Sad News, Sorry Business : simplebooklet.com

Acknowledgement Sad News Sorry Business Guidelines for caring for Aboriginal and Torres Strait Islanders people through death and dying was researched by and developed by the Aboriginal and Torres Strait Islander Cultural Capability Team State of Queensland Queensland Health 2015 The Artist Anna Pondi Title of the painting Don t feel like you re stuck in a web The Story The centre web is the circle of life the red and blue represents our veins the small circles are various cultures groups and families the foot prints are the steps we have to take throughout our lives with our spirits behind us the stars are germs and diseases and the handprints are of a baby People Sitting Emu Campsite Waterhole Animal Tracks Sandhill Bush Tucker Hunting Boomerang Rain Waterholes and Running Water Coolamon Honey Ants Boomerang Digging Sticks Spears Kangaroo Tracks Woman Man Woomera Shield Tracks Waterholes Meeting Place Person Goanna Disclaimer The information set out in this publication is current at the date of first publication and is intended for use as a guide of a general nature only and may or may not be relevant to particular patients or circumstances Nor is this publication exhaustive of the subject matter Persons implementing any recommendations contained in this publication must exercise their own independent skill or judgement or seek appropriate professional advice relevant to their own particular circumstances when so doing Compliance with any recommendations cannot of itself guarantee discharge of the duty of care owed to patients and others coming into contact with the health professional and the premises from which the health professional operates While the text is directed to health professionals possessing appropriate qualifications and skills in ascertaining and discharging their professional including legal duties it is not to be regarded as clinical advice and in particular is no substitute for a full examination and consideration of medical history in reaching a diagnosis and treatment based on accepted clinical practices Accordingly The Southern Adelaide Local Health Network and its employees and agents shall have no liability including without limitation liability by reason of negligence to any users of the information contained in this publication for any loss or damage consequential or otherwise cost or expense incurred or arising by reason of any person using or relying on the information contained in this publication and whether caused by reason of any error negligent act omission or misrepresentation in the information This booklet was compiled with permission from the Queensland Cultural Capability team by Bronwyn Pesudovs RN and Daphne Perry BN Grad Dip Cardiovascular Nursing as part of the LIGHTHOUSE PROJECT Phase II Email bronwyn pesudovs sa gov au or daphne perry sa gov au page 2

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Contents Believe that you can make a difference 4 The final stages of life 14 Purpose 5 Before the Passing 14 Cultural respect and recognition 6 What care planning should be considered in anticipation for this 14 Culture and healthcare 7 Communication 8 The time of Passing 14 Communication following the Passing 14 Language 8 Prepare for possible cultural implications 15 Body Language 8 Traumatic or Sudden Death 15 Communicating a diagnosis and prognosis 8 The time after Passing 15 Pain and its management 8 Aboriginal Cultural Protocols and Practices 16 Relationships and Partnerships 9 Rapport with the patient and family 9 How can cultural wishes of the family of a deceased patient be respected 16 Essential elements of building rapport 9 Family escort for the deceased 16 Working together with family members 10 Financial Barriers 17 Patient Escort 10 Coronial Investigations 17 Professional Interpreters 10 Open Disclosure 17 When should an interpreter or translator be used 11 Autopsy and Treatment of the Body of the Deceased 18 Family interpreters 12 Glossary 19 Aboriginal Liaison Officers 13 Resources and links 20 Aboriginal and Torres Strait Islander Health Workers 13 We acknowledge that the land on which The Southern Adelaide Local Health Network SALHN conducts business are the traditional lands of the Kaurna People and that we respect their spiritual relationship with their country We also acknowledge the Kaurna People as the custodians of the Adelaide Region and that their cultural and heritage beliefs are still as important to the living Kaurna People today Please be aware that this Sad News Sorry Business booklet may contain photos of Aboriginal and or Torres Strait Islander people who may be deceased Sad News Sorry Business FMC CTSU Lighthouse Project Team Version May 2016 page 3

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Believe that you can make a difference We believe that Aboriginal Health is everyone s business Start with understanding that we all have a role to play in improving health outcomes for Aboriginal people Sharon Meagher Aboriginal Education Development Officer Centre for Education and Training Children Youth and Women s Health Service Women s and Children s Hospital Campus Karpa Ngarrattendi means to support to heal Aboriginal Health Liaison Officers play a major role in hospitals in many different areas such as supporting those Aboriginal patients and their families who use Flinders Medical Centre and the Noarlunga Hospital The Aboriginal Health Liaison Officers ensure that Aboriginal and Torres Strait Islander patients their escorts and family understand medical procedures and hospital routines They also liaise with health professionals to ensure all aspects of the patient s journey are considered in developing treatment plans Theresa Francis Regional Manager Aboriginal Health Services Southern Adelaide Local Health Network Noarlunga Clovelly Park Minunthi Tapa Inparrititya creating Pathways to meet one another and the Aboriginal Liaison Unit Karpa Ngarrattendi Flinders Medical Centre page 4

