NSW Health End Of Life And Palliative Care Framework
NSW HealthEnd of Life andPalliative CareFramework 2019-2024
AcknowledgementsNSW Health would like to acknowledge and thank the thousands of individuals, clinicians, service providers,academics, consumer groups, peak bodies and others individuals and groups who shared their views,knowledge and expertise towards the development of this NSW End of Life and Palliative Care Framework(‘the Framework’).The Framework builds on the substantial work and consultations carried out over previous years in relationto end of life and palliative care in NSW. This includes the work of the Agency for Clinical Innovation (ACI),the Clinical Excellence Commission (CEC), the Health Education and Training Institute (HETI), the CancerInstitute NSW and Palliative Care NSW. This Framework has also benefited from the expert advice andguidance of members of the End of Life and Palliative Care Framework Steering Committee.Cover photo: GivenworksNSW Ministry of Health73 Miller StreetNORTH SYDNEY NSW 2060Tel. (02) 9391 9000Fax. (02) 9391 9101TTY. (02) 9391 9900www.health.nsw.gov.auProduced by: NSW Ministry of HealthThis work is copyright. It may be reproduced in wholeor in part for study or training purposes subject to theinclusion of an acknowledgement of the source. It may notbe reproduced for commercial usage or sale. Reproductionfor purposes other than those indicated above requireswritten permission from the NSW Ministry of Health. NSW Ministry of Health 2019SHPN (HSP) 190049ISBN 978-1-76081-083-2 (online)ISBN 978-1-76081-092-4 (print)Further copies of this document can be downloaded fromthe NSW Health website www.health.nsw.gov.auFebruary 2019
NSW HealthA message from the MinisterEvery day in our lives we make choices and those choices should not stop when we areapproaching the end of our lives. When people reach the end of their life they shouldhave the option of being surrounded by family and friends in an environment wherethey are the most comfortable and receive the best support possible.The NSW Government invests more than 210 million each year in palliative careservices. But we can always do more and that’s where this End of Life and PalliativeCare Strategic Framework comes in. This Framework sets out the future of palliativecare in whatever environment it takes place.In 2017 we heard from more than 2000 people across the State who participated in theNSW Palliative Care Roundtables or responded to a Palliative Care survey.We heard many personal and transforming stories which highlighted that: care at the end of life should be person centred, service delivery should be flexible, care should be integrated and well-coordinated, additional resources and training is needed for staff; and the role of carers and support services should be recognised.In response to this feedback, the NSW Government committed an additional 100 million over four years (2017-18to 2020-21) to improving end of life and palliative care services.At the heart of this Framework is the focus on people. And that starts with every one of us having what can bea difficult conversation with our family and friends around death. We know that death can occur at any time andsometimes unexpectedly. This Framework encourages all of us to have open conversations with loved ones aheadof time to ensure we all get the care we want and need when the time comes.The community deserves to have the utmost confidence and choice in their end of life and palliative care. I amincredibly proud that the NSW Government has increased palliative care funding to record levels to meet theneeds of our community.Brad HazzardMinister for Health3
End of Life and Palliative Care Framework 2019-2024A message from the SecretaryOne of NSW Health’s strategic priorities is to promote choice of care for individualsapproaching the end of their life. It is important that we create a health systemthat supports individual preferences, which means continuing to improve access toconsistent and high quality end of life and palliative care services.I am pleased to share the End of Life and Palliative Care Strategic Framework, whichwill assist NSW Health services to provide high quality care for individuals approachingthe end of their life, with their families and carers well supported. Over the next fiveyears, the Framework will guide change in our health system to achieve this objective.The Framework sets out priority areas for improvement where people and services mustwork together to enhance support and care for people at the end of life in NSW.It is important that everyone is involved. Each role needs to