Working with Patients and Substitute Decisions Makers (SDMs)

When a patient is assessed and found to lack capacity, another person is asked to make healthcare and/or personal care decisions for them. This person is called a substitute decision-maker (SDM). An SDM may be identified prior to a patient's loss of capacity, but their authority to make decisions only begins when and if a patient is assessed and found to lack capacity.

The law requires that consent is given by the patient or, where the patient lacks capacity, by the lawful substitute decision-maker. Consent from someone who is not the lawful SDM would not be a valid consent.

It is important to talk about substitute decision-making with patients and families to ensure the patient's capable preferences are known and can be honored by someone they trust. Conversation enables families to be better prepared. It can include education about the statutory hierarchy if a delegate has not been legally appointed under a personal directive. Ideally, these conversations can occur before a patient loses decision-making capacity. This proactive work will be enormously useful if and when a person's medical condition changes and they no longer have the capacity to make their own decisions.

A patient may have chosen their SDM in advance through a personal directive. The individual identified in a personal directive to make decisions on a patient's behalf is called a delegate, often just referred to as an SDM. Usually this is a member of the patient's family or a friend, but it does not need to be. In some cases, a patient may have a legally appointed representative or guardian. If there is a court-appointed representative, the Representation Order will explain which areas of decision-making the representative is responsible for.

If (i) the patient has not named a delegate/SDM in a personal directive and (ii) there is no Representation Order or legally appointed guardian, then the SDM is determined in accordance with (iii) the statutory hierarchy. The statutory hierarchy is outlined below:

1. Spouse* (including common-law partner**)
2. Adult child
3. Parent
4. A person who stands in loco parentis*** to the patient
5. Adult brother or sister
6. Grandparent
7. Adult grandchild
8. Adult aunt or uncle
9. Adult niece or nephew
10. Any other adult relative
11. The Public Trustee

*Spouse means, with respect to a patient, a person who is cohabitating with the patient in a conjugal relationship as married spouse, registered domestic partner, or common-law partner.

**Common-law partner means, with respect to a patient, a person who has cohabitated with the patient in a conjugal relationship for at least one year.

***In loco parentis means "to stand in place of a parent". This is a high threshold to meet and is context specific. Factors to be considered include the length of the relationship and how the individual acts as a parental figure to the patient (provision of physical, emotional, and/or financial support), etc.

Note: With the exception of spouses, legally adopted family members, and individuals standing in loco parentis, an SDM must be a blood relative.

A personal directive doesn't 'expire', but the SDM is expected to respect any subsequent wishes made by a patient while they had capacity.

Sometimes a patient may have written their personal directive long ago, possibly at a different time in their life, imagining a very different kind of health care scenario. The SDM would still be required to consult the patient's personal directive, and any subsequent wishes (oral, written, or expressed in another way) made by the patient while they had capacity should guide decision-making, taking into account current circumstances. The patient's preferences may have remained steadfast and unwavering over the years (for example, they may have expressed a consistent wish to not receive blood products), or their views may have evolved over time in response to their changing values, beliefs and circumstances.

Power of attorney is a document that legally designates to one or more people to make decisions related to the property and finances of another person. An Enduring Power of Attorney is a special power of attorney document that clearly states the authority to act on the patient's behalf continues after the patient loses competency to handle their own financial affairs.

A substitute decision-maker is a person responsible for making personal care and/or healthcare decisions on a patient's behalf. This may include decisions about health care, nutrition, and hydration (fluids), housing/placement in long-term care, clothing, hygiene, recreation, comfort, social activities, and support services.

Sometimes, a patient may have chosen 1 person to make both financial/property and personal care decisions on their behalf, but this is not always the case. Being responsible for one area does not mean that the person is responsible for both unless the patient has designated it.

It's always a good idea for the healthcare team to request a copy of the relevant documentation for the health record, particularly if there is family conflict around decision making.

A representative is appointed by the court through a Representation Order pursuant to the Adult Capacity and Decision-Making Act, which has replaced the Guardianship Act. The Representation Order will set out which particular kinds of decisions the representative has authority for. For example, the Representation Order may state that the patient's representative has authority over financial decisions, but not healthcare decisions.

While the Adult Capacity and Decision-Making Act has replaced the Guardianship Act, orders that were made under the Guardianship Act are still valid.

A guardian is appointed under legislation or court order and can be temporary or permanent. For example: children taken into the care and custody of the Department of Community Services. If the patient has a representative or guardian, the healthcare team should request a copy of relevant documentation to clarify the scope of the authority of the representative/guardian.

The other kinds of SDM are identified either by the patient themselves through a personal directive or by the statutory hierarchy (see above).

Next of kin is not a legal term, but a term that has been used in health care and continues to be used informally. Typically, this refers to a person (not necessarily a family member) identified by the patient as someone who is their support person and who should be notified, for example, if the patient requires supplies brought in or transportation after a procedure. Note that this may not be their legal substitute decision-maker should the patient lose decision-making capacity. For clarity and to ensure the legal SDM is making decisions, it is important that next of kin and SDM not be used interchangeably.

In order to be the SDM, a person identified using the statutory hierarchy, must meet the following criteria:

1. have decision-making capacity;
2. excepting a spouse, have had personal contact with the patient over the preceding 12-month period, or been granted a court order to shorten or waive this requirement;
3. be willing to assume the role of SDM;
4. know of no person in a higher category of the statutory hierarchy who is able and willing to act as SDM; and
5. make a statement in writing certifying the person’s relationship to the patient and the information set out in sections (b)–(d) above. (The Declaration of Substitute Decision-Maker Form can be used for this).

This does not have to be in-person contact and includes electronic communication and written communication. Contact should be reciprocated by the patient and not just one-sided by the proposed SDM.

An SDM appointed under a Personal Directive (or legally appointed guardian or representative) must also have capacity and be willing to assume the role. They do not need to have had contact with the patient within the past 12 months.

It can often to be useful to ask an SDM what cultural ideas, processes or rituals might be important to them in making a decision. For example, for some families it may be culturally important to involve a large group of relatives in decision-making, as opposed to limiting discussion to a single SDM or the patient's immediate household members. For some families, it may be culturally important to have a community leader, Elder or religious advisor participate in decision-making.

SDMs may want to involve others in the decision-making process, but ultimately the consent must come from the SDM.