Route to success - treat

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This 'how to' guide builds upon the overarching framework set out in The route to success in end of life care - achieving quality in acute hospitals, published in 2010. The route to success highlighted best practice models developed by acute hospital Trusts, providing a comprehensive framework to enable hospitals to deliver high quality care to people at the end of life.
This 'how to' guide aims to help clinicians, managers and directors implement The route to success more effectively, drawing on valuable learning from the NHS Institute for Innovation and Improvement's Productive Ward: Releasing time to care™ series.

This guide contains individual sections that can be worked on in any given order, dependent upon the individual hospital and its current end of life care provisions. These can be downloaded below:

Introduction
Section 1: prepare
Section 2: assess and diagnose
Section 3: plan
Section 4: treat
Section 5: evaluate
Section 6: sustain
Section 7: further resources
Cover
It places emphasis on existing 'enabling' tools and models, which support and follow a person-centred pathway. These are Advance Care Planning, Electronic Palliative Care Co-ordination Systems (EPaCCS), AMBER Care Bundle, Rapid Discharge Home to Die Pathway, and the Liverpool Care Pathway.

Publication by the National End of Life Programme which became part of NHS Improving Quality in May 2013

Published in: Health & Medicine
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Route to success - treat

  1. 1. Section 4 The route to success Treat
  2. 2. 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 identification of people in your care who will be supported by the pathway: Step 1 – discussions as the end of life approaches Step 2 – assessment, care planning and review Step 3 – co-ordination of care Step 4 – delivery of high quality care in an acute setting Step 5 – care in the last days of life Step 6 – care after death Who to involve Multidisciplinary ward team Specialist palliative care team GPs, primary and community care staff Ambulance services Social care services Generalist and specialist disease specific staff Support staff Out of hours services Discharge liaison co-ordinators Hospices Pharmacies Equipment providers Service managers Commissioners and clinical commissioning groups Mortuary staff Bereavement services Volunteers. 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. 2
  3. 3. The route to success ‘how to’ guide TOP TIP ins is guide conta Section 7 of th specific end of life links to disease es on: uid care resource g idney disease · Advanced k · Dementia · Heart failure disease · Neurological 3
  4. 4. Section 4 Step 1 – discussions as the end of life approaches Discussions as the end of life approaches Assessment, care planning and review Co-ordination of care 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. 4 Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do 1. Implement an identification model using recognised good practice to ensure generalist and specialist staff are trained to recognise a dying person, for example the Gold Standards Framework Prognostic Indicator Guidance (see step 1 resources) 2. Ensure generalist and specialist staff have capacity and are competent and confident in communications skills, including breaking bad news to individuals and their relatives 3. Check that your environment has safe, private and appropriate places for having these types of conversations with individuals and their relatives 4. With your primary care and community partners, work towards establishing an Electronic Palliative Care Co-ordination System (EPaCCS) and mechanisms for keeping it up to date 5. Find out if your Trust has a recognised end of life care pathway and whether staff are trained in its use.
  5. 5. The route to success ‘how to’ guide Practice example 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: North West End of Life Care Model The 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 1 ADVANCING DISEASE 1 YEAR 2 3 INCREASING DECLINE LAST DAYS OF LIFE 6 MONTHS 4 5 FIRST DAYS AFTER DEATH DEATH BEREAVEMENT 1 YEAR Figure 1: the North West end of life care model (NHS North West) 1. Advancing disease – the person is placed on a supportive care register in GP practice/care home. The person is discussed at monthly multidisciplinary practice/care home meetings (Gold Standards Framework – GSF) 2. Increasing decline – DS1500 eligibility review of benefits, Preferred Priorities for Care (PPC) noted, Advance Care Plan (ACP) in place and trigger for continuing healthcare funding assessment 3. Last days of life – primary care team/care home inform community and out of hours services about the person who should be seen by a doctor. End of life drugs prescribed and obtained, and Liverpool Care Pathway (LCP) implemented 4. First days after death – prompt verification and certification of death, relatives being given information on what to do after a death (including D49 leaflet), how to register the death For further information please contact: Elaine Owen and how to contact funeral directors Tel: 0151 201 4150 ext 6202 5. Bereavement – access to appropriate support Email: elaine.owen@mccn.nhs.uk and bereavement services if required. 5
