The JourneyEnd of Life Care in                                                 •   Starts with noticing symptoms and being...
Recommendation 21. There should be improved access to                                    high quality end-of-life care ser...
LIP project Solihull Care Trust Aim               Objectives of project• To improve identification of patients with end   ...
3. Assessment and care planning                                                                                           ...
7. Care after death                                                                                                       ...
Outcomes cont                                 Objectives of the EOLC Project• Training needs identified – particularly wit...
Workshops and Process Mapping                                    EOLC Workshops Current State Map• 2 workshops and 1 meeti...
Developing step by step guidanceSolihull Community Services End of Life Care Dependency Tool using GSF Status             ...
Conclusions                                                    Thank You• EOLC is everybody’s business• Patients are recep...
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Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihull Sandy Walmsley, Helen Meehan


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Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihull Sandy Walmsley, Helen Meehan Solihull Community Services Joint Respiratory Clinical Leads
Part of a set of presentations from NHS Improvement event: Better value, better outcomes held on Thursday 21 February 2013,
Guoman Tower Hotel, London
How to deliver quality and value in chronic care:sharing the learning from the respiratory programme

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Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihull Sandy Walmsley, Helen Meehan

  1. 1. The JourneyEnd of Life Care in • Starts with noticing symptoms and being given aRespiratory Disease ~ What diagnosiswe did in Solihull • This is the point of no return...Sandy Walmsley RGN, MSc,Lead Respiratory Nurse SpecialistSolihull Community ServicesJoint Respiratory Clinical Lead~ West MidlandsHelen MeehanLead Nurse Palliative CareSolihull Community Services 1
  2. 2. Recommendation 21. There should be improved access to high quality end-of-life care services that ensure equity in care provision for people with severe COPD, regardless of setting • COPD carries an extensive morbidity and mortality yet there is little palliative care provision • People with advanced COPD should be fully supported in the final stages of their diseaseA story with no beginning • Palliation of symptoms in advanced COPD should not be confused with terminal care at the end-of-lifeA middle that is a way of life • It is difficult to make an accurate prognosis at the end of life in COPD • More accurate prognostic indicators require development toAn uncertain and unlooked for end identify the end-of-life phase • End-of-life care pathways for people with COPD require development and evaluation (COPD Consultation on the Clinical Strategy, 2010) 2
  3. 3. LIP project Solihull Care Trust Aim Objectives of project• To improve identification of patients with end • Increase number of patients with COPD on GSF from 8% (baseline) to 14% stage COPD, enabling proactive, coordinated care and support preferred place of care at the • Monitor patients with COPD on GSF who were offered end of life ACP discussions• These patients were supported by practices and community teams using: • Increase number of patients on Community Supportive Care Pathway – GSF – Supportive Care Pathway • Monitor achievement of PPC and place of death – Advance Care Planning (MY COPD and MY LIFE booklets) 3
  4. 4. 3. Assessment and care planning 6. Care in the last days of life• Community Nursing using SUPPORTIVE CARE PATHWAY COMMUNITY • SCP part 2 – comfort care in Community Care Pathway for patients on the GSF / Palliative Register and in the Dying Phase – Part 2 INTRODUCTION Supportive Care Pathway Patient identified as being Signs of the dying in the dying phase phase: the dying phase  Profound weakness (SCP) part 1 Assessment visits by GP and DN/community nurse and commence Care Pathway for the dying phase  Diminished intake of food • Just in Case Boxes and fluids  Review Advance Care Plan and DNAR status  Difficulty THE SUPPORTIVE CARE  Just in Case Box/Anticipatory medication in swallowing or• MY LIFE booklet to support patient’s home taking oral PATHWAY COMMUNITY  Comfort Care Box in the patient’s home medications • Comfort Care Boxes  Updated Patient summary forwarded to OOHs  Drowsy or provider and OOHs community nursing reduced cognition ACP Care Plan and Multi-disciplinary Team Record of Visits for Supportive and Palliative Care   Bed bound