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Managing Crises

Key Messages

  • A number of crises can occur in end-of-life and palliative care some of which may be anticipated. [1,2]
  • A crisis or an emergency is a sudden deterioration in a person’s condition which requires an urgent response. [1-5]
  • The response to a crisis will depend on the person’s overall condition, their wishes or those of the substitute decision-maker and/or key family members. [1,4] 
  • An Advance Care Plan or Advance Care Directive can inform the response. [1,4,6]
  • Proactive and pre-emptive end-of-life care discussions can help plan care in line with a person’s wishes including what to do in an emergency. [1,4,7] They may also help in putting appropriate supports in place. [2,7-9]
  • Planning for predictable problems and timely, pre-emptive prescribing and access to medicines may allow prompt symptom relief and avoid distress or a crisis. [1,2,10]
  • There are numerous stressors or predictors of behavioural crisis in people with dementia. [5,11,12]

 

No Evidence Synthesis

due to the sparcity of the published evidence

Background

A palliative approach to care can improve the quality of life for people with a life-limiting illness and their families. [8,10,13] The majority of Australians would prefer to die at home. [14-16] To fulfil a person’s wish to be cared for and/or to die at home often requires extensive assistance from family, unpaid/paid carers and support services. [14] Well coordinated care is important for older adults at end-of-life particularly those with multiple chronic conditions. [13] Coordinated palliative care can reduce resource utilisation therefore reducing health costs and hospitalisations. [13] More can be read in Care Coordination.

Planning for predictable emergencies is possible and is essential for home palliative care. It involves sensitive preparation of the person and family carers and, at times, extra support services (e.g. community palliative care, personal alarm systems, out-of-hours telephone support or visits, plans for transfer from home to another site of care if needed, or mobilising other family members). [2,8,9] Evidence suggests that home palliative care services with out-of-hours support (telephone support or visits) greatly assist dying people to be cared for at home and decrease hospitalisations and presentations to emergency rooms. [8,9]

Evidence Summary

Proactive and pre-emptive end-of-life care discussions can help plan care in line with a person’s wishes including what to do in an emergency. [1,4] These discussions may be helpful in putting appropriate supports in place. [2,8,9] Timely access to medicines may allow prompt symptom relief and avoid distress or a crisis. Anticipatory prescribing in the dying/terminal phase reduces the risk of distress and crises. [1,2,10]

A number of crises can occur towards the end of life some of which may be unexpected and some of which may be anticipated. [1,2] A crisis or an emergency is a sudden deterioration in a person’s condition which requires an urgent response. [1-4] The response to a crisis will depend on the person’s overall condition and their wishes or those of the appointed substitute decision-maker(s). [1,4]

In an emergency, if the person is not able to express their wishes, documents such as an Advance Care Plan and Advance Care Directive (completed by the person), treatment plans, goals-of-care plans and resuscitation plans (completed by a doctor) will guide the choice of emergency treatment. [1,4,6] These documents should be readily available in case of an emergency. [4]

In an emergency, if the person is not able to express their wishes and there is no clear Advance Care Plan, emergency treatment will generally be initiated. This may include intensive care admission. [6]

The CareSearch page Emergencies has information about common palliative care emergencies.

Crises with dementia

Along the dementia trajectory, various stressors can cause a significant imbalance or disruption with the need for an immediate decision to resolve the situation, i.e. a crisis. [11] Counselling after diagnosis and regular health checks by the GP can help prevent or identify early any acute medical conditions or malnutrition which, in turn, can help mitigate stressors for the person with dementia. [5,11] Appropriate support and education can mitigate stressors for the carers. [5,11] Attention to the environmental, physical and psychological needs of persons with dementia can help prevent crises in residential aged care. [5,11]

Behavioural and psychological symptoms of dementia (BPSD) can also impact the person with dementia and/or their carers to such an extent that they reach a crisis point. [5,11] Behavioural crises often occur in community and care settings and are more common in the moderate to advanced stages of dementia. [5] Carers of a family member with dementia may live with a continual build-up of BPSD until a crisis. [12] This may be when their experiences first become evident to health professionals and may be a tipping point in the management of the person with dementia (e.g. hospital admission and/or placement in residential aged care facility) [5,12] Agitation and aggression are the most common expressions of behavioural crises with dementia. [5]

Numerous stressors/predictors of crisis have been identified and many factors will determine the solution. Therefore, it is very difficult to prevent or plan for all crises in dementia care. [5,7,11]

Quality Statement

There is very little evidence relating to palliative care crises. Two systematic reviews focussed on crises in dementia. [5,11] A literature review relating to 24/7 on-call support for adults was included. [9] National guidelines for emergency care [1] and regional [10] guidelines for anticipatory prescribing for  general adult population were included. No guidelines specific to older adults were found. One included systematic review focussing on home palliative care considered out-of-hours care. [8] Other literature was included to give context to this topic. [2-4,6,13-16]

The included studies are of acceptable quality.
 

