END OF LIFE GUIDELINES

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1 END OF LIFE GUIDELINES Document Reference No: 1678 Version No: 3.0 Status: Approved Type: Clinical policy Document applies to (staff group): All staff employed by the Suffolk Community Healthcare Consortium Where the procedural documents refer to Suffolk Community Healthcare (SCH) this is referring to those staff employed by the Suffolk Community Healthcare Consortium; a service delivered by West Suffolk NHS Foundation Trust (WSHFT) with The Ipswich Hospital NHS Trust (IHT) and Norfolk Community Healthcare and Care Trust (NCH&C) Date adopted/ ratified: March 2017 Review date: March 2020 Signature of Director: S/Internal/EndofLifeGuidelines/Jan17/V3.0

2 END OF LIFE GUIDELINE Policy Reference: SCH CP 17 Version: 3.0 Status: Approved Type: Clinical Policy applies to (area): Suffolk Community Healthcare Policy applies to (staff groups): All clinical staff involved with palliative and end of life care. Required compliance: This policy must be complied with fully at all times by the appropriate staff. Where it is found that this policy cannot be complied with fully, this must be notified immediately to the owner through the waiver process Policy owner: Policy authors: Other contact: Date this version adopted March 2017 Director of Nursing, Therapies & Governance Last review date January 2017 Reviewer District Nurse Development Lead Next review date March 2020 Location of electronic master SCH Intranet AGREED POLICY REVIEW / RATIFICATION / ADOPTION PATH: Level 1: Agreed by: End of Life Group Date: February 2017 Level 3: Agreed by: Quality & Patient Safety Assurance Group Date: 28/3/17 Name and Title of people who carried out the EQIA: Sarah Miller, Clinical Effectiveness Manager Head of Nursing & Professional Practice, Clinical Effectiveness Manager Marie Curie, St Nicholas Hospice, Macmillan Unit, WSH Level 2: Agreed by: Integrated Clinical Policy & Documentation Group Date: February 2017 Name of Director who signed EQIA: Rowan Procter Date EQIA completed: 28/2/17 Signature of Director: Date EQIA signed: 29/7/17 S/Internal/EndofLifeGuidelines/Jan17/V3.0

3 CONTENTS 1. Introduction 1 2. Purpose of this Policy 1 3. Policy Agreement Path 1 4. Development of this Policy 1 5. Cross Reference to Other Related SCH Policies and Guidelines 2 6. Glossary and Definitions 2 7. End Of Life Tools 3 8. Electronic Palliative Care Coordination System (EPaCCs) for Suffolk 5 9. Keyworker/ Care Co-ordinator Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Order Assisted Suicide and Dignitas Training Competency assessment Communication to other organisations 8 Appendix 1: The Gold Standard Framework 9 Appendix 2: DNACPR Form 10 Appendix 3: Advance Care Plan - GSF Thinking Ahead 11 Appendix 4: My Care Wishes Folder System 12 Appendix 5: Information leaflet for Patients and Carers: Role of the Key Worker/ Care Co-ordinator 13 Appendix 6: DNACPR Summary Decision Making Framework 14 S/Internal/EndofLifeGuidelines/Jan17/V3.0

4 END OF LIFE GUIDELINE EQUALITY and DIVERSITY IMPACT STATEMENT All policies, procedures, guidelines and other approved documents of SCH are formulated to comply with the overarching requirements of legislation, policies or other overarching standards relating to equality and diversity SCH welcomes feedback on this document and the way it operates and needs to be informed of any possible or actual adverse impact that it may have on any groups listed below. This document has been screened to determine equality relevance for the following dimensions: * Age * Gender * Disability * Race * Religion/ belief * Sexual Orientation * Transgender/ transsexual * Other characteristics 1. Introduction The aim of this guideline is to improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice. People approaching the end of their life frequently have complex, wide-ranging and changing needs. Meeting these needs requires effective care co-ordination across boundaries, supported by strong communication between the different teams involved in providing care. 2. Purpose of this Policy The purpose of the end of life guideline is to draw together the key end of life tools to provide guidance to clinical staff in their use and provide a standard of practice to increase the equity and quality of end of life care. All people approaching the end of life need to have their needs assessed, their wishes and preferences discussed and an agreed set of actions reflecting the choices they make about their care recorded in a care plan The care plan should be subject to review by the multidisciplinary team, the patient and carers as and when a person s condition, or wishes, change. For greater effectiveness, the care plan should be available to all who have a legitimate reason to access it (e.g. out of hours and emergency services). 3. Policy Agreement Path See front page 4. Development of this Policy In order to ensure a seamless pathway between community and acute care, this policy spans all end of life agencies and care providers: Suffolk Community Healthcare St Nicholas Hospice St Elizabeth Hospice Marie Curie Delivering Choice Programme S/Internal/EndofLifeGuidelines/Jan17/V3.0 1

