Core Modules

module 4 | Activity 3: Goals of care

End-of-life goal setting is a key aspect of palliative care. Goals of care are the clinical and personal goals that a person has for a period of time that are determined through a shared decision-making process. Discussions to establish goals of care ideally begin soon after the diagnosis of a life-limiting illness.[1] These conversations require good communication skills (See Module 2) and for health professionals to work with the person to understand the goals they have. Open conversations about goals of care can help to support an early and integrated approach to palliative care.

‘Our ultimate goal after all is not a good death, but a good life to the very end’. Dr Atul Gawande [2]

Before starting a conversation about goals of care, health professionals need to prepare themselves with accurate information about the person’s likely life expectance and the course of illness. This can require consultation with specialist providers to understand the person’s prognosis and possible illness pathway. It can also find be helpful to use tools such as the ePrognosis calculators to help in finding evidence-based information on prognosis. It is also important to ask the person ahead of time who they would like included in a conversation about their healthcare, to ensure that those people are able to be involved.[3-4]

In goals of care conversations, providing information using the Ask-Tell-Ask approach is helpful:[3-4]

  • Ask the person what type of information they would find helpful
  • Tell them about their test results, prognosis or other news
  • Ask them what they understand and how they feel about it.

The process of establishing goals of care involves:[3-10]

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 is your sense of how you are doing now?
  • What do you understand about what the future holds?
  • What are your worries for the future? What worries you the most?
  • What are your hopes and priorities?
  • What are you willing to sacrifice, and what are you NOT willing to sacrifice?

During this part of the conversation, you might get a sense that the person is not ready to talk about these matters. If the person is clinically stable, then the conversation can be delayed until they feel ready. If they are clinically deteriorating, then this needs to be addressed in a sensitive and empathetic way, such as:

  • I know that it is really hard to talk about the fact that you might be getting sicker from this illness. I wish it wasn’t something we needed to do, but I worry that if we don’t, we won’t be able to make good decisions together.
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?
Documentating
A 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:[5,6,8,9]

  • 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.

 

Resources

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. 2014. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med, 2014. 161(6): p. 408-18.
  2. Gawande, A., Being mortal: medicine and what matters in the end 2014, New York: Metropolitan Books, Henry Holt and Company.
  3. 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.
  4. Jackson V, Jacobsen J, Greer W et al (2013) The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide. Journal of Palliative Medicine 16(8):894-900.
  5. CareSearch. 2022. Communication is key to quality palliative care.
  6. Therapeutic Guidelines. 2023. Communicating with the patient in palliative care. Melbourne.
  7. Palliative Care Outcomes Collaboration. 2024. PCOC Assessment Tools.
  8. Advance Care Planning Australia. 2024. Health Professionals: roles and responsibilities.
  9. CareSearch. 2021. Advance Care Planning: Clinical Evidence Summary
  10. De Lima, L., et al. 2021. 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.