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Purpose The end stage of life is a very sensitive and significant time for patients and their loved ones This document aims to provide insight into appropriate cultural knowledge and practices and identify tools that will assist staff from the Southern Adelaide Local Health Network in providing culturally and clinically responsive care for Aboriginal and Torres Strait Islander Peoples and their families through this significant stage of life For Aboriginal and Torres Strait Islander Peoples the time before and following death are subject to a number of customary practices These practices have meanings that are sacred to Aboriginal and Torres Strait Islander Peoples and disclosing them is not the intention of these guidelines The Southern Adelaide Local Health Network recognises the rights of Aboriginal and Torres Strait Islanders to practice their cultural and spiritual traditions and customs without discrimination or judgement Aboriginal and Torres Strait Islander Peoples are not a homogenous group and must be recognised as two distinct and diverse cultures Furthermore customary practices vary between and within Aboriginal and Torres Strait Islander tribal groups It must be recognised that a single hospital or health service may be accessed by a number of tribal groups each with their own cultural practices language and a different view on caring for a person at the end of life stage These guidelines are intended to be respectful and sensitive to this diversity hence aiming to provide general guidance and broad information for staff who work with The Southern Adelaide Local Health Network SALHN Please note that some generalisations can be made for Aboriginal people and Torres Strait Islander people in this document Where possible guidance will be provided with respect to the two distinct peoples Sad News Sorry Business FMC CTSU Lighthouse Project Team Version May 2016 page 5 Photo Georgie Sharp Grand Old Myall Tree

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Cultural respect and recognition Cultural Respect is the recognition protection and continued advancement of the inherent rights cultures and traditions of Aboriginal and Torres Strait Islander Peoples Cultural Respect is about shared respect Cultural Respect is achieved when the health system is a safe environment for Aboriginal and Torres Strait Islander Peoples and where cultural differences are respected It is a commitment to the principle that the construct and provision of services offered by the Australian health care system will not wittingly compromise the legitimate cultural rights practices values and expectation of Aboriginal and Torres Strait Islanders Peoples The goal of Cultural Respect is to uphold the rights of Aboriginal and Torres Strait Islander Peoples to maintain protect and develop their culture and achieve equitable health outcomes SA Heath Aboriginal Cultural Respect Framework AHMAC Cultural Respect Framework for Aboriginal Torres Strait Islander Health 2004 2009 p 7 Death varies in meaning between all cultures Appreciating the differences in the meaning of death is essential for providing the best care for all patients at their final stages of life The term passing is generally a more accepted and sensitive terminology to use when discussing death or dying with Aboriginal and Torres Strait Islander Peoples due to their spiritual belief around the life cycle and that life is part of a greater journey Prior to colonisation Aboriginal and Torres Strait Islander Peoples had well established beliefs and practices that had been handed down through the generations Australia was home to hundreds of different traditional groups each with their own language customs relationship with their environment and beliefs page 6 Three significant factors dramatically altered Aboriginal and Torres Strait Islander customs Colonisation and Religion Colonisation of Australia caused a significant impact to traditional customs with the introduction of Christianity Western lifestyles and religions were imposed and traditional people and cultures suppressed Almost all aspects of traditional cultural ways were forbidden including death and dying as well as the passing down of this knowledge Past Government Policies Dispossession land was forcibly taken Dislocation the people forcibly removed from their land Segregation separation and isolation from Western people yet at the same time Assimilation forced to take on Western Cultural practices Removal of mixed race children from their mothers families and communities All of the above greatly impacted traditional Aboriginal and Torres Strait Islander culture and customs Immigration Australia has seen an influx of people from many different countries since colonisation Every nationality has their own culture inclusive of their own beliefs about death and dying which their descendants may practice today Some beliefs and practices from immigrants have impacted on Aboriginal and Torres Strait Islander Peoples resulting in further variation between different traditional groups Today these impacting factors mean that many cultural practices have been modified or lost However some Aboriginal and Torres Strait Islander Peoples still maintain traditional beliefs and practices that are an essential part of the life and death cycle

