References - Practice Tip Sheets
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References - Practice Tip Sheets

Introduction and care provider issues

Aged Care Access and Assessment

  • Australian Government. Aged Care Assessment Programme Guidelines. Canberra, Australia: Department of Social Services; 2015.
  • Australian Government. How assessment works. Canberra, Australia: myagedcare; 2018 [updated 14 May 2018].
  • Australian Government. Assessment for Aged Care. Canberra, Australia: Department of Human Services; 2018 [updated 12 February 2018].
  • Australian Government. My Aged Care Assessment Manual: For Regional Assessment Services and Aged Care Assessment Teams. Canberra, Australia: myagedcare; 2018.
  • NSW Government. Assessment Pathways in Aged Care - RAS and ACAP. Sydney, Australia; 2017 [updated 19 July 2017].

Palliative Care

  • palliAGED. Recognising changes. Adelaide, Australia; 2017 [updated September 2018].
  • World Health Organization (WHO). WHO Definition of Palliative Care Geneva, Switzerland: WHO; 2016.
  • World Health Organization (WHO). Palliative Care. Geneva, Switzerland: WHO; 2018.

Self Care

  • CareSearch. Self-Care [Internet]. Adelaide, Australia: CareSearch; 2017 [updated 2017 Feb 8; cited 2019 May 6]. Available from: https://www.caresearch.com.au/caresearch/tabid/2173/Default.aspx
  • 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. International Psychogeriatrics. 2018 Nov 13:1-14.
  • Gillman L, Adams J, Kovac R, Kilcullen A, House A, Doyle C. Strategies to promote coping and resilience in oncology and palliative care nurses caring for adult patients with malignancy: a comprehensive systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2015 Jun 12;13(5):131-204.
  • Jones SH. A self-care plan for hospice workers. The American Journal of Hospice & Palliative Care. 2005 Mar-Apr;22(2):125-8.
  • Mills J, Wand T, Fraser JA. Palliative care professionals' care and compassion for self and others: a narrative review. International Journal of Palliative Nursing. 2017 May 2;23(5):219-29.
  • National Institute for Health and Care Excellence (NICE). NICE Quality Standards: Information for adults who use NHS end of life care services and their families and carers. London: NICE, 2011.
  • Palliative Care Australia (PCA). National Palliative Care Standards 5th edition. Canberra: PCA; 2018.
  • Powell MJ, Froggatt K, Giga S. Resilience in inpatient palliative care nursing: a qualitative systematic review. BMJ Supportive & Palliative Care. 2019 Feb 26.
  • Rose J, Glass N. Enhancing emotional well-being through self-care: the experiences of community health nurses in Australia. Holistic Nursing Practice. 2008 Nov-Dec;22(6):336-47.
  • Sanchez-Reilly S, Morrison LJ, Carey E, Bernacki R, O'Neill L, Kapo J, et al. Caring for oneself to care for others: physicians and their self-care. The Journal of Supportive Oncology. 2013 Jun;11(2):75-81.
  • Scott E. 5 Self-Care Practices for Every Area of Your Life [Internet]. 2019 [updated 2019 Aug 12; cited 2019 Aug 15]. Available from: https://www.verywellmind.com/self-care-strategies-overall-stress-reduction-3144729

Decision making and communication

Advance Care Planning

  • Advance Care Planning Australia. Advance Care Planning Melbourne, Australia; 2018.
  • Australian Government. Palliative Care - Advance Care Planning Canberra, Australia: Department of Health; 2017 [updated 23 October 2017].
  • Bird S. Advance care planning [online]. Australian Family Physician. 2014;43(8):526-8.
  • Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA. Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis. Journal of the American Medical Directors Association. 2014;15(7):477-89.
  • palliAGED. Advance Care Planning (ACP) (Practice Centre) Adelaide, Australia; 2018 [updated 18 May 2018].
  • palliAGED. Advance Care Planning (ACP) (Evidence Centre) Adelaide, Australia; 2018 [updated 22 October 2018].
  • Queensland University of Technology (QUT). Legal Overview Brisbane, Australia: End of Life Law in Australia; 2018 [updated 8 October 2018].
  • Waller A, Nair BKR. Advance Care Planning. In: Nair BKR, editor. Geriatric Medicine: A Problem-Based Approach. Singapore: Springer Singapore; 2018. p. 295-306.

After Death Choices

  • Australian Brain Bank Network. About Donating Brain Tissue to Research. Melbourne, Australia; 2015 [updated 20 March 2015].
  • Australian Government. What to do following a death. Canberra, Australia: Department of Human Services; 2019 [updated 29 January 2019].
  • Government NSW. Body donation. Sydney, Australia; 2016 [updated 6 December 2016].
  • Queensland Government. Residential aged care end of life care pathway. Brisbane, Australia; 2016 [updated 11 April 2016].

Case Conferences

  • Agar M, Beattie E, Luckett T, Phillips J, Luscombe G, Goodall S, et al. Conducting a facilitated case conference; 2015 [updated 08 December 2015].
  • Agar M, Beattie E, Luckett T, Phillips J, Luscombe G, Goodall S, et al. Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol. BMC Palliative Care. 2015;14(1):63.
  • palliAGED. Case Conferences (Practice Centre). Adelaide, Australia; 2017 [updated 23 October 2017].
  • palliAGED. Case Conferences (Evidence Centre). Adelaide, Australia; 2017 [updated 23 October 2017].

Continuity of Care

  • Crawford GB. Continuity of care: Palliative care in the community. Cancer Forum. 2002;26(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. Palliative medicine. 2017;31(10):946-55.
  • Palliative Care Australia. Palliative Care Service Development Guidelines. Canberra, Australia; 2018.
  • Schers HJ, van den Bosch WJHM, Uijen AA, Schellevis FG. How unique is continuity of care? A review of continuity and related concepts. Family Practice. 2011;29(3):264-71.
  • Veras RP, Caldas CP, Motta LBd, Lima KCd, Siqueira RC, Rodrigues RTdSV, et al. Integration and continuity of Care in health care network models for frail older adults. Revista de saude publica. 2014;48(2):357-65.

