Aboriginal and Torres Strait Islander cancer care resource guide

Transcription

1 Aboriginal and Torres Strait Islander cancer care resource guide

2 Aboriginal and Torres Strait Islander cancer care resource guide Acknowledgements Peter Mac acknowledges the generous support provided by many contributors to the development of the Aboriginal cancer care resource guide. Many people, both Aboriginal and non-aboriginal, gave their time to provide valuable information and share personal experiences to shape this guide to help Peter Mac staff deliver the best possible care to Aboriginal patients, in a culturally sensitive manner. We especially acknowledge: the ACCAP Internal Advisory Committee the Department of Health Cancer Council Victoria Victorian Aboriginal Health Service Victorian Aboriginal Community Controlled Health Organisation Access Services for Koories General Practitioners Victoria. Naming convention Throughout this guide, the term Aboriginal refers to Aboriginal and Torres Strait Islander people. Aboriginal is used in preference to Indigenous ; however Indigenous is retained when it is part of the title of a report or program. Koori refers to Aboriginal people from south eastern Australia. As not all Aboriginal people living in Victoria are Koori, this is only used when part of the title of a report or program. Context It is estimated that Aboriginal people have been living in Australia for between 40,000 and 80,000 years. As Aboriginal people lived as hunter-gathers, the land has strong spiritual significance within their culture. The late 1700s, British colonisation introduced deadly diseases to which Aboriginal people had very limited resistance, and multiple massacres were perpetrated by European settlers, creating immense loss of life. After this invasion, in the 1860s, the removal of mixed race children from their families into orphanages or adoption to European families begun, in an effort to educate and train them into the European way of life; this misplaced children are often referred to as The Stolen Generation. During this time, Aboriginal people were forced off their land, abused and used for cheap labour. It was not until after the 1967 referendum that Aboriginal people were regarded as Australian citizens, granted equal rights and eligibility to vote. The after-effects of colonisation still impact Aboriginal people in Australia today, who suffer from unacceptably low life expectancy gaps, continued discrimination and racism. In addition, disadvantages are experienced by Aboriginal people within the areas of education, housing, and income. Aboriginal culture Aboriginal culture is vibrant, diverse and continues to evolve. It is important to note Aboriginal culture is not homogenous; it comprises a number of different cultures that share common values and beliefs. Modern Aboriginal cultures are based on traditional cultural beliefs and practices, influenced by European culture and religious beliefs and social and environmental factors. It is important to appreciate there is no one size fits all approach to treating and supporting Aboriginal patients at Peter Mac. Using the Aboriginal Cancer Care Pathway As a result of evidence-based research, patient data, and stakeholder engagement, key factors affecting Aboriginal patients receiving cancer care at Peter Mac have been identified. The Aboriginal Cancer Care Pathway aims to provide Peter Mac staff with a resource that outlines each of these issues and provides information and guidance about how to approach and address Aboriginal patients in a culturally sensitive manner. The pathway flow chart acts as a visual guide to prompt all staff about particular aspects of care pertinent to Aboriginal patients. The flow chart is a representation of the contents located within this resource document. When navigating this pathway, each issue presented in the flowchart will appear as subheading in this document. Under these subheadings will be an explanation of the cultural considerations for staff to note when treating and supporting their Aboriginal patients.

3 Page 3 Background As Australia s only public hospital solely dedicated to cancer research, education and treatment, Peter Mac is committed to improving the lives of cancer patients and reducing the impact of cancer on the community. Peter Mac aims to provide expert cancer care and specialist treatment for all Victorians, regardless of where they live. In ensuring equal access to cancer care and culturally sensitive support for Aboriginal people, it is essential that Peter Mac staff understand the needs of Aboriginal people presenting at any of Peter Mac s five sites across Victoria. Peter Mac is committed to establishing a culturally sensitive environment for Aboriginal people, improving each part of their treatment journey. To foster this environment, an integrated and coordinated approach to cancer care and treatment for Aboriginal patients is required, with a focus on identifying opportunities and implementing strategies in preventative, diagnostic, therapeutic and palliative services; engaging aboriginal people and communities; improving cancer literacy and improving basic data capture and analysis to improve cancer care and treatment delivery. A demographic study of Aboriginal patients attending Peter Mac and engagement with appropriate stakeholders has provided valuable insight into Aboriginal culture, history, referral patterns, clinical need and reasons for resisting hospital admission. Informed by this research, Peter Mac has created a supportive and culturally sensitive cancer care resource guide to improve the cancer journey for Aboriginal patients; this pathway is the first comprehensive review of a cancer pathway for Aboriginal patients receiving care at Peter Mac.

