Core Modules

module 4 | Activity 3: Goals of care

End-of-life goal setting is a key palliative care skill. Discussions to establish goals of care ideally begin soon after the diagnosis of a life-limiting illness.[1] This requires good communication skills (See Module 2) and for health professionals to work with the person to develop goals of care that target individual needs, values and preferences.

The process of establishing goals of care involves:[2-12]

Listening and enquiring
Determine the person’s level of understanding and reactions to their situation and prognosis. Asking open questions can be helpful to understand personal goals and preferences:

  • What is your understanding of where you are with your health
  • What are your worries for the future
  • What are your hopes and priorities
  • What are you willing to sacrifice, and what are you NOT willing to sacrifice?
Checking and clarifying
Goals are likely to change as the person’s illness progresses. It is important to state your understanding of their goals and compare this with how  they see their situation:

  • What I am hearing is that you feel … and would prefer … Is that what you meant
  • Thanks for clarifying that. Is there anything you think I have missed?
Documentation
A palliative care plan involves documenting and sharing an agreed plan of care for a person with a life-limiting illness. It is not a specific tool although many organisations have specific care plan templates which are used for this purpose. A clearly documented palliative care plan:

  • Ensures the relevance, continuity and success of a coordinated multidisciplinary approach to care across all care settings
  • Articulates how the team will work together to provide the best care
  • Helps the team to anticipate and accommodate evolving needs and preferences of the person with a life-limiting illness.

This documentation should be shared with the person, their family and all relevant healthcare professionals.

A comprehensive palliative care plan includes:[4, 11-15]

  • Details of who participated in planning (ensure that the person with the life-limiting illness and/or their decision-maker were included)
  • Contact details for the key coordinator(s) of care
  • Clearly defined goals and responsibilities
  • Evidence of ongoing, holistic assessment
  • Consideration of all domains of care (physical, social, emotional, cultural and spiritual)
  • Plans for multidisciplinary involvement
  • Details on how the plan will be shared and re-evaluated
  • Links to relevant documentation (ie, advance care plan)
  • Planning for expected events and changes.

Dr Atul Gawande, an advisor to The Conversation Project has stated that, ‘Our ultimate goal after all is not a good death, but a good life to the very end’.[12]

The Dying to Talk Discussion Starters are a suite of tools developed by Palliative Care Australia to support these important conversations.

  1. How can you determine a person’s goals of care and care preferences?
  2. How would you as a healthcare professional respond to the following situations:
    • The person’s goals are not consistent with their prognosis
    • Their care goals conflict with the goals and wishes of their family?
  3. In what ways can culture and beliefs influence personal goals and preferences for care?
  1. Butler, M., et al., Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med, 2014. 161(6): p. 408-18.
  2. CareSearch. Symptom Management. Clinical Evidence 2018  [cited 2019 February 14]; Available from: https://www.caresearch.com.au/caresearch/tabid/1466/Default.aspx.
  3. CareSearch. Symptom Management at the End of Life. Clinical Evidence 2018  [cited 2019 February 02]; Available from: https://www.caresearch.com.au/caresearch/ClinicalPractice/Physical/EndofLifeCare/SymptomManagementattheEndofLife/tabid/741/Default.aspx.
  4. Therapeutic Guidelines Ltd, Principles of symptom management in palliative care. 2018: Melbourne.
  5. Wilkie, D.J. and M.O. Ezenwa, Pain and Symptom Management in Palliative Care and at End of Life. Nursing outlook, 2012. 60(6): p. 357-364.
  6. Palliative Care Outcomes Collaboration. PCOC Assessment Tools. 2019  [cited 2019 Febraury 2]; Available from: http://www.pcoc.org.au/.
  7. Palliative Care Outcomes Collaboration. PCOC Clinical Manual 2018  [cited 2019 31 January]; Available from: https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/@pcoc/documents/doc/uow129133.pdf.
  8. Advance Care Planning Australia. Advance Care Planning Australia. 2018  [cited 2018 March 20]; Available from: https://www.advancecareplanning.org.au/.
  9. CareSearch. Advance Care Planning. Clinical Evidence 2017  [cited 2019 Febraury 18]; Available from: https://www.caresearch.com.au/caresearch/tabid/450/Default.aspx.
  10. RACGP. Practice Guides and Tools – Advance Care Planning. 2018  [cited 2018 June 17]; Available from: https://www.racgp.org.au/guidelines/advancecareplans.
  11. Palliative Care Australia. National Standard Assessment Program. Collaborative Improvement Project: Assessment and Care Planning. 2012  Febraury 12, 2019]; Available from: http://nsap.klixhosting.com.au/wp-content/uploads/2014/11/Final-report-NSAP-CIP-FAweb_May-12.pdf.
  12. Gawande, A., Being mortal: medicine and what matters in the end 2014, New York: Metropolitan Books, Henry Holt and Company.
  13. De Lima, L., et al., International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices in Palliative Care. Journal of Pain & Palliative Care Pharmacotherapy, 2012. 26(2): p. 118-122.
  14. Therapeutic Guidelines Ltd, Advance Care Planning. 2018: Melbourne.
  15. Dunlay, S.M. and J.J. Strand, How to discuss goals of care with patients. Trends in cardiovascular medicine, 2016. 26(1): p. 36-43.