Culturally Responsive Care - Communication

  • Australian Institute of Health and Welfare (AIHW). Older Australia at a Glance [Internet]. 2018 [updated 2018 Sep 10; cited 2019 Aug 15]; AIHW cat. no. AGE 87. Available from: https://www.aihw.gov.au/reports/olderpeople/older-australia-at-a-glance/contents/summary
  • 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.
  • Broom A, Good P, Kirby E, Lwin Z. Negotiating palliative care in the context of culturally and linguistically diverse patients. Internal Medicine Journal. 2013 Sep;43(9):1043-6.
  • Butow PN, Bell ML, Aldridge LJ, Sze M, Eisenbruch M, Jefford M, et al. Unmet needs in immigrant cancer survivors: a cross-sectional population-based study. Supportive Care in Cancer. 2013 Sep;21(9):2509-20.
  • CareSearch. Culturally Safe and Responsive Care [Internet]. Adelaide, Australia: CareSearch; 2017 [updated 2017 Mar 15; cited 2019 Jul 29]. Available from: https://www.caresearch.com.au/caresearch/tabid/3828/Default.aspx.
  • Federation of Ethnic Communities’ Councils of Australia (FECCA). Review of Australian Research on Older People from Culturally and Linguistically Diverse Backgrounds. Canberra: FECCA; 2015 Mar.
  • Fraser J. Little Book of Cultural Tips. Brisbane, Australia: Diversicare; 2017.
  • Indigenous Allied Health Australia (IAHA). Position Paper: Culturally Responsive Health Care. Canberra: IAHA; 2013.
  • Nguyen HT. Patient centred care - cultural safety in indigenous health. Australian Family Physician. 2008; 37(12):990-4.
  • Partain DK, Ingram C, Strand JJ. Providing Appropriate End-of-Life Care to Religious and Ethnic Minorities. Mayo Clinic Proceedings. 2017 Jan;92(1):147-52.
  • 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. Palliative & Supportive Care. 2018 Dec;16(6):785-99.

End-of-Life Care Pathways

  • Care pathways for long-term conditions: Using type 2 diabetes as an example. Best Practice Journal. 2012(47):38-41.
  • 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 Medical Ethics. 2017;18(1):48.
  • Joenperä J, Butler J. Pathways to permanent residential aged care. Insight+. 2017;38.
  • NSW Government. Assessment Pathways in Aged Care - RAS and ACAP. Sydney, Australia; 2017 [updated 19 July 2017.
  • Queensland Government. Residential aged care end of life care pathway. Brisbane, Australia; 2016 [updated 11 April 2016.
  • Reymond L, Israel FJ, Charles MA. A residential aged care end-of-life care pathway (RAC EoLCP) for Australian aged care facilities. Australian health review : a publication of the Australian Hospital Association. 2011;35(3):350-6.
  • Schrijvers G, van Hoorn A, Huiskes N. The care pathway: concepts and theories: an introduction. International journal of integrated care. 2012;12(Spec Ed Integrated Care Pathways):e192-e.
  • 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 research. 2018;3:15.

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. Australian Journal of Primary Health. 2018 Dec 20.
  • Australian Institute of Health and Welfare (AIHW). Older Australia at a glance: Culturally & linguistically diverse people [Internet]. Canberra: AIHW; 2018 [updated 2018 Sep 10; cited 2019 Aug 9] Available from: https://www.aihw.gov.au/reports/older-people/older-australia-at-a-glance/contents/demographics-of-olderaustralians/australias-changing-cultural-linguistic-profile
  • Australian Government Department of Health. National Aboriginal and Torres Strait Islander Flexible Aged Care Program - Program Manual 2018. Canberra: Department of Health; 2018.
  • Brooke NJ. Needs of Aboriginal and Torres Strait Islander clients residing in Australian residential aged-care facilities. The Australian Journal of Rural Health. 2011 Aug;19(4):166-70.
  • CareSearch. Culturally Safe and Responsive Care [Internet]. Adelaide, Australia: CareSearch; 2017 [updated 2017 Mar 15; cited 2019 Jul 29]. Available from: https://www.caresearch.com.au/caresearch/tabid/3828/Default.aspx
  • CareSearch. Talking Together [Internet]. Adelaide, Australia; 2017 [updated 2017 Jul 25; cited 2019 Jul 29]. Available from: https://www.caresearch.com.au/caresearch/tabid/3495/Default.aspx
  • Flicker L, Holdsworth K. Aboriginal and Torres Strait Islander people and dementia: a review of the research. Canberra: Alzheimer's Australia; 2014 Contract No.: Paper 41.
  • Indigenous Allied Health Australia (IAHA). Position Paper: Culturally Responsive Health Care. Canberra: IAHA; 2013.
  • Indigenous Allied Health Australia (IAHA). Cultural Responsiveness in Action: An IAHA Framework. Canberra: IAHA; 2015.
  • LoGiudice D, Smith K, Flicker L, Thomas J, Almeida O, Lautenschlager N, et al. Kimberley Indigenous Cognitive Assessment (KICA); 2004.
  • Northern Sydney Local Health District (NSLHD). Death and Dying in Aboriginal and Torres Strait Islander Culture (Sorry Business) A Framework for Supporting Aboriginal and Torres Strait Islander Peoples Through Sad News and Sorry Business. Sydney: NSLHD; 2015 Aug.

People with Intellectual Disability - Communication

  • Bigby C, Webber R, Bowers B, McKenzie-Green B. A survey of people with intellectual disabilities living in residential aged care facilities in Victoria. Journal of Intellectual Disability Research: JIDR. 2008;52(Pt 5):404- 14.
  • Bowers BR, Webber R, Bigby C. Health issues of older people with intellectual disability in group homes† . Journal of Intellectual and Developmental Disability. 2014;39(3):261-269.
  • Chew KL, Iacono T, Tracy J. Overcoming communication barriers - working with patients with intellectual disabilities. Australian Family Physician. 2009 Jan-Feb;38(1-2):10-4.
  • Ghaziuddin M, Ghaziuddin N, Greden J. Depression in persons with autism: implications for research and clinical care. Journal of Autism and Developmental Disorders. 2002 Aug;32(4):299-306.
  • Helen Sanderson Associates. Living well - Using person centred thinking tools with people who have a life limiting illness. Manchester, UK: Helen Sanderson Associates.
  • Janicki MP, Davidson PW, Henderson CM, McCallion P, Taets JD, Force LT, et al. Health characteristics and health services utilization in older adults with intellectual disability living in community residences. Journal of Intellectual Disability Research: JIDR. 2002 May;46(Pt 4):287-98.
  • 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. Journal of Applied Research in Intellectual Disabilities. 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. International Journal of Palliative Nursing. 2019 Jan 2;25(1):4-18.
  • 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. Journal of Applied Research in Intellectual Disabilities. 2017 Nov;30(6):1151-9.
  • Wiese M, Dew A, Stancliffe RJ, Howarth G, Balandin S. ‘If and when?’: the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying. Journal of Intellectual Disability Research. 2013 Oct;57(10):980-92.

