Working with Patients and Substitute Decisions Makers (SDMs)

Relationships that haven't been disclosed to the broader family may emerge. For example, a patient may have described the person as a "friend" when, in fact, they were living in a conjugal relationship as same-sex, common-law partners. Or, an adult child who maintained a relationship with their parent, but not with the rest of the family, may come forward. While team members will need to tread carefully to demonstrate respect and concern for privacy, it may sometimes be necessary to confirm and uphold the correct substitute decision-maker's authority to act as SDM against a family's wishes. As appropriate to the situation, prideHealth may be a useful resource.

If the patient appointed their spouse, but then they separated or divorced, then that appointment of the spouse is revoked (is no longer in effect) unless the Personal Directive specifically stated that the individual would remain a delegate even if they were no longer the patient's spouse.

Not necessarily.

If a couple is legally married, registered domestic partners, or has already been living together in a conjugal relationship for over a year (i.e. they meet the definition of common-law spouse), and they continue to regard each other as spouses (i.e. they have not chosen to separate), but they are required to live apart due to employment (e.g. military posting), incarceration, or health care reasons (e.g. one lives in LTC) then the spouse of the patient can still be interpreted to meet the definition of spouse in the statutory hierarchy for substitute decision-makers. In these situations, it is most likely that the spouses still share a permanent address and if it wasn't for the work/incarceration/healthcare circumstances, they would still be living together.

There may be individuals who still share an address for custody or financial reasons but are no longer in a conjugal relationship where they regard themselves as each other's spouse. In such cases, the two individuals would no longer be considered spouses under the law for the purposes of acting as an SDM.

Sometimes, an SDM will not answer or return calls from the healthcare team or refuses to give or refuse consent on a proposed intervention. When this occurs it can be challenging for the healthcare provider; the healthcare provider should take steps to ensure that the SDM is receiving the requests from the healthcare team and that the SDM is aware that they need to make a decision. If possible, the healthcare team should try to have a conversation with the SDM about why they are not engaging, as there may be other factors at play. The healthcare team should document their attempts to engage with the SDM on the patient health record.

The healthcare team cannot simply bypass the SDM if the SDM is not responding. If the difficulty continues the healthcare team should discuss with the Health Services Manager/Director. If required, the Director can consult with Legal Services or Ethics.

Allegations of abuse do not automatically disqualify a person from being the legal SDM. Family members or friends acting on behalf of the patient may endeavor to legally challenge the SDM as rightful substitute decision-maker by making an application in court if they believe that the SDM is not the appropriate person to make healthcare decisions for the patient.

Concerns of abuse may also involve reporting requirements, please see Abuse Prevention and Response ‑ Policy and Procedure ‑ NSHA AD-QR-001. If the patient continued to live with their spouse in a conjugal relationship and other family members allege the spouse was abusive toward the patient, the spouse still meets the definition of "spouse" and their appointment as an SDM would stand.

SDMs need to have the information that the patient would have required in order to make an informed decision. Apart from this, different SDMs may reasonably want different amounts of information and involvement. Some might prefer that you explain day-to-day what you're doing and why, while others might prefer to only be engaged for bigger-picture, goals of care kinds of discussion. Assessing how much the SDM wishes to be involved can help to promote trust and address expectations.

It can sometimes be difficult to take the time to speak with SDMs as often as they might like, but it is generally worth the effort and time. Failures to communicate well may result in a breakdown in trust.

Sometimes, when the healthcare team is very busy, SDMs may feel that they shouldn't bother team members. Equally, healthcare team members may become desensitized to the significance of what is happening for a family. It may be useful for healthcare providers to remember that while they may have seen a particular type of situation hundreds of times before, for the patient and SDM experiencing it for the first time, it may be extremely confusing and distressing.

The healthcare team must ensure that they provide the relevant information and answer any questions from the SDM in order for the SDM to make informed decisions and give informed consent. When healthcare providers see the value of spending more time with an SDM, but don't have the time to engage them further, this can be a significant source of moral distress. Reaching out to colleagues, Managers and other internal supports may be useful.