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Culture and healthcare It is our professional duty to deliver care that is appropriate to our patient including care that is responsive to our patients needs as expressed in their way and from their perspective Differences exist between non Indigenous and Aboriginal and Torres Strait Islander Australian s perspectives on healthcare well being death and dying A common contrast is the meaning of a hospital admission For non Indigenous people the hospital is a place to heal to fix health problems and to rehabilitate For Aboriginal and Torres Strait Islander people the hospital may be seen as a place one goes to die Returning to Country Aboriginal and Torres Strait Islander patients may request to return to their homelands to be close to their family and country for the final stages of their life This is an understandable request however it may be complicated if the patient is on chronic therapy such as renal dialysis or receiving palliative care The desire to return to country will be more important to them than the treatment of their disease In this case it is important to work in partnership with the primary health service families and the community Sad News Sorry Business FMC CTSU Lighthouse Project Team Version May 2016 page 7 Photo Georgie Sharp between Port Augusta and Quorn South Australia Salt Bush Hills on a cloudy day

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Communication Effective communication is an essential element to ensuring the right care for the patient and their family Often taken for granted it is not until we reach a barrier that we realise how vital communication is to healthcare delivery and to supporting a patient and their family through end of life Language Verbal language was vital to Aboriginal and Torres Strait Islander cultures pre colonisation Languages were rarely written down Knowledge was verbally handed down from generation to generation and embedded through storytelling depiction through art songs dance and other ceremonies Despite being suppressed to near extinction some Aboriginal and Torres Strait Islander languages are still spoken Speaking a traditional language and recognising it as your first language is more common for Aboriginal and Torres Strait Islander Peoples residing in remote areas Some Aboriginal and Torres Strait Islander people identify English as a second or third language and therefore may experience difficulty understanding both Standard English and medical terminology Being mindful to use appropriate language can reduce the level of misunderstanding and confusion for patients and their families Traditional languages Over one third of Aboriginal people 39 and over half of Torres Strait Islander people 56 speak or have spoken some words of their traditional language One in nine Aboriginal and Torres Strait Islander Peoples aged 15 years and over do not identify English as their first language The Australian Institute of Health and Welfare 2015 The Health and Welfare of Australia s Aboriginal and Torres Strait Islander Peoples http www aihw gov au WorkArea DownloadAsset aspx id 60129551281 page 8 Body Language Body language expectations vary amongst Aboriginal and Torres Strait Islander cultures It is important to acknowledge that there are local practices which can be learned with experience Speak with your local Aboriginal and Torres Strait Islander Hospital Liaison Officer or Health Worker who can advise on local practices or source information to guide you if the patient is from another community For further advice and information refer to the SALHN Aboriginal and Torres Strait Islander Patient Care Guideline Communicating a diagnosis and prognosis Delivering a diagnosis and prognosis to Aboriginal and Torres Strait Islander patients can be difficult considering the cultural and communication barriers Understanding and demonstrating respect for the beliefs of the patient and their family will assist with developing trust and rapport The following difficulties may be encountered The patient and their family may be reluctant to acknowledge bad news or may not understand what it immediately means for themselves or their kin The patient and their family may need time to discuss the information to gain a complete understanding for all involved Some Aboriginal and Torres Strait Islander Peoples maintain their cultural beliefs which is inclusive of spiritual beliefs about the causes of poor health These beliefs may conflict with Western explanations and diagnosis of illnesses Pain and its management We are all susceptible to pain However we differ in the way pain is experienced and expressed for example contrast in pain thresholds and levels of analgesic effect Misinterpretation of the intensity and severity of pain can lead to insufficient pain management