  6. 6. Section 4 Resources 1. 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 gold standards 4. Quick guide to identifying patients for supportive and palliative care Developed by Macmillan Cancer Support, NHS Camden and NHS Islington to help identify those needing end of life care services: www.endoflifecareforadults. nhs.uk/publications/quick-guide-toidentifying-patients-for-supportiveand-palliative-care 6 5. Dying Matters information resources Numerous resources available to raise awareness and promote conversations about death, dying and bereavement: www.dyingmatters.org/overview/ resources MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide A Party for Kath is an award-winning, fiveminute film produced by the Dying Matters Coalition to demonstrate the benefits 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
  7. 7. The route to success ‘how to’ guide 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.endoflifecareforadults.nhs.uk/ publications/finding-the-words MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 9. Case study – development of a communication prompt East Lancashire Hospice and NHS Blackburn with Darwen’s communications prompt aims to assist professionals in having conversations and advance care planning discussions: www.endoflifecareforadults.nhs. uk/case-studies/development-of-acommunication-prompt 10. Truth-telling and end of life care In November 2011, Prof Rob George was interviewed by BBC Radio 4 on truth-telling and end of life care MEDIA CONTENT To listen to this interview please visit: tinyurl.com/acute-rts-howtoguide 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. 8. Skills for Health Workforce Functional Analysis Tool Six workbooks which describe the workforce skills required to ensure people receive quality care in their last year of life: www.endoflifecare-intelligence.org. uk/end_of_life_care_models/skills_for_ health.aspx 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.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet2 7
  8. 8. Section 4 Step 2 – assessment, care planning and review Discussions as the end of life approaches Assessment, care planning and review 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. 8 Co-ordination of care Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do 5. Work with multidisciplinary 1. Utilising the AMBER Care teams and social care Bundle will trigger a services to raise awareness holistic needs assessment and broaden understanding and should provide the of the issues related to opportunity for initiating end of life care in order to Advance Care Planning ensure that both health and conversations as part of an social care needs are met ongoing process 6. Establish mechanisms 2. Establish a mechanism for sharing results of for checking whether an assessments across teams individual has an existing and agencies that are personal support plan or meaningful but do not social care assessment and conflict with confidentiality, whether a joint assessment for example with GP out might be appropriate of hours and ambulance 3. Agree an appropriate services holistic assessment tool or 7. Ensure that appropriate tools for your ward / Trust training, which includes 4. Establish a system whereby needs of carers are assessed, Advance Care Planning, takes place for all planned for and acted upon professionals undertaking assessments.
  9. 9. The route to success ‘how to’ guide 9
  10. 10. Section 4 Key principles in advance care planning Advance care planning (ACP), when done well, can achieve a number of important outcomes. It can help: Improve people’s wellbeing by improving their understanding of their illness Help people to be involved in decisions about their care Enable communication between individuals, families and clinical teams Ensure that the care and treatment people receive is informed by their own decisions and preferences when they become incapable of decision making Improve the healthcare decision making process by facilitating shared decision making between the individual, their family and clinical teams. TOP TIP ronment right • Get the envi rson’s emotional state and pe • Consider the ound cultural backgr an opening like to include • Create who they would rvices Ask the person t se • ppor appropriate su • Arrange for h information and the wit • Be prepared ns prognosis/optio til the need for a decision is it un • Don’t avoid urgent r reflection. • Allow time fo 10 One useful way of thinking about advance care planning is to consider it as a series of steps: 1. Assess the person’s understanding of their illness 2. Determine how the person wants to make decisions 3. Determine what the person’s expectations are about their illness and treatment 4. Determine if the person has any important care preferences or choices about their treatment and care, including end of life care, that they want to be taken into account once they can’t make decisions for themselves. Helping staff to start advance care planning conversations is crucial but can be something that many find 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.