Person-Centred Care

  • Australian Government. Aged Care Quality Standards [Internet]. 2019 [updated 2019 Jul 1; cited 2019 Aug 15]. Available from https://agedcare.health.gov.au/quality/aged-care-quality-standards
  • 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 Medicine. 2018 Feb 6;15(2):e1002500.
  • Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care. BMJ. 2007 Jul 28;335(7612):184.
  • Fossey J, Masson S, Stafford J, Lawrence V, Corbett A, Ballard C. The disconnect between evidence and practice: a systematic review of person-centred interventions and training manuals for care home staff working with people with dementia. International Journal of Geriatric Psychiatry. 2014 Aug;29(8):797-807.
  • Gallagher A, Li S, Wainwright P, Jones IR, Lee D. Dignity in the care of older people - a review of the theoretical and empirical literature. BMC Nursing. 2008 Jul 11;7:11.
  • Herman RE, Williams KN. Elderspeak's influence on resistiveness to care: focus on behavioral events. American Journal of Alzheimer's Disease and Other Dementias. 2009 Oct-Nov;24(5):417-23.
  • Kim SK, Park M. Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis. Clinical Interventions in Aging. 2017 Feb 17;12:381-97.
  • Slater L. Person-centredness: a concept analysis. Contemporary Nurse. 2006 Oct;23(1):135-44.
  • Tellis-Nayak V. A person-centered workplace: the foundation for person-centered caregiving in long-term care. Journal of the American Medical Directors Association. 2007 Jan;8(1):46-54.

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 Canberra. 2018 [updated 2021 Apr 09]. 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. Oxford: Oxford University Press; 2019.
  • World Health Organization (WHO). WHOQOL: Measuring quality of life. Geneva: WHO; 2022. 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.
  • 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.
  • He Leow MQ, Wai Chi Chan S. Factors affecting caregiver burden of terminally ill adults in the home setting - a systematic review. JBI Libr Syst Rev. 2011;9(45):1883-916.
  • 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 - Residential Care. Canberra, Australia: Department of Health; 2018 [updated 05 October 2018].
  • Australian Government. Charter of Care Recipients' Rights and Responsibilities - Home Care. Canberra, Australia: Department of Health; 2018 [updated 05 October 2018].
  • National Breast and Ovarian Cancer Centre. Breaking bad news: Evidence from the literature and recommended steps. National Breast and Ovarian Cancer Centre, Surry Hills, NSW: Sydney, Australia; 2007.
  • Levy-Storms L. Therapeutic communication training in long-term care institutions: recommendations for future research. Patient education and counseling. 2008;73(1):8-21.
  • McGilton KS, Boscart V, Fox M, Sidani S, Rochon E, Sorin-Peters R. A systematic review of the effectiveness of communication interventions for health care providers caring for patients in residential care settings. Worldviews on evidence-based nursing. 2009;6(3):149-59.
  • National Breast Cancer Centre. Breaking Bad News – Recommendations summary. Sydney, Australia; 2007.

Talking within the Aged Care Team

  • palliAGED. Communication at End-of-Life (Practice Centre). Adelaide, Australia; 2017 [updated 25 May 2017].
  • palliAGED. Communication at End-of-Life (Evidence Centre). Adelaide, Australia; 2017 [updated 24 May 2017].
  • palliAGED. Developing Communication Skills (Practice Centre). Adelaide, Australia; 2017 [updated 22 May 2017].

Care issues

Advanced Dementia

  • Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC. Oxford Textbook of Palliative Medicine. 5th ed. Oxford, UK: Oxford University Press; 2015.
  • Dementia Australia. Palliative care (Help Sheet 21). Canberra: Dementia Australia; 2012.
  • Dementia Australia. Dementia statistics [Internet]. Canberra: Dementia Australia; 2019 [updated 2019 Apr].
  • 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 (London, England). 2016.
  • Hudson R, Allan R. Affirming Life – What is a palliative approach? Melbourne, Australia: Palliative Care Victoria; 2011.
  • 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. Nursing Outlook. 2017 SepOct;65(5):515-529.
  • Parker D, Lewis J, Gourlay K. Palliative Care and Dementia. Dementia Australia; 2018.
  • van der Linde RM, Dening T, Stephan BC, Prina AM, Evans E, Brayne C. Longitudinal course of behavioural and psychological symptoms of dementia: systematic review. British Journal of Psychiatry. 2016 Nov;209(5):366-377.

Advanced Dementia - Behavioural Changes

  • Alzheimer's Society. Preventing and managing aggressive behaviour in people with dementia. London: Alzheimer's Society 2021 [updated 13 August 2021]. 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. 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

  • Alexopoulos GS, Abrams RC, Young RC, Shamoian CA. Cornell Scale for Depression in Dementia. Biological psychiatry. 1988;23(3):271-84.
  • Australian Government. Mental health. Canberra, Australia: myagedcare; 2015 [updated 30 June 2015].
  • Beyond Blue. Anxiety and depression in older people. Melbourne, Australia; 2018.
  • CareSearch. Existential Distress. Adelaide, Australia; 2017 [updated 18 January 2017].
  • 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. International psychogeriatrics. 2018;30(7):967-79.
  • Grossman CH, Brooker J, Michael N, Kissane D. Death anxiety interventions in patients with advanced cancer: A systematic review. Palliative medicine. 2018;32(1):172-84.
  • Larsson H, Rämgård M, Bolmsjö I. Older persons' existential loneliness, as interpreted by their significant others - an interview study. BMC geriatrics. 2017;17(1):138.
  • Lenze EJ, Mulsant BH, Shear MK, Alexopoulos GS, Frank E, Reynolds CF 3rd. Comorbidity of depression and anxiety disorders in later life. Depression and anxiety. 2001;14(2):86-93.
  • Paratz ED, Katz B. Ageing Holocaust survivors in Australia. The medical journal of Australia. 2011;194(4):194-7.
  • Parpa E, Tsilika E, Gennimata V, Mystakidou K. Elderly cancer patients' psychopathology: a systematic review: aging and mental health. Archives of gerontology and geriatrics. 2015;60(1):9-15.
  • Starkstein SE, Jorge R, Petracca G, Robinson RG. The construct of generalized anxiety disorder in Alzheimer disease. The American journal of geriatric psychiatry: official journal of the American Association for Geriatric Psychiatry. 2007;15(1):42-9.
  • Watson B, Tatangelo G, McCabe M. Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review. The Gerontologist. 2018.

Cachexia, Sarcopenia and Anorexia

  • Ali S, Garcia JM. Sarcopenia, cachexia and aging: diagnosis, mechanisms and therapeutic options - a minireview. Gerontology. 2014;60(4):294-305.
  • Balstad TR, Solheim TS, Strasser F, Kaasa S, Bye A. Dietary treatment of weight loss in patients with advanced cancer and cachexia: a systematic literature review. Critical reviews in oncology/hematology. 2014;91(2):210-21.
  • BC Cancer Agency. Symptom Management Guidelines: Anorexia and Cachexia. Vancouver, Canada; 2014.
  • Blum D, Omlin A, Baracos VE, Solheim TS, Tan BH, Stone P, et al. Cancer cachexia: a systematic literature review of items and domains associated with involuntary weight loss in cancer. Critical reviews in oncology/hematology. 2011;80(1):114-44.
  • CareSearch. Cachexia Anorexia Syndrome. Adelaide, Australia; 2017 [updated 17 January 2017].
  • Eduardo B, Dev R. Palliative care: Assessment and management of anorexia and cachexia. UpToDate. Waltham, MA, USA: UpToDate 2018 [Accessed 06/02/2019].
  • Maddocks M, Hopkinson J, Conibear J, Reeves A, Shaw C, Fearon KCH. Practical multimodal care for cancer cachexia. Current opinion in supportive and palliative care. 2016;10(4):298-305.