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Aboriginal and Torres Strait Islander people may be reserved and unobtrusive when in pain and may not openly complain This is often due to embarrassment or reluctance to be any trouble to healthcare staff This is in contrast to inaccurate social stereotyping which sometimes leads to labelling Aboriginal and Torres Strait Islander people as difficult patients or sometimes drug seekers Patients understanding of pain management medications may also vary As the health care provider it is imperative to inform patients of their informed options for pain management while in our care Patients assumptions about the strength and immediacy of the analgesic effects and their side effects are common issues for health care providers Be mindful that Men s and Women s Business and the protocols surrounding these may cause barriers for the patient to openly talk about pain Be sure to ask the patient if they prefer to consult with someone of their own gender Relationships and Partnerships Forming positive relationships with key people associated with the patient is essential in providing optimal care Establishing and maintaining relationships and partnerships will ensure delivery of quality healthcare and assist community engagement When possible these meaningful relationships should be developed proactively and as early as possible During the time of death is a difficult and inappropriate time to do so Building rapport is therefore especially important when caring for an Aboriginal and or Torres Strait Islander patient as this is an opportunity to prove one s credibility and trustworthiness Building rapport with the patient and their family is not necessarily time consuming as it is the quality of communication that is most valuable rather than the amount of time Essential elements of building rapport Be respectful of the patient s cultural requirements and ask questions about their culture Mutual respect and reciprocity is a common cultural value for Aboriginal and Torres Strait Islander people Be honest Be proactive in providing orientation and clear and simple explanations for treatments and daily routines e g why procedures have been postponed or cancelled where the patient kitchen is where waiting areas are located Do not underestimate the power of conversation that occurs in Aboriginal and Torres Strait Islander Communities Aboriginal and Torres Strait Islander people talk about their health experiences to family and community members such as how they were treated and interactions with staff If it is a positive experience this will benefit the reputation of the organisation as well as your own however a negative experience will reinforce barriers between the service and Aboriginal and Torres Strait Islander people Rapport with the patient and family Aboriginal and Torres Strait Islander people may have a general feeling of distrust of nonIndigenous health staff This may be due to historical factors or possibly feelings of being judged or being treated unfairly in unfamiliar environments such as mainstream health services Sad News Sorry Business FMC CTSU Lighthouse Project Team Version April 2016 page 9

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Working together with family members Establish rapport and understanding with family members as early as possible In Aboriginal and Torres Strait Islander cultures certain family members hold specific roles and responsibilities and will be able to assist with delivery of care at this time Understanding the cultural roles and responsibilities of family members and escorts will help ensure culturally appropriate care is received by the patient Patient Escort Some Aboriginal and Torres Strait Islander patients who are transferred between remote regional and metropolitan communities may be accompanied by an escort The patient escort is usually a close family member who plays an important role supporting the patient and sometimes interpreting page 10 For both the patient and the escort transferring away from their own community and family to a city environment may add significantly to their anxiety The escort may also require support and assistance for example overcoming language barriers Ensure that their emotional needs are also met as they are not only caring for a sick member of their family but they may have family at home such as children and grandchildren that they may be missing or worried about Professional Interpreters South Australian Government agencies are required to use Aboriginal languages interpreters and translators where communication in the English language will be a barrier to receiving optimal healthcare services

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Photo Georgie Sharp Taste of the Outback What are the benefits of using interpreting and translating services When should an interpreter or translator be used Ensures that Aboriginal people have equal access to information about healthcare processes and services An interpreter or translator should be used when it is apparent that the English language is a barrier for an Aboriginal person or group in communicating with healthcare staff Supports informed decision making on critical matters which will have a significant impact on a person s life Builds better relationships between healthcare providers and Aboriginal people and communities This includes both where a person or group is unable to understand a communication and where a person is unable to express themselves or respond to a communication Improves healthcare service delivery and program development Demonstrates respect for Aboriginal languages and culture Demonstrates a willingness to understand patient concerns Sad News Sorry Business FMC CTSU Lighthouse Project Team Version April 2016 page 11

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Broadly speaking It is particularly important that interpreter and or translation services are provided where informed consent is required or where there is the potential for a decision or action to have a critical impact upon a person s life This would include for example decisions around a person s health issues of child protection discussion of legal matters or participation in government consultation processes If in doubt it is always best to ask a patient or client directly if they require the provision of interpreting or translating services Aboriginal Liaison Officers within your service can assist Consent should be sought from the patient before involving interpreters in their care It is possible that there may be distrust between groups If you require further assistance or information Department of the Premier and Cabinet Aboriginal Affairs and Reconciliation Division Telephone 1800 127 001 Website www mobilelanguageteam com au information interpreting_translation_services Family interpreters If a family member were to provide interpreter assistance consider the following Certain topics are taboo and cannot be discussed between certain family members e g information regarding women s health cannot be discussed with a male family member Some subjects may be embarrassing to certain members of the family especially younger members page 12 How can you ensure family interpreters are interpreting accurately Ideally one member of the family should be identified upfront as the spokesperson contact family member for the patient s matters Identify what needs to be translated prior to speaking with the family spokesperson If there is not one spokesperson clarify to the family what needs to be discussed with the patient and have the family decide who will help interpret Strongly emphasise the importance of accurate information Limit the use of medical jargon Use diagrams to assist with complex medical explanations Most medical problems do not have a traditional name e g cancer Be mindful of this and explain in simple language