5 Acute hospitals and 5. Cross Reference to Other Related SCH Policies and Guidelines Consent to Examination & Treatment Policy Controlled Drugs Policy McKinley Syringe Pump Guidelines Incident & SI Reporting Policy Mental Capacity Act Verification of Expected Death Policy Individual End of Life Care Plan Resuscitation Policy 6. Glossary and Definitions Gold Standard framework- GSF Advance Care Plan: Thinking Ahead Do not attempt cardiopulmonary resuscitation DNACPR Individual End of Life Care Plan Preferred Priorities of Care- PPC/ Shared Care Support Plan/ GSF: Thinking Ahead Advance decision to refuse treatment End of life care Key Worker / Care Co-ordinator Life limiting illness This offers primary health care teams a widely used, tried and tested, commonsense framework of enabling tools and resources to help optimise palliative care. This is an instruction, usually made by a patient while mentally competent and recorded in their notes, requesting the doctor to desist from performing resuscitation in the event of heart failure This plan of care provides a multidisciplinary approach to caring for the dying patient within their preferred place of care. (see section 7.4b) These two documents records the wishes and preferences discussed and the agreed action plan which reflects the person s choices about their care. This document is developed when the person has capacity to make their wishes known and should be patient-led. It should be reviewed regularly and may be used if the person loses capacity to make decisions. Can only cover refusal of specified future treatment and must be made when the person has capacity to make that decision. (NHS National End of Life Care Programme Chart - The differences between general care planning and decisions made in advance 2010) This is a documented care plan using a variety of tool which helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. a person who, with the patient s consent and agreement, takes a key role in co-ordinating the patient s care and promoting continuity, ensuring the patient knows who to access for information and advice (NICE 2004) This describes any chronic illness related to conditions such as heart disease, liver disease, renal disease, diabetes, cancer, stroke, chronic respiratory disease, neurological diseases and dementia. S/Internal/EndofLifeGuidelines/Jan17/V3.0 2

6 Mental capacity Palliative care Is the ability to make a specific decision, or take action, at the time this decision or action needs to be taken (based on OPG 606 DOH March 2009). Provisions relating to persons who lack capacity are laid out in the Mental Capacity Act 2005 The active total care of patients whose disease is unresponsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and other problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families (World Health Organisation, 1996). Palliative care aims to alleviate pain and discomfort to improve quality of life for all patients with any end-stage illness (NHS Information Centre). 7. End Of Life Tools Please note all documents relating to the End of Life tools described below, and in more detail in the appendices, can be contained within the My Care Wishes Plan folder Gold Standard Framework ACP Thinking Ahead (Appendix 1) a) GSF enables those approaching the end of life to be identified, their care needs assessed, and a plan of care with all relevant agencies put in place. The framework focuses on optimizing continuity of care, teamwork, advanced planning (including out of hours), symptom control and patient, carer and staff support. b) Key processes: Identify patients in need of supportive/palliative care Assess their needs and preferences, Plan their care Communicate across all relevant agencies throughout Preferred Priorities of Care (Appendix 2) This patient held document was designed to facilitate patient choice in relation to end of life issues. Through good communication and by documenting patient and carers choices, they become empowered through the sharing of this information with all professionals involved in their care. The PPC provides the opportunity to discuss difficult issues that may not otherwise be addressed to the detriment of patient care. The explicit recording of patients / carers wishes can form the basis of care planning in multi-disciplinary teams and other services, minimising inappropriate admissions and interventions.the document which is held by the individual, can be taken with them if they receive care in different places. It has space for the individual s thoughts about their care and the choices they would like to make, including saying where, if possible, they would want to be when they die Advance Care Plan GSF Thinking Ahead (Appendix 3) a) The aim of any discussion about thinking ahead, often called an Advance Care Planning Discussion, is to develop a better understanding and recording of their priorities, needs and preferences and those of their families/carers. This should support planning, provision of care and enable better planning ahead to best meet these needs. This philosophy of hoping for the best but preparing for the worst enables a more proactive approach, and ensures that it more likely that the right thing happens at the right time. b) Ideally an Advance Care Plan should be discussed to inform future care at an early stage, preferably on admission to a home. Due to the sensitivity of some of these issues, some may not wish to answer them all, or may quite rightly wish to review and reconsider their decisions later. S/Internal/EndofLifeGuidelines/Jan17/V3.0 3