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. Adelaide: 2021. Available from: https://www.caresearch.com.au/tabid/6221/Default.aspx
  • 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 (NHMRC). Talking with your patients about complementary medicine  – a resource for clinicians. Canberra: National Health and Medical Research Council (NHMRC); 2014.
  • palliAGED. Complementary Medicine (CM). Adelaide: 2021 [updated 12 July 2021]. Available from: https://www.palliaged.com.au/tabid/4756/Default.aspx
  • 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. 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

  • Clark K, Currow DC. Constipation in palliative care: what do we use as definitions and outcome measures? Journal of pain and symptom management. 2013;45(4):753-62.
  • Clark K, Smith JM, Currow DC. The prevalence of bowel problems reported in a palliative care population. Journal of pain and symptom management. 2012;43(6):993-1000.
  • Continence Foundation of Australia. Bristol Stool Chart. Melbourne, Australia; 2019.
  • 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. Palliative medicine. 2018;32(5):930-8.
  • NHS Herefordshire. STOPP START Toolkit Supporting Medication Review. Hereford, England; 2016.
  • Schuster BG, Kosar L, Kamrul R. Constipation in older adults: stepwise approach to keep things moving. Canadian Family Physician [Le Medecin de famille canadien]. 2015;61(2):152-8.

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. Clinical interventions in 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. Psycho-oncology. 2018;27(11):2531-45.
  • Grossman CH, Brooker J, Michael N, Kissane D. Death anxiety interventions in patients with advanced cancer: A systematic review. Palliative medicine. 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. Journal of pain and symptom management. 2015;49(1):126-34.
  • palliAGED. Spiritual Care (Evidence Centre). Adelaide, Australia; 2017 [updated 11 October 2017].
  • palliAGED. Spiritual Care (Practice Centre). Adelaide, Australia; 2017 [updated 17 October 2017].
  • Therrien Z, Hunsley J. Assessment of anxiety in older adults: a systematic review of commonly used measures. Aging & mental health. 2012;16(1):1-16.

Dysphagia

  • Bailey AF, Harman SM. Palliative care: The last hours and days of life. UpToDate. Waltham, MA, USA: [Accessed 12/02/2019]; 2018.
  • Dwivedi RC, St Rose S, Chisholm EJ, Georgalas C, Bisase B, Amen F, et al. Evaluation of swallowing by Sydney Swallow Questionnaire (SSQ) in oral and oropharyngeal cancer patients treated with primary surgery. Dysphagia. 2012;27(4):491-7.
  • Dwivedi RC, St Rose S, Roe JW, Khan AS, Pepper C, Nutting CM, et al. Validation of the Sydney Swallow Questionnaire (SSQ) in a cohort of head and neck cancer patients. Oral Oncology. 2010;46(4):e10-4.
  • Goldsmith T, Cohen AK. Swallowing disorders and aspiration in palliative care: Assessment and strategies for management. UpToDate. Waltham, MA, USA: [Accessed 07/02/2019]; 2018.
  • Goldsmith T, Cohen AK. Swallowing disorders and aspiration in palliative care: Definition, consequences, pathophysiology, and etiology. UpToDate. Waltham, MA, USA: UpToDate [Accessed 07/02/2019]; 2018.
  • 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. International journal of radiation oncology, biology, physics. 2018;101(2):421-44.
  • HealthDirect. Dysphagia (difficulty swallowing). Canberra, Australia; 2018 [updated February 2018].
  • Sura L, Madhavan A, Carnaby G, Crary MA. Dysphagia in the elderly: management and nutritional considerations. Clinical interventions in aging. 2012;7:287-98.

Dyspnoea

  • Bausewein C, Simon ST. Shortness of Breath and Cough in Patients in Palliative Care. Dtsch Arztebl International. 2013;110(33-34):563-72.
  • Campbell ML, Kiernan JM, Strandmark J, Yarandi HN. Trajectory of Dyspnea and Respiratory Distress among Patients in the Last Month of Life. Journal of palliative medicine. 2018;21(2):194-9.
  • Campbell ML, Templin T, Walch J. A Respiratory Distress Observation Scale for patients unable to self-report dyspnea. Journal of palliative medicine. 2010;13(3):285-90.
  • CareSearch. Dyspnoea. Adelaide, Australia; 2017 [updated 17 January 2017].
  • Dy SM, Kiley KB, Ast K, Lupu D, Norton SA, McMillan SC, et al. Measuring What Matters: Top-Ranked Quality Indicators for Hospice and Palliative Care From the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association. Journal of pain and symptom management. 2015;49(4):773-81.
  • Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respiratory Medicine. 2014;2(12):979-87.
  • Kamal AH, Gradison M, Maguire JM, Taylor D, Abernethy AP. Quality Measures for Palliative Care in Patients With Cancer: A Systematic Review. Journal of Oncology Practice. 2014;10(4):281-7.
  • LeBlanc TW, Abernethy AP. Building the palliative care evidence base: Lessons from a randomized controlled trial of oxygen vs room air for refractory dyspnea. Journal of the National Comprehensive Cancer Network: JNCCN. 2014;12(7):989-92.
  • 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. Journal of pain and symptom management. 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 medical journal. 2019;10(1).
  • Seow H, Bainbridge D. Measuring the Quality of Palliative Care at End of Life: An Overview of Data Sources. Healthy Aging & Clinical Care in the Elderly 2016:8 9–15.
  • Wysham NG, Miriovsky BJ, Currow DC, Herndon JE, Samsa GP, Wilcock A, et al. Practical Dyspnea Assessment: Relationship Between the 0–10 Numerical Rating Scale and the Four-Level Categorical Verbal Descriptor Scale of Dyspnea Intensity. Journal of pain and symptom management. 2015;50(4):480-7.