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Aboriginal Liaison Officers Supporting the patient and family Aboriginal Health Liaison Officers play a major role in hospitals in many different areas such as supporting those Aboriginal patients and their families who use Flinders Medical Centre and the Noarlunga Hospital The Aboriginal Health Liaison Officers ensure that Aboriginal and Torres Strait Islander patients their escorts and family understand medical procedures and hospital routines They also liaise with health professionals to ensure all aspects of the patient s journey are considered in developing treatment plans Support is essential for a person in the final stage of life For Aboriginal and Torres Strait Islander Peoples the family and kinship system provide a wealth of support Support may be difficult if the patient is not in their home town and away from their family In such circumstances the involvement of the local Aboriginal Liaison officer or health worker could be beneficial The Aboriginal Liaison Team or an officer should be contacted on admission and their advice should be sought when planning care for the patient during their stay They will be able to determine the cultural appropriateness of care and provide a vital medium between the health care team the patient and their family Aboriginal Liaison Officers can play an extremely important role when caring for a patient who is dying or has passed Aboriginal and Torres Strait Islander Health Workers Aboriginal and Torres Strait Islander health workers are key conduits between the health care team and the patient and their family Health workers can be found working in Aboriginal and Torres Strait Islander communities throughout Australia If a patient is transferred from a remote community the health workers from that community will be your best contact to assist with communication with the patient Seek assistance from your local Aboriginal Liaison Officer or search for contact details of the community health service in the community that the patient is from as sometimes a patient is transferred multiple times and the medical notes may not reflect this The health worker can also assist with explaining any cultural expectations on behalf of the patient contact family support for the patient clarify the patient s medical history family history or dietary requirements and provide advice on discharge planning i e what services are available to the patient in the community Sad News Sorry Business FMC CTSU Lighthouse Project Team Version May 2016 page 13

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The final stages of life Before the Passing The time of Passing In the lead up to an expected death there is usually a gathering of immediate and extended family and friends This will likely take place at the family home but hospital staff should anticipate a large number of visitors to see the patient if the patient lives locally Groups may also congregate in the hospital or nearby Based on the belief that life is a part of a greater journey it is cultural practice to prepare the person for the next stage in their journey The time of passing is very traumatic for family and friends of the deceased In rural and remote areas the whole community will experience grief and mourning and business may shut down for a period of time out of respect for the loss The gathering of family and friends is a mark of respect for the patient What care planning should be considered in anticipation for this Consider providing a larger private room for the patient Due to the distance from possible remote and interstate locations that family members will travel from special considerations for visiting hours should be factored in for an Aboriginal or Torres Strait Islander patient A family member may request to stay overnight with the patient When allocating patients consider how you can accommodate this request Develop rapport and work with the family This is very important in providing the best care possible to the patient ensuring cooperation and mutual understanding Anticipate many questions Some people may however be very quiet they may have many questions to ask but may be shy or intimidated and not know how or what to ask With the consent of the patient and or their family ensure the involvement of the Aboriginal and Torres Strait Islander Hospital Liaison Officer or Health Worker in caring for the patient Some Aboriginal and Torres Strait Islander families may request a visit from the clergy or chaplain Ensure that you have chaplain support services information readily available page 14 This time will set certain cultural protocols in motion requiring sensitivity and understanding Cultural duties for the extended family and relatives following the death include supporting the immediate bereaved family as well as feeding transporting and housing mourners Such support requires the cooperation of the extended family and friends to share the load so as to help the bereaved family have the time to pay respect to the deceased The legal requirements of death i e death certificate notification of reportable deaths are followed as per usual Communication following the Passing In Aboriginal culture it is taboo to mention or in some cases write the name of a deceased person Aboriginal people believe that if the deceased person s name is mentioned the spirit is called back to this world Images film and photographs or broadcasting the voice of the deceased person may also be against protocol and may cause serious offence Contacting the next of kin following the passing is not always correct practice for Aboriginal and Torres Strait Islander people In some cases the senior member of the family or senior in law might be the best person to contact It is culturally inappropriate for a non Indigenous health staff member to contact and inform the next of kin of a person s passing This breach of cultural protocol may cause significant distress for Aboriginal and Torres Strait Islander families connected to the person who has passed