be acknowledged and supported to provide highquality person-centred care. This includes individuals, family members, carers, professionals, volunteers andmembers of the local community. The Framework will guide services and support to be more culturally safe andresponsive to the unique needs of people and population groups.Some of the Framework’s actions include working with partners to develop consistent approaches for advancecare planning, improve access to bereavement support for families and carers, the development of a state-wideworkforce strategy and looking at how we can design spaces, use technology and equipment in communityand acute settings. A new End of Life and Palliative Care governance structure will also commence to overseeprogress of the Framework’s actions.Making this Framework a reality requires effective collaboration across the NSW health system including betweenservice providers, policy makers, clinicians and program managers. Equally, end of life and palliative care couldnot be provided without the actions and support of non-NSW Health partners including community bodies,primary health care providers, aged care providers and more.My hope is that everyone in NSW receives the best possible care as they approach the end of their life, and thatfamilies, carers, volunteers and staff are supported.Elizabeth KoffSecretary, NSW Health4
NSW HealthContentsAcknowledgements2A message from the Minister3A message from the Secretary4Introduction7The context8Who is this Framework for?11The scope of end of life and palliative care12The Vision14What underpins the Framework?15Priorities16Priority 117Priority 220Priority 322Priority 425Priority 528Implementation and monitoring31Glossary33References365
End of Life and Palliative Care Framework 2019-20246
NSW HealthIntroductionHow people approach the end of their lifeis highly individual and a deeply personalexperience. As people enter this phase oftheir life, they, their families and carersshould be able to make decisions aboutthe care they want, how it is delivered,and the places and circumstances it isprovided.At the heart of this NSW End of Life and PalliativeCare Framework (‘the Framework’) are individuals,and their families and carers. All individuals shouldhave access to the best possible end of life andpalliative care – no matter where they live, theircondition, age or who they are.The care they receive should also be based on theirindividual needs and preferences. There is strong andgrowing evidence around the benefits of a personcentred approach to end of life and palliative care.Person centred care contributes to: better outcomes for individuals, their families andcarers an improved quality of life a more positive experience for people.1, 2, 3, 4, 5In NSW there are areas of excellence and innovation inend of life and palliative care but more work is neededto make sure everyone can access and receive thiscare.This Framework acts as a guide for those workingwithin the NSW health system.In this context, the NSW health system refers to allpublically funded health organisations. It includesthe NSW Ministry of Health, Local Health Districts,Speciality Health Networks, Pillars (Agency for ClinicalInnovation, Bureau of Health Information, CancerInstitute NSW, Clinical Excellence Commission andHealth Education Training Institute), state-wide healthservices, shared services and any other organisationpublically funded by NSW Health.To support implementation of the Framework,the NSW Ministry of Health will provide additionalguidance. This will include providing keyaccountabilities for Local Health Districts andSpeciality Health Networks, Pillars and the NSWMinistry of Health.Ultimately the Framework aims to not only improveaccess to the best possible end of life and palliativecare, it also aims to encourage people to talk moreopenly about death and dying as a normal part of life.A person centred approach is supported bycare delivered according to individual needs andpreferences and in partnership with the person,their family and carers.This Framework sets out the vision and direction for end of life andpalliative care in NSW. It aims to create a renewed drive for people andservices to work together in providing accessible, high quality end oflife and palliative care. This includes working in partnership with peoplereceiving the care, their families and carers.7