  11. 11. The route to success ‘how to’ guide 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 We want to find out how to help you Would you like us to do everything possible? How were you hoping we could help? Withdrawal of treatment Withdrawal of ventilation (or other specific treatments) and making sure you are comfortable 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 11
  12. 12. Section 4 Practice example Barnsley preferred priorities of care (PPC) pilot study NHS Barnsley launched the use of PPC in June 2010 and it was decided: To avoid using abbreviations within any professional or user documentation or information To use a register to record details of those who have completed a PPC document To attach a sticker with information provided on the PPC and any advance statements decisions documentation to link each document to the other. 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 significant amount of training was undertaken, including a launch, study days, and community workshops. In addition a leaflet to support the use of the PPC was developed. 3 12 From June 2010 to June 2011 over 120 PPC documents were completed. Early evidence demonstrated that use of the PPC document benefited 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. 9% 15% 76% 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 their preferred place of care? (South West Yorkshire Partnership NHS Foundation Trust) For further information please contact: Suzanne Wise Tel: 01226 433558 Email: suzannewise@nhs.net www.endoflifecareforadults.nhs.uk/case-studies/barnsley-preferred-priorities-for-care-pilot-study-audit
  13. 13. The route to success ‘how to’ guide Resources 1. AMBER Care Bundle (see Section 3: plan) MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide Dr Irene Carey and Dr Adrian Hopper, consultants at Guy’s and St Thomas’ NHS Foundation Trust, outline the AMBER Care Bundle and its benefits 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.endoflifecareforadults. nhs.uk/publications/ holisticcommonassessment 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.endoflifecareforadults. 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.endoflifecareforadults.nhs. uk/education-and-training/acp-forvolunteers 5. Advance decisions to refuse treatment A guide to help understand and implement the law relating to advance decisions to refuse treatment: www.endoflifecareforadults.nhs.uk/ publications/pubadrtguide See also: www.ncat.nhs.uk/our-work/ living-with-beyond-cancer/holisticneeds-assessment 13
  14. 14. Section 4 6. Preferred Priorities for Care tools Including documentation, an easy-read version, leaflet, poster and support sheet: www.endoflifecareforadults. nhs.uk/tools/core-tools/ preferredprioritiesforcare 7. e-ELCA e-learning Free 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 8. National End of Life Care Programme support sheets • Support sheet 3 – Advance care planning: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet3 MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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. 14 • Support sheet 4 – Advance decisions to refuse treatment: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet4 • Support sheet 6 – Dignity in end of life care: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet6 • Support sheet 12 – Mental Capacity Act (2005): www.endoflifecareforadults. nhs.uk/publications/rtssupportsheet12 • Support sheet 13 – Decisions made in a person’s ‘Best Interests’: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet13 • Support sheet 16 – Holistic assessment: www.endoflifecareforadults.nhs.uk/ publications/support-sheet-16-holisticassessment • Support sheet 17 – Independent Mental Capacity Advocates (IMCAs): www.endoflifecareforadults.nhs. uk/publications/support-sheet17-independent-mental-capacityadvocates
  15. 15. The route to success ‘how to’ guide 15
  16. 16. Section 4 Step 3 – co-ordination of care Discussions as the end of life approaches Assessment, care planning and review 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 coordinated care that is responsive to individuals and their carers’ needs and choices. 16 Co-ordination of care Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do 5. Establish a mechanism 1. Ensure there is a for review of fast track mechanism to identify a discharge processes cross agency key worker for all people receiving 6. Establish a system to end of life care ensure access to specialist palliative care services 24 2. Examine the systems and hours a day processes in place for communicating across 7. Ensure the day to day coagencies and resolving ordination of care for the blockages individual whilst they are in hospital. 3. Establish a framework for key agencies to ensure joint working, carers. including der the needs of d ember to consi Rem tails an governance orker contact de Provide key w information and support arrangements to signpost them as: 4. Establish a system services, such htalkonline. to ensure fast track line: www.healt • Healthtalkon d_bereavement/Caring_for_ discharge planning org/Dying_an terminal_illness a_ and access to someone_with_ rt Services: be.macmillan. po Macmillan Sup information-for-carers.aspx • continuing care s-330- TOP TIP ide: org.uk/be/ d of life care gu NHS Choices en ners/end-of-life-care/ • an www.nhs.uk/Pl e-care.aspx -lif Pages/End-of
  17. 17. The route to success ‘how to’ guide Practice example Integrated health and social care community discharge planning in Essex MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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 significant difference to the quality and efficiency of discharge for people at the end of life in a short space of time. For further information please contact: Claire Walker Tel: 07989 204148 Email: claire.walker19@nhs.net 17
