References - Practice Tip Sheets
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References - Practice Tip Sheets

Introduction and care provider issues

Aged care access and assessment

  • Australian Government Department of Health and Aged Care. Aged care assessment quality framework. Canberra: Commonwealth Government; 2023.
  • Australian Government Department of Health and Aged Care. AN-ACC assessor application user guide. Canberra: Commonwealth Government; 2024.
  • Australian Government Department of Health and Aged Care. My Aged Care assessment manual: For regional assessment services and aged care assessment teams. Canberra: Commonwealth Government; 2024.
  • Australian Government Department of Health and Aged Care. My Aged Care: National screening and assessment form user guide. Canberra: Commonwealth Government; 2018.

Palliative care

  • International Association for Hospice & Palliative Care. Global consensus based palliative care definition [Internet]. Houston, TX: IAHPC; 2018 [cited 2024 May 3]. Available from: https://hospicecare.com/what-we-do/projects/consensus-based-definition-of-palliative-care/definition/
  • Queensland Government. Care at end of life: Education and training framework. Brisbane: Queensland Government; 2020.
  • World Health Organization. Palliative care [Internet]. Geneva, Switzerland: WHO; 2020 [cited 2024 May 3]. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care

Self-care

  • CareSearch. Self-care [Internet]. Adelaide: CareSearch; 2017 [updated 2023 Oct 8; cited 2024 May 3]. Available from: https://www.caresearch.com.au/Evidence/Searching-for-Evidence/Systematic-Review-Collection/Burn-Out-and-Self-Care
  • Costello H, Walsh S, Cooper C, Livingston G. A systematic review and meta-analysis of the prevalence and associations of stress and burnout among staff in long-term care facilities for people with dementia. Int Psychogeriatr. 2018 Nov 13:1-14.
  • Covington L, Banerjee M, Pereira A, Price M. Mindfulness-based interventions for professionals working in end-of-life care: A systematic review of the literature. J Palliat Care. 2023 Apr;38(2):225-238.
  • Garcia AC, Silva BD, Da Silva LC, Mills J. Self-compassion in hospice and palliative care: A systematic integrative review. J Hosp Palliat Nurs. 2021 Apr 1;23(2):145-54.
  • Hussain FA. Psychological challenges for nurses working in palliative care and recommendations for self-care. Br J Nurs. 2021 Apr 22;30(8):484-489.
  • Mills J, Wand T, Fraser JA. Palliative care professionals’ care and compassion for self and others: A narrative review. Int J Palliat Nurs. 2017 May 2;23(5):219-29.
  • palliAGED. Self-care plan: Aged care team [Interactive form]. Adelaide: palliAGED; 2022. Available from: https://www.palliaged.com.au/Portals/5/Documents/Fillable-Forms/SelfCarePlan_AgedCareTeam_Form.pdf
  • Palliative Care Australia. National Palliative Care Standards, 5th edn. Canberra: PCA; 2018.
  • Palliative Care Australia. Self-care matters: Aged care [Internet]. Canberra: PCA; n.d. [cited 2024 May 3]. Available from: https://palliativecare.org.au/resource/resources-self-care-matters-aged-care/
  • Scott E. 5 self-care practices for every area of your life [Internet]. 2019 [updated 2024 Mar 6; cited 2024 May 3]. Available from: https://www.verywellmind.com/self-care-strategies-overall-stress-reduction-3144729
  • World Health Organization. WHO guideline on self-care interventions for health and well-being, 2022 [Internet]. Geneva: WHO; 2022 [cited 2024 May 3]. Available from: https://www.who.int/publications/i/item/9789240052192

Decision making and communication

Advance care planning

  • Advance Care Planning Australia. Advance care planning: Aged care implementation guide. Melbourne: Advanced Care Planning Australia; 2023.
  • Australian Centre for Health Law Research, Queensland University of Technology (QUT).  Australian law at the end of life: An overview. Brisbane: QUT; 2018.
  • Australian Government. National framework for advance care planning documents [Internet]. Canberra: Department of Health and Aged Care; 2021 [cited 2024 May 3]. Available from: https://www.health.gov.au/resources/publications/national-framework-for-advance-care-planning-documents?language=en
  • Malhotra C, Huynh VA, Shafiq M, Batcagan-Abueg AP. Advance care planning and caregiver outcomes: Intervention efficacy–systematic review. BMJ Support Palliat Care. 2023 Dec 1;13(e3):e537-46.
  • palliAGED. Advance care planning (ACP) [Internet]. Adelaide: palliAGED; 2018 [updated 2021 May 25; cited 2024 May 3]. https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Advance-Care-Planning-ACP
  • Waller A, Nair BKR. Advance care planning. In: Nair BKR, editor. Geriatric medicine: A problem-based approach. Singapore: Springer; 2018. p. 295-306.

After death choices

  • National Health and Medical Research Council. Ethical guidelines for organ transplantation from deceased donors. Canberra: NHMRC; 2016.
  • National Institute for Dementia Research (NNIDR) & Dementia Australia. Dementia brain banking in Australia. Australia: Nous Group; 2019.
  • New South Wales Government. Verification of death and medical certificate of cause of death. Sydney: NSW Government; 2023.
  • Queensland Government. What to do after someone dies [Internet]. Brisbane: QLD Government; 2017 [cited 2024 May 3]. Available from: https://www.qld.gov.au/health/support/end-of-life/after-death

Case conferences

  • Francisco MC, Lane H, Luckett T, Disalvo D, Pond D, Mitchell G, et al. Facilitated case conferences on end-of-life care for persons with advanced dementia: A qualitative study of interactions between long-term care clinicians and family members. Age Ageing. 2022;51(2).
  • Luckett T, Chenoweth L, Phillips J, Brooks D, Cook J, Mitchell G, et al. A facilitated approach to family case conferencing for people with advanced dementia living in nursing homes: Perceptions of palliative care planning coordinators and other health professionals in the IDEAL study. Int Psychogeriatr. 2017;29(10):1713–22.
  • palliAGED. Case conferences (Evidence Centre) [Internet]. Adelaide: palliAGED; 2017 [updated 2017 Oct 23; cited 2024 May 3]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Case-Conferences
  • palliAGED. Using the palliAGED palliative care case conference forms [Internet]. Adelaide: palliAGED; 2022 [updated 2023 Feb 23; cited 2024 Jun 28]. Available from: https://www.palliaged.com.au/Practice-Centre/Practice-Resources/Forms/Using-the-Forms

Continuity of care

  • Chen AY, Chen B, Kuo CC. Better continuity of care improves the quality of end-of-life care among elderly patients with end-stage renal disease. Sci Rep. 2020;10(1).
  • den Herder-van der Eerden M, Hasselaar J, Payne S, Varey S, Schwabe S, Radbruch L, et al. How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries. Palliat Med. 2017;31(10):946-55.
  • Palliative Care Australia. Palliative care service development guidelines. Canberra: Palliative Care Australia; 2018.

Culturally responsive care: Communication

  • Australian Government. Actions to support culturally and linguistically diverse people. Canberra: Department of Health; 2019.
  • Australian Institute of Health and Welfare. Older Australia at a glance [Internet]. Canberra: AIHW; 2018 [updated 2023 Jun 28; cited 2024 May 3]. Available from: https://www.aihw.gov.au/reports/older-people/older-australians/contents/population-groups-of-interest/culturally-linguistically-diverse-people
  • Australian Health Minister’s Advisory Council. Cultural respect framework 2016-2026 for Aboriginal and Torres Strait Islander health: A national approach to building a culturally respectful health system. Canberra: Australian Minister’s Advisory Council’s National Aboriginal and Torres Strait Islander Health Standing Committee; 2017.
  • Bloomer MJ, Botti M, Runacres F, Poon P, Barnfield J, Hutchinson AM. Cultural considerations at end of life in a geriatric inpatient rehabilitation setting. Collegian. 2019 Feb;26(1):165-70.
  • CareSearch. Culturally appropriate - resources [Internet]. Adelaide: CareSearch; 2021 [updated 2021 Aug 2; cited 2024 May 3]. Available from: https://www.caresearch.com.au/Community/Diversity/For-Health-Professionals/Culturally-Appropriate/Culturally-Appropriate-Resources
  • Centre for Cultural Diversity in Ageing. Practice guide: End-of-life care. Victoria: Centre for Cultural Diversity in Ageing; 2023.
  • Ethnic Communities Council of Queensland. Cultural assessment checklist. Brisbane: Multicultural Advisory Service; 2023.
  • Federation of Ethnic Communities’ Councils of Australia. Review of Australian research on older people from culturally and linguistically diverse backgrounds. Canberra: FECCA; 2015.
  • Fraser J. Little book of cultural tips. Brisbane: Diversicare; 2017.
  • Government of Western Australia. Patient centred cultural care guidelines: Aboriginal health strategy. Perth: South Metropolitan Health Service; 2018.
  • Indigenous Allied Health Australia. Policy position statement: Cultural safety through responsive health practice. Canberra: IAHA; 2019.
  • Partain DK, Ingram C, Strand JJ. Providing appropriate end-of-life care to religious and ethnic minorities. Mayo Clin Proc. 2017 Jan;92(1):147-52.
  • Suurmond J, Lanting K, de Voogd X, Oueslati R, Boland G, van den Muijsenbergh M. Twelve tips to teach culturally sensitive palliative care. Med Teach. 2021;43(7):845–50.
  • Xu X, Luckett T, Wang AY, Lovell M, Phillips JL. Cancer pain management needs and perspectives of patients from Chinese backgrounds: A systematic review of the Chinese and English literature. Palliat Support Care. 2018 Dec;16(6):785-99.Yu Y, Xiao L, Chamberlain DJ. Perceptions of care in patients from culturally and linguistically diverse background during acute and critical illness: A integrative literature review. Aust Crit Care. 2021;34(5):486–95.

