Advance Care Planning: Starting The Conversation About Your End of Life Wishes

April 19, 2019

Discussing a loved one’s end-of-life wishes is not a comfortable topic of conversation for many.

However, it is critical to have someone in place to make important medical-related decisions on your behalf when you are unable to do so yourself.

Especially as the senior demographic increases in Canada and people live longer, we are seeing many more important—and complex—decisions that often need to be made regarding their well-being.

That’s where Advance Care Planning comes in.

To learn more about this issue, we interviewed Susan Hagar, founder and CEO of Nurse on Board; and pastpresident of the Canadian Association of Self-Employed Registered Nurses.

Susan, what is Advance Care Planning?

Ultimately, it’s about having the conversation and making plans around end-of-life decision-making: that is, determining who will be your substitute decision maker (or “Power of Attorney”) in the event you cannot speak for yourself.

Is this type of planning always related to healthcare?

Often, yes. ACP is generally related to health. As one example, some people prefer not to be resuscitated. Some people also do not want to be kept alive if they get to a point where they cannot swallow and end up requiring a feeding tube. But sometimes it’s also about comfort. Some seniors want their family to know they will spend every last dime they have to stay in their home, rather than move into a retirement home or long-term care facility.

Is there a difference between a “Power of Attorney” and a “substitute decision maker”?

Many people use the terms interchangeably. At its most basic, the substitute decision maker is the person who holds your power of attorney (that is, the legal documentation).

More specifically, there are two types: Power of Attorney for Personal Care, and Power of Attorney for Property. The Power of Attorney for Personal Care is only enacted once an individual is declared incompetent to make their own decisions. This involves six domains and an individual may be deemed competent in one area and not another. These domains include healthcare, nutrition, shelter, clothing, hygiene, and safety.  

Are legal documents required?

Sometimes, yes. But the Speak Up campaign, which promotes ACP, is also about having those conversations and discussing scenarios where other people may have to make decisions for you.

What most people find is that over time, the more you talk about it, the more you start to get a sense of a loved one’s threshold. For example, would your loved one be willing to be on dialysis for the rest of their life, endure the pain and suffering associated with it, and leave their home three times a week to be in a clinic space for three to four hours each time?

In other words, there is great value in even just starting the conversation and getting to know the other person’s comfort levels.

What’s something most people would find surprising about Advance Care Planning?

First, it’s how few seminars about ACP actually involve healthcare professionals. When I’ve attended workshops where people are discussing end-of-life wishes, I’ve been surprised how often there is nobody there to help explain things from a medical perspective.

As an example, if you do not wish to be resuscitated, you must have your physician or nurse complete a DNRC form and be sure to have that form easily available should paramedics arrive at your home. It doesn’t matter if your spouse or a family member knows for a fact that you don’t want to be resuscitated; unless you have that signed form available, the paramedics are legally obligated to perform CPR on you. People are often shocked to learn this.

Meanwhile, many people don’t have any idea of the outcome statistics related to CPR—they may be saying “yes” to CPR but they have chronic healthcare problems to begin with, and the chances of them getting out of the hospital ever again may only be 5%.

These are the sorts of details that are sadly lacking in this type of discussion about end-of-life wishes. At Nurse on Board, our role is to connect the dots and ensure all those details are dealt with, to ensure people fully understand and are understood.

Seniors gathered around a table having a serious conversation
Advanced Care Planning: the sooner the better

So when it all comes down to it, who should people choose as their substitute decision maker?

At the end of the day, the decision maker you select is hopefully doing their best on your behalf—but they get to decide.

That’s why it’s important to ask yourself “Is this person actually able to make decisions that will honour what I want?” It’s very clear sometimes that they’re not. I’ve seen many instances where someone wants to keep another person on the planet as long as they can, even if that person is suffering.

Where can people find more resources about Advance Care Planning?

The Speak Up campaign has a very helpful website for facilitating the conversation and provides documents to help you make your plan.

However, it’s important to know that the “rules of the road” are different across all provinces—so you may want to also refer to your provincial government for information. The Ontario Ministry of the Attorney General has a kit to help you create your own Power of Attorney yourself.

When should people begin Advance Care Planning?

The likelihood of needing to enact a power of attorney increases as you get older and your health declines. So if you’ve had health issues, doing ACP is probably better sooner than later.

How is power of attorney different from a Will?

Power of attorney only applies when you’re alive; that decision maker has no position after you’ve died. Meanwhile, a Will speaks strictly to your assets, personal effects, and what you want to leave to whom, among other things.

Should I get a lawyer involved with my Advance Care Planning?

It’s definitely recommended. Power of Attorney for Personal Care, as well as the Power of Attorney for Property, require legal documentation. This is especially important where a POA may be challenged, so it’s best to get a lawyer involved—you can typically get your Will and POA documents completed for somewhere between $500 and $1,000. However, it’s better to have something in place versus nothing; and you can also download and print off a POA kit from the Ministry of Ontario website.

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