Eye Care

  • Bast RC. Holland-Frei Cancer Medicine. 9th ed. Chichester, West Sussex: Wiley Blackwell; 2017.
  • Berman A, Snyder S, Frandsen G. Kozier & Erb's Fundamentals of Nursing: concepts, process, and practice. 10th ed. Boston: Pearson; 2016.
  • Canadian Cancer Society. Vision changes [Internet]. Toronto, Canada: Canadian Cancer Society; 2019 [cited 2019 Aug 9]. Available from: https://www.cancer.ca/en/cancer-information/diagnosis-andtreatment/managing-side-effects/vision-changes/?region=on
  • Cummins R, Heraghty J. Vision and eye healthcare study in residential aged care facilities. Sydney, Australia: Macular Disease Foundation Australia; 2018.
  • Green C, Goodfellow J, Kubie J. Eye care in the elderly. Australian Family Physician. 2014 Jul;43:447-50.
  • Harman SM, Bailey FA. Palliative care: The last hours and days of life [Internet]. Wolters Kluwer Health; 2019 [updated 2019 June 6; cited 2019 Aug 9]. Available from: https://www.uptodate.com/contents/palliative-carethe-last-hours-and-days-of-life
  • Hui D, Dos Santos R, Chisholm G, Bansal S, Souza Crovador C, Bruera E. Bedside clinical signs associated with impending death in patients with advanced cancer: preliminary findings of a prospective, longitudinal cohort study. Cancer. 2015 Mar 15;121(6):960-7.
  • Johnson K, Rolls K. Eye Care for Critically Ill Adults. Sydney: NSW Agency for Clinical Innovation (ACI) NSW Government; 2014 Contract No.: SHPN (ACI) 140005.
  • Lamoureux EL, Fenwick E, Moore K, Klaic M, Borschmann K, Hill K. Impact of the severity of distance and near-vision impairment on depression and vision-specific quality of life in older people living in residential care. Investigative Ophthalmology & Visual Science. 2009 Sep;50(9):4103-9.
  • Mokhles P, Schouten JS, Beckers HJ, Azuara-Blanco A, Tuulonen A, Webers CA. A Systematic Review of End-of-Life Visual Impairment in Open-Angle Glaucoma: An Epidemiological Autopsy. Journal of Glaucoma. 2016 Jul;25(7):623-8.
  • The Royal Children's Hospital Melbourne. Terminal Care [Internet]. Melbourne: The Royal Children's Hospital Melbourne; 2019 [cited 2019 Jul 29]. Available from: https://www.rch.org.au/rch_palliative/for_health_professionals/Terminal_Care/

Faecal Incontinence

  • Continence Foundation of Australia. Bristol Stool Chart. Melbourne, Australia; 2019.
  • Farrington N, Fader M, Richardson A. Managing urinary incontinence at the end of life: an examination of the evidence that informs practice. International journal of palliative nursing. 2013;19(9):449-56.
  • Guinane J, Crone R. Management of faecal incontinence. Australian Journal for General Practitioners. 2018;47:40-3. O’Grady M. Continence Care and Management in the Aged Care Setting. Sydney, Australia; 2017.
  • O'Connell B, Ostaszkiewicz J, Sukkar K, Gilbee A. Continence tools for residential aged care : an education guide. Melbourne, Australia: Deakin University; 2009.
  • Samuelsson E, Odeberg J, Stenzelius K, Molander U, Hammarstrom M, Franzen K, et al. Effect of pharmacological treatment for urinary incontinence in the elderly and frail elderly: A systematic review. Geriatrics & gerontology international. 2015;15(5):521-34.
  • White-Chu EF, Flock P, Struck B, Aronson L. Pressure ulcers in long-term care. Clinics in geriatric medicine. 2011;27(2):241-58

Frailty

  • Abellan van Kan G, Rolland Y, Houles M, Gillette-Guyonnet S, Soto M, Vellas B. The assessment of frailty in older adults. Clinics in geriatric medicine. 2010;26(2):275-86.
  • Bergman H, Ferrucci L, Guralnik J, Hogan DB, Hummel S, Karunananthan S, et al. Frailty: an emerging research and clinical paradigm--issues and controversies. The journals of gerontology Series A, Biological sciences and medical sciences. 2007;62(7):731-7.
  • Bostanci A, Hudson P, Philip J. Clinical tools to assist with specialist palliative care provision. Report for Department of Health (Victoria), Melbourne, Australia: Centre for Palliative Care and The University of Melbourne, Australia; 2012.
  • Covinsky KE, Eng C, Lui LY, Sands LP, Yaffe K. The last 2 years of life: functional trajectories of frail older people. Journal of the American Geriatrics Society. 2003;51(4):492-8.
  • Ensrud KE, Ewing SK, Taylor BC, Fink HA, Stone KL, Cauley JA, et al. Frailty and risk of falls, fracture, and mortality in older women: the study of osteoporotic fractures. The journals of gerontology Series A, Biological sciences and medical sciences. 2007;62(7):744-51.
  • Fried LP, Tangen CM, Walston J, Newman AB, Hirsch C, Gottdiener J, et al. Frailty in older adults: Evidence for a phenotype. J Gerontol a-Biol. 2001;56(3):M146-M56.
  • Lee L, Heckman G, Molnar FJ. Frailty: Identifying elderly patients at high risk of poor outcomes. Can Fam Physician. 2015;61(3):227-31. palliAGED. Comorbidity (Practice Centre). Adelaide, Australia; 2017.
  • Schmader KE, Baron R, Haanpaa ML, Mayer J, O'Connor AB, Rice AS, et al. Treatment considerations for elderly and frail patients with neuropathic pain. Mayo Clinic proceedings. 2010;85(Suppl 3):S26-32.
  • Tanneguy Pialoux, Jean Goyard, Hermet R. When frailty should mean palliative care. Journal of Nursing Education and Practice. 2013;3(7):75-83.
  • Taylor BC, Fink HA, Tracy JK, Cauley JA, Stone KL, Ensrud KE, et al. Frailty and Risk of Falls, Fracture, and Mortality in Older Women: The Study of Osteoporotic Fractures. The Journals of Gerontology: Series A. 2007;62(7):744-51.
  • 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. Australasian Journal on Ageing. 2018;37(2):120-6.

Grief and Loss among Older People, Families and Residents

  • Aldrich CK. "Give Sorrow Words": Working With Bereavement in Senior Residential Settings. The Journal of nervous and mental disease. 2015;203(11):876-7.
  • 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.
  • Shear MK, Ghesquiere A, Glickman K. Bereavement and complicated grief. Current psychiatry reports. 2013;15(11):406.
  • Stroebe M, Stroebe W, Schut H, Boerner K. Grief is not a disease but bereavement merits medical awareness. The Lancet. 2017;389(10067):347-9.
  • 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. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong; 2017.
  • Victoria State Government. Dealing with grief and loss. Melbourne, Australia; 2015 [updated October 2015].
  • 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

  • Aldrich CK. "Give Sorrow Words": Working With Bereavement in Senior Residential Settings. The Journal of nervous and mental disease. 2015;203(11):876-7.
  • Anderson KA. Grief experiences of CNAs: relationships with burnout and turnover. Journal of gerontological nursing. 2008;34(1):42-9.
  • d'Epinay CJ, Cavalli S, Guillet LA. Bereavement in very old age: impact on health and relationships of the loss of a spouse, a child, a sibling, or a close friend. Omega (Westport). 2009;60(4):301-25.
  • Givens JL, Prigerson HG, Kiely DK, Shaffer ML, Mitchell SL. Grief among family members of nursing home residents with advanced dementia. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2011;19(6):543-50.
  • The Joanna Briggs Institute. Literature review on bereavement and bereavement care. Robert Gordon University, Aberdeen, UK; 2006.
  • 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. 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