End-of-life care pathways

  • Eaton S. Delivering person-centred care in long-term conditions. Future Hosp J. 2016 Jun;3(2):128-131.
  • Fernández-Peña R, Ortego-Maté C, Amo-Setién FJ, Silió-García T, Casasempere-Satorres A, Sarabia-Cobo C. Implementing a care pathway for complex chronic patients from a nursing perspective: A qualitative study. Int J Environ Res Public Health. 2021 Jun 11;18(12):6324. doi: 10.3390/ijerph18126324.
  • Groenewoud AS, Wichmann AB, Dijkstra L, Knapen E, Warmerdam F, De Weerdt-Spaetgens C, et al. Effects of an integrated palliative care pathway: More proactive GPs, well timed, and less acute care: A clustered, partially controlled before-after study. J Am Med Dir Assoc. 2021 Feb 1;22(2):297-304.
  • Husebø BS, Flo E, Engedal K. The Liverpool care pathway: Discarded in cancer patients but good enough for dying nursing home patients? A systematic review. BMC Med Ethics. 2017;18(1):48.
  • Joenperä J, Butler J. Pathways to permanent residential aged care. InSight+. 2017;38.
  • National Council for Mental Wellbeing. Toolkit for designing and implementing care pathways. New York: National Council for Mental Wellbeing; 2021.
  • New South Wales Government. My choice: Pathways to community living initiative and aged care assessment teams (ACAT). Sydney: NSW Government; 2021.
  • Queensland Government. Residential aged care end of life care pathway. Brisbane: QLD Government; 2013.
  • Seymour J, Clark D. The Liverpool care pathway for the dying patient: A critical analysis of its rise, demise and legacy in England. Wellcome Open Res. 2018;3:15.
  • van Doorne I, de Meij MA, Parlevliet JL, van Schie VM, Willems DL, Buurman BM, van Rijn M. More older adults died at their preferred place after implementation of a transmural care pathway for older adults at the end of life: A before-after study. BMC Palliat Care. 2023 Aug 2;22(1):110.

First Australians: Communication

  • Askew DA, Jennings WJ, Hayman NE, Schluter PJ, Spurling GK. Knowing our patients: A cross-sectional study of adult patients attending an urban Aboriginal and Torres Strait Islander primary healthcare service. Aust J Prim Health. 2018 Dec 20.
  • Australian Government. Actions to support older Aboriginal and Torres Strait Islander people. Canberra: Department of Health; 2019.
  • Australian Government. National Aboriginal and Torres Strait Islander flexible aged care program: Program manual. Canberra: Department of Health and Aged Care; 2023.
  • Australian Institute of Health and Welfare. Older Australia at a glance: Older Aboriginal and Torres Strait Islander People [Internet]. Canberra: AIHW; 2018 [updated 2023 Jun 28; cited 2024 May 3]. Available from: https://www.aihw.gov.au/reports/older-people/older-australians/contents/population-groups-of-interest/indigenous-australians
  • CareSearch. Culturally safe and responsive care [Internet]. Adelaide: CareSearch; 2017 [updated 2021 Aug 19; cited 2024 May 3]. Available from: https://www.caresearch.com.au/Health-Professionals/Aboriginal-and-Torres-Strait-Islander-Care/Culturally-Safe-and-Responsive-Care
  • CareSearch. Talking together [Internet]. Adelaide: CareSearch; 2017 [updated 2022 Mar 25; cited 2024 May 3]. Available from: https://www.caresearch.com.au/Health-Professionals/Aboriginal-and-Torres-Strait-Islander-Care/The-Care-Journey/Talking-Together
  • De Zilva S, Walker T, Palermo C, Brimblecombe J. Culturally safe health care practice for Indigenous Peoples in Australia: A systematic meta-ethnographic review. J Health Serv Res Policy. 2022 Jan;27(1):74-84.
  • Government of Western Australia. Aboriginal end-of-life and palliative care framework. Perth: Western Australia Department of Health; 2022.
  • Indigenous Allied Health Australia. Cultural responsiveness in action: An IAHA framework. Canberra: IAHA; 2022.
  • Indigenous Allied Health Australia. Policy position statement: Cultural safety through responsive health practice. Canberra: IAHA; 2019.
  • Indigenous Program of Experience in the Palliative Approach. Cultural considerations: Providing end-of-life care for Aboriginal peoples and Torres Strait Islander peoples. Brisbane: IPEPA; 2020.
  • Lin I, Flanagan W, Green C, Lowell A, Coffin J, Bessarab D. Clinical yarning education: Development and pilot evaluation of an education program to improve clinical communication in Aboriginal health care - participant, and health manager perspectives. BMC Med Educ. 2023 Nov 30;23(1):908.
  • Muller J, Devine S, Geia L, Cairns A, Stothers K, Gibson P, et al. Audit tools for culturally safe and responsive healthcare practices with Aboriginal and Torres Strait Islander people: A scoping review. BMJ Glob Health. 2024 Jan 29;9(1):e014194.
  • New South Wales Government. A journey into sorry business: Palliative care support information for Aboriginal and Torres Strait Islander people living in South Western Sydney. Sydney: South Western Sydney Local Health District; 2021.
  • Queensland Government. Sad news sorry business: Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying. Brisbane: Queensland Health; 2015.  
  • Schill K, Caxaj S. Cultural safety strategies for rural Indigenous palliative care: A scoping review. BMC Palliat Care. 2019 Feb 14;18(1):21.

People with intellectual disability: Communication

  • Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020 Sep;34(8):1006-18.
  • McCallion P, Hogan M, Santos FH, McCarron M, Service K, Stemp S, et al. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia. J Appl Res Intellect Disabil. 2017 Nov;30(6):1160-4.
  • McKibben L, Brazil K, Hudson P, McLaughlin D. Informational needs of family caregivers of people with intellectual disability who require palliative care: A two-phase integrative review of the literature. Int J Palliat Nurs. 2019 Jan 2;25(1):4-18.
  • Smith M, Manduchi B, Burke É, Carroll R, McCallion P, McCarron M. Communication difficulties in adults with intellectual disability: Results from a national cross-sectional study. Res Dev Disabil. 2020 Feb 1;97:103557.
  • Velepucha-Iniguez J, Sierra PB, Bruera E. Barriers to palliative care access in patients with intellectual disability: A scoping review. J Pain Symptom Manage. 2022 Dec 1;64(6):e347-56.
  • Villanova university College of Nursing. Communicating with people with disabilities. Villanova: National League for Nursing; 2023.
  • Voss H, Vogel AG, Wagemans AM, Francke AL, Metsemakers JF, Courtens AM, de Veer AJ. Development, implementation, and evaluation of an advance care planning program for professionals in palliative care of people with intellectual disability. Intellect Dev Disabil. 2021 Feb 1;59(1):39-54.
  • Wark S, Hussain R, Müller A, Ryan P, Parmenter T. Challenges in providing end-of-life care for people with intellectual disability: Health services access. J Appl Res Intellect Disabil. 2017 Nov;30(6):1151-9.

Person-centred care

  • Australian Government. Attributes of person-centred healthcare organisations [Internet]. Canberra: Australian Commission on Safety and Quality in Health Care; 2024 [cited 2024 May 5]. Available from: https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care/attributes-person-centred-healthcare-organisations
  • Australian Government. Implementing the comprehensive care standard: Approaches to person-centred screening. Canberra: Australian Commission on Safety and Quality in Health Care; 2018.
  • Australian Government. Person-centred care case studies [Internet]. Canberra: Australian Commission on Safety and Quality in Health Care; 2024 [cited 2024 May 5]. Available from: https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care/person-centred-care-case-studies
  • Australian Government. Rationale and approaches to person-centred care [Internet]. Canberra: Australian Commission on Safety and Quality in Health Care; 2024 [cited 2024 May 5]. Available from: https://www.safetyandquality.gov.au/our-work/partnering-consumers/person-centred-care/rationale-and-approaches-person-centred-care
  • Ballard C, Corbett A, Orrell M, Williams G, Moniz-Cook E, Romeo R, et al. Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial. PLoS Med. 2018 Feb 6;15(2):e1002500.
  • Bennett P, Burns R, Champion S, Gordon S. Effectiveness of an aged simulation training suit to support development of compassion and person‐centred care in the aged‐care workforce. Australas J Ageing. 2022 Jun;41(2):314-24.
  • Hobden B, Mansfield E, Freund M, Clapham M, Sanson-Fisher R. Experiences of patient-centered care among older community-dwelling Australians. Front Public Health. 2022 Jun 14;10:912137.
  • Kim SK, Park M. Effectiveness of person-centered care on people with dementia: A systematic review and meta-analysis. Clin Interv Aging. 2017 Feb 17;12:381-97.
  • Rossiter C, Levett-Jones T, Pich J. The impact of person-centred care on patient safety: An umbrella review of systematic reviews. Int J Nurs Stud. 2020 Sep 1;109:103658.
  • Seah SS, Chenoweth L, Brodaty H. Person-centred Australian residential aged care services: How well do actions match the claims? Ageing Soc. 2022 Dec;42(12):2914-39.

