When people plan for the future, they tend to stick to milestones like education, first home and maybe even retirement.

It can be much more difficult to take on the less pleasant, more final milestones like dealing with cancer or incapacity. 

"As much as we'd like to live 'til we're 99, perfectly healthy, and then die in our sleep, it doesn't happen for most of us," says Joanne Taylor, the executive director of Nidus, a registered charity helping B.C. residents with their personal planning.

"We could be in an accident or have a chronic illness and need that assistance with decision making."

Canadians can appoint a friend or family member to make health-care decisions on their behalf, like whether to have surgery or be placed in a retirement home, if they are incapacitated.

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"It's about appointing someone to carry out your wishes if you're not able to do that," Taylor says.

But even with proper planning there isn't a 100 per cent guarantee that these appointed decision makers will follow someone's wishes.

Living will is not enough

The terminology and legal documents required to appoint a decision maker vary by province and territory. Speak Up, an initiative by the National Advance Care Planning Task Group, lists resources specific to each one.

In Ontario, for example, people can designate someone through a power of attorney for personal care, says Susannah Roth, a trusts and estates lawyer at Toronto-based O'Sullivan Estate Lawyers. People can write what's often called a letter of wishes, which includes information on what kind of treatments they do and don't want, along with the power of attorney document.

In B.C., meanwhile, people can do essentially the same thing, but through what's called a representation agreement, the kind of document that carries similar legal weight.

Some Canadians have placed their final wishes — like when to stop medical treatment or whether to donate organs — in unofficial documents, often called living wills, says Ron Usher, a lawyer and president of Nidus.

But Usher says it's important to put the information in a legally binding document to avoid possible trouble in the future. 

In Ontario, there is some official recognition of living wills, but only a power of attorney for personal care will allow a designated decision maker to carry out someone's health-care wishes, according to the provincial Office of the Public Guardian and Trustee.

Margot Bentley, a long-time nurse in B.C., wrote a living will in 1991. In it, she said that if she developed an extreme disability, she did not want to be given food or water, or have her life otherwise extended.

Now in her early 80s, she is living with dementia in a retirement home where staff spoon-feed her. In March, the B.C. Court of Appeal dismissed her family's bid to let her die.

Bentley's living will is not a legally binding document in B.C., says Usher, who says that a recognized representation agreement may have prevented some of the subsequent legal battles after Bentley, according to her family, became incapable of deciding whether or not to continue eating.

Finding docs can be 'a bit of a challenge'

Margot Bentley

B.C.'s highest court ruled in March that Margot Bentley, an elderly woman living with dementia in a care facility, should continue to be spoon-fed by staff despite her apparent wishes. (Credit: Katherine Hammond)

Still, even if an incapacitated patient filled out a representation agreement or whatever their local requirement is, situations can arise where their wishes will be ignored.

Sometimes, just finding a critical patient's legal documents "does become a bit of a challenge," says Taylor.

Be very thoughtful and cautious about what you put in writing. - Joanne Taylor, Nidus executive director

Medical staff might not know the person has an advanced directive plan or designated decision maker.

Likewise, the decision maker may not know where someone's plan is.

Nidus encourages B.C. residents to carry a wallet card and register their plans online with its personal planning registry.

This past Christmas Eve, a woman suffered a serious stroke, for example, and her family needed to make decisions on her behalf at the hospital. Taylor helped them access the woman's wishes through the online registry

Nidus plans to expand the registry to all Canadians, she says.

Another common problem is that a patient's decision maker could also be unavailable, perhaps even seriously injured in the same accident, or unwilling to participate in the process.

"It is possible to resign" as a decision maker, Roth says. So many lawyers and organizations encourage people to select more than one person, so that someone else can step in if needed.

A "team approach" can also help when a tough decision has to be made, Taylor says.

'Rare' for wishes to be ignored

Roth says that it would be under "very rare circumstances" that an available directive would be ignored by health-care staff or the designated decision maker.

"Unless they had some really outrageous or bizarre wishes ... those wishes should be followed," she says.

But there are cases where a new technology may be available, for example, which a patient couldn't have known about when setting out last wishes, she says. Health-care staff could then overrule the patient's directives.

Or, someone's final wishes could be interpreted differently by health-care staff and other loved ones. Then the disagreeing party could appeal the choices being made, she says. In Ontario, the Consent and Capacity Board would make the final judgement.

Those involved in this process say that it is important to discuss the intricacies of health-care wishes with any designated decision makers and re-visit the plan annually to help avoid some of these pitfalls.

Canadians should also make legally binding plans for their legal and financial affairs when planning their advance directives, Taylor says, because health care is connected to a person's financial affairs.

Their financial resources, for example, may determine what type of long-term care facility they could live in, she says, but someone needs to be able to access their money if they are incapacitated.

"It's not all about health care, and it's not all about the care system," Taylor says.

Her best advice: "Be very thoughtful and cautious about what you put in writing." 

In Bentley's case, the judge, her care facility and her family did not interpret her living will the same way.