Goals of Care
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GO

Goals of Care

Key Messages

  • A care plan should integrate, where reasonable, the wishes of a person and their family, be responsive to the change in the person’s conditions, and include clear, respectful and empathetic communication. [1-6]
  • People, their family and substitute decision-makers need a clear understanding of the persons condition in order to have open, honest and realistic discussions about goals of care and planning end-of-life care. These discussions need to occur early, particularly in the case of people with dementia but are often begun late in the course of an illness. [7-11]
  • A regular review of goals of care is important and setting specific goals assists this process. [12]
  • For people with low English proficiency, discussions about goals of care and end-of-life planning, should, where practical, include a professional interpreter. [13]

Background

Goals of care are the aims for a person’s medical treatment, as agreed with their family, carers and healthcare team. Goals of care will change over time, particularly as the person enters the terminal phase. Medical goals of care may include attempted cure of a reversible condition, a trial of treatment to assess reversibility of a condition, treatment of deteriorating symptoms, or the primary aim of ensuring comfort for a dying person. A person’s goals of care may also include non-medical goals, for example, reaching a particular milestone or participating in a family event. [6]

Goal setting involves a process of negotiation between a person and health care professional or a multidisciplinary team about an agreed target which will be worked towards.

Evidence Summary

Very few systematic reviews and guidelines exist for goals of care in relation to palliative care for residents of aged care facilities (RACFs) or for older people receiving care in the community. [14]

Goal setting in palliative care is complex, challenging and should be multidisciplinary and flexible in nature. The process of setting and working towards specific goals can be an important part of adapting to a life-limiting illness. As illness progresses, the emphasis of goal setting can change from physical independence to leaving a legacy. [12] In the assessment of palliative care interventions of RACFs, there exists very little evidence as to the role and importance of goals of care. [14]

The literature indicates that discussions with people about goals of care and end-of-life planning do not increase levels of anxiety, depression or feelings of hopelessness for the person or their family, and they can minimise the hesitation, stress or guilt felt by surrogate decision-makers. These discussions should explore the person's expectations of treatment options, fears and concerns regarding their disease and their future, and should include physical and psychosocial (psychological, social, spiritual, existential, cultural) factors. [5] Timing of goals of care discussions is particularly important for people diagnosed with dementia. Early discussion enables the person to state their wishes for the later stages of their condition when they may no longer have the competency or capacity to speak for themselves. [15]

A care plan should integrate, where reasonable, the wishes of the person and their family, be responsive to the change in the person’s conditions, and include clear, respectful and empathetic communication, [1-5] medication review to discontinue unnecessary medication, [3,5] and anticipatory prescribing for people in the last days of life. [3,5] It is particularly important that the person and their family understand the burdens of treatment and the likely loss of quality time and the likely gain in quantity of time. [5] Care should be taken so that a person and their family understand the underlying disease status and prognosis, treatment options, likely outcomes and likely adverse effects so that goals are realistic and person-centred.

Decision aids, in particular electronic video education tools and patient-clinician communication are both important means to improve understanding and knowledge of treatment choices and assist in GoC decision-making and accurately reflecting a person’s preferences and values. [7,9,10] Decision aids should be used with caution for people with multimorbidity as single chronic disease is often the focus of development. [16]

For people with low English proficiency, discussions about goals of care and end-of-life planning, should, where practical, include a professional interpreter. [13]

Quality Statement

Overall, the evidence is scant with a mix of low, moderate and high-quality evidence.
 

Page updated 28 June 2021

 

  • References

  • About PubMed Search

  1. Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med. 2014 Jul;28(7):931-40. Epub 2014 Mar 31.
  2. Johnston B, Larkin P, Connolly M, Barry C, Narayanasamy M, Ostlund U, et al. Dignity-conserving care in palliative care settings: An integrative review. J Clin Nurs. 2015 Jul;24(13-14):1743-72. Epub 2015 Feb 23.
  3. McCusker M, Ceronsky L, Crone C, Epstein H, Greene B, Halvorson J, et al. Palliative care for adults: health care guideline. Bloomington (MN): Institute for Clinical Systems Improvement (ICSI); 2013 Nov.
  4. Ostlund U, Brown H, Johnston B. Dignity conserving care at end-of-life: a narrative review. Eur J Oncol Nurs. 2012 Sep;16(4):353-67. Epub 2011 Sep 13.
  5. Therapeutic Guidelines Limited. Therapeutic Guidelines: Palliative Care. Version 4. Melbourne: Therapeutic Guidelines Ltd, 2016.
  6. 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.
  7. Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decision making in serious illness: A systematic review. JAMA Intern Med. 2015 Jul;175(7):1213-21.
  8. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014 Dec;174(12):1994-2003.
  9. Oczkowski SJ, Chung HO, Hanvey L, Mbuagbaw L, You JJ. Communication tools for end-of-life decision-making in the intensive care unit: a systematic review and meta-analysis. Crit Care. 2016 Apr 9;20:97.
  10. Bennett F, O'Conner-Von S. Communication Interventions to Improve Goal-Concordant Care of Seriously Ill Patients: An Integrative Review. J Hosp Palliat Nurs. 2020 Feb;22(1):40-48. doi: 10.1097/NJH.0000000000000606.
  11. Cresp SJ, Lee SF, Moss C. Substitute decision makers' experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis. Dementia (London). 2020 Jul;19(5):1532-1559. doi: 10.1177/1471301218802127. Epub 2018 Sep 25.
  12. Boa S, Wyke S, Duncan E, Haraldsdottir E. Goal setting in palliative care: a structured literature review. BMJ Support Palliat Care. 2012 Mar;2(Suppl 1):A9-A10.
  13. Silva MD, Genoff M, Zaballa A, Jewell S, Stabler S, Gany FM, et al. Interpreting at the end of life: A systematic review of the impact of interpreters on the delivery of palliative care services to cancer patients with limited english proficiency. J Pain Symptom Manage. 2016;51(3):569-80. Epub 2015 Nov.
  14. Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database Syst Rev. 2011(3):CD007132.
  15. Senderovich H, Retnasothie S. A systematic review of the integration of palliative care in dementia management. Palliat Support Care. 2020 Aug;18(4):495-506. doi: 10.1017/S1478951519000968.
  16. Muth C, Blom JW, Smith SM, Johnell K, Gonzalez-Gonzalez AI, Nguyen TS, et al. Evidence supporting the best clinical management of patients with multimorbidity and polypharmacy: a systematic guideline review and expert consensus. J Intern Med. 2019 Mar;285(3):272-288. doi: 10.1111/joim.12842. Epub 2018 Dec 10. Erratum in: J Intern Med. 2019 Oct;286(4):487.
 

Definition

The aims for a patient’s medical treatment, as agreed between the patient, family, carers and healthcare team. Goals of care will change over time, particularly as the patient enters the terminal phase. Medical goals of care may include attempted cure of a reversible condition, a trial of treatment to assess reversibility of a condition, treatment of deteriorating symptoms, or the primary aim of ensuring comfort for a dying patient. The patient’s goals of care may also include nonmedical goals – for example, returning home or reaching a particular milestone, such as participating in a family event.

End of life essentials, CareSearch.

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(goals of care[tiab] OR care goal*[tiab] OR care plan[tiab] OR care plans[tiab] OR "Patient Care Planning"[Majr:NoExp]) AND