Quality of life with change and deterioration

  • Aged Care Quality and Safety Commission. Guidance and resources for providers to support the Aged Care Quality Standards [Internet]. Canberra: Australian Government; 2018 [updated 2023 Aug 16; cited 2024 May 5]. Available from: https://www.agedcarequality.gov.au/resources/guidance-and-resources-providers-support-aged-care-quality-standards
  • Bayly J, Bone A, Ellis-Smith C, Tunnard I, Yaqub S, Yi D et al. Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: A tertiary systematic review. BMJ Open. 2021;11(12):e048417.
  • Ernecoff NC, Lin FC, Wessell KL, Hanson LC. Quality of life with late-stage dementia: Exploring opportunities to intervene. J Am Geriatr Soc. 2019;67(6):1189-96.
  • Landeiro F, Mughal S, Walsh K, Nye E, Morton J, Williams H, et al. Health-related quality of life in people with predementia Alzheimer's disease, mild cognitive impairment or dementia measured with preference-based instruments: A systematic literature review. Alzheimers Res Ther. 2020;12(1):154.
  • Siette J, Jorgensen ML, Georgiou A, Dodds L, McClean T, Westbrook JI. Quality of life measurement in community-based aged care: Understanding variation between clients and between care service providers. BMC Geriatr. 2021;21(1):390.
  • Watson M, Ward S, Vallath N, Wells J, Campbell R. Oxford handbook of palliative care. 3rd edn. Oxford: Oxford University Press; 2019.
  • World Health Organization. WHOQOL: Measuring quality of life [Internet]. Geneva: WHO; 2022 [cited 2024 May 5]. Available from: https://www.who.int/toolkits/whoqol

Supporting families

  • Anderson RJ, Bloch S, Armstrong M, Stone PC, Low JT. Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliat Med. 2019;33(8):926-41.
  • Backhaus R, Hoek LJM, de Vries E, van Haastregt JCM, Hamers JPH, Verbeek H. Interventions to foster family inclusion in nursing homes for people with dementia: A systematic review. BMC Geriatr. 2020;20(1):434.
  • Ekberg S, Parry R, Land V, Ekberg K, Pino M, Antaki C, et al. Communicating with patients and families about illness progression and end of life: A review of studies using direct observation of clinical practice. BMC Palliat Care. 2021;20(1):186.
  • Gaugler JE, Mitchell LL. Reimagining family involvement in residential long-term care. J Am Med Dir Assoc. 2022 Feb;23(2):235-240.
  • Havreng-Thery C, Giner-Perot J, Zawieja P, Bertin-Hugault F, Belmin J, Rothan-Tondeur M. Expectations and needs of families in nursing homes: An integrative review. Med Care Res Rev. 2021;78(4):311-25.
  • Heritage Care. Managing the effects of aged care on families [Internet]. Melbourne: Heritage Care; 2024 [cited 2024 May 5]. Available from: https://www.heritagecare.com.au/managing-the-effects-of-aged-care-on-families
  • Majid U, Akande A. Managing anticipatory grief in family and partners: A systematic review and qualitative meta-synthesis. Fam J. 2021.
  • Marco DJ, Thomas K, Ivynian S, Wilding H, Parker D, Tieman J, et al. Family carer needs in advanced disease: Systematic review of reviews. BMJ Support Palliat Care. 2022 Jan 7:bmjspcare-2021-003299.

Talking about dying

  • Australian Government. Charter of care recipients' rights and responsibilities: Home care. Canberra: Department of Health; 2018.
  • Australian Government. Charter of care recipients' rights and responsibilities: Residential care. Canberra: Department of Health; 2018.
  • Australian Government. Delivering and supporting comprehensive end of life care: A user guide. Canberra: Australian Commission on Safety and Quality in Health Care; 2021.
  • Bergenholtz H, Missel M, Timm H. Talking about death and dying in a hospital setting: A qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses. BMC Palliat Care. 2020 Nov 2;19(1):168.  
  • Berkey F, Wiedemer J, Vithalani N. Delivering bad or life-altering news. Am Fam Physician. 2018 Jul 15;98(2):99-104.
  • Clinical Excellence Commission. Last days of life toolkit: Guidance for recognising dying; management planning; and care after death – Adult patients. Sydney, Clinical Excellence Commission; 2017.
  • Marie Curie. Talking to someone about dying [Internet]. Scottland: Marie Curie; 2024 [cited 2024 May 5. Available from: https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/individual-needs/talking-approaching-end-life
  • Marie Curie. Telling someone that they’re dying [Internet]. Scottland: Marie Curie; 2024 [cited 2024 May 5]. Available from: https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/individual-needs/telling-someone-that-they-are-dying
  • National Breast and Ovarian Cancer Centre. Breaking bad news: Evidence from the literature and recommended steps. Canberra: Australian Government Department of Health and Ageing; 2010.
  • Queensland Government. Sad news sorry business: Guidelines for caring for Aboriginal and Torres Strait Islander people through death and dying. Brisbane: Queensland Health; 2022.

Talking within the aged care team

  • palliAGED. Communication at end of life [Internet]. Adelaide: palliAGED; 2017 [updated 2021 Jun 17; cited 2024 May 5]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Communication-at-End-of-Life
  • palliAGED. Communication skills [Internet]. Adelaide: palliAGED; 2017 [updated 2021 Jun 16; cited 2024 May 5]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Communication-Skills

Care issues

Advanced dementia

  • Cao Q, Tan CC, Xu W, Hu H, Cao XP, Dong Q, Tan L, Yu JT. The prevalence of dementia: A systematic review and meta-analysis. J Alzheimers Dis. 2020 Jan 1;73(3):1157-66.
  • Cherny N, Fallon M, Kaasa S, Portenoy R, Currow, D. Oxford textbook of palliative medicine, 6th edn. Oxford: Oxford University Press; 2021.
  • Connors MH, Seeher K, Teixeira‐Pinto A, Woodward M, Ames D, Brodaty H. Dementia and caregiver burden: A three‐year longitudinal study. Int J Geriatr Psychiatry. 2020 Feb;35(2):250-8.
  • Dementia Australia. Dementia facts and figures [Internet]. Canberra: Dementia Australia; 2019 [updated 2024 Feb; cited 2024 Jun 28]. Available from: https://www.dementia.org.au/about-dementia/dementia-facts-and-figures
  • Eisenmann Y, Golla H, Schmidt H, Voltz R, Perrar KM. Palliative care in advanced dementia. Front Psychiatry. 2020 Jul 21;11:543966.
  • Government of Western Australia. End-of-life and palliative care for people with dementia framework. Perth: Western Australia Department of Health; 2021.
  • Hanson E, Hellstrom A, Sandvide A, Jackson GA, MacRae R, Waugh A, et al. The extended palliative phase of dementia: An integrative literature review. Dementia. 2019 Jan;18(1):108-34.
  • Kolanowski A, Boltz M, Galik E, Gitlin LN, Kales HC, Resnick B, et al. Determinants of behavioral and psychological symptoms of dementia: A scoping review of the evidence. Nurs Outlook. 2017 Sep/Oct;65(5):515-529.
  • Mataqi M, Aslanpour Z. Factors influencing palliative care in advanced dementia: A systematic review. BMJ Support Palliat Care. 2020 Jun 1;10(2):145-56.
  • Palliative Care Australia & Dementia Australia. Policy Statement: Palliative care and dementia. Canberra: Palliative Care Australia & Dementia Australia; 2013.
  • Parker D, Lewis J, Gourlay K. Palliative care and dementia. Canberra: Dementia Australia; 2018.
  • Pennbrant S, Hjorton C, Nilsson C, Karlsson M. “The challenge of joining all the pieces together”: Nurses’ experience of palliative care for older people with advanced dementia living in residential aged care units. J Clin Nurs. 2020 Oct;29(19-20):3835-46.
  • Thomas KS, Zhang W, Cornell PY, Smith L, Kaskie B, Carder PC. State variability in the prevalence and healthcare utilization of assisted living residents with dementia. J Am Geriatr Soc. 2020 Jul;68(7):1504-11.
  • Vik-Mo AO, Giil LM, Borda MG, Ballard C, Aarsland D. The individual course of neuropsychiatric symptoms in people with Alzheimer's and Lewy body dementia: 12-year longitudinal cohort study. Br J Psychiatry. 2020 Jan;216(1):43-8.

Advanced dementia: Behavioural changes

  • Alzheimer's Society. Preventing and managing aggressive behaviour in people with dementia [Internet]. London: Alzheimer's Society; 2021 [cited 2024 May 12]. Available from: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/preventing-aggression
  • Caspar S, Davis ED, Douziech A, Scott DR. Nonpharmacological management of behavioral and psychological symptoms of dementia: What works, in what circumstances, and why? Innov Aging. 2018;1(3):1-10.
  • Guideline Adaptation Committee. Clinical practice guidelines and principles of care for people with dementia. Sydney: Guideline Adaptation Committee; 2016.
  • Watson M, Ward S, Vallath N, Wells J, Campbell R. Oxford handbook of palliative care, 3rd edn. Oxford: Oxford University Press; 2019.
  • Watt JA, Goodarzi Z, Veroniki AA, Nincic V, Khan PA, Ghassemi M, et al. Comparative efficacy of interventions for aggressive and agitated behaviors in dementia: A systematic review and network meta-analysis. Ann Intern Med. 2019;171(9):633-42.