4 2012 Aboriginal and Torres Strait Islander cancer care pathway Recovery Link to community supports and services Aboriginal community controlled health services Aboriginal survivorship support groups Follow up Prevention/ awareness Referral Diagnosis/ staging Treatment Smoking cessation Community education i.e. early warning signs Automatic alerts sent to social worker and nurse coordinator Phone consultation from social work Identification of case manager and contact details Identification Family involvement Hospital environment Care plan steps Gender Communication Transport and accommodation Aboriginal health liaison officers Clinical handover Young adults Beliefs and understandings of cancer Appropriate space for family Financial hardship Bush medicine and home remedies Pharmaceuticals Transport and accommodation Volunteer services Family involvement Gender Mental health Palliative and end-of-life care Palliative care Collaboration Place of death (returning to country) Ceremonies

5 Page 5 Factors in cancer care for Aboriginal patients Prevention and awareness Community education Many successful prevention programs geared toward the Aboriginal community are functioning within Melbourne and around Victoria. If you feel patients may benefit from further information on prevention initiatives they can visit the Cancer Council Victoria website for more information: aboriginal-health. This site provides Aboriginal-specific brochures and educational resources related to different cancer streams these can be printed and distributed by staff as required. The site also provides a list of links to websites specific to Aboriginal health. The CEITC (Centre for Excellence in Indigenous Tobacco Control) provides an excellent resource for Aboriginal communities to raise awareness about tobacco control, available as a hard copy if required, at: Cancer Council NSW have a range of Aboriginal patient support literature and fact sheets available at: get-informed/about/aboriginal-health/living-withcancer-3/?pp=1904. A DVD for Aboriginal patients which explores their cancer journey can be accessed online at: The Cancer Council Helpline is a telephone service staffed by experienced cancer nurses, who provide information about cancer prevention, early detection, treatment and support options relating to any type or stage of cancer. The helpline is available by calling , 9.00am to 5.00pm, Monday to Friday. Through the Cancer Council Helpline Aboriginal patients can: access a range of free, Aboriginal-specific cancer information, support and resources seek guidance in making well-informed decisions about their cancer gain confidence to formulate questions to ask their doctors and treatment team receive compassionate emotional support while adjusting to their cancer experience access practical advice about how to access a range of local and regional services including financial and legal support. Two Cancer Council programs offering practical support are: The Financial Assistance Program, which provides a one-off grant to people affected by cancer who are deemed to be in financial hardship. The Holiday Break Program, which coordinates holidays for Victorians with a cancer diagnosis that may not otherwise be able to afford a break. This short break affords patients time to relax, revive and focus on things outside hospital visits and treatment. Cancer Council Victoria matches eligible patients and their families with available accommodation that has been donated. For more information on any of the CCV s Cancer Information and Support Services, encourage patients to call the Cancer Council Helpline on , or visit Smoking cessation In 2008, 45 per cent of Aboriginal people aged 15 years and over smoked one or more cigarettes per day. In addition, Aboriginal Australians are twice as likely to be current smokers than non-aboriginal Australians; this statistic is particularly alarming as smoking is the leading cause of several cancers. To help address the severity of this issue, Peter Mac is fortunate to have smoking cessation nurses on staff (ext. 3403). Aboriginal patients may benefit from referral to this service for assistance and support to quit smoking. Quit Victoria also have a range of promotional and educational resources and advice available at: aboriginal-communities. In addition, CEITC also provide a range of promotional information and publications around raising awareness for tobacco control, at: Resources can be used for both individual and community education.

6 Aboriginal and Torres Strait Islander cancer care resource guide Referral Automatic alerts to social workers and nursing coordinators An alert will be set up via HIS to inform social workers and nursing coordinators when an Aboriginal patient is scheduled to visit Peter Mac. This helps the team prepare for the needs of Aboriginal patients in addition to familiarising the patient with staff members before their arrival. Phone consultation from social work Once the appropriate social worker has been notified that an Aboriginal patient will present at Peter Mac a phone consultation should occur. This will involve the appropriate social worker calling the patient to discuss any queries or concerns they might have prior to their arrival. This process will aim to help build relationships and decrease the patient s anxiety. Identification of case manager and contact details Aboriginal patients may have an existing case manager or Aboriginal health worker that provides medical and/or social support within their community. A case worker or Aboriginal health worker can help assist staff with care and discharge planning as well as providing relevant information regarding the patient s history. Therefore it is important to determine if a patient has a case manager. With the patients consent, staff should obtain the name and contact details of their case manager or support worker. It is important that staff make contact and liaise closely with case managers while the patient is receiving services at Peter Mac.

