Working with Patients and Substitute Decisions Makers (SDMs)

In some cases, healthcare teams may want to tread carefully if there is known disagreement between family members that are at the same level in the statutory hierarchy and, for example, equally present and involved in the patient's life. It may be appropriate to create safe spaces for the family to discuss the decisions required, possibly with facilitation by or support from the healthcare team. Sometimes it can help to establish that, whoever the decision maker is, the criteria for decision making are meant to be the same, with priority given to the patient's preferences and experience.

Sometimes a patient might have no family or friends but has a good relationship with a healthcare provider and they name that healthcare provider as their delegate.

If the patient loses capacity and a healthcare provider is acting as their delegate, the healthcare provider cannot at the same time be an active member of the patient's healthcare team. To serve both roles at the same time would be a conflict of interest. A healthcare provider should carefully consider the implications of accepting a delegate role and should discuss with their Manager/Director.

The individual needs to have capacity to understand/appreciate the information relating to making the POA/appointing someone under a POA, but they do not need to have capacity to manage their own finances. A lawyer or a relevant healthcare provider could assess the patient as having the requisite capacity to make a POA.

If a patient did not have decision-making capacity to appoint someone under a POA, then decision-making authority for finances and estate matters may go to the Public Trustee.

When a patient has the capacity to make some decisions and not others, it can be confusing for an SDM. As a first step, talking with the SDM about what decisions they do have authority to make and those they do not can be helpful, noting that capacity is the key feature that distinguishes who gets to make what decisions within their scope of authority.

Sometimes SDMs may want to make decisions for the patient even when the patient retains capacity in that domain, as the SDM may feel that the patient is making a wrong decision or disagrees with what the patient wants. In these situations, being clear about who gets to make the decision is important. An SDM, and perhaps families more generally, may also potentially benefit from support or coaching about how to share their concerns with the patient in a supportive manner.

It depends. In some cases, healthcare teams may need to highlight for SDMs the potential benefits of social interaction for a patient, encouraging them to think about the patient's overall best interests before any restriction of visitors.

A delegate/SDM appointed under a Personal Directive has authority to make all types of personal care decisions (unless the Personal Directive specifically restricted the SDM's authority). This would include decisions regarding recreational activities and visitation.

An SDM appointed under the statutory hierarchy only has authority to make decisions regarding:

1. health care/treatment (including discharge)
2. placement in long-term care
3. home-care services

An SDM appointed under the statutory hierarchy would have authority to make decisions regarding visitation if there was a healthcare component. For example, if the patient became very distressed whenever the visitor came and the healthcare team agreed there were clinical concerns relating to the visitation, then the SDM may have authority to limit visitation based on those clinical concerns.

An SDM must have decision-making capacity in order to provide valid informed consent or refusal. In some cases, the SDM may require accommodation or support relating to disadvantage or disability. With appropriate support, concerns about capacity may disappear.

If the healthcare team has concerns that the SDM does not have capacity to make the specified decision, the most responsible physician has an obligation, to the best of their ability, to assess the SDM's capacity. The results of the capacity assessment would then be placed on the patient's medical record — not the SDM's medical record. This is because the SDM's level of capacity is not being assessed for their own healthcare purposes, but for their capacity to act as SDM for the patient. This would have to be very carefully documented.

If, after the assessment, the most responsible physician has a reasonable belief that the SDM does not have the requisite level of capacity to consent on behalf of the patient, they must advise the SDM and then go to the alternate delegate (if one exists under a Personal Directive) or the next person on the SDM statutory hierarchy. This must be well documented on the patient's health record.

In some cases, the SDM may have fluctuating capacity. If an SDM is often in and out of decision-making capacity, and it was anticipated that time-sensitive decisions would be required, then it may be appropriate to ask the SDM if they wish to step down from this role while also, if appropriate, eliciting their knowledge of the patient's preferences, values, and beliefs.

For more information see "Who can assess capacity?”.

Sometimes an SDM may have a conflict of interest and appear to the team to be unreasonably motivated by their own interests. Sometimes we don't know the whole story and opening up difficult conversations can help to provide a fuller picture. Engaging the interdisciplinary team including Social Work may be useful.

When the SDM is believed to be abusing the patient by "the misappropriation or improper or illegal conversion of money or other valuable possessions" (PPIC Regulations, 3(1)(f)), then it should be reported to Protection for Persons in Care and consistent with Nova Scotia Health policy Abuse Prevention and Response – Protection for Persons in Care (AD-QR-001). Staff are encouraged to speak to their Health Services Manager or Director.

A patient who is formally assessed as lacking capacity on particular domains does not have to agree with who their SDM is or the decisions their SDM makes in order for healthcare providers to abide by the SDM's relevant decisions for the patient. Yet, it is better for all involved if the patient trusts their SDM in relation to such decisions. Healthcare providers can help facilitate a trusting relationship by counseling the patient and the SDM individually and jointly. If the patient's mistrust is severe enough to require special expertise, referral of the patient to psychotherapy may be helpful. Factual information that may explain some or all of this mistrust should be explored, such as if the SDM intentionally traumatized the patient in the past.

The healthcare provider could speak with the SDM about the concerns, and the SDM may voluntarily choose to give up their decision-making authority, but they are not legally obligated to. Alternatively, if the patient's family has concerns, a family member or friend of the patient could make an application to court under the Adult Capacity and Decision-Making Act to be appointed as the patient's representative.

A patient may express strong preferences related to issues they are formally incapable to decide on, in which case their SDM and healthcare providers do not have to abide by these preferences. Yet, it is better for all involved if such preferences are considered and, if appropriate, accommodated. If the patient's preferences considerably risk the patient's and/or others' safety, the SDM and healthcare providers should attempt to discuss this with the patient.

Examples of this kind of scenario might include when a patient who lacks capacity due to cognitive impairment wants to continue eating non-pureed foods despite a risk of choking or aspiration, or a patient who wants to continue to use risky substances they have relied on for an extended period.