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As a matter of best practice seek cultural guidance from the local Aboriginal and Torres Strait Islander Hospital Liaison Officer Health Worker the family group or the wider community Prepare for possible cultural implications Early in admission identify whether the patient is of Aboriginal and or Torres Strait Islander origin Then identify who would be the correct person to contact in the event of deterioration in health and passing of the patient Death is a taboo topic so ensure that you respectfully ask the patient or one of the senior members of the family in private about who would be the contact person in case of health deterioration or passing Ask the local Aboriginal and Torres Strait Islander Hospital Liaison Officer or Health Worker for the appropriate word to use in substitute for the patient name following passing Also be attentive to the deceased person s family to what words they use Be mindful of any Aboriginal or Torres Strait Islander staff that may be related to the patient This can be established proactively by asking the patient or the family if they have family working in your facility Ensure that respect is given to those staff members by allowing cultural protocol to inform them Traumatic or Sudden Death Slow deterioration of health and expected deaths are more readily accepted by Aboriginal and Torres Strait Islander families and communities than sudden deaths Sudden death in Aboriginal and Torres Strait Islander cultures is believed to be associated with sorcery and blame which can lead to payback These issues are essential to understand especially for South Australian Health staff working in remote and regional areas Sorcery is believed to be a contributing factor in many sudden deaths It is as real to many Aboriginal and Torres Strait Islander Peoples as a blocked artery or a diabetic ulcer and should not be dismissed as mere superstition Whenever possible build rapport with your local Aboriginal and Torres Strait Islander Hospital Liaison Officer or Health Worker or community leaders if working in community These relationships should be proactively developed and maintained and will be beneficial if caring for Aboriginal and Torres Strait Islander peoples who find themselves in highly distressing situations Consider the following in the event of a traumatic or sudden death Anticipate that there could be strong reactions Maintain respect and professionalism It is important to appreciate and respect differences in perspective to avoid aggravating situations Be honest and sincere when supporting the family Practice good communication skills The time after Passing The time following the passing requires continuing support sensitivity and respect for family and friends and respect for cultural protocols and practices Refer to Aboriginal cultural protocols and practices below Additional guidance is also provided for the formal processes of open disclosure and coronial investigations Sad News Sorry Business It is important to remember that customary practices following death differ between Aboriginal and Torres Strait Islander people Contact your Aboriginal Liaison Officer for guidance However following the passing of a patient some general protocols are advised when communicating with the family In some communities it is advisable to avoid eye contact with the family members and friends as a mark of respect If staff wish to express their condolences a silent hand shake without eye contact will suffice In some instances the family may request a priest or chaplain to visit the deceased person s room which is believed to evoke the spirit from the room Traditionally in Aboriginal culture this may include a smoking ceremony Sad News Sorry Business FMC CTSU Lighthouse Project Team Version April 2016 page 15

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Aboriginal Cultural Protocols and Practices Aboriginal cultural protocols following death generally have two purposes sending the spirit onto the next world Identifying the cause of death Many Aboriginal tribal groups share the belief that this life is only part of a longer journey When a person passes away the spirit leaves the body The spirit must be sent along its journey otherwise it will stay and disturb the family There are two significant practices that occur following death that assists with the journey of the spirit The name of the deceased is not mentioned for a long period of time from several months to years This is to ensure that the spirit is not held back or recalled to this world A smoking ceremony is conducted The smoking of the deceased person s belongings and residence also assists with encouraging the departure of the spirit Aboriginal and Torres Strait Islander groups also practice means of identifying causes of death These are practiced by Elders who hold the cultural authority to do so and the causes in question are usually of a spiritual nature The ceremonies are likened to an autopsy of Western practice These practices may be sacred in nature and therefore not discussed openly Pending the smoking ceremony and investigations family and friends are sometimes relocated away from the deceased person s house In some areas the family resides in sorry camps which can be some distance from modern amenities and services A smoking ceremony A smoking ceremony is an ancient custom among Aboriginal Australians that involves smouldering various native plants to produce smoke which they believe has cleaning properties and the ability to ward off bad spirits Smoking ceremonies are performed at major events such as births and deaths page 16 How can cultural wishes of the family of a deceased patient be respected Be aware that the practices described above may occur There can be restrictions to interfering with the deceased person s body which deem traditional investigations impossible However a report of the post mortem investigation or coronial inquest should be discussed with and made available to the family as soon as possible Family members may request a lock of hair from the deceased person s body This is usually done in private so avoid drawing attention to it If this is requested Speak to the treating doctor to determine if this is possible Document this in the patient notes Extended family Be aware and respectful of relevant extended family and kinship structures when working with Aboriginal people Ensure that extended family is included in important meetings and in making important decisions The closeness of the extended family can be such that the death of a cousin or uncle could carry the same impact as the death of a brother or father Any family loss or breakdown is likely to impact on an individual the family the extended family and the community in general Family escort for the deceased One particular family member may be the appropriate person to escort an Aboriginal or Torres Strait Islander deceased person from a metropolitan or regional hospital back to their community Communicate with the family to ensure that the right person has been identified and that the health service has their name and contact details This will ensure smooth operations for transferring the deceased person back to their community