End of Life and Palliative Care Framework 2019-2024The contextWith an ageing population comes a risein the prevalence of chronic diseases. Thismeans the demand for end of life andpalliative care services is increasing andcontinues to grow.6The NSW Government recognises the increasingdemand for end of life and palliative care and hasinvested in initiatives to increase the capacity ofthe NSW health system to provide end of life andpalliative care.One of the challenges in preparing for the increaseddemand is the variance in models of end of life andpalliative care provision, and needs of differentcommunities, across Australia. Each state andterritory has a different approach to planning anddelivering publicly funded services; local serviceshave different delivery practices and structuredhealth care systems. They also have varyingdemographic profiles, geographic location anddiffering demands for particular types of services.7Integrating end of life and palliative careIn 2017, the NSW Auditor-General reviewed palliativecare services in NSW. The report acknowledgedthe multiple initiatives aimed at addressing theissues affecting palliative care service deliveryand planning. It also identified specific areas forimprovement, including:81. Performance monitoring2. Coordination of statewide planning and evaluation3. Systematic planning4. Consistent data collection and use5. Engaging stakeholders.To address these, the Audit Office recommendedNSW Health develop an End of Life and PalliativeCare Framework.Talking about death and dyingTo ensure truly person centred end oflife and palliative care, we need to talkabout what matters most to us in livingand dying.Having conversations about death,dying and bereavement can be difficult.It may even be considered by some tobe a taboo subject. Even though weall have different beliefs and thoughtsaround death there is one thing wehave in common - dying and death willbe a significant part of our lives andmost of us will experience losing peoplewe love and care for during our lifetime.Photo: shapecharge8
NSW HealthThe approachThe Framework integrates key principles frommultiple strategies, guidelines and standards relatedto end of life and palliative care as an overarching‘umbrella’. It will also guide the future direction ofstate-wide policy and strategy relating to end of lifeand palliative care.The Framework has also been informed byinternational, national and state policies, as well asrelevant strategies.The Framework builds on the extensive suite ofexisting tools and documents. This includes:The Framework is supported by other current keydocuments relating to quality for end of life andpalliative care, which services adhere to. These keydocuments include: Principles of the National Palliative Care Strategy National Safety and Quality Health Service(NSQHS) Standards and the National ConsensusStatement: essential elements for safe and highquality end of life care National Palliative Care Standards EQuIP5: Linkage with Standards for ProvidingQuality Palliative Care for all Australians. The Agency for Clinical Innovation’s (ACI)Palliative and End of Life Care: A Blueprint forImprovement The Clinical Excellence Commission’s (CEC)AMBER Care Bundle NSW Health Education and Training (HETI),SHAPE end of life conversations, Verificationof death, and Managing Death and DeathCertification eLearning modules NSW Health Advance Planning for Quality Care atEnd of Life: Action Plan NSW Government Plan to increase access topalliative care 2012-2016 NSW Health Leading Better Value Care Program.9
End of Life and Palliative Care Framework 2019-2024Snapshot of end of life and palliative care in NSW33,000Each year, there are approximately33,000 predicable deaths* wherea person could benefit from someform of end of life care.50%Nearly 50% of deathsoccur in the acutecare setting.36.8%In 2018, 36.8% of older Australians accessing healthservices had at least one advance care directivedocumented in their health record. This was higherthan the national result of approximately 30%.11,400packages1,610 volunteersIn 2018, there were 1,610 palliativecare volunteers and about 44palliative care volunteer services.11,400 Last-Days-of-Lifehome care packages weredelivered to 7,983 peoplein the last five years.Including:2012: 35m investment to improve access topalliative care including home support packagesand support for Palliative Care volunteers. 210mMore than 210 million spentannually on palliative care services.2014: 32m announced for further investmentin Last-Days-of-Life home support, flexiblefunding pool and after-hours helpline.On top of the annual investment in palliative care, the Government has committed additional funding:2017: 100m investment for enhanced Palliative Care services over four years.10* Provided by Professor K Eagar (2018) Palliative Care Outcomes Collaboration, University of Wollongong.
