What Happens When a Substitute Decision-Maker and the Doctor Disagree?

When someone is incapable of making their own health-care decision, that decision may be made by a substitute decision-maker (SDM). Usually, the SDM is a spouse, adult child, parent or another close family member.

But being the SDM does not mean that you can make whatever decision you think is right.

Ontario's Health Care Consent Act sets out rules that SDMs are legally required to follow. And sometimes, a health-care provider and an SDM disagree about whether those rules are being followed.

When that happens, the dispute can end up before the Consent and Capacity Board (CCB) through what is commonly called a Form G application.

How is an SDM supposed to make decisions?

Section 21 of the Health Care Consent Act tells an SDM how decisions must be made.

The first question is whether the patient expressed a prior capable wish that applies to the circumstances. Generally, if the patient expressed a relevant wish while capable and after turning 16, the SDM must follow it.

If there is no applicable prior capable wish, the SDM must make the decision based on the patient's best interests.

Importantly, "best interests" does not simply mean what the SDM personally thinks would be best. The Act identifies factors that have to be considered, including the patient's values and beliefs, other wishes expressed by the patient, whether the proposed treatment is likely to improve the patient's condition or prevent it from deteriorating, the risks and benefits of the treatment, and whether a less restrictive or intrusive alternative would be as beneficial.

What if the doctor thinks the SDM is making the wrong decision?

Imagine that a patient is critically ill and incapable of making their own treatment decisions. Their family believes the patient would want treatment to continue. The medical team believes further treatment is not in the patient's best interests and propose removing life support.

The family says: "We know her. She would want to keep fighting."

The clinical team says: "We don't believe there is a prior capable wish that applies to this situation, and we don't believe continued treatment is in her best interests."

Both sides believe they are the ones upholding the law and doing the right thing. But there is an impasse and the SDM will not consent to the removal of life support.

What is a Form G application?

If a health-care provider believes that an SDM has not followed the legal rules for substitute decision-making, an application can be made to the Consent and Capacity Board.

These applications are relatively uncommon. In my practice, I tend to encounter them in particularly difficult cases, including end-of-life disputes where the disagreement between the family and clinical team has become significant and is creating serious ethical and clinical concerns.

Doctors do not generally rush into a Form G application. It means participating in a legal proceeding, preparing evidence, involving hospital legal counsel and spending time at a hearing. It is a significant step.

What happens at the hearing?

The health-care provider, the incapable patient and the SDM are parties to the proceeding. The Board can also add other parties.

The hearing focuses on whether the SDM has followed the decision-making rules in the Health Care Consent Act.

Are Form G cases difficult to win?

For SDMs, yes.

One challenge I frequently see is that families know the patient extremely well but have very little written evidence of what the patient actually wanted.

Often, conversations (if they happened at all) happened years earlier and may have been fairly general.

The family believes that they know what their loved one would want. But proving that a particular statement amounts to a legally binding prior capable wish — and that it applies to the patient's current circumstances — can be difficult.

If there is no applicable prior capable wish, the analysis moves to best interests. At that point, medical evidence about the patient's condition, prognosis, risks and expected benefits of treatment can become extremely important.

That can make these cases particularly challenging for families.

What can the Consent and Capacity Board do?

If the Board decides that the SDM has not complied with section 21, it can give the SDM directions about how the decision must be made.

If the SDM does not comply within the time specified by the Board, the legislation provides that the SDM is no longer authorized to make that particular decision.

But a Form G application does not generally remove the person's authority as SDM for every aspect of the patient's care.

The dispute is about the particular decision before the Board.

A Form G proceeding can have value, even if the odds are slim

Sometimes families decide to participate in a Form G proceeding even when they understand that their legal case will be difficult to win.

A hearing provides an opportunity for the evidence to be examined carefully, for the family's understanding of the patient's wishes to be heard, and for the disagreement to be determined by an independent tribunal rather than simply remaining a conflict between the family and the clinical team. Going through the hearing can give the family peace of mind that they tried everything possible to advocate for their loved one.

How we help when there is a disagreement

You do not have to wait until a Form G application has been filed to get legal advice.

In fact, sometimes the most useful time to get advice is when a disagreement with the health-care team is developing and a Form G hearing is being discussed or threatened.

We can help families understand exactly what decision is in dispute and what the law requires the substitute decision-maker to consider. We can also help an SDM think through how to explain their decision to the health-care team in a way that connects it to the patient's prior capable wishes or, where there is no applicable wish, the patient's best interests.

Sometimes that means helping the family identify important information the clinical team may not have. Sometimes it means developing questions to ask the doctors about the patient's prognosis, treatment options, risks and alternatives. It can also mean helping an SDM understand where their position may be legally vulnerable before the dispute escalates further.

Where possible, we help families communicate and advocate with the clinical team in an effort to resolve the disagreement, obtain more information or time, and potentially avoid a Form G application altogether.

If a Form G application has already been filed, we can help the SDM navigate the Consent and Capacity Board process, prepare evidence and arguments, and understand what to expect at the hearing. We can represent the SDM at the hearing or, for families who prefer to represent themselves, provide behind-the-scenes advice and assistance with preparation.

These are difficult cases, and legal advice cannot guarantee that a hearing will be avoided or that an SDM's position will ultimately succeed. But understanding the legal framework early can help families make informed decisions, communicate their position more effectively and avoid inadvertently saying or doing something that undermines their case.