Imagine you’re on an operating table and someone needs to make a decision — quickly — about your treatment. Are you comfortable with the idea of family members acting on your behalf? Not everyone is. For reasons that can range from estrangement to embarrassment, some people don’t want family involved in their health care. Perhaps they regularly list a non-relative as their emergency contact on medical forms, employee files, or waivers. But under Ontario’s health and privacy laws, that’s not enough.
“‘Emergency contact’ is not a legally defined entity,” explains Nadia Incardona, an emergency physician at Michael Garron Hospital in Toronto, and a clinical adviser with Hospice Palliative Care Ontario (HPCO). “It’s the nomenclature that’s been passed down historically, but it has zero founding in the Health Care Consent Act.” That act, established in 1996, protects the rights of capable people to make their own health-care decisions; when they are incapable of doing so, the act also sets out a hierarchy of “substitute decision-makers” (SDMs), which doctors must then consult. “By law,” says Incardona, “everyone in Ontario automatically has an SDM — even if you dislike or disagree with them.”
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The hierarchy consists of nine potential SDMs. First, doctors look for a court-appointed guardian, an attorney for personal care, or a representative appointed by the Consent and Capacity Board. (This independent provincial tribunal, established under the Health Care and Consent Act, is made up of psychiatrists, lawyers, and members of the public who conduct hearings on matters related to consent, capacity, and substitute decision-making.) It’s rare and costly to have an appointed guardian or representative, and because most people are unaware this hierarchy exists, it’s unlikely they’ve designated an attorney for personal care, either. Next on the list are spouses or partners and other relatives. If none of the above SDMs exist or will act, then the Office of the Public Guardian and Trustee steps in.
Why might someone prefer a non-relative to become their SDM? It’s possible, says Incardona, that a terminally ill patient might not feel confident his or her spouse will be emotionally capable of carrying out their end-of-life wishes when the time comes. Or that a patient might prefer to keep their medical condition private. Perhaps it’s not a question of preference, but of circumstance: an elderly man with no living relatives left; a single woman without children or siblings; a low-income married couple without the means to go through a divorce.
An SDM is expected to act according to the grantor’s values, wishes, and beliefs. Typically, they’re called upon during life-and-death situations (e.g., deciding to discontinue life support), but not always. “It could be as simple as you come into the hospital, drunk, after falling down,” says Incardona, “and we need to do a CAT scan, but you can’t capably consent.” At this point, emergency contacts are no more than the names of people you know — they can’t legally make decisions on your behalf. Doctors need an SDM from that hierarchy, and more often than not, they arrive at relatives.
If that’s a concern, then it’s crucial to appoint a non-relative as your SDM. But according to Mark Handelman, counsel at Toronto’s Whaley Estate, who practises health and elder law, “The emergency room is the wrong place to make that decision.” Ideally, SDMs are appointed before they’re actually needed. The easiest way to designate one is by executing a power of attorney for personal care, either with a lawyer or by downloading the forms online and filling them out yourself. The grantor and SDM each keep a copy, and the grantor can print off an SDM wallet card from the Government of Ontario’s website. “If you’ve properly designated an attorney for personal care, that supersedes any relatives on the hierarchy in terms of decision-making,” Incardona says.
This is referred to as “advance care planning” — a term that, according to a 2013 study in the BMJ, 84 per cent of Canadians have never heard. Incardona thinks much of this has to do with terminology; she’s noticed a disconnect between the language used in the Health Care Consent Act and terms still employed by many hospitals, which ask patients for their “emergency contact” or “next of kin.” “These are old, inaccurate terms that were built into electronic medical records,” she says, “and no one has questioned it.”
So for the past year and a half, Incardona has been working to revamp the registration process at Michael Garron Hospital. Now, when patients arrive, they’re asked for an SDM. It hasn’t been a seamless rollout, though. “When we tell them what an SDM is,” she says, “some worry we know something bad about their health that we haven’t told them.” But Incardona hopes that hospitals across Ontario will follow suit.
Still, the initiative is just one piece of the puzzle. Although it’s easy for Ontarians to register themselves online as organ donors with the Ministry of Health, where any doctor can find that information, no similar registry exists for SDMs. That means there’s no surefire way to get this information from patient to doctor at urgent times. A March 2017 report from the Law Commission of Ontario concluded that the current SDM system is confusing, lacks coordination, and should be regulated. But right now, Handelman says, “There’s no will on the part of our government to achieve that. Though it wouldn’t be difficult to implement.”
In the meantime, public awareness campaigns are working to inspire discussion around advance care planning: Speak Up Ontario, which was launched by HPCO, works to educate the public about what SDMs do and how they’re appointed. (It also provides a printable wallet card.) But until a registry is established, carrying around that card is the only real safeguard against family being contacted — even if an SDM has been properly appointed.
“People have no problem buying insurance,” Incardona says. “When it comes to your health care, having a substitute decision-maker is the same concept.” Until our government and institutions catch up to the proper terminology, people need to equip themselves. That means appointing the appropriate person and talking to them about end-of-life care, so that their wishes will be carried out when it matters most.
Lisa Coxon is a Toronto-based freelance journalist whose work has appeared in Toronto Life and Reader’s Digest, among others.