7 This is a dynamic planning document to be adapted and reviewed as needed and is in addition to Advance Directives, Do Not Resuscitate plan, or other legal document. c) Advance Statements should be used as guide, to record what the patient DOES wish to happen, to inform planning of care. In line with the new Mental Capacity Act, this is different from a legally binding refusal of specific treatments, or what a patient DOES NOT wish to happen, which is called an Advance Decision (sometimes previously called a Living Will) Individual End of Life Care Plan a) Key elements will continue within the new individual end of life care plan to ensure that patients receive high quality care at end of life. A multidisciplinary team approach Initial assessment of patients condition and comfort Regular pro-active communication with the patient, family and significant others Identification of religious and spiritual needs Agreed plan of care Anticipatory prescribing Symptom control - Pain, agitation, nausea and vomiting, respiratory secretions, breathlessness. Agree and cease unnecessary interventions At least daily, regular on-going assessment, recording and amendment to plan if and when required Care after death - inform GP Provide appropriate information to family on registering the death and follow up support b) Please see: ea/clinical%20pathways/eol/yellow%20folder/attachment%2004a%20v14%20- %20Generic%20Template%20Shared%20Care%20Plan.pdf Verification of Expected Death (Appendix 4) Verification of expected death (VOED) is an important stage in the process for relatives and carers. Until this has been performed, no further action can be taken with regard to the deceased. If this process is delayed because of the unavailability of a doctor, (especially out of hours, due to prioritisation of most urgent need) relatives and carers may be left for a significant time, unable to begin what should be a normal process. The SCH VOED Policy has been produced to enable registered nurses to verify expected adult death and to ensure that verification of expected adult death is carried out promptly to reduce relatives anxiety and within legislative guidelines. S/Internal/EndofLifeGuidelines/Jan17/V3.0 4

8 7.6. Integrated End of Life Pathway (courtesy of Wirral Community NHS Trust) 8. Electronic Palliative Care Coordination System (EPaCCs) for Suffolk 8.1. The Suffolk EPaCCs service is based on a SystmOne Unit hosted by St Elizabeth Hospice. The system holds an EPaCCs record for all patients in Suffolk who are considered to be in the last year of their life, and who have consented for their clinical record to be shared The process by which a patient s EPaCCs record is created and managed, depends on the clinical systems used by the patient s GP practice and other providers of their care. GPs and other providers who use SystmOne write access have direct access to create and maintain a patient s EPaCCs record, whilst GPs and providers who use other clinical systems will create and manage the record using the data inputting service provided St Elizabeth Hospice The EPaCCs system will run in parallel with the existing yellow folder process. As with the current yellow folder process, patients are identified as being in the final year of life using the GSF coding assessment / prognostic indicator guidance. This is reproduced below for reference. 9. Keyworker/ Care Co-ordinator 9.1. Key Worker/ Care Co-ordinator practice is not new; good practitioners have always ensured that the patient and their carers understand the rationale behind their care plan and the aim of health care agencies involved has been to provide co-ordinated care The purpose of the concept is to ensure that all patients who are diagnosed with a long term or terminal condition within Suffolk are able to choose an appropriate health or social care professional or carer to be their Key Worker/ Care Co-ordinator and that the roles and responsibilities of this person are standardised within the organisations Whilst every effort is made to ensure continuity of care within the Key Worker/ Care Co-ordinator scheme the patients needs, place in the journey and also changes within service provision may necessitate a change of Key Worker/ Care Co-ordinator. It is therefore essential that the most appropriate person takes responsibility for the on-going management of a patient within their pathway without compromising continuity of care The role may be undertaken by any number of health or social care professionals and this may vary according to the patient s needs, the stage in their treatment journey and the nature of their condition. S/Internal/EndofLifeGuidelines/Jan17/V3.0 5