Page updated 06 July 2021
 

  • References

  • About PubMed Search

  1. Therapeutic Guidelines Limited. Therapeutic Guidelines: Palliative Care. Version 4. Melbourne: Therapeutic Guidelines Ltd, 2016.
  2. CareSearch. Emergencies [Internet]. 2017 [updated 2017 Feb 21; cited 2018 Jan 16].
  3. National Institute for Health and Care Excellence (NICE). End of life care for adults (NICE Quality Standard QS13) [Internet]. 2017 [updated 2017 Mar; cited 2018 Jan 16].
  4. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement; essential elements for safe and high quality end-of-life care. Sydney: ACSQHC; 2015.
  5. Backhouse T, Camino J, Mioshi E. What Do We Know About Behavioral Crises in Dementia? A Systematic Review. J Alzheimers Dis. 2018;62(1):99-113. doi: 10.3233/JAD-170679.
  6. Australian and New Zealand Intensive Care Society (ANZICS). ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill. Melbourne; ANZICS: 2014.
  7. Jennings AA, Foley T, Walsh KA, Coffey A, Browne JP, Bradley CP. General practitioners' knowledge, attitudes, and experiences of managing behavioural and psychological symptoms of dementia: A mixed-methods systematic review. Int J Geriatr Psychiatry. 2018 Jun 13;33(9):1163–76. doi: 10.1002/gps.4918. Epub ahead of print.
  8. Sarmento VP, Gysels M, Higginson IJ, Gomes B. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care. 2017. Dec;7(4):0. doi: 10.1136/bmjspcare-2016-001141. Epub 2017 Feb 23.
  9. Slack C. Best Practice for After-Hours Hospice Symptom Management: A Literature Review. Home Healthc Now. 2015;33(9):482-6.
  10. Gippsland Region Palliative Care Consortium Clinical Practice Group. Anticipatory Prescribing Guidelines (519kb pdf). Warragul (Vic); Gippsland Region Palliative Care Consortium; 2016.
  11. MacNeil Vroomen J, Bosmans JE, van Hout HP, de Rooij SE. Reviewing the definition of crisis in dementia care. BMC Geriatr. 2013 Feb 1;13:10. doi: 10.1186/1471-2318-13-10.
  12. Braun A, Trivedi DP, Dickinson A, Hamilton L, Goodman C, Gage H, Ashaye K, Iliffe S, Manthorpe J. Managing behavioural and psychological symptoms in community dwelling older people with dementia: 2. A systematic review of qualitative studies. Dementia (London). 2019 Oct-Nov;18(7-8):2950-2970. doi: 10.1177/1471301218762856. Epub 2018 Mar 20.
  13. Unroe KT, Meier DE. Research priorities in geriatric palliative care: policy initiatives. J Palliat Med. 2013 Dec;16(12):1503-8. doi: 10.1089/jpm.2013.9464. Epub 2013 Oct 22.
  14. Herber OR, Johnston BM. The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. Health Soc Care Community. 2013 May;21(3):225-35. doi: 10.1111/j.1365-2524.2012.01092.x. Epub 2012 Sep 13.
  15. Broad JB, Gott M, Kim H, Boyd M, Chen H, Connolly MJ. Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. Int J Public Health. 2013 Apr;58(2):257-67. doi: 10.1007/s00038-012-0394-5. Epub 2012 Aug 15.
  16. Swerissen H, Duckett, S. Dying Well. Carlton (VIC): Grattan Institute; 2014.
Crisis care requires that patients and families have access to after-hours medical, nursing or pharmaceutical support in the home (COMPAC)
  • Mental health issue
  • Access to crisis care for families and carers (However, we have a respite topic so no need to search for this here)
  • Plans for what to do in a crisis (change in condition, death) for families and carers and aged care workforce (eg liaise with family) such as access to after-hours services
  • Putting appropriate supports in place (eg, community nurses, personal alarm systems, plans for transfer from home to another site of care, or mobilising other family members)
  • Emergency medications of orders
  • Ensure families are prepared

Definitions

Crisis Intervention

Crisis Intervention: Brief therapeutic approach which is ameliorative rather than curative of acute psychiatric emergencies. Used in contexts such as emergency rooms of psychiatric or general hospitals, or in the home or place of crisis occurrence, this treatment approach focuses on interpersonal and intrapsychic factors and environmental modification. (Source: MeSH thesaurus and APA Thesaurus of Psychological Index Terms, 7th ed)

Search notes

(Crisis Intervention[mh] OR Crisis care[tiab] OR crisis intervention*[tiab] OR crisis therap*[tiab] OR Crisis resolution[tiab] OR Crisis prevention[tiab] OR Crisis management[tiab] OR Critical incident*[tiab] OR Crisis hotline[tiab] OR after hour*[tiab] OR night patrol*[tiab] OR medical alert*[tiab] OR personal alarm*[tiab] OR 24/7[tiab])