Anxiety

  • Australian Government. Caring for someone with a mental health condition [Internet]. Canberra: myagedcare; n.d. [cited 2024 May 12]. Available from: https://www.myagedcare.gov.au/caring-someone-mental-health-condition
  • CareSearch. Existential distress [Internet]. Adelaide: CareSearch; 2017 [updated 2021 Aug 27; cited 2024 May 12]. Available from: https://www.caresearch.com.au/Evidence/Practice-Ready-Evidence/Clinical-Evidence-Summaries/Suffering/Existential-Distress
  • Carlucci L, Balestrieri M, Maso E, Marini A, Conte N, Balsamo M. Psychometric properties and diagnostic accuracy of the short form of the geriatric anxiety scale (GAS-10). BMC Geriatr. 2021 Dec;21:1-2.
  • Creighton AS, Davison TE, Kissane DW. The assessment of anxiety in aged care residents: A systematic review of the psychometric properties of commonly used measures. Int Psychogeriatr. 2018;30(7):967-79.
  • Curran E, Rosato M, Ferry F, Leavey G. Prevalence and factors associated with anxiety and depression in older adults: Gender differences in psychosocial indicators. J Affect Disord. 2020 Apr 15;267:114-22.
  • Grossman CH, Brooker J, Michael N, Kissane D. Death anxiety interventions in patients with advanced cancer: A systematic review. Palliat Med. 2018;32(1):172-84.
  • Hu SQ, Tang W, Zhang WQ, Chen HL, Shen WQ. Incidence of death anxiety in palliative care: A systematic review and meta-analysis. OMEGA (Westport). 2022 May 24:00302228221104298.
  • Sewtz C, Muscheites W, Grosse-Thie C, Kriesen U, Leithaeuser M, Glaeser D, et al. Longitudinal observation of anxiety and depression among palliative care cancer patients. Ann Palliat Med. 2021 Apr;10(4):3836846-3846.
  • Watson B, Tatangelo G, McCabe M. Depression and anxiety among partner and offspring carers of people with dementia: A systematic review. Gerontologist. 2019 Sep 17;59(5):e597-e610.
  • Zarrabi AJ, Kavalieratos D. Spotlighting death anxiety in palliative care. J Palliat Med. 2023 Jul 1;26(7):890-1.

Cachexia, sarcopenia and anorexia

  • BC Cancer Agency. Symptom management guidelines: Anorexia and cachexia. Vancouver: BC Cancer Agency; 2014.
  • Blum D, Vagnildhaug OM, Stene GB, Maddocks M, Sørensen J, Laird BJ, et al. Top ten tips palliative care clinicians should know about cachexia. J Palliat Med. 2023 Aug 1;26(8):1133-8.
  • Bullock AF, Patterson MJ, Paton LW, Currow DC, Johnson MJ. Malnutrition, sarcopenia and cachexia: Exploring prevalence, overlap, and perceptions in older adults with cancer. Eur J Clin Nutr. 2024 Apr 5:1-8.
  • CareSearch. Cachexia anorexia syndrome [Internet]. Adelaide: CareSearch; 2017 [updated 2021 Aug 27; cited 2024 May 10]. Available from: https://www.caresearch.com.au/Evidence/Practice-Ready-Evidence/Clinical-Evidence-Summaries/Appetite-Problems/Cachexia-Anorexia-Syndrome
  • Eduardo B, Dev R. Assessment and management of anorexia and cachexia. Waltham : UpToDate; 2023 [updated 2024 Jan; cited 2024 May 20].
  • Maddocks M, Hopkinson J, Conibear J, Reeves A, Shaw C, Fearon KCH. Practical multimodal care for cancer cachexia. Curr Opin Support Palliat Care. 2016;10(4):298-305.
  • Meza-Valderrama D, Marco E, Dávalos-Yerovi V, Muns MD, Tejero-Sánchez M, Duarte E, et al. Sarcopenia, malnutrition, and cachexia: Adapting definitions and terminology of nutritional disorders in older people with cancer. Nutrients. 2021 Feb 26;13(3):761.
  • Peixoto da Silva S, Santos JM, Costa e Silva MP, Gil da Costa RM, Medeiros R. Cancer cachexia and its pathophysiology: Links with sarcopenia, anorexia and asthenia. J Cachexia Sarcopenia Muscle. 2020 Jun;11(3):619-35.

Complementary therapy

  • Armstrong M, Flemming K, Kupeli N, Stone P, Wilkinson S, Candy B. Aromatherapy, massage and reflexology: A systematic review and thematic synthesis of the perspectives from people with palliative care needs. Palliat Med. 2019;33(7):757-69.
  • Armstrong M, Kupeli N, Flemming K, Stone P, Wilkinson S, Candy B. Complementary therapy in palliative care: A synthesis of qualitative and quantitative systematic reviews. Palliat Med. 2020;34(10):1332-9.
  • CareSearch. Complementary therapies [Internet]. Adelaide: CareSearch; 2021 [cited 2024 May 10]. Available from: https://www.caresearch.com.au/Evidence/Practice-Ready-Evidence/Clinical-Evidence-Summaries/Complementary-Therapies
  • Dingley C, Ruckdeschel A, Kotula K, Lekhak N. Implementation and outcomes of complementary therapies in hospice care: An integrative review. Palliat Care Soc Pract. 2021;15:1-15.
  • Keene MR, Heslop IM, Sabesan SS, Glass BD. Knowledge, attitudes and practices of health professionals toward complementary and alternative medicine in cancer care: A systematic review. J Commun Healthc. 2020;13(3):205-18.
  • National Health and Medical Research Council. Talking with your patients about complementary medicine: A resource for clinicians. Canberra: NHMRC; 2014.
  • palliAGED. Complementary medicine (CM) [Internet]. Adelaide: palliAGED; 2021 [updated 2021 Jul 9; cited 2024 May 10]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Complementary-Medicine
  • Steel A, McIntyre E, Harnett J, Foley H, Adams J, Sibbritt D, et al. Complementary medicine use in the Australian population: Results of a nationally-representative cross-sectional survey. Sci Rep. 2018;8(1):17325.
  • Watson M, Ward S, Vallath N, Wells J, Campbell R. Oxford handbook of palliative care, 3rd edn. Oxford: Oxford University Press; 2019.
  • Zeng YS, Wang C, Ward KE, Hume AL. Complementary and alternative medicine in hospice and palliative care: A systematic review. J Pain Symptom Manage. 2018;56(5):781-94.

Constipation

  • Boland JW, Boland EG. Constipation and malignant bowel obstruction in palliative care. Medicine (Abingdon). 2022 Dec 1;50(12):775-9.
  • Continence Foundation of Australia. Bristol Stool Chart. Melbourne: Continence Foundation of Australia; 2019.
  • Dzierżanowski T, Larkin P. Proposed criteria for constipation in palliative care patients: A multicenter cohort study. J Clin Med. 2020 Dec 25;10(1):40.
  • Lucak S, Lucak TN, Lunsford LA. Evaluation and treatment of constipation in the geriatric population. Clin Geriatr Med. 2021;37(1):85–102.
  • Mari A, Mahamid M, Amara H, Baker FA, Yaccob A. Chronic constipation in the elderly patient: Updates in evaluation and management. Korean J Fam Med. 2020 May;41(3):139.
  • Muldrew DH, Hasson F, Carduff E, Clarke M, Coast J, Finucane A, et al. Assessment and management of constipation for patients receiving palliative care in specialist palliative care settings: A systematic review of the literature. Palliati Med. 2018;32(5):930-8.
  • NHS Herefordshire. STOPP START Toolkit supporting medication review. Hereford, NHS Herefordshire; 2017.

Distress at the end-of-life

  • Balsamo M, Cataldi F, Carlucci L, Fairfield B. Assessment of anxiety in older adults: A review of self-report measures. Clin Interv Aging. 2018;13:573-93.
  • Bauereiss N, Obermaier S, Ozunal SE, Baumeister H. Effects of existential interventions on spiritual, psychological, and physical well-being in adult patients with cancer: Systematic review and meta-analysis of randomized controlled trials. Psychooncology. 2018;27(11):2531-45.
  • Grossman CH, Brooker J, Michael N, Kissane D. Death anxiety interventions in patients with advanced cancer: A systematic review. Palliat Med. 2018;32(1):172-84.
  • Krause S, Rydall A, Hales S, Rodin G, Lo C. Initial validation of the Death and Dying Distress Scale for the assessment of death anxiety in patients with advanced cancer. J Pain Symptom Manage. 2015;49(1):126-34.
  • palliAGED. Spiritual care [Internet]. Adelaide: palliAGED; 2017 [updated 2021 Jun 24; cited 2024 May 10]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Spiritual-Care/Spiritual-Care-Synthesis
  • Perry LM, Mossman B, Lewson AB, Gerhart JI, Freestone L, Hoerger M. Application of terror management theory to end-of-life care decision-making: A narrative literature review. OMEGA (Westport). 2022 Jun 10:00302228221107723.
  • Voltz R, Boström K, Dojan T, Rosendahl C, Gehrke L, Shah-Hosseini K, Kremeike K. Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study. Palliat Med. 2022 Mar;36(3):489-97.
  • Zuccala M, Menzies RE, Hunt CJ, Abbott MJ. A systematic review of the psychometric properties of death anxiety self-report measures. Death Stud. 2022 Feb 7;46(2):257-79.