7 Page 7 Diagnosis and staging Identification People from culturally and linguistically diverse backgrounds still experience barriers to accessing high quality, responsive, effectively delivered health services. A combination of community experiences, beliefs, understandings and health care providers capacity and capability to respond effectively, are reported as contributing factors. Therefore, it is important to identify every patient s cultural requirements in order to provide the best possible care to enhance their experience and health outcomes. It is our collectibe duty to ensure we identify our Aboriginal patients accurately. Poor data collection can prevent the delivery of optimal care. It is important that staff consistently ask Are you of Aboriginal and/or Torres Strait Islander descent? at registration and provide patients with the appropriate rationale as to the importance of the question. Accurate data collection and identification is everyone s responsibility. Therefore, if a staff member becomes aware they are caring for a patient who indentifies as being Aboriginal they can double check that this is information is correctly recorded on the patient s file. If it is not recorded, staff can contact Health Information Services to amend this information. By obtaining correct data statistics we can also establish where best to focus future improvement strategies. Family involvement It is important to appreciate the concepts of family in Aboriginal culture. The traditional Aboriginal family structure is significantly different to the common Western family unit. Aboriginal people value an extended family system, which often includes quite distant relatives, each of whom are integral to a person s life. Staff may find Aboriginal patients request their family and possibly members of their community to be present and heavily involved with their care and decision-making processes. Reassurance and support with issues regarding disease, treatment or follow-up requirements may need to be directed not only towards the patient but also members of a patient s immediate and extended family. Staff should not exclude family members from a patient s care if their involvement is requested by the patient. This needs to be respected by all members of staff as a priority when care planning for Aboriginal patients. Hospital environment Cultural safety is one of the most critical elements in Aboriginal patients accessing health services. Unfriendly and cold hospital environments are identified as a key contributor to Aboriginal people s reluctance to access cancer care. The creation of a culturally welcoming environment ensures patients feel comfortable and welcomed, while encouraging their return for future treatments. Additionally, this strategy also raises the profile of Aboriginal health within Peter Mac. Peter Mac now proudly flies the Aboriginal and the Torres Strait Islander flags, either side of the Australian flag at the entrance of the hospital. This provides strong visual representation of our commitment to improve Aboriginal health outcomes. Additions to the hospital environment will also include artwork specifically commissioned to represent Aboriginal health at Peter Mac, as well as posters and brochures to promote accurate identification. To support these visual and material changes, staff at Peter Mac must adopt an accepting and culturally sensitive attitude towards all Aboriginal patients. Peter Mac is committed to providing non-discriminatory care, which includes being accepting towards all different rituals, beliefs and practices. Care plan steps To assist patients in understanding the stage of their treatment, each patient is provided with a step-by-step run through of each appointment and phase of their treatment and care at Peter Mac. It is important that an Aboriginal patient s family or carer is involved in this discussion, and fully understands this information, as they will often be charged with some responsibility for the patient s care. A contact number should also be included and patients to carers should be encouraged to ring if they have any queries or questions. This information should be given to the patient as a hard copy to take home and refer to if required, empowering patients to feel in control of each stage of their cancer journey.