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Financial Barriers Open Disclosure Some families cannot afford the cost of a funeral However Aboriginal and Torres Strait Islander Peoples can contact their local Community Council to discuss what options are available towards financial assistance Refer to Open Disclosure Australian Commission on Safety and Quality in Health Care to assist with managing this process with Aboriginal and Torres Strait Islander patients and their families http www safetyandquality gov au our work open disclosure Contact your local Aboriginal and Torres Strait Islander Liaison Officer or Health worker who may refer you to the appropriate services Resource http www sa gov au topics health andwellbeing when someone dies Coronial Investigations The unforeseen nature of a reportable death that may lead to a coronial investigation is often associated with highly emotional reactions from family and friends Considering the lack of trust that may exist between Aboriginal and Torres Strait Islander Peoples with non Indigenous people and the extensive family system the reaction has potential to be large and quite negative Refer to the SA Health Coronial Process and The Coroners Act 2003 Policy Directive which outlines the professional legal cultural and ethical responsibilities of South Australian Health and staff members involved A good understanding of the process is essential to educate the family about the process What Aboriginal people seek from a coronial process is similar to what everyone else seeks in the same circumstances but the frequency of our deaths makes it an even higher priority We want the following 1 to find out the TRUTH of how the death happened 2 to find out who if anybody has RESPONSIBILITY for the death and Open disclosure Open disclosure is the discussion of an incident that results in harm to a patient while receiving healthcare The elements of open disclosure are an expression of regret a factual explanation of what happened the potential consequences and the steps being taken to manage the event and prevent recurrence http www safetyandquality gov au wpcontent uploads 2013 03 Australian OpenDisclosure Framework Feb 2014 pdf Factors to consider re open disclosure Plan the open disclosure session with the family identify what will be shared how and in what order Your confidence and preparedness will be viewed as your professionalism and trustworthiness Consult your local Aboriginal Liaison Officer in planning the opening disclosure session Ensure that all the required family members are invited and present on the day Check the appropriateness of setting and environment for a family gathering to ensure the privacy and comfort of family Seek guidance in anticipation of very emotional family members Clarify whether or not you can use the name of the deceased person and identify what name is suitable 3 PROTECTION from it happening again We want to be able to understand all of the process even though we are distraught with the grief at our loss Gerry Moore CEO Aboriginal Legal Service NSW ACT Ltd Sad News Sorry Business FMC CTSU Lighthouse Project Team Version April 2016 page 17

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Autopsy and Treatment of the Body of the Deceased Respect for both the deceased person and their family and loved ones is very important in this part of the process Aboriginal customs and protocols for the handling of a body vary from region to region let alone state to state The health staff and coroner will need the assistance of Indigenous people familiar with the local customs of the community in which the deceased lived Ask for help from the Aboriginal Liaison Officers in identifying who is best to speak to regarding this The smallest deviation from what the family expect in this process will negatively affect the confidence and comfort of the family members especially if such deviation happens without careful and detailed communication to the family as to the reasons for it page 18 Photo Jacqui Barker Stubbs Waterhole Arkaroola If there is to be an autopsy the family want to be central players in the process and require respectful communications about the timing location and personnel of an autopsy The issue of any body parts that are removed for further testing and their return is highly sensitive and needs special attention in the explanation to family members The release of the body for burial needs to be closely co ordinated with the desires of the family for the funeral arrangements but it should be emphasised that although disappointment may occur at any delay it is overall more important that all necessary investigations be conducted upon the body of deceased before release for burial