9 9.5. The most appropriate people could include (please note this list is not exclusive): Consultants GPs Nurses/ Nurse Specialists Care home workers Allied Health Professionals Social Care Workers/ Family Support Practitioners Family member or carer The Key Worker/ Care Co-ordinator should be identified, in consultation with the patient, as soon as possible after the recognition that palliative care is now needed and placed on the Suffolk End of Life Register (Electronic Palliative Care Co-ordinating System). The professional placing the patient on the End of Life Register (EPaCC) will take on the responsibility of being the interim/ associate key worker until a permanent key worker is identified. It is recommended that either the main or associate key worker be the district nurse. At the next team/ Multi-Disciplinary Team/ Gold Standards meeting the permanent key worker should be agreed The wishes of the patient and their carers must remain paramount and it must be made clear that the choice of Key Worker/ Care Co-ordinator rests solely with them and their families. The name and contact details of the Key Worker/ Care Co-ordinator should also be entered in the patient s health and social care records. The method of how and where this is recorded will vary between different care settings but it is the responsibility of the key worker to maintain accurate documentation Some patients may not want or require a Key Worker/ Care Co-ordinator; this wish must be respected and must be documented in the patient s health and social care records The impact / effectiveness of the Key Worker/ Care Co-ordinator will be regularly evaluated within regular patient satisfaction surveys For Information leaflet for Patients and Carers: Role of the Key Worker/ Care Co-ordinator please see appendix Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Order All people are initially presumed to be for cardiopulmonary resuscitation unless a valid DNACPR decision or a valid Advance Decision to Refuse Treatment (ADRT), refusing cardiopulmonary resuscitation, has been made and documented All DNACPR decisions must be based on current legislation and guidance. The DNACPR decision-making process must be measured, monitored and evaluated to ensure a robust governance framework When CPR would not restart the heart and breathing of the individual, it will not be attempted. In these circumstances, there is no obligation to explore an individual s wishes around CPR, though it could form part of a sensitive discussion about the progression of a life limiting illness and end of life care planning When CPR might restart the heart and breathing of the individual discussion will take place with that individual if this is possible, (or with other appropriate individuals for people without capacity) to clarify their wishes, although people have a right to refuse to have these discussions Effective communication concerning the individual s resuscitation status will occur between all members of the multidisciplinary healthcare team involved in their care and across the range of care settings. S/Internal/EndofLifeGuidelines/Jan17/V3.0 6

10 10.6. An up to date documented DNACPR order (see Appendix 2) indicates that no CPR (BLS/ ILS/ ALS) is attempted on that patient DNACPR orders are compatible with maximal therapeutic care. The patient may be receiving vigorous medical support and yet justifiably be considered for the DNACPR order The overall responsibility of a DNAR order rest with the medical practitioner in charge of the patients care A DNACPR order is valid until the order is revoked by a medical practitioner in charge of the patient s care. If the patient is admitted to hospital then the DNACPR should be communicated to the consultant in charge. Where possible the patient should present with the form in their yellow folder The revised NHS East of England DNACPR website is now up and running and includes a range of documents to support the development of the regional approach to DNACPR in the East of England. Please visit: A summary of the decision making framework can be found in appendix Assisted Suicide and Dignitas It is against the law to perform an act capable of encouraging or assisting the suicide or the attempted suicide of another person In the incidents where staff are approached by a patient or someone in their care who directly asks for assistance in hastening death or seeks information or support for Dignitas services, reference should be made to the RCN guidance When someone asks for assistance to die In these circumstances, staff should also inform their line manage to ensure the organisation is aware and can risk assess against litigation, adverse publicity and safeguard staff against professional misconduct. Please see: data/assets/pdf_file/0004/410638/ pdf) There needs to be assurance that the patient has full mental capacity and if there are any concerns about safeguarding a referral made Patients at the end of life are very vulnerable and a safeguarding referral must be made if patients are considering suicide or Dignitas services, and they do not have full mental capacity or are under coercion by another person The medical practitioner and line manager will need to be informed as there could be legal implications for the organisation and individual if staff are actively shown to support assisted suicide. 12. Training Regular training will be available to all staff as identified through the clinical/professional supervision and appraisal process dependent on their involvement with end of life care SCHs training department, clinical staff and the local Hospices should work together to develop training opportunities to respond to the requirements of the local and national End of Life Strategies and identified within the SCHs training needs analysis The training to underpin the key tools and enable staff to utilise them appropriately and effectively is essential. The training standard for each tool differs depending on the environment of the staff, support and level of skill Team leaders will be expected to cascade learning to existing and new members of staff through mentorship and preceptorship programme S/Internal/EndofLifeGuidelines/Jan17/V3.0 7