Dysphagia

  • Birchall O, Bennett M, Lawson N, Cotton SM, Vogel AP. The role of instrumental swallowing assessment in adults in residential aged care homes: A national modified Delphi survey examining beliefs and practices. Dysphagia. 2022 Jun;37(3):510-22.
  • Christmas C, Rogus-Pulia N. Swallowing disorders and aspiration in palliative care: Assessment and strategies for management [Internet]. Waltham: UpToDate; 2018 [cited 2024 May 10]. Available from: https://medilib.ir/uptodate/show/95508
  • Goldsmith T, Cohen AK. Swallowing disorders and aspiration in palliative care: Definition, consequences, pathophysiology, and etiology [Internet]. Waltham: UpToDate; 2018 [updated 2022 Dec; cited 2024 May 17]. Available from: https://pro.uptodatefree.ir/show/85949
  • Greco E, Simic T, Ringash J, Tomlinson G, Inamoto Y, Martino R. Dysphagia treatment for patients with head and neck cancer undergoing radiation therapy: A meta-analysis review. Int J Radiat Oncol Biol Phys. 2018;101(2):421-44.
  • Harman SM, Walling AM. Palliative care: The last hours and days of life [Internet]. Waltham: UpToDate; 2018 [updated 2024 Jan, cited 2024 May 10]. Available from: https://medilib.ir/uptodate/show/14241
  • HealthDirect. Dysphagia (difficulty swallowing) [Internet]. Canberra: HealthDirect; 2018 [updated 2022 Aug; cited 2024 May 17]. Available from: https://www.healthdirect.gov.au/dysphagia
  • Hill C, Clapham RP, Buccheri A, Field M, Wong Shee A, Alston L. Assessing adherence and exploring barriers to provision of prescribed texture modifications for dysphagia in a residential aged care facility in rural Australia. Int J Speech Lang Pathol. 2022 Jan 2;24(1):67-76.
  • Huang D, Schar M, Wu PI, Maclean J, Pandey D, Cock C, Omari T, Szczesniak MM. Development and validation of an electronic version of Sydney Swallow Questionnaire. Neurogastroenterol Motil. 2024 Feb 23:e14766.
  • Thiyagalingam S, Kulinski AE, Thorsteinsdottir B, Shindelar KL, Takahashi PY. Dysphagia in older adults. Mayo Clin Proc. 2021 Feb;96(2):488-497.
  • Wilkinson JM, Codipilly DC, Wilfahrt RP. Dysphagia: Evaluation and collaborative management. Am Fam Physician. 2021 Jan 15;103(2):97-106.

Dyspnoea

  • Campbell ML, Kiernan JM, Strandmark J, Yarandi HN. Trajectory of dyspnea and respiratory distress among patients in the last month of life. J Palliat Med. 2018;21(2):194-9.
  • CareSearch. Dyspnoea [Internet]. Adelaide: CareSearch; 2017 [updated 2023 Apr 26; cited 2024 May 12]. Available from: https://www.caresearch.com.au/Health-Professionals/Nurses/Clinical-Care/Symptom-Management/Dyspnoea
  • Crombeen A, Lilly E. Management of dyspnea in palliative care. Curr Oncol. 2020;27(3):142–5.
  • Hackner K, Heim M, Masel EK, Riedl G, Weber M, Strieder M, et al. Evaluation of diagnostic and treatment approaches to acute dyspnea in a palliative care setting among medical doctors with different educational levels. Support Care Cancer. 2022 Jul;30(7):5759-68.
  • Kalluri M, Cui Y, Wang T, Bakal JA. Validation of a novel Clinical Dyspnea Scale–A retrospective pilot study. Am J Hosp Palliat Care. 2024 Mar;41(3):253-61.
  • Lovell N, Etkind SN, Bajwah S, Maddocks M, Higginson IJ. Control and context are central for people with advanced illness experiencing breathlessness: A systematic review and thematic synthesis. J Pain Symptom Manage. 2019;57(1):140-55.e2.
  • Pisani L, Hill NS, Pacilli AMG, Polastri M, Nava S. Management of dyspnea in the terminally ill. Chest. 2018;154(4):925-34.
  • Senderovich H, Yendamuri A. Management of breathlessness in palliative care: Inhalers and dyspnea-A literature review. Rambam Maimonides Med J. 2019;10(1).
  • Williams MT, Lewthwaite H, Paquet C, Johnston K, Olsson M, Belo LF, Pitta F, Morelot-Panzini C, Ekström M. Dyspnoea-12 and multidimensional dyspnea profile: Systematic review of use and properties. J Pain Symptom Manage. 2022 Jan 1;63(1):e75-87.
  • Yohannes AM. Unravelling the unmet needs of patients with severe dyspnoea: A case for palliative oxygen. Eur Respir J. 2021 Oct 1;58(4).
  • Zhuang Q, Yang GM, Neo SH, Cheung YB. Validity, reliability, and diagnostic accuracy of the Respiratory Distress Observation Scale for assessment of dyspnea in adult palliative care patients. J Pain Symptom Manage. 2019 Feb 1;57(2):304-10.

Eye care

  • Canadian Cancer Society. Vision changes [Internet]. Toronto: Canadian Cancer Society; 2019 [updated 2019 Oct; cited 2024 May 17]. Available from: https://cancer.ca/en/treatments/side-effects/vision-changes
  • Chuck RS, Dunn SP, Flaxel CJ, Gedde SJ, Mah FS, Miller KM, Wallace DK, Musch DC. Comprehensive adult medical eye evaluation preferred practice pattern. Ophthalmol. 2021 Jan 1;128(1):P1-29.
  • Countess of Chester Hospital. Key priorities and guidance for care in the last few days and hours of life (Hospital version, 5th ed). Chester: NHS Foundation Trust; 2018.
  • Cummins R, Heraghty J. Vision and eye healthcare study in residential aged care facilities. Sydney: Macular Disease Foundation Australia; 2018.
  • Monaco WA, Crews JE, Nguyen AT, Arif A. Prevalence of vision loss and associations with age-related eye diseases among nursing home residents aged ≥ 65 years. J Am Med Dir Assoc. 2021 Jun 1;22(6):1156-61.
  • Stolwijk ML, van Nispen RM, van der Ham AJ, Veenman E, van Rens GH. Barriers and facilitators in the referral pathways to low vision services from the perspective of patients and professionals: A qualitative study. BMC Health Serv Res. 2023 Jan 21;23(1):64.

Faecal incontinence

  • Continence Foundation of Australia. Bristol Stool Chart [Internet]. Melbourne: Continence Foundation of Australia; 2019 [updated 2024 Feb 9; cited 31 May 2024]. Available from: https://www.continence.org.au/bristol-stool-chart
  • Gibson W, Johnson T, Kirschner‐Hermanns R, Kuchel G, Markland A, Orme S, et al. Incontinence in frail elderly persons: Report of the 6th International Consultation on Incontinence. Neurourol Urodyn. 2021;40(1):38–54.
  • Guinane J, Crone R. Management of faecal incontinence. Aust J Gen Pract. 2018; 47:40-3.
  • Jackson D. Incontinence in palliative care: Assessment to promote dignity. Br J Community Nurs. 2022;27(5):242–50.
  • National Ageing Research Institute. A best practice model of continence care for residential aged care [Internet]. Melbourne: NARI; 2022 [cited 2024 May 31]. Available from: https://www.nari.net.au/model-of-continence-care
  • Palmer SJ. Faecal incontinence in palliative and end-of-life care. Br J Community Nurs. 2019 Nov 2;24(11):528-532.

Frailty

  • Correia I, Simas Â, Chaves S, Paixão AI, Catarino A, Gonçalves-Pereira J. The PALliative MUlticenter Study in Intensive Care (PalMuSIC). Results from a multicenter study addressing frailty and palliative care interventions in Intensive Care Units in Portugal. J Palliat Care. 2022 Oct;37(4):552-61.
  • Hamaker ME, van den Bos F, Rostoft S. Frailty and palliative care. BMJ Support Palliat Care. 2020 Sep 1;10(3):262-4.
  • Hope AA, Enilari OM, Chuang E, Nair R, Gong MN. Prehospital frailty and screening criteria for palliative care services in critically ill older adults: An observational cohort study. J Palliat Med. 2021 Feb 1;24(2):252-6.
  • Lee H, Lee E, Jang IY. Frailty and comprehensive geriatric assessment. J Korean Med Sci. 2020 Jan 1;35(3).
  • Martin FC, O’Halloran AM. Tools for assessing frailty in older people: General concepts. Adv Exp Med Biol. 2020;1216:9-19.
  • Mota-Romero E, Tallón-Martín B, García-Ruiz MP, Puente-Fernandez D, García-Caro MP, Montoya-Juarez R. Frailty, complexity, and priorities in the use of advanced palliative care resources in nursing homes. Medicina. 2021 Jan 14;57(1):70.
  • Ruiz JG, Dent E, Morley JE, Merchant RA, Beilby J, Beard J, et al. Screening for and managing the person with frailty in primary care: ICFSR consensus guidelines. J Nutr Health Aging. 2020 Sep;24:920-7.
  • Strang P, Schultz T. The impact of frailty on palliative care receipt, emergency room visits and hospital deaths in cancer patients: A registry-based study. Curr Oncol. 2023 Jul 11;30(7):6623-33.
  • Thompson MQ, Theou O, Yu S, Adams RJ, Tucker GR, Visvanathan R. Frailty prevalence and factors associated with the Frailty Phenotype and Frailty Index: Findings from the North West Adelaide Health Study. Australas J Ageing. 2018;37(2):120-6.
  • Veronese N, Custodero C, Cella A, Demurtas J, Zora S, Maggi S, et al. Prevalence of multidimensional frailty and pre-frailty in older people in different settings: A systematic review and meta-analysis. Ageing Res Rev. 2021 Dec 1;72:101498.