  • Edwards HE, Nash RE, Najman JM, Yates PM, Fentiman BJ, Dewar A, et al. Determinants of nurses' intention to administer opioids for pain relief. Nursing & health sciences. 2001;3(3):149-59.
  • Grant M, Ugalde A, Vafiadis P, Philip J. Exploring the myths of morphine in cancer: views of the general practice population. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2015;23(2):483-9.
  • Therapeutic Guidelines Limited. Terminal care: care in the last days of life [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Using opioids in palliative care [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Acute pain in older people [amended March 2018]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Opioids used in palliative care [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Using different routes for administration of opioids for palliative care patients [revised July 2016] Melbourne, Australia.
  • palliAGED App, Palliative and Supportive Services Flinders University. Prescribing Guidance. 2018.
  • palliAGED App, Palliative and Supportive Services Flinders University. Dying in the community. 2018.
  • Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How family caregivers of cancer patients manage symptoms at home: A systematic review. International Journal of Nursing Studies. 2018;85:68-79

Nutrition and Hydration

  • American Nurses Association (ANA). Nutrition and Hydration at the End of Life - Position Statement. Silver Spring, MD, USA; 2017.
  • Cheshire and Merseyside Palliative and End of Life Care Network Audit Group. Standards and Guidelines for Nutritional Care in Palliative Care. 2014.
  • Lee JL, Leong LP, Lim SL. Nutrition intervention approaches to reduce malnutrition in oncology patients: a systematic review. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer. 2016;24(1):469-80.
  • O’Hara P. The management of nutrition for palliative care patients. Links to Health and Social Care. 2017;2(1):21-38.
  • palliAGED. Nutrition (Practice Centre). Adelaide, Australia; 2017 [updated 22 May 2017].
  • palliAGED. Nutrition (Evidence Centre). Adelaide, Australia; 2017 [updated 01 May 2017].
  • Rapp L, Sourdet S, Vellas B, Lacoste-Ferre MH. Oral Health and the Frail Elderly. The Journal of frailty & aging. 2017;6(3):154-60.
  • Simpelaere IS, Van Nuffelen G, Vanderwegen J, Wouters K, De Bodt M. Oral health screening: feasibility and reliability of the oral health assessment tool as used by speech pathologists. International dental journal. 2016;66(3):178-89.
  • Watson M, Rodgers A. Nutrition and palliative care. InnovAiT. 2015;8(6):354-9.

Opioid Analgesics

  • Grant M, Ugalde A, Vafiadis P, Philip J. Exploring the myths of morphine in cancer: views of the general practice population. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer. 2015;23(2):483-9.
  • palliAGEDgp App, Palliative and Supportive Services Flinders University. Prescribing Guidance. 2018.
  • palliAGEDgp App, Palliative and Supportive Services Flinders University. Dying in the community. 2018.
  • Savvas S, Gibson S. Pain management in residential aged care facilities. Australian Family Physician. 2015;44:198-203.
  • Therapeutic Guidelines Limited. Terminal care: care in the last days of life [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Using opioids in palliative care [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Acute pain in older people [amended March 2018]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Opioids used in palliative care [revised July 2016]. Melbourne, Australia.
  • Therapeutic Guidelines Limited. Using different routes for administration of opioids for palliative care patients [revised July 2016]. Melbourne, Australia.
  • Thompson AJ, Veal FC, Peterson GM, Bereznicki LRE. Use of Opioid Analgesics in Older Australians. Pain Medicine. 2015;16(8):1519-27.
  • Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How family caregivers of cancer patients manage symptoms at home: A systematic review. International Journal of Nursing Studies. 2018;85:68-79.

Oral Care

  • AIHW: Chrisopoulos S, Harford JE, Ellershaw A. 2016 Oral health and dental care in Australia: key facts and figures 2015. Cat. no. DEN 229.Canberra: AIHW.
  • Australian Government. Older Australia at a glance. Canberra, Australia: Australian Institute of Health and Welfare (AIHW); 2018.
  • Britton KF, Durey A, O'Grady MJ, Slack-Smith LM. Does residential aged care need dental professionals? A qualitative study on dental professionals' perceptions in Australia. Gerodontology. 2016;33(4):554-61.
  • Chalmers JM, King PL, Spencer AJ, Wright FA, Carter KD. The oral health assessment tool--validity and reliability. Australian dental journal. 2005;50(3):191-9.
  • Cohen LW, Zimmerman S, Sloane PD, Barrick AL. Changing the Culture of Mouth Care: Mouth Care Without a Battle. The Gerontologist. 2014;54(Suppl 1):S25-S34.
  • Fitzgerald R, Gallagher J. Oral health in end-of-life patients: A rapid review. Special Care in Dentistry. 2018;38(5):291-8.
  • Government of South Australia. Better Oral Health in Residential Care Staff Portfolio Education and Training Program. Adelaide, Australia: SA Dental Service; 2009.
  • Hearn L, Slack-Smith L. Engaging dental professionals in residential aged-care facilities: staff perspectives regarding access to oral care. Australian journal of primary health. 2016;22(5):445-51.
  • 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.
  • Lewis A, Wallace J, Deutsch A, King P. Improving the oral health of frail and functionally dependent elderly. Australian dental journal. 2015;60 Suppl 1:95-105.
  • McGuire DB, Fulton JS, Park J, Brown CG, Correa ME, Eilers J, et al. Systematic review of basic oral care for the management of oral mucositis in cancer patients. Supportive care in cancer: official journal of the Multinational Association of Supportive Care in Cancer. 2013;21(11):3165-77.
  • National Institute for Health and Care Excellence (NICE). Oral health promotion in care homes and hospitals; 2016.
  • Parker D, Lewis J, Gourlay K. Palliative Care and Dementia. Dementia Australia; 2018.
  • Rapp L, Sourdet S, Vellas B, Lacoste-Ferre MH. Oral Health and the Frail Elderly. The Journal of frailty & aging. 2017;6(3):154-60.
  • Simpelaere IS, Van Nuffelen G, Vanderwegen J, Wouters K, De Bodt M. Oral health screening: feasibility and reliability of the oral health assessment tool as used by speech pathologists. International dental journal. 2016;66(3):178-89.
  • Wallace JP, Mohammadi J, Wallace LG, Taylor JA. Senior Smiles: preliminary results for a new model of oral health care utilizing the dental hygienist in residential aged care facilities. International journal of dental hygiene. 2016;14(4):284-8.
  • 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.
  • Yi Mohammadi JJ, Franks K, Hines S. Effectiveness of professional oral health care intervention on the oral health of residents with dementia in residential aged care facilities: a systematic review protocol. JBI database of systematic reviews and implementation reports. 2015;13(10):110-22.