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Glossary Aboriginal adjective Coronial autopsy A person of Aboriginal descent who identifies as Aboriginal and is accepted as such by the community in which he or she lives the original inhabitants of the Australian continent and surrounding islands Post mortem investigation on a reportable death Death Death may also be referred to as passing of a patient in this document Dying Dying may also be referred to as the final stage journey of life in this document Patient escort Family Hospital autopsy A family member who escorts the patient between health facilities In Aboriginal and Torres Strait Islander culture the term family may vary in definition to non Indigenous culture This is illustrated in the use of immediate family titles being used across the extended family sphere i e brother and sister are all the males and females of the same generation Post mortem investigation on a non reportable death Aboriginal and Torres Strait Islander Health Worker Indigenous Heath Worker Person who works within a primary health care framework to achieve better health outcomes and better access to health services for Aboriginal and Torres Strait Islander individuals families and communities required to hold the specified Aboriginal and Torres Strait Islander primary health care qualification There is a genuine occupational requirement that the occupants of these positions are of Aboriginal or Torres Strait Islander origin Aboriginal and Torres Strait Islander Hospital Liaison Officer Person in position usually based in regional and metropolitan hospital to provide a range of support for staff patients and their families There is a genuine occupational requirement that the occupants of these positions are of Aboriginal or Torres Strait Islander origin Open disclosure The open discussion of an incident that results in harm to a patient while receiving healthcare The elements of open disclosure are an expression of regret a factual explanation of what happened the potential consequences and the steps being taken to manage the event and prevent recurrence Formal open disclosure is the structured process to ensure communication between the patient senior clinician and the organisation executive The process consists of an open disclosure team involving a clinical team a senior clinician trained as an open disclosure consultant and hospital executives Sad News Senior member of the family senior in law Sorry Business Torres Strait Islander term that refers to the passing of a person The family members to go to for advice on matters surrounding the death of an Aboriginal or Torres Strait Islander person Aboriginal term that refers to the passing of a person Sorry camps Temporary camps often away from original dwellings that are used by the wider family during the initial time following the death of a person in Aboriginal culture Torres Strait Islander A person of Torres Strait Islander descent who identifies as a Torres Strait Islander and is accepted as such by the community in which he or she lives the original inhabitants of the Torres Strait Islands Sad News Sorry Business FMC CTSU Lighthouse Project Team Version May 2016 page 19

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Resources and links Austin Health Respecting Patient Choices Advance Care Planning with Aboriginals and Torres Strait Islanders http start2talk org au resources_for_aboriginal_ workers Australian Government Department of Health Providing culturally appropriate palliative care to Aboriginal and Torres Strait Islander Peoples Resource Kit The Secretariat of National Aboriginal and Islander Child Care Sorry business http www supportingcarers snaicc org au connecting to culture sorry business Queensland Health Cultural Capability Statewide Team Sad News Sorry Business https www health qld gov au atsihealth documents sorry_business pdf http webarchive nla gov au gov 20140801064435 http www health gov au internet main publishing nsf Content palliativecare pubs indig resource htm Indigenous Issues in the Coronial System Presentation to the AsiaPacific Coroners Society Conference Canberra Creative Spirits Gerry Moore Chief Executive Officer and John McKenzie Chief Legal Officer Aboriginal Legal Service NSW ACT Ltd November 2009 Mourning an Aboriginal death http www creativespirits info aboriginalculture people Department for Health and Aging Oct 2013 SA Health Aboriginal Culture and History Handbook page 19 https www sahealth sa gov au wps wcm con nect 0205b7004289a89398b9dcd8cec31b16 SA He 20alth Aboriginal Culture and History Handbook 20pdf MOD AJPERES CACHEID 0205b7004289a8 209398b9dcd8cec31b16 http www alsnswact org au media BAhbBlsHOgZmSSIhMjAxMy8wNy8xNS8yMV81O V81Nl80OTdfZmlsZQY6BkVU 21_59_56_497_file Georgie Sharp Photographer 2006 Grand Old Myall Tree Taken on the road to Roxby Down and Andamooka Page 5 https www flickr com photos georgiesharp Georgie Sharp Photographer 2008 Salt Bush Hills Between Port Augusta and Quorn South Australia Flickr Page 7 healthInfonet https creativecommons org licenses by nc 2 0 Key facts Grief loss and trauma Georgie Sharp Photographer 2013 Taste of the Outback AALBG Flickr Page 10 11 http www healthinfonet ecu edu au uploads key facts sewb grief keyfacts pdf https creativecommons org licenses by nc 2 0 SA Health Coronial Process and The Coroners Act 2003 Policy Directive Jacqui Barker Photographer Stubbs Water Hole Flinders Ranges Page 18 http www sahealth sa gov au wps wcm con nect 3ab0de004be913ce97ab970719f20a00 Coronial Process Coversheet_Policy_V6_ August 2013 pdf MOD AJPERES CACHEID 3ab0 de004be913ce97ab970719f20a00 CACHE NONE http www jacquibarkerphotography com page 20

Sad News, Sorry Business

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