Principles For Palliative And End-of-Life Care In .

Principles forPalliative and End-of-Life Carein Residential Aged CareIntroductionThese principles have been developed collaboratively by Palliative Care Australia, Alzheimer’sAustralia, COTA Australia, Aged & Community Services Australia, Leading Age Services Australia,Catholic Health Australia and the Aged Care Guild to present a united commitment in recognisingthe diverse needs of residential aged care consumers, families, carers, aged care staff and serviceproviders in providing palliative and end-of-life care.Principles for Palliative and End-of-Life Care in Residential Aged Care

The Australian population is ageing and the needfor palliative and end-of-life care across all caresettings is increasing. As the population ages, sotoo does the demand for aged care in both thehome and in residential care settings.In 2010–11, 75% of the 116,481 people aged at least65 years who died in Australia had used aged careservices in 12 months before their death. The older aperson was when they died, the more likely they wereto have been accessing a service at the time of death.1It is important that older people are supported toreceive high quality end-of-life care in the setting oftheir choice, whether that be in their own home, inresidential aged care, in an acute care hospital or ina dedicated hospice service. Many people receivepalliative care in an acute care hospital, but there isa growing recognition that acute care hospitals arenot always the most appropriate settings from whichto provide dedicated end-of-life care that promotescomfort and quality of life.Nationally there were 231,500 permanent residents inAustralia in 2014–15 with completed ACFI appraisals, yetonly 1 in 25 of these indicated the need for palliative care.2Ensuring the availability of high quality palliativeand end-of-life care services in aged care facilitiesand people’s own homes, will enable more olderAustralians to have a good death, better supporttheir families and carers during the dying andbereavement processes and facilitate the betterallocation of scarce health resources.The principles draw upon the National ConsensusStatement: Essential Elements for Safe and HighQuality End-of-Life Care (The National ConsensusStatement) developed by the Australian Commissionon Safety and Quality in Health Care, particularly:3Palliative and end-of-life care delivered inaccordance with these principles will help olderAustralians in residential aged care to have the bestdeath possible, and to live the remainder of theirlives to the fullest with dignity and in comfort. It willalso support families and carers in caring for theirloved one and during the bereavement period andsupport staff to deliver the best care possible.The principles reflect the need to: recognise when an aged care consumer isapproaching the end of life assess, document and meet changing carerequirements ensure equitable access to high qualityend-of-life care ensure residential aged care services areadequately resourced to provide high qualitypalliative care ensure staff are adequately trained andsupported in delivering end-of-life care ensure care is holistic and seamless respect dignity, privacy and diversity, includingspiritual, cultural and gender diversity. understand and meet the needs of consumerswith dementia support families and carers in bereavement appropriately acknowledge the contributionof the consumer.Take care with the end as youdo with the beginning.4 Dying is a normal part of life and a humanexperience, not just a biological or medical event Patients must be empowered to direct their own care,whenever possible. A patient’s needs, goals andwishes at the end of life may change over time Providing for the cultural, spiritual and psychosocialneeds of patients, and their families and carers is asimportant as meeting their physical needs Recognising when a consumer is approachingthe end-of-life is essential to deliveringappropriate, compassionate and timelyend-of-life care.1. AIHW 2016, Palliative care in residential aged care. 2. AIHW 2015, Use of aged care services before death, Data Linkage Series Number 19.3. National Consensus Statement: Essential Elements for Safe and High-Quality End-of-Life Care, Sydney, ACSQHC, 2015, p.4.4. Attributed to Lao Tzu, quoted in A matter of life and death – 60 voices share their wisdom, Rosalind Bradley, Jessica Kingsley Publishers, 2016.Principles for Palliative and End-of-Life Care in Residential Aged Care2

