The Need-to-Knows on Advance Care Planning and Directives

When it comes to living well throughout a dementia journey, preparation is important — so much so that D. William Molloy, a professor of medicine at University College Cork in Cork, Ireland, has dedicated a large chunk of his career to it.

Molloy’s expertise with advance care planning began in Hamilton, Ont. in the early 1980s. In his clinic, Molloy worked with patients living with dementia. There, he repeatedly saw tension arise from family care partners surrounding differing opinions on the “right” care approach when patients weren’t able to express their own desires.

Seeing the difficult situations play out time and time again, along with infighting amongst families about who should make the decisions on the person’s behalf, led Molloy to begin exploring development of a care directive.

The experiences inspired him to pen Let Me Decide, a book first published in 1989 that contains everything you need to prepare an advance care directive, along with the how-tos of it all.

To date, more than one million copies of the book have been sold worldwide, and editions have been published in seven different languages. The latest international edition was published in 2017, with Dr. Brian Daly as a co-author.

Here, Molloy helps break down the basics of advance care directives.

Simply put, an advance care directive is a legal document that outlines the care you want (or don’t want) in the future if you are incapable of expressing your wishes. This often includes preference surrounding things like CPR, feeding tubes and ventilators, as well as receiving care at home or in a facility.

“When you’re competent [and] you’re able to make decisions, you can say ‘In the future, if this happens to me or that happens to me, I want this and I don’t want that,’” explains Molloy, adding that otherwise, the decision would be left to care partners or professionals.

“It allows you to extend your autonomy to a period of time in the future, where you normally would have lost control over your life.”

Molloy notes that, in general, there are two types of advance care directives.

An instructional directive is a written outline of instructions for care should you fall ill and are unable to express your wishes. Such directives usually follow the living will format as a document in which specific instructions follow an “If this happens to me, I want that type of care” template.

A proxy directive puts the decisions of care into a designated person’s hands. The directive makers are allowed to nominate a close friend or relative to act on their behalf if they become incompetent later. This proxy has all the rights of a competent person to make health and personal care decisions on their behalf. Molloy notes that when this relationship is established, both parties should sit down and go over as many situations as possible for confident decision making down the road.

Each province and territory has slightly differing laws related to types of directive recognized — some won’t recognize a care directive alone without proxy. In any case, Molloy suggests combining both approaches.

In Canada, advance care directives differ slightly by province, though the basics are much the same.

Differences in provincial legislation requirements can include what documents are required and how many witnesses are needed to sign the directive, along with some terms being slightly different. For example, many provinces use the term “agent” for the designated proxy, though British Columbia uses Temporary Substitute Decision Maker (TSDM).

While many provinces offer templates and guides, Advance Care Directives can often be written without templates as long as they meet requirements outlined. Molloy notes that the Let Me Decide program is legal throughout Canada.

“Whenever the notion hits you,” says Molloy. Often, seeing difficulties firsthand in end-of-life care, whether it be a family member, friend or other connection, can be the impetus for looking into advance care directives, according to Molloy.

However, it’s never too early to complete a directive. If filling out an in-depth directive feels overwhelming at the moment, Molloy suggests starting with a conversation about what your care preferences may be. Such conversations may be important later in ensuring your care can be as personalized as possible.