  18. 18. Section 4 Resources 1. NICE end of life care for adults quality standard (2011) The NICE standard consists of 16 quality statements and measures to define high quality end of life care: www.nice. org.uk/guidance/qualitystandards/ endoflifecare/home.jsp 2. Electronic Palliative Care Co-ordination Systems (see Section 3: plan) MEDIA CONTENT 4. End of life locality registers evaluation: final report This Ipsos MORI report (2009) presents the findings from an evaluation of eight locality register (now EPaCCS) pilot sites across England and includes case studies: www.endoflifecareforadults.nhs.uk/ publications/localities-registers-report 5. e-ELCA e-learning Free to access for health and social care staff and includes modules on integrated learning and a unified DNACPR policy: www.e-lfh.org.uk/projects/e-elca/index. html To view this podcast please visit: tinyurl.com/acute-rts-howtoguide Dr Julian Abel, medical director at Weston Hospicecare, discusses Electronic Palliative Care Coordination Systems and how they benefit people at the end of life in hospital. Practical steps and challenges for implementation are also identified. 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.endoflifecareforadults. nhs.uk/strategy/strategy/coordinationof-care/end-of-life-care-informationstandard 18 6. NHS continuing healthcare More 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 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.endoflifecumbriaandlancashire. org.uk/six_steps.php
  19. 19. The route to success ‘how to’ guide 8. Unified Do Not Attempt CardioPulmonary Resuscitation (DNACPR) principles Several Strategic Health Authorities across the country are working towards implementing DNACPR policies: www.endoflifecareforadults. nhs.uk/case-studies/south-eastcoast-dnacprprinciples and www. southcentral.nhs.uk/what-we-aredoing/end-of-life-care/do-not-attemptcardio-pulmonary-resuscitation/ MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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 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. 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. endoflifecareforadults.nhs.uk/casestudies/blackpool-rapid-dischargepathway 12. National End of Life Care Programme support sheets Support sheet 1 – Directory of key contacts: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet1 19
  20. 20. Section 4 Step 4 – delivery of high quality care in an acute setting Discussions as the end of life approaches Assessment, care planning and review 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 dignified environment, wherever that may be. 20 Co-ordination of care Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do core principles and values, 1. Ensure a fully complemented including after death care specialist hospital palliative care team is present, in line 7. Ensure appropriate staff with NICE guidance have communication skills, assessment and 2. Gather information on care planning, symptom how you are doing from management, and comfort complaints, compliments, and wellbeing training suggestions and significant events 8. Examine your ward environment to ensure it is 3. When things go wrong supportive of dignity and identify what happened respect for individuals and and set up mechanisms for carers. Ensure feedback, remedial action comments and complaints 4. Work through blockages are acted upon to improve across organisational your ward environment. boundaries and systems 5. Identify what has worked well and set up mechanisms to replicate for service improvement sical, 6. Ensure all staff are trained dividual’s phy Consider the in and are confident and iritual needs, cultural and sp g competent in end of life care e with learnin TOP TIP os for example th dementia. disabilities or
  21. 21. The route to success ‘how to’ guide Practice example Analysing hospital complaints about end of life care 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-thenumbers-of-hospital-complaintsrelating-to-end-of-life-care-over-a-sixmonth-period 21
  22. 22. Section 4 Resources 1. Route to success in end of life care: achieving quality environments for care at end of life This guide identifies a number of key environmental principles to help improve privacy and dignity for individuals and their families at the end of life: www. endoflifecareforadults. nhs.uk/publications/routes-to-successachieving-quality-environments-forcare-at-end-of-life 2. Nottingham information prescriptions NHS 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.endoflifecareforadults. nhs.uk/case-studies/informationprescription-for-end-of-life-carein-nottingham-city-pct and www. nottspct.nhs.uk/my-nhs-services/end-oflife-care.html 3. NHS Choices end of life care guide This 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 22 4. e-ELCA e-learning Free 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 resource This resource aims to support everyone working in the nursing team in the delivery of dignified care: www.rcn.org.uk/development/practice/ dignity 6. Social Care Institute for Excellence (SCIE) – stand-up for dignity This online resource features a wealth of information about dignity in health and social care: www.scie.org.uk/ publications/guides/guide15/ standupfordignity/index.asp
  23. 23. The route to success ‘how to’ guide 7. The Dignity in Care network Hosted 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 disabilities This 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-peoplewith-learning-disabilities 9. National End of Life Care Programme support sheets • 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 23
  24. 24. Section 4 Step 5 – care in the last days of life Discussions as the end of life approaches Assessment, care planning and review 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 confident that their wishes, preferences and choices will be reviewed and acted upon and that their families and carers will be supported throughout. 24 Co-ordination of care Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do intervals so that a person’s 1. Ensure generalist and choices can be taken into specialist staff are trained to account and acted upon recognise a dying person wherever possible, for 2. Develop Trust guidelines example Preferred Priorities for the use of the Liverpool for Care Care Pathway, including 5. Establish a system for rapid diagnosing dying discharge identified through 3. Identify relevant staff and advance care planning or ensure they are trained through discussion with the in the use of prognostic individual and their carers to indicators and the Liverpool enable the person to die in Care Pathway, and skilled a place of their choice. in communicating the implications to individuals 6. Re-examine your ward environment to ensure it is and their carers as supportive of dignity and appropriate respect for individuals and 4. Establish a mechanism carers throughout every to initiate review of stage of the end of life care advance care planning pathway. documentation at regular