NSW HealthWho is this Framework for?The Framework is designed for use bythe NSW health system, including serviceproviders, policy makers, clinicians andprogram managers. It provides directionand advice for all NSW Health funded staffregardless of their profession, disciplineand level of expertise.The Framework applies across all settings whereend of life and palliative care is provided. This canrange from people’s homes, specialist palliative careunits, residential aged care facilities and acute carefacilities including intensive care units, emergencydepartments.Photo: Jasmin MerdanIt is relevant to all clinical specialties, including (butnot limited to) paediatrics, neurodegenerative andspecialties relating to chronic conditions, as well asin the care of the elderly and people with a diagnosisof cancer.NSW Health collaborates with a wide range oforganisations and service providers who also havea role in providing and supporting end of life andpalliative care. This includes the aged care sector,non-government organisations, the community,primary health care and other governmentdepartments who also support individuals whoare approaching and reaching the end of life, theirfamilies and carers.11
End of Life and Palliative Care Strategic Framework 2019-2024The scope of end of lifeand palliative careA phase of lifeThe terms ‘end of life’ and ‘palliativecare’ hold different meanings todifferent people. There are manydifferent definitions; it is important tounderstand the meaning of these termsin the NSW setting. In this Framework,‘end of life’ and ‘palliative care’ refersto the following:Care that optimises the quality of lifefor individuals, their families and carersapproaching and reaching the end oflife, reducing suffering and promotingdignity. It is for those with a life limitingcondition and often for those in thelast year of life. However, care may alsobe needed for either shorter or longerperiods depending on the individualneeds of the person, and their familiesand carers.All care provided to people who areapproaching or reaching the end oftheir life should consider individualneeds and preferences*.* Refer to glossary12End of life is a part of life, everyone will experience.End of life is the timeframe a person lives with, and isaffected and/or impacted by, a life-limiting condition,even if the prognosis is ambiguous or unknown.9 Thiswill be different for each person.An approach to providing careEnd of life care is provided when a person is‘approaching the end of their life’. Palliative careis an approach that improves the quality of life ofan individual and their families, facing problemsassociated with life-limiting illnesses. This is throughthe prevention and relief of suffering, by means ofearly identification, assessment and treatment ofpain and other symptoms – physical, emotional,psychosocial and spiritual.10Typically, end of life care is provided when a personis likely to die within the next 12 months due toprogressive, advanced or incurable conditions orold age.11 This will vary for each individual. It can bedifficult to identify when a person is entering thisphase of their life, but it is necessary care is focusedon their individual needs and preferences.People approaching and reaching the end of their liferequire varying levels of care and support, and theirneeds will fluctuate and change. Services need to beresponsive, coordinated and flexible in meeting thesechanging needs.It is important to recognise for some families andcarers, support and care needs may not end withthe death of their loved one. Bereavement andcounselling services are some ways ongoing caremay be provided.
NSW HealthProviders of end of life and palliative careMany people and organisations provide care andsupport to people approaching and reaching the endof their life. General practitioners, community basedproviders, residential aged care facilities, religiousgroups, support groups, friends and neighbours, allplay a role.These are provided by professional multidisciplinaryteams or services whose staff have advancedtraining in palliative care. Specialist palliative caremay provide consultation services to support, adviseand educate specialist and non-specialist teams toprovide end of life and palliative care to people withless complex needs.12All NSW Health staff have a role in providing careand support to people approaching and reaching theend of their lives. This may also include support tofamily and carers. People with more complex needsshould be able to access care provided by specialistpalliative care services.As the population continues toage, more people will need endof life and palliative care. Thisinvolves timely access to specialistsupport, if and when, it is needed.NSW Health’s partnerships withaged care and primary care willbe essential to ensure high qualitycare in hospital, community andaged care settings.Photo: xavieramau13
End of Life and Palliative Care Strategic Framework 2019-2024The VisionAll NSW residents, their families andcarers have access to and receive the bestpossible end of life and palliative care,based on their individual needs.This care places the person at the centre,where their preferences, values, beliefsand dignity are respected, and quality oflife matters most.For individuals, their families and carersPeople, their families and carers receiveindividualised care based on their unique needs andpreferences.For service providers and cliniciansService providers and clinicians have the necessaryskills and knowledge to provide individualised, highquality end of life and palliative care.Changing the conversationFamilies and carers may have to makedecisions about the care their lovedone receives. If people have not madea plan for their choices, this can bedistressing for families and carers, asthey are not sure they are making theright decisions for their loved ones.Having open conversations aboutdeath and dying allows people toconsider how they feel about differentoptions for end of life care, how
consistent and high quality end of life and palliative care services. I am pleased to share the End of Life and Palliative Care Strategic Framework, which . will assist NSW Health services to provide high quality care for individuals approaching
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