Needs assistance • Hospice at Home service Guidelines for use of this documentation with all care What is the  May be  This is a multidisciplinary document to be used by all health care professionals visiting the patient at home. All sections should be completed, none should be left blank. Hospice, Care preferred disoriented in Home or other place of time or place  This pathway is designed for adult patients with progressive life limiting illness where the care? FOR of care is on comfort and quality of life. focus IN-PATIENTS WITH SUPPORTIVE CARE NEEDS Additional  Patients that have been identified for the Gold Standards Framework (GSF) supportive care Supportive/Palliative Care Register should be started on this pathway. SUPPORTIVE CARE PATHWAY COMMUNITY Liaise with could include: COMFORT CARE appropriate 24/7 supportive care at  It is designed not to be excessively restrictive, nor does it dictate how patients should be service to enable managed, but it does offer guidelines. Home home (night sitting, preferred place Marie Curie Nursing,  Guidelines for the management of symptoms at the end of life are available both in each of care hospice at home), clinical area where this pathway is used and on the Trust intranet site existing package of social care  Professional judgement must be applied, whilst taking into account the patient’s wishes and needs. Any changes to suggested care within this pathway must be recorded as a variance on visit assessment sheet. The pathway should be used in accordance with the Mental Capacity Act. THE SUPPORTIVE CARE No Does patient have Yes  Please contact the specialist palliative care team for additional advice and support, if PATHWAY COMMUNITY specialist palliative care required. needs?  The aim of this document is to support the patient’s health needs alongside their spiritual, social and psychological ones. Refer to Specialist Ongoing visits (minimum daily) by DN/community Palliative Care (SPC) for nurse to provide holistic nursing care according to assessment +/- ONGOING ASSESSMENT COMFORT CARE – PART 2 management in the care pathway document This pathway was developed with support from Pan Birmingham Palliative Care Network partnership with primary The ongoing assessment should be undertaken by the multidisciplinary team when the decision is taken to commence the patient on the pathway Refer to appropriate services to provide additional care team © West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1 supportive care at home to work in partnership Date of commencement upon pathway with DN/community nursing team Patient Name: Address: Patient ID/NHS number: DN/community nursing continuation of care following patient death: including information on Tel: what to do following death, bereavement contact/visit within 1 week © West Midlands Strategic Health Authority 2006. SCP COMMUNITY version 1 2008 SCP sheet 1 4
  5. 5. 7. Care after death Outcomes from Project• SCP part 3 – care after death• Carer information and SUPPORTIVE CARE PATHWAY COMMUNITY CARE AFTER A DEATH • COPD patients on GSF increased to 12% but then support reduced to baseline owing to deaths• Bereavement visit following THE SUPPORTIVE CARE • 29% of patients dying at home (including care homes) PATHWAY COMMUNITY patient death PART 3 in 2010/11 to 39% in 2011/12 CARE AFTER AN EXPECTED DEATH • 71% of patients died in hospital in 2010/11 reducing to 59% in 2011/12 This pathway documentation includes: • All surgeries and Community Nursing using “My Life” booklet enabling ACP discussions Information on what to do following an expected death A template for record of verification of death A template for recording information and advice given following a death © West Midlands Strategic Health Authority 2006 SCT(C)098v2/2011 – Solihull Care Trust Supportive Care Pathway for Adults PART 3 SCP sheet 1 • Increased partnership working between MDT Replaces Ref No: SCT(C)097v1/2008 5
  6. 6. Outcomes cont Objectives of the EOLC Project• Training needs identified – particularly within the • Increase number of patients supported in community hospices on Supportive Care Pathway• Patient & Carer survey revealed – 76% very satisfied with opportunity to discuss what • Improve coordination of care and reduce duplication is important to them & coping with illness – 84% very satisfied with involvement in discussion • Improve communication and information sharing – 76% very satisfied with information on future care across services – 90% very satisfied with overall experience• Community EOLC project • Define the role of the District Nurse in EOLC 6