8 Aboriginal and Torres Strait Islander cancer care resource guide Gender In some circumstances, it may not be appropriate for staff that are of the opposite sex to an Aboriginal patient to be providing their care. This is often referred to as secret men s and secret women s business, and disregarding this can be viewed as culturally inappropriate and unsafe. Caution and sensitivity should be exercised when allocating clinical and/ or care staff to Aboriginal patients. If this is unable to occur then the issue should be sensitively discussed with the patient to establish if it they will consent to receiving care from the opposite gender or if their appointment should to be rescheduled to an alternative time. Communication As with any patient receiving treatment at Peter Mac, clinical staff must ensure all treatments are explained in full to Aboriginal patients in clear, concise language. Staff should never presume that if a patient is nodding or agreeing that they completely understand the information being discussed. It may be beneficial for staff to ask the patient if they understand, and further ask them to reinstate what their understanding is of their condition and their treatment options. In addition, many Aboriginal people speak a number of languages and may not be fluent in English, therefore patients may need an interpreter to ensure information is effectively communicated and understood. Staff and patients can then be confident they have a clear understanding about the information they have received. It is crucial that staff are equally aware of their body language as discrimination and hostility can occur through non-verbal communication. In addition, it must be recognised that an interpreter may be required to be present in order to ensure appropriate discussion of patient s disease. If family members are present they should also be included as they may act as an advocate or be responsible for the patient s care outside Peter Mac. Effective communication, building trust and strong relationships will help patients feel more comfortable while receiving services at Peter Mac, essential for improving Aboriginal cancer outcomes. Transport and accommodation Victorian Patient Travel Assistance Scheme The Victorian Patient Travel Assistance Scheme (VPTAS) is funded by the Department of Human Services. VPTAS provides a subsidy for travel and accommodation for rural Victorians who need to travel 100km or further to reach their nearest medical specialist. An approved patient escort may also be eligible to seek assistance for travel and accommodation costs. Travel assistance may be provided for the most direct means of transport by car, coach, rail, ambulance, ferry or air. Original receipts are required to prove travel expenses for all relevant modes of transport, which includes rail, bus and airline tickets for patients and escorts. Note: Proof of car travel is not required. Reimbursement is based on kilometres travelled, which is calculated by VPTAS. VPTAS forms can be obtained from your local GP, hospital, social worker or regional VPTAS Office: Victorian VPTAS office PO Box 712 Ballarat Vic 3353 Ph: Ph: (03) Please contact the Victorian VPTAS office if you require more information or wish to confirm your eligibility. Claims must be lodged within six months of the initial specialist treatment or consultation. Veterans Affairs card holders can contact their local office for information on travel and accommodation schemes. For interstate patients, please refer to the following relevant travel and accommodation schemes: NSW Isolated Patients Travel and Accommodation Scheme (IPTAAS) Great Southern Area Health Service, ph: Broken Hill, ph: (08) Illawarra Area Health Service, ph: (02) Queensland Patient Transport Subsidy Scheme (PTSS) Ph: South Australia Patient Assistance Transport Scheme (PATS) Ph: Tasmanian Patient Travel Assistance Scheme (PTAS) Royal Hobart Hospital, ph: (03)

9 Page 9 Launceston General Hospital, ph: (03) North West Regional Hospital, ph: (03) WA Patients Assisted Travel Scheme (PATS) Kimberly, ph: (08) Great Southern, ph: ACT Interstate Patients Travel Assistance Scheme Ph: (02) Northern Territory Escorts for Patient Travel (PATS) Alice Springs, ph: (08) or (08) Darwin, ph: (08) or (08) Travellers Aid The Travellers Aid service helps rural consumers experiencing difficulties in paying for their travel tickets, with financial assistance in getting to and from medical appointments assistance is usually provided in the form of V/Line vouchers. Other services offered by Travellers Aid are: The Travellers Aid Access Service, a unique Melbourne-based service offering friendly help and professional support workers to assist people with disabilities and older people with personal care needs, meal assistance and communication. This service is offered at Southern Cross and Flinders Street train stations. It is free and no bookings are required. The Emergency Relief Assistance helps travellers who experience transport and social disadvantage or who are vulnerable and distressed. It provides travel-related emergency relief including V/Line fares to medical appointments. This service can assist people who are not eligible for VPTAS or who cannot benefit from VPTAS because they do not have the funds upfront. Referrals can be made by health services or by consumers themselves, by calling (03) or ing reception@travellersaid.org.au Accommodation Lack of affordability and access to accommodation is a common issue for Aboriginal patients and their families attending Peter Mac. Patients presenting at Peter Mac often need accommodation for themselves and a large number of family members. Consideration must be given as to how best accommodate this situation, should it arise. Peter Mac has a limited number of apartments for patient accommodation; there is other accommodation near the hospital, including hotels within walking distance, which offer reduced rates for patients and family members, including: Mercure Hotel ( 13 Spring Street, Melbourne Ph: (03) Albert Heights Executive Apartments ( Albert Street, East Melbourne Ph:(03) or (toll-free) Birches Serviced Apartments ( 160 Simpson Street, East Melbourne Ph: (03) City Edge ( Various, call to ask about locations Ph: Drummond Serviced Apartments ( 371 Drummond St, Carlton Ph: (03) Eastern Town House ( 90 Albert Street, East Melbourne Ph: (03) George Powlett Apartments ( Cnr George and Powlett Streets, East Melbourne. Ph: (03) Georgian Court Guest House Bed and Breakfast ( George Street, East Melbourne Ph: (03) Glowrey House Nicholson Street, Fitzroy Ph: (03) Parade Inn 539 Royal Parade, Parkville Ph: (03) , stay@paradein.com.au Knightsbridge Apartments ( 101 George Street, East Melbourne Ph: (03) Plum Serviced Apartments ( 528 Swanston Street, Carlton Ph: Plum Serviced Apartments- Collins Street 325 Collins Street, Melbourne Ph: Plum Serviced Apartments - North Melbourne 168 Arden Street, North Melbourne Ph:

10 Aboriginal and Torres Strait Islander cancer care resource guide Plum Serviced Apartments - Southbank 285 City Road, Southbank Ph: Punt Hill Serviced Apartments ( 267 Flinders Lane, Melbourne Ph: Punt Hill Little Bourke Street Cohen Place, Melbourne Ph: Royal Gardens Melbourne ( Royal Lane, Fitzroy, Melbourne Ph: (03) Mantra on Jolimont ( 133 Jolimont Rd, East Melbourne Ph (03) or (toll-free) Mantra on the Park ( 333 Exhibition Street, Melbourne Ph: (03) or Victoria Hotel ( 215 Little Collins Street, Melbourne Ph: (03) Quest East Melbourne ( 48 Wellington Parade, East Melbourne Ph: (03) Quest Jolimont ( 153 Wellington Parade South, East Melbourne Ph: (03) Quest on Lonsdale ( 43 Lonsdale Street, Melbourne Ph: (03) The Windsor Hotel ( 111 Spring Street, Melbourne Ph: (03) Park Hyatt Melbourne 1 Parliament Square, Melbourne Ph: Social work staff can assist to arrange appropriate accommodation and transport for patients and their families or carers. The following three accommodation providers require bookings to be made by the Peter Mac Social Work Department on : Peter Mac Apartments (Outpatients and carers only; not available for inpatients) 10 St Andrews Place, East Melbourne Ryder-Cheshire, Ivanhoe Donaldson Street, Ivanhoe Ph: (03) Vizard House Foundation (Relatives Only No Patients) 70 Clarendon Street, East Melbourne Ph: (03) VPTAS: Required to pay then claim back later. Subsidy will cover total cost of accommodation (for one approved escort only, other escorts are not eligible to claim). Accommodation subsidy Patients and approved escorts are eligible to claim a subsidy for registered commercial accommodation expenses only. If you are eligible you can claim up to $38.50 per night (each for patient and approved carer) of the cost of accommodation where GST is applicable. Receipts are required to prove accommodation expenses. Aboriginal Specific Accommodation in Melbourne Indigenous Hospitality House ( Ph: (03) AHL William T Onus Hostel (wtonus.hostel@ahl.gov.au) Ph: (03) Lady Gladys Nicholls Hostel ( Ph: (03) Aboriginal Health Liaison Officers Whilst Peter Mac do not currently provide an Aboriginal Hospital Liaison Officer (AHLO) service, all major Victorian health services do employ an AHLO to provide cultural, social and advocacy support services for Aboriginal patients. If an Aboriginal patient is required to undergo part of their treatment at another hospital, they may wish to see the AHLO. In this case, nursing or social work staff should make contact with the AHLO who can ensure they connect with the patient when they present to their health service. This may help decrease anxiety and increase patients comfort as well as potentially improve compliance to attend a different healthcare facility for treatment. Contact information for AHLOs is listed on the next page.

11 Page 11 Metropolitan AHLOs Health service Phone Alfred Health (03) Austin Health (03) Dental Health Services Victoria (03) Eastern Health (03) Melbourne Health (03) Mercy Public Hospitals Inc. (03) Northern Health (03) Peninsula Health (03) Royal Children s Hospital (03) Royal Women s Hospital (03) and (03) Royal Victorian Eye and Ear Hospital (03) Southern Health St. Vincent s Hospital (03) Western Health (03) Rural AHLOs Health service Phone Bairnsdale Regional Health Service (03) Grampians Health, Ballarat Base Hospital (03) Bendigo Health Care Group (03) and Central Gippsland Health Service, Sale (03) Echuca Regional Health (03) Barwon Health, Geelong Hospital (03) , pager 669 Goulburn Valley Health (03) Latrobe Regional Hospital (03) (switch) Ramsay Health, Mildura Base Hospital (03) Orbost Regional Health (03) Portland and District (03) Robinvale District Health Service (03) (03) (switch) South West Health Care, Warrnambool (03) Swan Hill District Hospital (03) West Gippsland Health Care Group, Warragul (03) (switch) Wimmera Health Care Group, Horsham (03) Wodonga Hospital (02)