Grief and loss among older people, families and residents

  • MacArthur ND, Kirby E, Mowll J. Bereavement affinities: A qualitative study of lived experiences of grief and loss. Death Stud. 2023 Aug 9;47(7):836-46.
  • Schladitz K, Löbner M, Stein J, Weyerer S, Werle J, Wagner M, et al. Grief and loss in old age: Exploration of the association between grief and depression. J Affec Disord. 2021 Mar 15;283:285-92.
  • Stroebe M, Stroebe W, Schut H, Boerner K. Grief is not a disease but bereavement merits medical awareness. Lancet. 2017;389(10067):347-9.
  • Thompson C, Morris D, Williams K. Bereavement support and prolonged grief: Issues for residential aged care (Issues brief). Wollongong: Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.
  • Thompson C, Williams K, Masso M, Morris D, Kobel C, Duncan C, et al. Research into services and needs for people experiencing complicated grief: Final report. Wollongong: Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.
  • Tieman J, Vandersman P, Brooksbank M, Swetenham K. Supporting the grief, loss and bereavement needs of families of older people living in residential aged care. RePaDD White Paper. Adelaide: Flinders University Research Centre for Palliative Care, Death and Dying; 2021.
  • Victoria State Government. Dealing with grief and loss [Internet]. Melbourne: Victorian Department of Health; 2015 [updated 2024 Mar 6; cited 2024 May 31]. Available from: https://www.health.vic.gov.au/patient-care/palliative-care-grief-and-loss
  • Williams K, Thompson C, Morris D. Prolonged grief: Applying the evidence in the primary care setting: Issues brief for primary health networks. Wollongong: Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.

Grief and loss among aged care staff

  • Gilbert S, Mullen J, Kelloway EK, Dimoff J, Teed M, McPhee T. The CARE model of employee bereavement support. J Occup Health Psychol. 2021 Oct;26(5):405.
  • Thompson C, Morris D, Williams K. Bereavement support and prolonged grief: Issues for residential aged care (Issues Brief). Wollongong: Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.
  • Thompson C, Williams K, Masso M, Morris D, Kobel C, Duncan C, et al. Research into services and needs for people experiencing complicated grief: Final report. Wollongong: Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.
  • Williams K, Thompson C, Morris D. Prolonged grief: Applying the evidence in the primary care setting - Issues brief for primary health networks. Wollongong: Australia Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.

Myths about morphine

  • Jackson VA, Leiter RE. Ethical considerations in effective pain management at the end of life [Internet]. UpToDate; 2021 [updated 2022 Feb; cited 2024 May 31]. Available from: https://helen.drbinhthanh.com/uptodate2/show/2201.html
  • Kurita GP, Sjøgren P. Management of cancer pain: Challenging the evidence of the recent guidelines for opioid use in palliative care. Pol Arch Intern Med. 2021 Nov 30;131(11):1-5.
  • Schofield G, Baker I, Bullock R, Clare H, Clark P, Willis D, Gannon C, George R. Palliative opioid use, palliative sedation and euthanasia: Reaffirming the distinction. J Med Ethics. 2020 Jan 1;46(1):48-50.
  • Therapeutic Guidelines Limited. Managing acute pain in older people [Internet]. Melbourne: Therapeutic Guidelines Limited; 2020 [cited 2024 May 31]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Pain%20and%20Analgesia&topicfile=acute-pain-older-people
  • Therapeutic Guidelines Limited. Terminal care: Care in the last days of life [Internet]. Melbourne: Therapeutic Guidelines Limited; 2016 [cited 2024 May 31]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Palliative%20Care&topicfile=terminal-care-in-last-days-of-life
  • Therapeutic Guidelines Limited. Using opioids in palliative care [Internet]. Melbourne: Therapeutic Guidelines Limited; 2016 [updated 2020 Dec; cited 2024 May 31]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Palliative%20Care&topicfile=palliative-care-pain-opioid-therapy&guidelinename=Palliative%20Care&sectionId=toc_d1e47#toc_d1e47
  • Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How family caregivers of cancer patients manage symptoms at home: A systematic review. Int J Nurs Stud. 2018;85:68-79

Nutrition and hydration

  • American Nurses Association (ANA). Nutrition and hydration at the end of life - Position statement. Silver Spring: ANA; 2017.
  • Carter AN. To what extent does clinically assisted nutrition and hydration have a role in the care of dying people? J Palliat Care. 2020 Oct;35(4):209-16.
  • Countess of Chester Hospital. Key priorities and guidance for care in the last few days and hours of life (Hospital version, 5th ed). Chester: NHS Foundation Trust; 2018.
  • Durmaz FG, Kızılarslanoğlu MC. Evaluation of the nutritional status of inpatients by using different malnutrition screening methods in a palliative care center: A cross-sectional study. Clin Sci Nutr. 2023 Apr 1;5(1):22-8.
  • Farrer K, Teubner A. Nutritional support in palliative care. Medicine. 2023 May 31.
  • O’Hara P. The management of nutrition for palliative care patients. Links to Health and Social Care. 2017;2(1):21-38.
  • palliAGED. Nutrition [Internet]. Adelaide: palliAGED; 2017 [updated 2021 Jun 22; cited 2024 Jun 24]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Nutrition
  • Rapp L, Sourdet S, Vellas B, Lacoste-Ferre MH. Oral health and the frail elderly. J Frailty Aging. 2017;6(3):154-60.

Opioid analgesics

  • Government of Western Australia. How to use the opioid conversion guide. Peth: Western Australia Department of Health; 2024.
  • Government of Western Australia. Opioid conversion guide. Perth: Western Australia Department of Health End-of-Life Care Program; 2024.
  • Pickard J, McDonald E, Hindmarsh J. Opioid use in palliative care: Selection, initiation and optimisation. Pharm. J. 2020;305.
  • Stein C. Opioid analgesia: Recent developments. Curr Opin Support Palliat Care. 2020 Jun 1;14(2):112-7.
  • Therapeutic Guidelines Limited. Managing acute pain in older people [Internet]. Melbourne: Therapeutic Guidelines Limited; 2020 [cited 2024 May 31]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Pain%20and%20Analgesia&topicfile=acute-pain-older-people
  • Therapeutic Guidelines Limited. Terminal care: Care in the last days of life [Internet]. Melbourne: Therapeutic Guidelines Limited; 2016 [cited 2024 Jun 14]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Palliative%20Care&topicfile=terminal-care-in-last-days-of-life
  • Therapeutic Guidelines Limited. Using opioids in palliative care [Internet]. Melbourne: Therapeutic Guidelines Limited; 2016 [updated 2020 Dec, cited 2024 May 31]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Palliative%20Care&topicfile=palliative-care-pain-opioid-therapy&guidelinename=Palliative%20Care&sectionId=toc_d1e47#toc_d1e47
  • Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How family caregivers of cancer patients manage symptoms at home: A systematic review. Int J Nurs Stud. 2018;85:68-79.

Oral care

  • Aged Care Quality and Safety Commission. Supporting daily oral health care in residential aged care. Canberra: Australian Government; 2024.
  • Aquilanti L, Santarelli A, Mascitti M, Procaccini M, Rappelli G. Dental care access and the elderly: What is the role of teledentistry? A systematic review. Int J Environ Res Public Health. 2020 Dec;17(23):9053.
  • Australian institute of Health and Welfare. Oral health and dental care in Australia [Internet]. Cat. no: DEN 231.Canberra: AIHW; 2023 [cited 2024 May 31]. Available from: https://www.aihw.gov.au/reports/dental-oral-health/oral-health-and-dental-care-in-australia/contents/about
  • Chan AK, Tamrakar M, Jiang CM, Lo EC, Leung KC, Chu CH. Common medical and dental problems of older adults: A narrative review. Geriatrics. 2021 Aug 6;6(3):76.
  • Everaars B, Weening-Verbree LF, Jerković-Ćosić K, Schoonmade L, Bleijenberg N, de Wit NJ, et al. Measurement properties of oral health assessments for non-dental healthcare professionals in older people: A systematic review. BMC Geriatr. 2020 Dec;20:1-8.
  • Fitzgerald R, Gallagher J. Oral health in end-of-life patients: A rapid review. Spec Care Dentist. 2018;38(5):291-8.
  • Furuya J, Suzuki H, Hidaka R, Koshitani N, Motomatsu Y, Kabasawa Y, et al. Factors affecting the oral health of inpatients with advanced cancer in palliative care. Support Care Cancer. 2022 Feb 1:1-9.
  • Hoben M, Kent A, Kobagi N, Huynh KT, Clarke A, Yoon MN. Effective strategies to motivate nursing home residents in oral care and to prevent or reduce responsive behaviors to oral care: A systematic review. PLoS One. 2017;12(6):e0178913.
  • Jones JA, Chavarri-Guerra Y, Corrêa LB, Dean DR, Epstein JB, Fregnani ER, et al. MASCC/ISOO expert opinion on the management of oral problems in patients with advanced cancer. Support Care Cancer. 2022 Nov;30(11):8761-73.
  • National Institute for Health and Care Excellence. Oral health in care homes. Manchester: NICE; 2017.
  • Palati S, Ramani P, Shrelin HJ, Sukumaran G, Ramasubramanian A, Don KR, Jet al.  Knowledge, attitude and practice survey on the perspective of oral lesions and dental health in geriatric patients residing in old age homes. Indian J Dent Res. 2020 Jan 1;31(1):22-5.
  • Patterson Norrie T, Villarosa AR, Kong AC, Clark S, Macdonald S, Srinivas R, et al. Oral health in residential aged care: Perceptions of nurses and management staff. Nurs Open. 2020 Mar;7(2):536-46.
  • Rapp L, Sourdet S, Vellas B, Lacoste-Ferre MH. Oral health and the frail elderly. J Frailty Aging. 2017;6(3):154-60.
  • Venkatasalu MR, Murang ZR, Ramasamy DT, Dhaliwal JS. Oral health problems among palliative and terminally ill patients: An integrated systematic review. BMC Oral Health. 2020 Dec;20:1-1.
  • Wright FAC, Law G, Chu SK, Cullen JS, Le Couteur DG. Residential age care and domiciliary oral health services: Reach-OHT-The development of a metropolitan oral health programme in Sydney, Australia. Gerodontology. 2017;34(4):420-6.