11 12.5. PPC/ ACP: Documentation is available on the SCH intranet and is also included in East of England E- learning, GSF and Care of the Dying training packages GSF: E learning packages are available directly via the NHS End of Life Website and the GSF website which can be accessed and also through the SCH Workforce Development Dept VOED: Self-directed learning portfolio using workbook produced by SCH in association with Marie Curie Cancer Care. Portfolio to be completed and competency assessed by successful completion and VIVA examination by assessor. a) VOED Role portfolio for Registered Nurse can be found at: b) VOED Workbook can be found at: DNACPR: E-learning package with accompanying competencies for nursing staff is now available via the NHS End of Life website. 13. Competency assessment All training programmes listed above have built-in competency assessments 14. Communication to other organisations Any End of Life documentation needs to be communicated and shared with a variety of agencies. These may include the following: Local hospices Local hospitals District Nursing teams General Practitioners Private and voluntary care agencies Social Care Services DN Out of hours services GP Out of hours services Specialist Nursing Services East of England Ambulance Trust S/Internal/EndofLifeGuidelines/Jan17/V3.0 8

12 Appendix 1: The Gold Standard Framework This offers primary health care teams a widely used, tried and tested, commonsense framework of enabling tools and resources to help optimise palliative care. Seven key tasks of the Gold Standards Framework 1. Communication You will be involved at every stage, asked about your preferences for care, and where at all possible we will try to help you fulfil these. By anticipating your needs and those of your family, by involving you in decision making, we hope that you will retain a sense of control and choice. Your preferences may be recorded on an Advance Care Plan which can be shared with others involved in your care. You may also have a Care Plan / Home Pack / Patient Held Record so that your information can be kept together in one place with you. 2. Coordination of care Your care will be coordinated by your primary care team, by your GP and lead nurse. You may have a named key worker (this could be your GP or a community nurse) who will guide and support you. 3. Control of symptoms and ongoing assessment Your symptoms, problems and concerns (physical, social, psychological and spiritual) will be assessed regularly, recorded and where appropriate the information communicated to other doctors, nurses and clinicians involved in your care. You may be helped to apply for financial benefits available to patients with an advanced illness. We will do our best to ensure that you receive the highest possible standard of medical and nursing care, and that you are never overwhelmed by symptoms. 4. Continuing support Your GP or community nurse will send information about your care to the Out of Hours healthcare provider (when your GP surgery is closed), to enable continuity of care across the gap in service out of normal working hours. You will be told who to contact in an emergency or if you need advice out of hours. 5. Continued learning Your practice team may request support from a specialist palliative care / hospice doctor or nurse to help suggest or provide best possible care for you. They will reflect on and learn from the care given to each patient, so please share any ideas and suggestions. 6. Carer and family support Your family or carer may be asked about how they are coping and further support given to them. They will be given advice about what to expect and how to manage if there is a crisis or as your condition deteriorates. 7. Care in the final days When your condition deteriorates your practice team will continue to provide the best supportive care possible, anticipating your needs and ensuring you are as comfortable as possible. Your family and carer will be given continuing advice and support. For further information go to: S/Internal/EndofLifeGuidelines/Jan17/V3.0 9