12 Aboriginal and Torres Strait Islander cancer care resource guide Young adults Young Aboriginal patients (aged years old) receiving treatment at Peter Mac should to be referred to the ONTrac at Peter Mac Victorian Adolescent and Young Adult Cancer Service. ONTrac at Peter Mac is a team of multidisciplinary health care professionals who can offer adolescents and young adults specialised care to help them through their cancer journey. For further information contact ext or ontrac@petermac.org. Referral forms can be found at: Clinical handover Handover is a mandatory aspect of patient care; it is important that clear and effective clinical handover is provided for Aboriginal patients. If a patient has an existing GP, case manager or other health professional involved in their care, staff should ensure that appropriate written and verbal/phone communication is made. As recommended by the Western Australian Allied Health Clinical Handover Project, phone calls should occur alongside any written referral 34. By effectively handing over, clinical staff can reduce error, ensure clarity in communication, and improve patient care and positive outcomes 33. It is not only external handover that is crucial for optimal patient care, but also the internal transfer of patient information between staff within departments needs to be practiced in a clear and concise manner. Aboriginal patients will feel more trusting of the service provider if they are well informed about their history and current treatment plans. Lack of information regarding the patient s medical situation can often be perceived as incompetence on the part of clinical staff and consequently a lack of trust may grow in Aboriginal patients, risking non-compliance with future treatments. The World Health Organization recommends the use of SBAR (Situation, Background, Assessment Recommendation) to ensure good clinical handover via phone communication. This involves stating: appropriate identification of the person making the phone call and the patient involved, as well as the reason for the phone call background information on the patient s presenting problems, as well as relevant medical history and treatment patient s vital signs, any clinical concerns and any additional information that is required important overall information, clarifying exact actions to take and how to take them suggesting implementations and which are ordered.

13 Page 13 Treatment: Beliefs and understandings of cancer Some Aboriginal patients may have particular beliefs surrounding cancer diagnosis treatment. These beliefs may differ from staff member s understanding of what cancer is and what causes the disease. Staff should be respectful of all beliefs irrespective of their own personal opinions or research data. Some patients may believe cancer is a death sentence or that it is a punishment to the particular individual, this can sometimes create a sense of shame, a significant factor in contributing to late presentation to healthcare services. Being aware of and discussing a patient s beliefs and practices in an open and accepting environment may help ease some anxieties and apprehensions about treatment and returning for further appointments. It is important that staff respect all Aboriginal health beliefs without casting judgment or expressing disagreement. Appropriate space for family Consideration will need to be given on how to accommodate large numbers of families and visitors in the ward or clinical environment. Families may have travelled long distances in order to be with a patient during their time at Peter Mac. Staff should be aware that visiting the patient may be a requirement of the community or family and therefore it may be disrespectful to restrict this process. Having family members present and involved can reduce fear and apprehension for the patient in dealing their disease. Patients may also have a traditional preference to have their own family members care for them in their home environment during end-of-life care. Financial hardship Aboriginal people are the most disadvantaged group in Australian society and many Aboriginal patients may be experiencing financial crisis and hardship when they present to Peter Mac. If a patient (or their support person/s) requires financial assistance, the Social Work Department should be contacted to provide financial counselling and support. Financial assistance is available and assessed on a case-by-case basis. It is important that it is clearly articulated to the patient and their support person/s that the payment is strictly a one-off. Bush medicine and home remedies Traditional healers and bush medicines may also be requested by a patient as part of their care. It is important to be aware that many Aboriginal people rely on home remedies passed down through the generations and, unbeknown to clinical staff, these may be used to treat their disease at home. Furthermore, some Aboriginal people may be sceptical of the potency and/or potential side affects of prescribed medications and may not adhere to the correct dosages when in their home environment. The cost of prescribed medications can also encourage Aboriginal patients to use alternative healing methods and home remedies. It is important to gauge whether patients are utilising alternative treatment options so that the potential properties of different substances and the effects it may have on the body, as well as how it may impact the current medications or treatment they are receiving, can be explained. An opportunity to openly discuss these factors with treating physicians and pharmacy without judgment or fear of reprimand should be provided to the patient. If it is determined that prescribed medications are unaffordable, please refer the patient to the Social Work Department for assistance. Pharmaceuticals The cost of medications may present a financial stress for Aboriginal patients receiving treatment at Peter Mac. To assist patients who are experiencing financial hardship, Aboriginal patients may be eligible to access their medications free of charge. If a staff member has a patient who may benefit from this initiative a referral should be made to the Social Work Department to for assistance. Mental health The Ways Forward report (1995) states Aboriginal views of health and mental health as holistic, involving spiritual, social, emotional, cultural, physical and mental wellbeing and issues related to land and way of life. It supports the view that Aboriginal mental health inevitably relates to colonisation, history, racism and social factors. Studies have shown that prevalence and rate of hospitalisations due to mental health disorders among Aboriginal populations are higher than among non-aboriginal population.