Pain management

  • Achterberg W, Lautenbacher S, Husebo B, Erdal A, Herr K. Pain in dementia. Pain Rep. 2020 Jan 1;5(1):e803.
  • Australian Pain Society. Pain in residential aged care facilities: Management strategies, 2nd edn. Sydney: The Australian Pain Society; 2019.
  • Australian Pain Society. Pain management guide (PMG) toolkit for aged care, 2nd edn.  Sydney: The Australian Pain Society; 2019.
  • Bhaskar A. Interventional pain management in patients with cancer-related pain. Postgrad Med. 2020 Nov 16;132(sup3):13-6.
  • Fürst P, Lundström S, Klepstad P, Strang P. Continuous subcutaneous infusion for pain control in dying patients: Experiences from a tertiary palliative care center. BMC Palliat Care. 2020 Dec;19:1-0.
  • Government of Western Australia. Statewide guidance for the safe, effective and ethical use of palliative sedation. Perth: Western Australia Department of Health; 2021.
  • McAnee G, Norwood K, Rosato M, Leavey G. Assessment of pain in people living with dementia at the end of life: A systematic review. Int J Palliat Nurs. 2021 Apr 2;27(2):72-85.
  • Munkombwe WM, Petersson K, Elgán C. Nurses’ experiences of providing nonpharmacological pain management in palliative care: A qualitative study. J Clin Nurs. 2020 May;29(9-10):1643-52.
  • Pain Australia. Medical research future fund dementia, aging and aged care mission roadmap. Canberra: Pain Australia; 2020.
  • Pain Australia. Submission to the Review of National Aged Care Quality Regulatory Processes. Canberra: Pain Australia; 2017.
  • palliAGED. Pain [Internet]. Adelaide: palliAGED; 2019 [updated 2024 Mar 12; cited 2024 Jun 14].
  • Pickard J, McDonald E, Hindmarsh J. Opioid use in palliative care: Selection, initiation and optimisation. Pharm J. 2020;305.
  • Queensland Dementia, Ageing and Frailty Network. Pain assessment and management. Brisbane: Queensland Government; 2023.
  • Stein C. Opioid analgesia: Recent developments. Curr Opin Support Palliat Care. 2020 Jun 1;14(2):112-7.
  • Therapeutic Guidelines Limited. Managing acute pain in older people [Internet]. Melbourne: Therapeutic Guidelines Limited; 2020 [cited 2024 Jun 14]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Pain%20and%20Analgesia&topicfile=acute-pain-older-people
  • Therapeutic Guidelines Limited. Pain in palliative care patients [Internet]. Melbourne: Therapeutic Guidelines Limited; 2016 [updated 2020 Dec; cited 2024 Jun 14]. Available from: https://tgldcdp.tg.org.au/viewTopic?etgAccess=true&guidelinePage=Palliative%20Care&topicfile=palliative-care-pain&guidelinename=Palliative%20Care&sectionId=toc_d1e47#toc_d1e47

People with specific needs

  • Aged Care Sector Committee Diversity Sub-group. Aged care diversity framework. Canberra: Australian Government Department of Health; 2017.
  • Australian Government. Aged care reform roadmap. Canberra: Department of Health and Aged Care; 2023.
  • CareSearch. Culturally appropriate – resources [Internet]. Adelaide: CareSearch; 2018 [updated 2021 Aug 2; cited 2024 Jun 14]. Available from: https://www.caresearch.com.au/Community/Diversity/For-Health-Professionals/Culturally-Appropriate/Culturally-Appropriate-Resources
  • CareSearch. Religious and cultural considerations [Internet]. Adelaide: CareSearch; 2021 [cited 2024 Jun 14]. Available from: https://www.caresearch.com.au/Health-Professionals/Nurses/The-Dying-Patient/After-Death-Care/Religious-and-Cultural-Considerations
  • COTA Australia. Culturally inclusive aged care [Internet]. Canberra: COTA Australia; 2017 [cited 2024 Jun 14]. Available from: https://cota.org.au/information/aged-care-for-providers/home-care-today-providers/consumer-engagement/culturally-inclusive-aged-care/
  • Fraser J. Little book of cultural tips, 3rd edn. Brisbane: Diversicare; 2015.
  • Government of Western Australia. Western Australian paediatric strategy for end-of-life and palliative care 2021-2028. Perth: Western Australia Department of Health; 2021.
  • Multicultural Advisory Service. Cultural assessment checklist. Brisbane: Ethnic Communities Council of Queensland; 2023.
  • Queensland University of Technology. Topic 4: Culture-centred care of people with life-limiting illnesses [Internet]. Brisbane: Palliative Care Curriculum for Undergraduates (PCC4U); 2024 [cited 2024 Jun 14]. Available from: https://pcc4u.org.au/learning/topics/topic4/

Psychosocial assessment and support

  • Cagle JG, Bunting M, Kelemen A, Lee J, Terry D, Harris R. Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: A systematic review. Heart Fail Rev. 2017;22(5):565-80.
  • Cherny NI, Fallon MT, Kaasa S, Portenoy RK, Currow DC. Oxford textbook of palliative medicine, 6th edn. Oxford: Oxford University Press; 2021
  • Clarkson P, Hughes J, Xie C, Larbey M, Roe B, Giebel CM, et al. Overview of systematic reviews: Effective home support in dementia care, components and impacts - Stage 1, psychosocial interventions for dementia. J Adv Nurs. 2017;73:2845-63.
  • Cleland J, Hutchinson C, Khadka J, Milte R, Ratcliffe J. What defines quality of care for older people in aged care? A comprehensive literature review. Geriatr Gerontol Int. 2021 Sep;21(9):765-78.
  • Crawford GB, Dzierżanowski T, Hauser K, Larkin P, Luque-Blanco AI, Murphy I, et al. ESMO Guidelines Committee. Care of the adult cancer patient at the end of life: ESMO Clinical Practice Guidelines. ESMO Open. 2021 Aug 1;6(4):100225.
  • Creighton AS, Davison TE, Kissane DW. The assessment of anxiety in aged care residents: A systematic review of the psychometric properties of commonly used measures. Int psychogeriatr. 2018;30(7):967-79.
  • Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One. 2018;13(1):e0189874.
  • Frias CE, Garcia-Pascual M, Montoro M, Ribas N, Risco E, Zabalegui A. Effectiveness of a psychoeducational intervention for caregivers of people with dementia with regard to burden, anxiety and depression: A systematic review. J Adv Nurs. 2020;76(3):787-802.
  • Fulton JJ, Newins AR, Porter LS, Ramos K. Psychotherapy targeting depression and anxiety for use in palliative care: A meta-analysis. J Palliat Med. 2018;21(7):1024-37.
  • Hardy F, Hair SA, Johnstone E. Social work: Possibilities for practice in residential aged-care facilities. Aust Soc Work. 2020 Oct 1;73(4):449-61.
  • HealthDirect. Older people and mental health. Canberra: HealthDirect; 2020 [updated 2024 Feb; cited 2024 Jun 14]. Available from: https://www.healthdirect.gov.au/older-people-and-mental-health
  • Human M. A biopsychosocial perspective on social work intervention to address emotional poverty of older persons in residential facilities. Stellenbosch University. 2024.
  • Joshy G, Thandrayen J, Koczwara B, Butow P, Laidsaar-Powell R, Rankin N, et al. Disability, psychological distress and quality of life in relation to cancer diagnosis and cancer type: Population-based Australian study of 22,505 cancer survivors and 244,000 people without cancer. BMC Med. 2020 Dec;18:1-5.
  • Kalánková D, Stolt M, Scott PA, Papastavrou E, Suhonen R. Unmet care needs of older people: A scoping review. Nurs Ethics. 2021 Mar;28(2):149-78.
  • Lloyd-Williams M. Psychosocial issues in palliative care: A community based approach for life limiting illness, 3rd edn. New York: Oxford University Press; 2018.
  • Martin M, Rice K, Murray CV, Rock AJ, Usher KJ. Distress and psychosocial support seeking: A comparison of rural and metropolitan oncology patient experiences. Aust J Rural Health. 2024 Feb;32(1):29-41.
  • Martinez M, Arantzamendi M, Belar A, Carrasco JM, Carvajal A, Rullan M, et al. 'Dignity therapy', a promising intervention in palliative care: A comprehensive systematic literature review. Palliat Med. 2017;31(6):492-509.
  • Prieto-Lobato JM, De la Rosa-Gimeno P, Rodríguez-Sumaza C, Marquina-Márquez A, Lucas-García JA. Social work at the end of life: Humanization of the process. J Soc Work. 2024 Mar;24(2):240-58.
  • Psycho-oncology Co-operative Research Group. Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients. Sydney; PoCoG; 2017.
  • Simning A, Simons KV. Treatment of depression in nursing home residents without significant cognitive impairment: A systematic review. Int Psychogeriatr. 2017;29(2):209-26.
  • Tsoi KK, Chan JY, Hirai HW, Wong SY. Comparison of diagnostic performance of Two-Question Screen and 15 depression screening instruments for older adults: Systematic review and meta-analysis. Br J Psychiatry. 2017;210(4):255-60.
  • Velosa T. Spiritual distress and depression in palliative care. In: Bollig G, Zelki E, editors. Palliative Care – Current Practice and Future Perspectives [Internet]. IntechOpen; 2024. Available from: http://dx.doi.org/10.5772/intechopen.1000392
  • Watson M, Ward S, Vallath N, Wells J, Campbell R. Oxford handbook of palliative care, 3rd edn. Oxford: Oxford University Press; 2019.
  • World Health Organization. Palliative care [Internet]. Geneva: WHO; 2024 [cited 2024 Jun 14]. Available from: https://www.who.int/health-topics/palliative-care
  • Xu M, Zhou W, Yang L, Liu G, Chen L. Effect of palliative care on the anxiety, depression and sleep quality in primary caregivers of elderly patients with terminal cancer. Am J Transl Res. 2021;13(4):3738.

