Palliative care is driven by patients’ goals and values, which can become challenging when patients become less able to direct their own care and lose capacity. Capacity requires four elements: Understanding (ability to process information about the medical decision at hand), Appreciation (ability to apply understanding to self), Reasoning (ability to compare options and consequences), Expression (ability to express choice).

Capacity is specific to each medical decision. In contrast, competency is a legal definition for an enduring inability to make decisions determined by a judge and should not be interchangeably used with capacity.

Substitute decision makers (SDM) play an important role when patients lose capacity. In British Columbia, SDMs are determined by hierarchy based on relationship to the patient or by medical Representation Agreements (RA). These are different from Enduring Power of Attorney documents, which strictly cover financial / legal affairs. There are two RAs, under section 7 and 9 of the Representation Agreement Act, which can cover healthcare in addition to financial/legal affairs. The main difference for healthcare between the two is that RA9 provides full representation, including the power to give or refuse consent to health care necessary to preserve life, while RA7 provides representation for most other healthcare. RA7 instead allows for a more inclusive definition of capacity to create the RA; the details are outlined in section 8.

Once a SDM is established, they must act in the best interests of the patient and respect any pre-existing wishes expressed by the patient. Even if there are pre-existing wishes from the patient, they must be re-evaluated within the current clinical context; if we as physicians feel that an intervention has more risk than benefit, it is important to express this and provide a clear recommendation so that the SDM can act in the patient’s best interest and avoid harm.

Information and resources on the above and more is available through the Palliative Care Pathway on Pathways BC.