  7. 7. Workshops and Process Mapping EOLC Workshops Current State Map• 2 workshops and 1 meeting held with leads and senior N o 1. PATIENT IDENTIFIED AS EOL No 2. No 3. clinicians from all services involved in EOLC REFERRED INTO E.O.L. PATHWAY PATIENT IS ASSESSED CARE PLAN DEVELOPED• Workshop 1 Oct 2011: Spa CLN/CHC No 1 - Identify Patient and Referrals VW Heart Failure COPD (Resp Team) District Nurses Macmillan Spa CLN/CHC VW No 2 - Assessment Heart Failure COPD (Resp Team) District Nurses Macmillan Spa CLN/CHC No 3 - Care Plan Development VW Heart Failure COPD (Resp Team) District Nurses Macmillan – Process mapping for all services Referrals to service by Patient Referred from Referrals to the service M.O.T.s with consultants Identify Patient in last 6- Monthly GSF to identify Referrals received by fax Assessment to identify CHC assessment Full assessment including Key worker / Co- TPP - Paper records Base line care plan to Write care plan Care plan developed Annual teaching to Plan rescue medication Lack of available care Use specialist palliative others. All referrals acute service via NHS by GP; Resp Team; Heart to identify EOL patients 12 months of life and where on the register on Pan BHam network need - Care delivered by undertaken and psychological, social Ordinator Who ?? - As reviewed at SPC MDT 1 enable safe delivery of summary for providers over 2-3 visits, community staff and O2 therapy and plans and printers not care if D/N stated in accepted & actioned. CHC checklist (CLN) failure communicate to GP for "RAC" Specialist Palliative Care support workers discharge planned with carried out by matrons appears to be District week after referral. care by support worker and risk assessment. management plan night nurse if needed working care plan. GSF and District Nurses pathway referral form. for Supportive Care Multi-disciplinary team, for all referred patients. Nurses! Providers then write agreed with – List of ‘snags’ Pathway family and patient - plus own care plan (CHC) patient/carer Equipment and Referral from specialist 10% patients referred Adhoc attendance at GSF Joint Clinics to Referrals received from Referrals from environment.(CLN) Qualified staff view Epex all assessments On assessment full care Telephone support to Patients have self Full care plan part one Some of team will palliative care nurse in onto District Nurses. meetings to feedback consultant In-Reach Hospital, Specialist Consultants, specialist supportive care and contacts(CHC) plan left in house. GPs and district nurses management plan initiate supportive care acute hospital (CLN) condition of patient onto Wards - Services, Virtual Wards nurses, GPS, District Complete full assessment Not all members of staff Refer to Hospice at Blue Bed Assess DLA/AA Identification of EOL and GPs. Some via Nurses, Care Homes, pathway but do not Contact telephone pathway. and present to panel for confident to have Home / Spa or CHC + DS1000 patients. phone, face to face, No Patient carerer, Self complete numbers left with outcome decision - need difficult conversations depending on condition. Referral forms or very Referral followed up patient/carer to be passed back to about Place of Death and little information. with GP Social services. Currently Do Not Resuscitate. Care agencies write Provide rescue Annual training to Find out what they Specialist palliative care Inappropriate Fast Track Patients identified are Refer patient to Attend GSF meetings if Phone Macmillan to see Not Being done within their own care plans- do medication plan to community staff know and what they templates on TPP referrals (CHC) often difficult to refer Macmillan/Palliative able. if they are aware of the time scales(CHC) not always have skills patient want, what family onto District Nursing. care team if other patient.• Workshop 2 Nov 2011: conditions require input. and expertise support they have Fast Track Referrals Result of assessment Contact patient and Assess within 2/5/10 Referral comes from Difficulty in joint working Identify and Referral raised on Epex, assess within 48 hrs. to referrals made to other conduct introduction to days depending upon Care plan and risk Joint visits with district Telephone support for Supportive care My life booklet offered multiple sources for full when working with Non- communicate to GPs the However not all patients support with "POC"? agencies e.g.. DNs service and start care patient need. assessments forwarded nurses to support care DNs/GPs pathway, education re to patients to support assessment and Fast Cancer patients need for patients to go are put onto the register Identify Provider.