Recognising deterioration

  • Bumgarner J. Syndrome of imminent death [Internet]. Appleton: Palliative Care Network of Wisconsin; 2023 [cited 2024 Jun 28]. Available from: https://www.mypcnow.org/fast-fact/syndrome-of-imminent-death/
  • Gold Standards Framework Team. The Gold Standards Framework Proactive Identification Guidance (PIG) 6th Edition. London: Royal College of General Practitioners; 2016.
  • Government of New South Wales. Clinical principles for end of life and palliative care. Sydney: NSW Government; 2021.
  • Government of Western Australia. The end-of-life framework. Perth: Western Australia Department of Health; 2015.
  • Government of Western Australia. Western Australian optimal paediatric palliative care pathway. Perth: Western Australia Department of Health; 2021.
  • palliAGED. Recognising changes [Internet]. Adelaide: palliAGED; 2017 [updated 2024 Jan; cited 2024 Jun 14]. Available from: https://www.palliaged.com.au/For-the-Community/Older-Australia/Recognising-Changes
  • Reymond L, Cooper K, Parker D, Chapman M. End-of-life care: Proactive clinical management of older Australians in the community. Canberra: The Royal Australian College of General Practitioners; 2016.
  • Walker RM, Boorman RJ, Vaux A, Cooke M, Aitken LM, Marshall AP. Identifying barriers and facilitators to recognition and response to patient clinical deterioration by clinicians using a behaviour change approach: A qualitative study. J Clin Nurs. 2021 Mar;30(5-6):803-18.
  • Weissman D, Rosielle D, Bukowy E. Diagnosis and treatment of terminal delirium [Internet]. Appleton: Palliative Care Network of Wisconsin; 2019 [cited 2024 Jun 28]. Available from: https://www.mypcnow.org/fast-fact/diagnosis-and-treatment-of-terminal-delirium/

Respiratory secretions

  • Arcuri JF, Abarshi E, Preston NJ, Brine J, Pires Di Lorenzo VA. Benefits of interventions for respiratory secretion management in adult palliative care patients: A systematic review. BMC Palliat Care. 2016 Aug 9;15:74.
  • Boland JW, Boland EG. Noisy upper respiratory tract secretions: Pharmacological management. BMJ Support Palliat Care. 2020 Sep 1;10(3):304-5.
  • Cherny NI, Fallon MT, Kaasa S, Portenoy RK, Currow DC. Oxford textbook of palliative medicine, 6th edn. Oxford: Oxford University Press; 2021.
  • Jansen K, Haugen DF, Pont L, Ruths S. Safety and effectiveness of palliative drug treatment in the last days of life: A systematic literature review. J Pain Symptom Manage. 2018 Feb;55(2):508-21.e3.
  • Kolb H, Snowden A, Stevens E. Systematic review and narrative summary: Treatments for and risk factors associated with respiratory tract secretions (death rattle) in the dying adult. J Adv Nurs. 2018 Jul;74(7):1446-62.
  • Kolb H, Snowden A, Stevens E, Atherton I. A retrospective medical records review of risk factors for the development of respiratory tract secretions (death rattle) in the dying patient. J Adv Nurs. 2018 Jul;74(7):1639-48.
  • Lanza M, Annunziata A, Fiorentino G. Noninvasive ventilation in end-of-life care and palliative care. In: Esquinas E, editor. Noninvasive ventilation in sleep medicine and pulmonary critical care. Cham: Springer; 2020. P. 111-124.
  • Moons L, De Roo ML, Deschodt M, Oldenburger E. Death rattle: Current experiences and non-pharmacological management-a narrative review. Ann Palliat Med. 2023 Dec 4:apm-23.
  • Potter J, Korownyk CS. Reducing death rattle at the end of life. Can Fam Physician. 2023 Jul;69(7):477.
  • Van Esch HJ, Lokker ME, Rietjens J, van Zuylen L, van der Rijt CC, van der Heide A. Understanding relatives’ experience of death rattle. BMC Psychol. 2020 Dec;8:1-9.

Signs of imminent death

  • Alsuhail AI, Duraisamy BP, Alkhudhair A, Alshammary SA, AlRehaili A. The accuracy of imminent death diagnosis in a palliative care setting. Cureus. 2020 Aug 1;12(8).
  • Cherny NI, Fallon MT, Kaasa S, Portenoy RK, Currow DC. Oxford textbook of palliative medicine, 6th edn. Oxford: Oxford University Press; 2021.
  • Eisenmann Y, Golla H, Schmidt H, Voltz R, Perrar KM. Palliative care in advanced dementia. Front Psychiatry. 2020 Jul 21;11:543966.
  • End-of-Life Care Program, Department of Health (WA). Understanding the dying process: An information booklet for families. Perth: Government of Western Australia, Department of Health; 2023.
  • Mori M, Morita T, Bruera E, Hui D. Prognostication of the last days of life. Cancer Res Treat. 2022 Jul;54(3):631.
  • palliAGED. Recognising dying [Internet]. Adelaide: palliAGED; 2017 [updated 2023 Dec 4; cited 2024 Jun 7]. Available from: https://apps.caresearch.com.au/palliAGEDnurse/Recognising-Dying
  • palliAGED. Terminal care [Internet]. Adelaide: palliAGED; 2019 [updated 2021 Jul 6; cited 2024 Jun 7]. Available from: https://www.palliaged.com.au/tabid/4462/Default.aspx
  • Queensland Government, Metro South Health. Residential aged care end of life care pathway [Internet]. Brisbane: Queensland Government, Metro South Health; 2019 [updated 2024 Apr 4; cited 2024 Jun 7]. Available from: https://metrosouth.health.qld.gov.au/raceolcp
  • Sandvik RK, Selbaek G, Bergh S, Aarsland D, Husebo BS. Signs of imminent dying and change in symptom intensity during pharmacological treatment in dying nursing home patients: A prospective trajectory study. J Am Med Dir Assoc. 2016 Sep 1;17(9):821-7.

Skin and wound care

  • Antony L, Thelly AS, Mathew JM. Evidence-based clinical practice guidelines for caregivers of palliative care patients on the prevention of pressure ulcer. Indian J Palliat Care. 2023 Jan-Mar;29(1):75-81.
  • CareSearch. Malignant wounds [Internet]. Adelaide: CareSearch; 2017 [updated 2023 Nov 9; cited 2024 Jun 7]. Available from: https://www.caresearch.com.au/Health-Professionals/Nurses/Clinical-Care/Symptom-Management/Malignant-Wounds
  • Ferris A, Price A, Harding K. Pressure ulcers in patients receiving palliative care: A systematic review. Palliat Med. 2019 Jul;33(7):770-782.
  • Government of New South Wales. Pressure injury prevention and management. Sydney: NSW Government; 2021.
  • Government of Victoria. Identifying skin problems [Internet]. Victorian Department of Health. Melbourne: VIC Government; 2024 [cited 2024 Jun 7]. Available from: https://www.health.vic.gov.au/patient-care/identifying-skin-problems
  • Government of Victoria. Pressure injuries. Melbourne: VIC Government; 2018.
  • LeBlanc K, Baranoski S, Christensen D, Langemo D, Edwards K, Holloway S, et al. The art of dressing selection: A consensus statement on skin tears and best practice. Adv Skin Wound Care. 2016;29(1):32-46.
  • Mäki-Turja-Rostedt S, Stolt M, Leino-Kilpi H, Haavisto E. Preventive interventions for pressure ulcers in long-term older people care facilities: A systematic review. J Clin Nurs. 2019 Jul;28(13-14):2420-2442.
  • Raepsaet C, Blomberg K, Falk-Brynhildsen K, Gethin G, Beeckman D. Promoting and maintaining skin integrity in end-of-life care: A systematic review. Adv Skin Wound Care. 2022 Nov 1;35(11):617-631.
  • Ripley KR, Collier M. Managing tissue viability issues in patients with cancer approaching the end of life. Nurs Stand. 2017;31(25):54-61.
  • Sezgin D, Geraghty J, Graham T, Blomberg K, Charnley K, Dobbs S, et al. Defining palliative wound care: A scoping review by European Association for Palliative Care wound care taskforce. J Tissue Viability. 2023 Nov;32(4):627-634.

Spiritual care

  • Batstone E, Bailey C, Hallett N. Spiritual care provision to end‐of‐life patients: A systematic literature review. J Clin Nurs. 2020 Oct;29(19-20):3609-24.
  • Best MC, Vivat B, Gijsberts MJ. Spiritual care in palliative care. Religions. 2023. Feb 28;14(3):320.
  • Meaningful Ageing Australia. ConnecTo Spiritual Screening Tool: Leader’s guide. Melbourne: Meaningful Ageing Australia; 2018.
  • palliAGED. Spiritual care [Internet]. Adelaide: palliAGED; 2017 [updated 2021 Jun 14; cited 2024 Jun 7]. Available from: https://www.palliaged.com.au/Evidence-Centre/Evidence-Summaries/Spiritual-Care
  • Puchalski CM, Ferrell B, Otis-Green S, Handzo G. Overview of spirituality in palliative care. In: Block S, Givens J, editors. UpToDate [Internet]. Waltham: UpToDate; 2024 [cited 2024 Jun 28]. Available from: https://medilib.ir/uptodate/show/2198

 

Last updated 01 July 2024