14 Aboriginal and Torres Strait Islander cancer care resource guide The higher rate of mental health issues within Aboriginal patients may be a result of having to deal with their illness in addition to dealing with issues such as impact of colonialism; trauma, loss, and grief; separation of families and children; the taking away of land; the loss of culture and identity; the impact of social inequity, stigma and racism. Young adults may have increased susceptibility to mental health issues due to the unfortunate occurrence of racism within society. Data from VicHealth s The state of Victoria s Children 2009 report, states that one in five young Aboriginal adults aged 15 to 24 has experienced racial discrimination. Peter Mac has Clinical Psychology and Psychiatry departments that can provide support to patients. If staff are caring for a patient who they believe may benefit from psychology or psychiatric support, referrals can be made by clinical staff. Peter Mac staff can find the referral policy for psychology and psychiatry located on the Intranet. In emergency cases please refer to ipolicy: Management of Psychiatric Emergencies at Peter Mac. Volunteer Services The Peter Mac Volunteers Department provides many services for Peter Mac inpatients and outpatients attending Peter Mac s East Melbourne, Moorabbin and Box Hill sites. Aboriginal patients receiving care at Peter Mac are invited to benefit from these services. The Volunteers Department provides the following free services: wig library convenience trolley shopping service outreach service MacChat And the following free equipment: toiletries and shower bags, hospital attire, image bags, graseby bags, calico dolls, drainage tube bags, headwear, Tena hats, cylinder bags, breast cushions, dementia products, information packs. To contact the Volunteers Department please ring (03) or volunteer.service@petermac.org

15 Page 15 Recovery: Link to community supports and services The cultural significance of Aboriginal patients returning to country, identifies the need for services to be accessible in rural and remote areas. A shared model of care between healthcare providers and workers is the most effective way to improve health care within Aboriginal communities. Strong communications links between organisational services need to be established to ensure the appropriate care can be planned for Aboriginal patients. Details of Aboriginal Community Controlled Health Organisations (ACCHOs) in Victoria are listed below. Aboriginal Community Controlled Health Services Bairnsdale Gippsland and East Gippsland Aboriginal Co-operative PO Box 634 Bairnsdale 3875 Ph: (03) Fax: Ballarat Ballarat and District Aboriginal Co-operative PO Box 643 Ballarat 3353 Ph: (03) Fax: (03) Bendigo Bendigo and District Aboriginal Co-operative PO Box 75 North Bendigo 3550 Ph: (03) Fax: (03) Geelong Wathaurong Aboriginal Co-operative PO Box 402 North Geelong 3215 Ph: (03) Fax: (03) Echuca Njernda Aboriginal Corporation PO Box 201 Echuca 3564 Ph: (03) Fax: (03) Halls Gap Budja Budja Aboriginal Co-operative PO Box 66 Halls Gap 3381 Ph: (03) Fax: (03) Heywood Winda Mara Aboriginal Co-operative PO Box 42 Heywood 3304 Ph: (03) Fax: (03) Horsham Goolum Goolum Aboriginal Co-operative PO Box 523 Horsham 3402 Ph: (03) Fax: (03) Lake Tyers Lake Tyers Health and Children Service PO Box 1147 Lakes Entrance 3909 Ph: (03) Fax: (03) Lakes Entrance Lakes Entrance Aboriginal Health Association Jemmeson Street Lakes Entrance 3909 Ph: (03) Fax: (03) Metropolitan Services Aboriginal Community Elders Service 5 Parkview Avenue East Brunswick 3057 Ph: (03) Fax: (03) Dandenong and District Aboriginal Co-operative PO Box 683 Dandenong 3175 Ph: (03) Fax: (03) Victorian Aboriginal Health Service PO Box 255 Fitzroy 3065 Ph: (03) Fax: (03) Western Suburbs Indigenous Gathering Place 200 Rosamond Road Braybrook North 3019 Ph: (03) Fax: (03) Mildura Mildura Aboriginal Corporation PO Box 2130 Mildura 3502 Ph: (03) Orbost Moogji Aboriginal Council PO Box 617 Orbost 3888 Ph: (03) Fax: (03) Portland Dhuawurd Wurrung Elderly and Community Health Service PO Box 764 Portland 3305 Ph: (03) Fax: (03) Robinvale Murray Valley Aboriginal Co-operative PO Box 680 Robinvale 3549 Ph: (03) Fax: (03) Sale Ramahyuck District Aboriginal Co-operative PO Box 1240 Sale 3850 Ph: (03) Fax: (03)