13 Appendix 2: DNACPR Form N.B. Please record on the form whether the patient has full mental capacity S/Internal/EndofLifeGuidelines/Jan17/V3.0 10

14 Appendix 3: Advance Care Plan - GSF Thinking Ahead The process of pre-planning of care as one of the most important means to ensure better care; proactive care is a paradigm shift that ensures better quality and more consistent care throughout. ACP is therefore one of a series of End of Life tools available for use. Proactive care and Advance Care Planning have always been an important part of GSF. Key processes of GSF have been to identify, assess and plan care. Planning takes two forms: Agreed management or clinical treatment plans led usually by clinicians at the multidisciplinary team meetings Agreed personal / preference plans clarified with patients and their families eg Advance Care Planning For guideline documents and templates go to: or SCH Intranet S/Internal/EndofLifeGuidelines/Jan17/V3.0 11

15 Appendix 4: My Care Wishes Folder System The End of Life patient held (home based) Yellow Folder record system, contains core information for those with a life shortening illness, easily accessible by all agencies. The folder contains the following documents; My Care Wishes Folder, Contents Label and Location Labels GSF Thinking Ahead Advanced Care Plan notification document Individual End of Life Care Plan GSF Passport DNACPR Form Shared Care Support Plan Directory of Key Contacts Patient/ Carer EPaCCS Information This folder is to be kept at front of Community Nursing notes. There will also be a sticker by the front door to identify to any health and social care professionals and private or voluntary sector care agencies to the existence and location of the folder S/Internal/EndofLifeGuidelines/Jan17/V3.0 12

16 Appendix 5: Information leaflet for Patients and Carers: Role of the Key Worker/ Care Co-ordinator What is a Key Worker/ Care Co-ordinator? Your Key Worker/ Care Co-ordinator can help you navigate your way through the health care system. Your Key Worker/ Care Co-ordinator may change for different reasons, but you should always have a Key Worker/ Care Co-ordinator you are happy to contact for information and advice. Your Key Worker/ Care Co-ordinator should know about your condition and care/ treatment and what happens next. If they don t they will help you to find the right person to help. Your Key Worker/ Care Co-ordinator might be a doctor, nurse, other health professional, care worker or social worker and you should know who it is and how to contact them You are able to choose who your key worker is and if would like them to help, they will: Be your main point of contact Find out what help and support you need and try to ensure you get it Give advice to you, your carers and family Find out who can help you if they can t Inform you who to contact when they are unavailable If you don t know who your Key Worker/ Care Co-ordinator is you can ask: If you re going to the hospital, ask the nurses, doctors or other health professionals If you re at home contact your GP surgery, district nursing team or, if you have one, social worker If you are under the care of one of the Hospices you can ask there too KEY WORKER/ CARE CO-ORDINATOR Name: Job Title: Contact Details: Out of Hours Contact Details: S/Internal/EndofLifeGuidelines/Jan17/V3.0 13

17 Appendix 6: DNACPR Summary Decision Making Framework S/Internal/EndofLifeGuidelines/Jan17/V3.0 14

18 Equality Impact Assessment Tool Any identified a potential discriminatory impact must be identified with a mitigating action plan to address avoidance/reduction of this impact. This tool must be completed and attached to any SCH approved document when submitted to the appropriate committee for consideration and approval. Name of Policy: End of Life Guidelines Equality Impact Assessment Tool Yes/No Comments 1. Does the policy affect one group less or more favourably than another on the basis of: Race Ethnic origins (including gypsies and travellers) No No Nationality No Gender No Culture No Religion or belief No Sexual orientation including lesbian, gay and No bisexual people Age No Disability - learning disabilities, physical No disability, sensory impairment and mental health problems 2. Is there any evidence that some groups are No affected differently? 3. If you have identified potential discrimination, No are any exceptions valid, legal and/or justifiable? 4. Is the impact of the policy/guidance likely to No be negative? 5. If so can the impact be avoided? NA 6. What alternatives are there to achieving the policy/guidance without the impact? 7. Can we reduce the impact by taking different action? NA NA S/Internal/EndofLifeGuidelines/Jan17/V3.0 15

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