PrinciplesThe following principles reflect the views of Palliative Care Australia, Alzheimer’s Australia, COTA Australia,Aged & Community Services Australia, Leading Age Services Australia, Catholic Health Australia and theAged Care Guild .12Consumers physical and mental needs atend-of-life are assessed and recogniseda. End-of-life care should be recognised aspart of the normal scope of practice ofresidential aged care, acknowledging thataged care facilities are home for manypeople at the end-of-life.b. All care is consumer and family centredand directed.c. The end-of-life needs of residents of agedcare services are assessed, documented andregularly reviewed.d. The stages of life-limiting conditions arerecognised, with end-of-life care needsacknowledged as requiring a palliativeapproach.e. Changes in consumer health status arerecognised and changing needs documentedand met.f.The mental health needs of consumers areassessed, documented and met includingtreatment for anxiety or depression if required.Consumers, families and carers areinvolved in end-of-life planning anddecision makinga. Consumers, families and carers are keptregularly informed of the stages of thelife‑limiting condition and treatment optionsand supported through treatment decisionsif circumstances change.b. Consumers, families and carers are supportedto develop and regularly review advance careplans, particularly if circumstances change.c. Consumers are supported to regularly discussand understand the implications of treatmentoptions and different end-of-life care choices,with their needs and wishes documented.d. Consumers, families and carers aresupported to change advance care plansor treatment decisions if circumstanceschange. Consumers, families and carersunderstand their right to request or declinelife-prolonging care.e. Consumers understand that unless requiredby law, doctors are not obliged to initiateor continue treatments that will not offer areasonable hope or benefit or improve thepatient’s quality of life.5f.Where appropriate, substitute decisionmakers are identified and actively involved indiscussing the consumer’s needs and wishes.5. Op.Cit (3), p5.Principles for Palliative and End-of-Life Care in Residential Aged Care3

35Consumers receive equitable and timelyaccess to appropriate end-of-life carewithin aged care facilitiesa. Consumers are able to access appropriatepalliative care support, regardless ofincome, background, diagnosis, prognosisor geographic location.b. Consumers receive adequate and timelypain and symptom management.c. Consumers and staff have access toappropriate equipment to support end-of-lifecare and manage symptoms.4End-of-life care is holistic, integrated anddelivered by appropriately trained andskilled staffa. End-of-life care is considered a corecompetency for aged care workers.b. End-of-life care is delivered by appropriatelytrained and skilled staff and teams.c. All staff with a caring role are trained andsupported to recognise when end-of-life care isrequired and a consumer’s needs have changed.d. Residential aged care services are adequatelyresourced to deliver and/or support thedelivery of end-of-life care. This includesaccess to specialised equipment and materials.e. Staff actively develop and document care plansand a care leader is identified to ensure care isappropriate, in accordance with the consumerand family wishes, coordinated and holistic.f.All residential aged care services have accessto specialist palliative care support whenrequired. We recognise that this is a particularchallenge for rural and remote locations.g. The roles of all those involved in end-of-life care arerecognised, respected and supported, includingspecialist palliative care, general practitioners,primary health care, pharmacists, nurses, carestaff, support and services staff, volunteers andthose providing social and spiritual support.The end-of-life care needs of consumerswith dementia or cognitive impairmentare understood and met within residentialaged carea. Dementia is recognised as a terminal illness.b. Where possible, staff will encourage andsupport end-of-life care planning anddecision-making with early involvement ofthe consumer, family and carers at the timeof a dementia diagnosis.c. Residential aged care services will provideappropriate care to consumers withbehavioural and psychological symptoms ofdementia or cognitive impairment, ensuring allappropriate services including end-of-life careare identified, documented and accessed.d. Substitute decision makers are activelyinvolved in discussing the consumer needsand wishes.6Consumers, families and carers aretreated with dignity and respecta. Consumers are treated with dignity andrespect throughout end-of-life care,including after death.b. Consumers, families and carers have their needfor privacy respected, including after death.c. Families, carers and friends are supported tospend as much time with a loved one as theywish, including after death.d. Intimate care needs are attended to regularlyand with respect to the consumer and theirfamily and carers.e. Consumer possessions are appropriately caredfor and returned to family (or as directed bythe consumer) in a timely manner after death.h. Staff in residential aged care servicesare appropriately supported in caring forconsumers with life-limiting conditions.i.Transfers to other services are based onnecessity or consumer/carer choice, withcare plans shared.Principles for Palliative and End-of-Life Care in Residential Aged Care4