A/Prof Amanda Walker Bernadette King

A/Prof Amanda Walker Bernadette King

Americans like to believe that death is an option. Woody Allen

PERCENTAGE WORLD MORTALITY RATES 100 90 80 70 60 50 40 30 20 10 0 1000 AD 1900 AD 2000 AD 2015 AD 2016 AD 2050 AD YEAR

To say, for example, that a man is made up of certain chemical elements is a satisfactory description only for those who intend to use him as a fertilizer. H. J. Muller 1890-1967: Science and Criticism (1943)

Death is a human experience, not just a negative patient care outcome

NSW data 2012 In NSW ~ 50% die in Acute Care Facilities 24,446 patients died in NSW Acute Care Facilities These patients experienced on average >3 admissions of >10 days each admission in the 12 months prior to death. 733,380 bed days occupied by those approaching death last year ~ 30% of these deaths are referred to Palliative Care Services Of these 70-80% are cancer-related

Further Background Learnings from Incident Information Management System Root Cause Analyses identify across the board that clinicians are failing to recognise when patients are at risk of dying developing appropriate treatment plans and communicating with patients and carers.

Further Background NSW data demonstrates that up to 30% of Rapid Response calls are for patients who are dying as a natural and unpreventable progression of their illness Documentation rarely demonstrates that patients and carers have been consulted about their preferred place of care

Dying in NSW* Greatest challenges related to staff discomfort initiating conversations with patients and carers; failure to recognise when patients are starting to die; and poor communication between staff and patients and carers. Lack of a standardised approach in the last days of life *results from 2012 QSA self assessment

Our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come. Atul Gawande, 2014 Being Mortal: Medicine and What Matters in the End.

AW

Oscar the Cat New England Journal of Medicine 357(4): 328 329

The AMBER care bundle a way forward in providing safe and quality end of life care Assessment Management Best Practice Engagement of patients and carers for patients whose Recovery is uncertain

AMBER care bundle Developed at Guys and St Thomas Trust, UK Designed to prompt clinical teams to identify those at risk of dying, then have a discussion involving medical, nursing and allied health team members, in order to coordinate a plan for appropriate care, considering escalation / rapid response status, resuscitation plan and ceilings of treatment, and have appropriate conversations with patients and their carers, and then document them. Whilst recovery is uncertain, the patients may still be receiving active treatment (i.e. the AMBER care bundle is not a last days of life plan) Aim is too move the conversation forward both to the daytime, and to a point where the patient can participate

Where it fits

Expected benefits Better identification of and communication with patients whose recovery is uncertain Better team communication and clarity regarding treatment goals Better communication with carers and families regarding the medical plan and possible outcomes. Greater likelihood of patient dying in preferred place of death, and in lower acuity wards in acute care facilities Lower re-admission rates (70% decrease in UK facilities) 22

ACI / CEC LHD Connect Request from LHDs for practical tools to support best practice in End of Life Care by generalist practitioners ACI / CEC area of collaboration Work will be co-located with ACI Blueprint for Improvement Implementation in conjunction with ACI PC& EOL Network Focus on dying safely in acute facilities

Last Days of Life Toolkit 24

Last Days of Life Toolkit The Last Days of Life Toolkit includes: Tools to prompt & support communication - (both verbal and written) Comfort Observation & Symptom Assessment Chart for the dying patient (including pre & post care) Guidelines for standardised medications for the individual dying patient Transition to die at home package

Working Groups Clinical Lead Group A/Prof Joey Clayton Palliative Medicine Physician, HammondCare Palliative & Supportive Care Service, Greenwich and Royal North Shore Hospitals. Associate Professor of Palliative Care, Sydney Medical School, University of Sydney Dr Sarah Wenham Palliative Care Specialist, FWLHD Communication tools Guidelines for standardised approach to medications for the dying patient Ms Judith Jacques Nurse Practitioner, Palliative Care, Central Coast LHD A/Prof Amanda Walker Clinical Director End of Life program. Clinical Excellence Commission Transition to die at home Symptom assessment and management chart

Last Days of Life Toolkit Developed by a team of 71 specialist & generalist clinicians and consumers across NSW one face to face meeting in June then via teleconference +/- webex The toolkit is being developed for use by clinicians working in non-palliative care inpatient settings in NSW. Supporting resources and education strategies will be developed alongside each of the tools.