Pain Management

  • Therapeutic Guidelines Limited. Assessing pain in palliative care [revised July 2016]. Melbourne, Australia.
  • Atkinson TJ, Fudin J, Pandula A, Mirza M. Medication Pain Management in the Elderly: Unique and Underutilized Analgesic Treatment Options. Clinical Therapeutics. 2013;35(11):1669-89.
  • Bostanci A, Hudson P, Philip J. Clinical tools to assist with specialist palliative care provision. Report for Department of Health (Victoria). 2012 Centre for Palliative Care c/o St Vincent’s and The University of Melbourne, Australia.
  • Curtin University and Australian Pain Society. The PMG Kit for Aged Care. Canberra, Australia; 2007.
  • Dalacorte RR, Rigo JC, Dalacorte A. Pain management in the elderly at the end of life. North American journal of medical sciences. 2011;3(8):348-54.
  • Dunning T. Assessing pain in older people in residential aged care facilities. Pain Management Today [accessed online 12/02/2019]. 2016;3(1):37-40.
  • O'Neill LB, Morrison S. Palliative care: Issues specific to geriatric patients. UpToDate. Waltham, MA, USA. [Accessed 12/02/2019]; 2018.
  • Pain Australia. What is pain?
  • Pain Australia. Submission to the Review of National Aged Care Quality Regulatory Processes; 2017.
  • palliAGED. Symptoms and Medicines - Pain. Adelaide, Australia; 2019 [updated 21 February 2019].
  • Savvas S, Gibson S. Pain management in residential aged care facilities. Australian Family Physician. 2015;44:198-203.
  • Tan EC, Visvanathan R, Hilmer SN, Vitry A, Emery T, Robson L, et al. Analgesic use and pain in residents with and without dementia in aged care facilities: A cross-sectional study. Australasian journal on ageing. 2016;35(3):180-7.
  • Therapeutic Guidelines Limited. Using opioids in palliative care [revised July 2016]. Melbourne, Australia.
  • Thompson AJ, Peterson GM, Bereznicki LR, Veal FC. Pharmacological management of pain in Australian Aged Care Facilities. Age and Ageing. 2014;43(6):851-6.
  • Thompson AJ, Veal FC, Peterson GM, Bereznicki LRE. Use of Opioid Analgesics in Older Australians. Pain Medicine. 2015;16(8):1519-27.

People with Specific Needs

  • Aged Care Sector Committee. Aged Care Roadmap. Canberra, Australia; 2015.
  • Aged Care Sector Committee Diversity Sub-group. Aged Care Diversity Framework. Canberra, Australia; 2017.
  • CareSearch. Cultural Considerations. Adelaide, Australia; 2018 [updated 29 September 2018].
  • COTA Australia. Culturally Inclusive Aged Care. Canberra, Australia; 2019.
  • Fraser J. Little Book of Cultural Tips 3rd Edition. Brisbane, Australia: Diversicare; 2015.
  • Queensland University of Technology (QUT). Culture-centred care of people with life-limiting conditions. Palliative Care Curriculum for Undergraduates (PCC4U); 2018

Psychosocial Assessment and Support

  • Bern-Klug M. Psychosocial concerns in the context of geriatric palliative care in nursing homes: enlisting the skills of social workers. Top Geriatr Rehabil. 2011;27(1).
  • Butow P, Price MA, Shaw JM, Turner J, Clayton JM, Grimison P, et al. Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines. Psychooncology. 2015;24(9):987-1001.
  • 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.
  • Carolan CM, Smith A, Forbat L. Conceptualising psychological distress in families in palliative care: findings from a systematic review. Palliat Med. 2015;29(7):605-32.
  • 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.
  • 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. International psychogeriatrics. 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.
  • healthdirect. Older people and mental health. Canberra;2020 [updated 2020 Feb]. Available from: https://www.healthdirect.gov.au/older-people-and-mental-health
  • Johnson A, Chang E, editors. Caring for older people in Australia: principles for nursing practice. Milton: John Wiley and Sons Australia Ltd; 2014.
  • Kissane DW, Doolittle M. Depression, demoralization, and suicidality. In: Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC, editors. Oxford textbook of palliative medicine (5 ed). Oxford: Oxford University Press; 2015.
  • Lethborg C, Kissane D. The family perspective. In: Cherny N, Fallon M, Kaasa S, Portenoy R, Currow D, editors. Oxford Textbook of Palliative Medicine. 5 ed. Oxford: Oxford University Press; 2015.
  • Lloyd-Williams M, editor. Psychosocial issues in palliative care: a community based approach for life. 3 ed. New York: Oxford University Press; 2018.
  • 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.
  • Psycho-oncology Co-operative Research Group (PoCoG). 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.
  • Watson M, Ward S, Vallath N, Wells J, Campbell R. Oxford handbook of palliative care. Oxford: Oxford University Press; 2019.
  • Wein S, Amit L. Adjustment disorders and anxiety. In: Cherny N, Fallon M, Kaasa S, Portenoy R, Currow D, editors. Oxford textbook of palliative medicine. 5 ed. Oxford: Oxford University Press; 2015.
  • World Health Organization (WHO). Palliative care. Geneva: WHO; 2022 Available from: https://www.who.int/health-topics/palliative-care

Recognising Deterioration

  • Government of Western Australia. WA Cancer and Palliative Care Network. Evidence based clinical guidelines for adults in the terminal phase. Second Edition. Perth, Australia: Department of Health; 2011.
  • palliAGED. Recognising changes; 2017 [updated September 2018]. Palliative Care Network of Wisconsin. Fast Facts and Concepts #1 Diagnosis and Treatment of Terminal Delirium, 3rd ed. Appleton, WI, USA [updated 2014].
  • Palliative Care Network of Wisconsin. Fast Facts and Concepts #3 Syndrome of Imminent Death, 2nd ed. Appleton, WI, USA [updated 2014].
  • Queensland Government. Residential aged care end of life care pathway. Brisbane, Australia; 2016 [updated 11 April 2016].
  • Reymond L, Israel FJ, Charles MA. A residential aged care end-of-life care pathway (RAC EoLCP) for Australian aged care facilities. Australian health review: a publication of the Australian Hospital Association. 2011;35(3):350-6.
  • The Gold Standards Framework (UK). Prognostic Indicator Guide (PIG) 4th Edition. London, UK; 2011.