  25. 25. The route to success ‘how to’ guide Practice example The National Care of the Dying Audit – Hospitals (NCDAH) 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 – pertinent data from participating hospitals are collected to provide important contextual information. Such information includes the number of deaths, hospital size (wards/beds), education and training provision and staffing to support end of life care. Patient Level Data – information coded at the point of care delivery is extracted from a consecutive sample of completed Liverpool Care Pathways used within participating hospitals during the three month data collection period. 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-carepathway/national-care-of-dying-audit. htm 25
  26. 26. Section 4 Resources 1. The Liverpool Care Pathway for the Dying Patient (see Section 3: plan) MEDIA CONTENT 3. 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: www.endoflifecareforadults.nhs.uk/ publications/finding-the-words To view this podcast please visit: tinyurl.com/acute-rts-howtoguide MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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 benefits to people at the end of life in hospital. 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 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. 4. National End of Life Care Programme support sheets • Support sheet 8 – The dying process: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet8 • Support sheet 14 – NHS continuing care fast track pathway tool: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet14 26
  27. 27. The route to success ‘how to’ guide 27
  28. 28. Section 4 Step 6 – care after death Discussions as the end of life approaches Assessment, care planning and review 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. Verification and certification of death is timely, including notification to the coroner where necessary as well as appropriate and continuous carer support throughout bereavement. 28 Co-ordination of care Delivery of high quality care in an acute setting Care in the last days of life Care after death What you need to do appropriate training to at 1. Develop guidelines for least signpost to spiritual, your Trust’s viewing emotional, practical and arrangements and facilities to ensure they are sensitive financial support to different needs, cultures 5. Identify and communicate and faiths the place and the process for collection of official 2. Ensure communications documentation and skills training is in place the deceased person’s and undertaken for all possessions staff likely to be in contact with carers immediately 6. Establish a system to send post death relatives a bereavement 3. Establish a system whereby questionnaire, such as the National Bereavement carers’ post bereavement Survey (VOICES), and to needs are assessed and provide frontline staff recorded as part of the with feedback in order carers assessment whilst to support continuing their loved one is still alive improvement. 4. Ensure all staff likely to be in contact with bereaved people have
  29. 29. The route to success ‘how to’ guide Practice example Redesign of bereavement services and mortuary viewing area 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, noninstitutional 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 Goss Email: samuel.goss@salisbury.nhs.uk 29
  30. 30. Section 4 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 certification procedures: www.endoflifecareforadults.nhs. uk/publications/guidance-for-staffresponsible-for-care-after-death MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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. 30 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.endoflifecareforadults.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/aboutons/surveys/a-z-of-surveys/nationalbereavement-survey--voices-/index.html
  31. 31. The route to success ‘how to’ guide 4. Improving Environments for Care at the End of Life In 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 MEDIA CONTENT To view this podcast please visit: tinyurl.com/acute-rts-howtoguide 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. 6. e-ELCA e-learning Free 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 7. National End of Life Care Programme support sheets • Support sheet 9 – What to do when someone dies: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet9 • Support sheet 15 – Enhancing the healing environment: www.endoflifecareforadults.nhs.uk/ publications/rtssupportsheet15 5. Route to success in end of life care: achieving quality environments for care at end of life This guide identifies a number of key environmental principles to help improve privacy and dignity for individuals and their families at the end of life: www.endoflifecareforadults.nhs. uk/publications/routes-to-successachieving-quality-environments-forcare-at-end-of-life 31
  32. 32. www.endoflifecareforadults.nhs.uk Published by the National End of Life Care Programme ISBN: 978 1 908874 04 7 Programme Ref: PB0005 A 02 12 Publication date: Feb 2012 Review date: Feb 2014 © National End of Life Care Programme (2012) All rights reserved. For full Terms of Use please visit www.endoflifecareforadults.nhs.uk/terms-of-use or email information@eolc.nhs.uk. In particular please note that you must not use this product or material for the purposes of financial or commercial gain, including, without limitation, sale of the products or materials to any person. Supported by the NHS Institute for Innovation and Improvement

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