Comfort Observation & Symptom Assessment Chart 1. Initiation of the last days of life plan Signs & symptoms of dying Mandatory criteria Care planning 2. Comfort Observation & Symptom Assessment Chart (replaces SAGO chart) 3. Care after death

Symptom Assessment 29

Comfort Observations & Management 30

Medication Management Standardised prescribing guideline - pre-emptive subcutaneous medications for last days of life - in line with national medication chart & prescribing terminology Five symptom management flowcharts - pain, dyspnoea, agitated delirium, nausea/vomiting, secretions - Pharmacological & non-pharmacological management - review, escalation and consult recommendations Written for a generalist (JMO/GP/RN) audience Hospital in-patients, including smaller rural/remote facilities Transferrable into other care settings (community/racf)

Additional information overleaf: general prescribing information; opioid conversation chart; palliative care contact details

Communication Designed to provide information and support to the patient and their family/carers in the last days of life. To support, not replace conversations 1. Asking questions can help: an aid for people and their family/friends when approaching the last days of life 2. Family / carer information regarding care in the last days of life 3. What to consider when your family member or friend has expressed a wish to go home from hospital to die at home 4. When a person dies in hospital: what to expect and what to do next 5. Understanding grief and some suggestions that may help 6. Useful tips for clinicians for speaking to patients / families / carers about dying

Transition to die at home Aim to facilitate a safe, smooth and seamless transition of care from hospital to community for patients who can be supported to die at home. 4 tools developed 1. Accelerated transfer home for last days of life plan Plan that includes criteria for who is / can die at home; a record of care coordination and discharge planning 2. Ambulance cover letter explanation if patient dies during transport 3. Nursing handover care plan for community nurses and/or RACF staff 4. Information brochure What to do when someone dies at home immediate action

End of Life Program Recognising risk of dying Recognising Dying Death WELL UNCERTAIN RECOVERY LAST DAYS AFTER DEATH Advance Care Planning AMBER care bundle Last Days of Life Toolkit Care after Death - Bereavement Death Screening M&M/Clinical Review

In line with ACSQHC: National Consensus Statement: Essential Elements for Safe & High Quality End of Life Care National Standards (Version 2) UK: Review of Liverpool Care Pathway

Related NSW Health Policies Verification of Death and Medical Certificate of Cause of Death PD2105_040 Using Resuscitation Plans in End of Life Decisions PD2014_030 Care Coordination: planning from admission to transfer of care in NSW public hospitals PD2011_015 Medication Handling in NSW Public Health Facilities PD2013_043

NSW Coordinated approach MoH: PEACH packages Verification of death ROADMAP Advance Care Planning SHAPE conversations CEC: Death Review database ehealth: documentation of EOL decisions

Next Steps Consultation program web based feedback Pilot sites early 2016 Implementation late 2016 Tools available from the joint CEC / ACI portal Blueprint for improvement

ACI / CEC Collaboration ACI & CEC are working together on End of Life Developing joint single portal for all tools LDL toolkit and AMBER care bundle will be linked in with the CAREsearch Blueprint for EOL / Pall Care 40

SHAPE Conversations Supporting Health professionals in Advance Planning and End of life Conversations A MoH / CEC / HETI initiative Working group developed tools and curriculum for educational package Tiered training structure with a core training module which forms the basis upon which progressive training is built. Comprehensive experiential workshop for targeted health care professionals.

Meaningful death review Most units review preventable deaths 32% of clinical units do not monitor any performance measures relating to end of life care * Of the 68% that do, 78% monitor complaints and compliments Only 12% monitor the number of end of life patients with unrelieved physical symptoms * QSA 2012 42

The chocolate box audit

Death Review Database An Inpatient Death Screening Tool has been developed, and a database built More than 14,000 Records reviewed this year! 82% (185) of facilities are using the database CHASM / SCIDUA notification added in May 2015 Next steps Community Health & Outpatient Services (incl. Mental Health) Reporting 44

End of Life Measures Did the patient have a MET call in the 24 hours prior to death? Date and time of last recorded observations taken prior to death Was there an advance care plan available? Was there a Not for CPR order documented? Were any symptoms of patient discomfort/distress documented in the 48 hours before death? Was the patient seen by the Palliative Care Team during this admission? Was the patient (with capacity) involved in the decision making process related to treatment plans and goals of care?

Preliminary outcomes 44% patients involved in Resuscitation Plan decision making Conversations often very late in admission 36% having MET calls in last 24 hours of life 43% had documented symptoms of discomfort or distress in 48 hours prior to death 37% seen by Palliative Care team 46

Morbidity & Mortality Review Guidelines Role of Death Review Data Clinician s Toolkit revision / update 47

Any questions?

Thank you A/Prof Amanda Walker Clinical Director Amanda.walker@health.nsw.gov.au Bernadette King Program Lead Bernadette.king@health.nsw.gov.au CEC-EOL@health.nsw.gov.au www.cec.health.nsw.gov.au The Clinical Excellence Commission wish to acknowledge the support of Guy s and St. Thomas Charity Modernisation Initiative and support from the King s College and South London and Maudsley Charitable Funds The AMBER care bundle