(CHC) plan. to care agency (CLN) plans documentation for all information Track (CHC) onto the GSF by all staff. services as process not Referrals from Spa to All assessment Ask patient families Assess first by telephone used by all services – Agreed priorities Referrals from Hospital About 60% +- patients Open palliative care support with night sits, documents put onto concerns worries fears and agree time and date If plan is to go home, District nurse to Care pathway Discharge. identified as not Register involves outside agencies Epex request and documents. for the 1st visit multidisciplinary team complete Gold Standard document not on care currently on the GSF or - note unable to use their SCP meeting arranged, liaise Framework part 1 for plan print run for paperwork Spa for Agency Discuss in Hand over with D/N, develop care care plan community nursing After individual E-mail sent to West Contact and give contact PC assessment including :- plan with patient and – Concerns, causes and countermeasures Management meeting assessment liaise with Midlands Ambulance numbers as may not Physical, Psychological, family (CLN) the appropriate others - Service and Badger want a visit - record spiritual and social District Nursing to 3 monthly GSF meetings DN;s , OT,s , Physio, informing them of detail on Epex. Referrals from Supportive care provided packages under with GP where diagnosis Marie Curie patient on the Virtual Heartlands for CHC do pathway implemented fast track. and prognosis is discussed Ward - On some not provide care plans and put in patients – Vision statements CHC referral- On Marie Curie, Nurse occasions Do Not or risk assessment (CHC) home assessment identified as Specialists Links and resuscitate status is sent EOL care. Contacts to them. Marie Curie Nurse Sign posting on Assessment - lack of CHC community unable Specialist Monthly assessment Difficult to communication between to use plans and risk Meeting predict time of death services resulting in assessments written by No GSF meetings at because of their long repeat questions for SPA whey they refer to some surgeries term condition. patients. CHC Enter onto Epex - Input errors would be On assessment referral Make initial contact with eradicated if the input• Meeting Dec 2011: to team social worker, patient and family to fields were mandatory. Initial referral to all team Physio and team discuss plan of care. services or just to pharmacist. immediate service 50% of Nurses failing to input information. – Agreed action plan Communication, Lack of electronic records to link all services - on-going through all EOL. Productive Community Services 7
  8. 8. Developing step by step guidanceSolihull Community Services End of Life Care Dependency Tool using GSF Status What do we want the reality to be? Identification of patients with Months / year prognosis - stable Weeks /months prognosis - Days / weeks prognosis - dying Care after death • Needs based care EOLC needs sliding Use of GSF ‘Surprise Named DN for patient Minimum 2 weekly DN Minimum daily Verification of death • Choice – preferred place of care Question’ and responsible for case review and support DN/community completed and Prognostic Indicator management using Supportive Care nursing support & appropriate services Guidance – including Pathway PART 1 case management notified patients with non cancer diagnosis Minimum monthly review and support from DN Review ACP and preferred place of care using Supportive Care Pathway PART 2 Carer information on registering a death • Reliable care Community Nurses, Review ACP, preferred and bereavement Community Matrons, Care plan and DNACPR if place of death & support Respiratory and Heart Supportive Care appropriate & notify DNACPR status Failure teams identifying patients Pathway PART 1 commenced by DN WMAS if DNACPR in place Refer & liaise with Carer bereavement needs assessed and • Dignity appropriate support referral for support if Identification from MY LIFE booklet - ACP Refer & liaise with services - Marie Curie appropriate discharge letters discussions offered, appropriate support Nursing or SPA outcomes recorded services - Marie Curie Hospice at Home (see Reflection and Liaising with GP when patients identified for Refer & liaise with Nursing or SPA Hospice at Home (see flow chart) learning reviewed at next caseload review • Carers supported the GSF register appropriate support flow chart) OOHs updated and meeting services WMAS OOHs updated Complete discharge OOHs notified Carer’s needs Review carer’s needs Review carer’s needs Update Complete screen on SystmOne indicating place of death • Staff supported assessment Update Complete SystmOne templates - SystmOne templates - GSF, ACP and care Audit patient Complete SystmOne GSF, ACP and care pathway outcomes in EOLC templates - GSF, ACP and care pathway pathway • Consistent, sustained, reliable services Referral to Specialist Palliative Care for patients with complex palliative care needs DRAFT April 2012 8
  9. 9. Conclusions Thank You• EOLC is everybody’s business• Patients are receptive to Advance Care Planning discussions• We can make a difference• The “journey’s end” is planned and prepared 9