against each of the goals for all individuals in the sample, compared to performance within each hospital.

A series of regional workshops are held to enable discussion of the results, sharing of understanding and action planning for improving care of the dying in individual organisations.

The results of the third round audit (2011/2012) were published on 1st December 2011. The audit included clinical data from over 7,000 people (from 127 NHS Trusts) on the Liverpool Care Pathway.

Findings highlighted that hospitals are reaching high standards of care in a wide variety of areas. However, while care was of high quality overall concerns remained regarding education and training, and the limited availability of support services from specialist palliative care teams.

For further information please visit:

www.mcpcil.org.uk/liverpool-care-pathway/national-care-of-dying-audit.htm


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Resources1. The Liverpool Care Pathway for the

Dying Patient (see Section 3: plan)

Deborah Murphy, national lead nurse for the Liverpool Care Pathway (LCP) at the Marie Curie Palliative Care Institute in Liverpool, provides an overview of the LCP and its benefi ts to people at the end of life in hospital.

This edit of Finding the Words focuses on the care received by people in hospital during the last days of life, as well as the long-lasting impact that this can have on carers and relatives.2. e-ELCA e-learning

Free to access for health and social care staff and includes modules on symptom management and diagnosing dying: www.e-lfh.org.uk/projects/e-elca/index.html

3. Finding the WordsA workbook and DVD developed following discussions with people who have life limiting conditions or have experienced the death of a loved one: www.endofl ifecareforadults.nhs.uk/publications/fi nding-the-words


• Support sheet 8 – The dying process: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet8

• Support sheet 14 – NHS continuing care fast track pathway tool: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet14





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Section 4

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Step 6 – care after death



Co-ordinationofcare



Careafterdeath

Challenge: Good end of life care does not stop at the point of death. When someone dies all staff need to be familiar with good practice for the care and viewing of the body as well as being responsive to family wishes. The support and care provided to carers and relatives will help them cope with their loss and are essential to a ‘good death’.

Outcome: A system is in place that ensures the emotional and practical needs of families and carers are supported after death. Verifi cation and certifi cation of death is timely, including notifi cation to the coroner where necessary as well as appropriate and continuous carer support throughout bereavement.

1.DevelopguidelinesforyourTrust’sviewingarrangementsandfacilitiestoensuretheyaresensitivetodifferentneeds,culturesandfaiths

2.Ensurecommunicationsskillstrainingisinplaceandundertakenforallstafflikelytobeincontactwithcarersimmediatelypostdeath

3.Establishasystemwherebycarers’postbereavementneedsareassessedandrecordedaspartofthecarersassessmentwhilsttheirlovedoneisstillalive

4.Ensureallstafflikelytobeincontactwithbereavedpeoplehave

appropriatetrainingtoatleastsignposttospiritual,emotional,practicalandfinancialsupport

5.Identifyandcommunicatetheplaceandtheprocessforcollectionofofficialdocumentationandthedeceasedperson’spossessions

6.Establishasystemtosendrelativesabereavementquestionnaire,suchastheNationalBereavementSurvey(VOICES),andtoprovidefrontlinestaffwithfeedbackinordertosupportcontinuingimprovement.

What you need to do

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Redesign of bereavement services and mortuary viewing area

Practice example

Staff at Salisbury District Hospital used to refer to the journey relatives had to make between the bereavement office and the mortuary viewing facilities as the ‘walk of shame’. It involved a long, gloomy walk along a basement corridor populated by clinical waste bins, with the ever-present possibility of bumping into an undertaker.

In 2008 the Trust teamed up with The King’s Fund’s Environments for Care at End of Life programme. The first plan was a fairly modest one to redecorate and introduce new furniture, artwork and extra facilities.

But once the Salisbury team started discussing the possibilities in more detail, their thinking became more ambitious. They realised this was a chance not only to improve the environment but to integrate bereavement and mortuary services within one building and raise the profile of care after death within the Trust.

With a £30,000 grant from the Department of Health, via The King’s Fund, topped up by £10,000 from the Trust, the team managed to secure an extra £100,000 from local hospices, charities and other organisations.

Work on the major revamp of the mortuary building was completed in October 2009. The result is a new purpose-built structure that incorporates the bereavement office, a waiting area and the viewing room under one roof.

A light, airy reception area together with dedicated parking makes the building both

welcoming and private. And the other rooms, decorated with original artwork and textiles and simply furnished, give a calm, non-institutional feel.

The changes have transformed the experience of many bereaved relatives and friends. They can attend the bereavement office in pleasant, private surroundings, collect the death certificate and their loved one’s belongings and then proceed to the viewing suite if they wish.

For further information please contact: Sam GossEmail: [email protected]


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Resources 1. Guidance for staff responsible for care

after death This publication emphasises that the care extends well beyond physically preparing the body for transfer. It also covers privacy and dignity, spiritual and cultural wishes, organ and tissue donation, health and safety and death certifi cation procedures: www.endofl ifecareforadults.nhs.uk/publications/guidance-for-staff-responsible-for-care-after-death

Jo Wilson, Macmillan consultant nurse practitioner at Heatherwood and Wexham Park Hospitals, talks about care after death guidance and the steps needed to implement it successfully in hospitals.

2. When a person dies: guidance for professionals on developing bereavement services This covers the principles of bereavement services and guidance on workforce education and the commissioning and quality outcomes of bereavement care: www.endofl ifecareforadults.nhs.uk/publications/when-a-person-dies

3. National Bereavement Survey (VOICES)The National Bereavement Survey aims to capture the Views Of Informal Carers and an Evaluation of Services (VOICES). It is a postal questionnaire to measure satisfaction with services received in the year before death: www.ons.gov.uk/ons/about-ons/surveys/a-z-of-surveys/national-bereavement-survey--voices-/index.html



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4. Improving Environments for Care at the End of LifeIn 2006 a pilot programme was launched by The King’s Fund across eight sites to improve environments for care at end of life: www.kingsfund.org.uk/publications/care_at_end_of_life.html

This edit of a National End of Life Care Programme / King’s Fund DVD looks at the importance of environments of care at the end of life and gives examples of what can be achieved.

5. Route to success in end of life care: achieving quality environments for care at end of life This guide identifi es a number of key environmental principles to help improve privacy and dignity for individuals and their families at the end of life: www.endofl ifecareforadults.nhs.uk/publications/routes-to-success-achieving-quality-environments-for-care-at-end-of-life

quality environments for

6. e-ELCA e-learningFree to access for health and social care staff and includes modules on care after death, bereavement and spirituality: www.e-lfh.org.uk/projects/e-elca/index.html


• Support sheet 9 – What to do when someone dies: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet9

• Support sheet 15 – Enhancing the healing environment: www.endofl ifecareforadults.nhs.uk/publications/rtssupportsheet15




www.endoflifecareforadults.nhs.uk

Published by the National End of Life Care Programme

ISBN: 978 1 908874 04 7Programme Ref: PB0005 A 02 12Publication date: Feb 2012Review date: Feb 2014

©NationalEndofLifeCareProgramme(2012)All rights reserved. For full Terms of Use please visit www.endoflifecareforadults.nhs.uk/terms-of-use

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Route to success - treat

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