16 Aboriginal and Torres Strait Islander cancer care resource guide Shepparton Rumbalara Aboriginal Co-operative PO Box 614 Mooroopna 3629 Ph: (03) Fax: (03) Warrnambool Gunditjmara Aboriginal Co-operative Ltd PO Box 732 Warrnambool 3280 Ph: (03) Fax: (03) Kirrae Health Services Inc C/- Wangoom Post Office Wangoom 3279 Ph: (03) Fax: (03) Wodonga Mungabareena Aboriginal Corporation PO Box 1535 Wodonga 3689 Ph: (02) Fax: (03) Appointment reminders To help remind patients to return to Peter Mac for scheduled appointments, reminder cards should contain all required information, including the date and time of the appointment, who the appointment is with and exactly where it will take place. A contact number should be clearly visible and patients and their carers should be urged to ring if they have any queries or questions. Aboriginal survivorship support groups In some communities Aboriginal people don t like to talk about cancer, therefore encouragement and promotion needs to be focused around support groups. Bringing cancer discussion out of the dark heightens the awareness it receives, which helps lessen patients feelings of isolation and increases community and family support. Follow-up Being culturally appropriate and accepting of Aboriginal culture and heritage will help promote the attendance of patients to follow-up appointments and care. Follow-up care should always be scheduled as close to a patient s home and community as possible. In addition, efforts should be made to contact patients where possible prior to follow-up appointments, as an additional reminder. NSW Health promotes a 48-hour follow-up post-discharge for Aboriginal patients with chronic conditions to help improve and promote follow-up care. Using this model as an example it may be beneficial for either the nurse coordinator or social worker to make contact with the patient, 48 hours after discharge.

17 Page 17 Palliative and end-of-life care Palliative care Given the historical lack of trust by Aboriginals in mainstream health services, particular attention is needed to foster and sustain respectful, honest, trusting and productive relationships between consumers and providers. Service delivery models may need adjustment in order to ensure all parties have the time and space to create such relationships. One major issue affecting optimal palliative and end-of-life care delivery is poor communication. A failure to understand or appreciate the cultural practices of Aboriginal peoples leads to inappropriate and inadequate health care. For further information, the Department of Health and Ageing have developed a detailed and informative resource kit on providing appropriate palliative care to Aboriginal people, located at: nsf/content/58f4f2a90927febbca256f a FA/$File/principles.pdf Ceremonies Some Aboriginal families may request a smoking ceremony following the death of a patient. A smoking ceremony is performed to help cleanse, bless, purify and release the individual s spirit to continue its journey. This practice needs to be addressed before the body is removed. In organisation this ceremony, a range of issues such appropriate space, effects on other patients and staff, and fire safety need to be considered. Clear communication must occur between the patient, their family, and all levels of staff regarding all aspects of the ceremony. Collaboration Collaboration is also a fundamental prerequisite in communication and building relationships which underpin better palliative and end-of-life care service delivery for Aboriginal patients. Local solutions must arise from within the local community, with local consultation and local engagement; without ownership by the community, engagement and sustainable improvements in the quality of end-of-life care are not possible. Place of death (Return to Country) Aboriginal culture has a strong connection with the land and Mother Nature. Aboriginal patients may request to have family members care for them on their homeland at the end-of-life stage of their disease. There may be varying views and rules with each patient and their family s traditions regarding which members are responsible for the care, as well as which rituals and practices may been performed. Where appropriate, a request for end-of-life care at home should be accommodated for the patient and their family. If the patient is unable to return home to pass away, it may be requested that the deceased patient s body be returned to their homeland.

18 Peter MacCallum Cancer Centre St Andrews Place East Melbourne Victoria Postal Address Locked Bag 1 A Beckett Street Victoria 8006 Australia Phone Fax ABN Locations East Melbourne Bendigo Box Hill Moorabbin Sunshine