Who are substitute decision-makers and why are they important in the palliative care context?
A substitute decision-maker (SDM) is an individual who is legally able to make medical decisions on behalf of another person if they cannot make these decisions for themselves. [1] The terms 'surrogate' or 'proxy' can be used interchangeably when referring to SDMs. [1] It is important for SDMs to understand their role because the process of decision-making is continuous, rather than a once-off event. [2]
SDMs have an important role in healthcare decisions that may include decisions around whether to consent to, withhold or withdraw life-sustaining treatments on behalf of the older person. [1] Decisions can be influenced by understanding of the diagnosis and health status, religion/spirituality, ethical considerations and quality of life of the older person. [2]
With the new Aged Care Act that has come into effect, it is important to note that a registered supporter is not the same as an SDM.
Want to learn more?
The ELDAC End of Life Law Toolkit has a factsheet available on substitute decision-making.
palliAGED has also compiled resources and links for families.
What can we do?
Facilitating SDMs to be appointed
Care teams:
- Enable older people to engage in advance care planning discussions with aged care workers and relevant parties, such as SDMs, caregivers, and family members, according to their preferences. This may include completing or reviewing an advance care plan and appointing one or more SDMs (Aged Care Quality Standards, Action 5.7.2). Information such as these details available from Dementia Australia may assist in the planning process.
Organisations:
- Ensure processes are in place to review the older person’s status. Discuss with the older person and their family whether, and when, SDM(s) should be nominated / appointed (especially if they do not have one).
The evidence:
- Advance care planning is important in ensuring preferences for care are discussed and documented. As part of this process, a relevant SDM may be appointed. This is especially important when the older person develops cognitive impairment or has diminished decision-making capacity.
- The ability to be formally involved as an SDM provides the family member an opportunity to support the older person’s wellbeing where possible, understand health status changes, and start preparing for their loved one’s death. [2]
Supporting SDMs in their role
Aged care workers:
- Ensure SDMs are well informed about their role and responsibilities for the older person. Explain when their input will be needed and update them on relevant information relating to the older person.
- Provide SDMs with appropriate resources and support, and answer any questions they or the older person may have, such as referring them to the Advance Care Planning Australia website.
The evidence:
- SDMs can lack clarity in their role and expectations placed on them. [2] They may not have complete understanding of what the process of dying involves. [3]
- Family members acting as SDMs worried about the impact of their care decisions e.g., that making specific decisions about the older person’s care (for palliative care) at the end of life may lead to inadequate care. [2]
- Some family members would like to be involved but without the power to make decisions. [2] Some SDMs may not feel the need to take part in decisions because they do not feel capable enough. [2]
- Having a decision aid on goals of care and a structured conversation with the care team led to an increased chance of having a goals of care discussion relating to people with advanced dementia (compared to control). [4]
Communicating and collaborating with SDMs
Health professionals:
- Acknowledge and understand the role and contribution of SDMs and how it affects your practice in delivering care at the end of life.
Organisations:
- Ensure that SDMs are informed about the appropriate emergency contacts and critical changes relevant to the older person.
- Involve SDMs in family meetings where appropriate and ensure that a specific family meeting occurs following a critical change point.
- Establish a mechanism for exchanging information regarding individuals receiving palliative care.
The evidence:
- Consulting and including SDMs and other family members in decisions about individual care can vary. [3] Individual satisfaction of those involved can be impacted by the amount of time they have to make decisions and who is involved from a professional perspective. [3]
- SDMs depend on health professionals to start conversations about end-of-life issues and recognise changes in the health status of the person within their care. [2] Health professionals support decision-making when they listen and ask for input from SDMs on the person’s status and care. [2]
- Frustration, stress, and uncertainty can arise when there are challenges in communication between staff and family members. [3] Similarly, family members who went on to become SDMs voiced that suboptimal guidance / support from health professionals also contributed to feelings of distress and uncertainty. [5]
- SDMs felt frustrated and dissatisfied when there was a lack of information about their loved one’s health status, recommended treatments, and time with the treating staff member or clinician. [2]