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 Palliative Care. 2016 Aug 9;15:74.
  • Bennett M, Lucas V, Brennan M, Hughes A, O'Donnell V, Wee B. Using anti-muscarinic drugs in the management of death rattle: evidence-based guidelines for palliative care. Palliative Medicine. 2002 Sep;16(5):369-74.
  • Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: Oxford University Press; 2015.
  • Fielding F, Long CO. The death rattle dilemma. Journal of Hospice & Palliative Nursing. 2014 Dec;16(8):466- 71.
  • 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. Journal of Pain and Symptom Management. 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. Journal of Advanced Nursing. 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. Journal of Advanced Nursing. 2018 Jul;74(7):1639-48.
  • Twycross RG, Lichter, I. The terminal phase. In: Doyle D, Hanke G, MacDonald N, editors. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford: Oxford University Press; 1999.
  • Wee B, Coleman P, Hillier R, Holgate S. Death rattle: its impact on staff and volunteers in palliative care. Palliative Medicine. 2008 Mar;22(2):173-6.
  • Wee BL, Coleman PG, Hillier R, Holgate SH. The sound of death rattle I: are relatives distressed by hearing this sound? Palliative Medicine. 2006 Apr;20(3):171-5.
  • Wildiers H, Dhaenekint C, Demeulenaere P, Clement PM, Desmet M, Van Nuffelen R, et al. Atropine, hyoscine butylbromide, or scopolamine are equally effective for the treatment of death rattle in terminal care. Journal of Pain and Symptom Management. 2009 Jul;38(1):124-33.

Signs of Imminent Death

  • Cherny N, Fallon M, Kaasa S, Portenoy RK, Currow DC. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: Oxford University Press; 2015.
  • Government of Western Australia, Department of Health. Understanding the dying process [Internet]. Perth: Government of Western Australia, Department of Health; 2019 [cited 2019 Aug 9]. Available from: https://www.healthywa.wa.gov.au/Articles/U_Z/Understanding-the-dying-process
  • Guidelines and Audit Implementation Network (GAIN). Guidelines for Palliative and End of Life Care in Nursing Homes and Residential Care Homes. Belfast, Ireland: GAIN; 2013 Dec.
  • palliAGED. palliAGEDnurse App: Recognising Dying [Internet]. Adelaide, Australia: palliAGED; 2017 [updated 2017 Apr 17; cited 2019 Jul 30]. Available from: https://apps.caresearch.com.au/palliAGEDnurse/Recognising-Dying
  • palliAGED. Terminal Care (Evidence Centre - Summary) [Internet]. Adelaide, Australia. 2019 [updated 2018 Jul 17; cited 2019 Aug 13]. Available from: https://www.palliaged.com.au/tabid/4462/Default.aspx
  • palliAGED. Terminal Care (Evidence Centre - Synthesis) [Internet]. Adelaide, Australia. 2019 [updated 2018 Jul 17; cited 2019 Aug 13]. Available from: https://www.palliaged.com.au/tabid/4462/Default.aspx
  • Palliative care Expert Group. Therapeutic guidelines: palliative care. Version 4. Melbourne: Therapeutic Guidelines Limited; 2016.
  • Queensland Government, Metro South Health. Residential aged care end of life care pathway [Internet]. Brisbane: Queensland Government, Metro South Health; 2019 [updated 2019 Jul 8; cited 2019 Aug 13]. 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. Journal of the American Medical Directors Association. 2016 Sep 1;17(9):821-7.

Skin and Wound care

  • Australian Commission on Safety and Quality in Health Care. Safety and Quality (ASQHC). Safety and Quality Improvement Guide Standard 8: Preventing and Managing Pressure Injuries Sydney, Autralia: ACSQHC; 2012.
  • CareSearch. Wound Care. Adelaide, Australia; 2017 [updated 18 September 2017].
  • Edwards H, Courtney M, Chang A, Finlayson K, Gibb M, Parker C. Promoting Healthy Skin: A Self-Directed Learning Resource for Residential Aged Care Workers. In: (QUT) QUoT, editor. 2010.
  • Healthcare Improvement Scotland. Braden Risk Assessment tool; 2009 [updated 17 March 2009].
  • Kottner J, Lichterfeld A, Blume-Peytavi U. Maintaining skin integrity in the aged: a systematic review. British Journal of Dermatology. 2013;169(3):528-42.
  • Krasner DL, Stewart TP. SCALE wounds: unavoidable pressure injury. Wounds 2015;27(4):92-4.
  • Kumar SS. Occupational Therapy Perspective in Wound Care Management in Geriatric Person. International Journal of Medical and Health Research 2010;1(5):40-2.
  • LeBlanc K, Baranoski S. International Skin Tear Advisory Panel: Putting it all together, a tool kit to aid in the prevention, assessment using a simplified classification system and treatment of skin tears [online]. World Council of Enterostomal Therapists Journal. 2014;34(1):12-27.
  • 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. Advances in skin & wound care. 2016;29(1):32-46.
  • LeBlanc K, Baranoski S, Christensen D, Langemo D, Sammon MA, Edwards K, et al. International Skin Tear Advisory Panel: a tool kit to aid in the prevention, assessment, and treatment of skin tears using a Simplified Classification System (c). Advances in Skin & Wound Care. 2013;26(10):459-76; quiz 77-8.
  • Queensland University of Technology (QUT). Skin Care. Brisbane, Australia; 2010.
  • Registered Nurses’ Association of Ontario. Risk Assessment & Prevention of Pressure Ulcers Guideline Supplement. Toronto, Canada; 2011.
  • Ripley KR, Collier M. Managing tissue viability issues in patients with cancer approaching the end of life. Nursing standard (Royal College of Nursing (Great Britain) : 1987). 2017;31(25):54-61.
  • Sibbald RG, Krasner DL, Lutz J. SCALE: Skin Changes at Life's End: Final Consensus Statement: October 1, 2009. Advances in Skin & Wound Care. 2010;23(5):225-36; quiz 37-8.
  • White-Chu EF, Reddy M. Pressure ulcer prevention in patients with advanced illness. Curr Opin Support Palliat Care. 2013;7(1):111-5.
  • Woo KY, Krasner DL, Kennedy B, Wardle D, Moir O. Palliative wound care management strategies for palliative patients and their circles of care. Advances in skin & wound care. 2015;28(3):130-40; quiz 40-2

Spiritual Care

  • Bostanci A, Hudson P, Philip J. Clinical tools to assist with specialist palliative care provision. Report for Department of Health (Victoria). Melbourne, Australia: Centre for Palliative Care c/o St Vincent’s and The University of Melbourne, Australia; 2012.
  • Meaningful Ageing Australia. ConnecTo Spiritual Screening Tool – Leader’s Guide Melbourne, Australia; 2018.
  • palliAGED. Spiritual Care (Evidence Centre). Adelaide, Australia; 2017 [updated 11 October 2017].
  • palliAGED. Spiritual Care (Practice Centre) Adelaide, Australia; 2017 [updated 17 October 2017].
  • Spencer-Adams S. Incorporating spirituality in end-of-life nursing care. BMJ End of Life Journal. 2011;1(3).


Last updated 27 April 2022