We’ve all imagined it. You’ve been told you have an incurable disease and have only a short time to live. There’d be things you’d like to see or do. There’d be things you’d want to say. There’d be certain people you’d want to spend time with.
You’d also start to wonder what dying might be like. Is it going to hurt? Am I going to be awake the whole time? Will people need to take care of me? And how long will it go on for?
In real life, you often don’t get time to think about it or make a plan. A car accident, a stroke, a heart attack. It can happen in an instant and at any age. Suddenly you are critically ill, with no ability to make or share your plan. That's why it's so important to take the time to choose who will speak for you when you can’t, and then to make sure that person has a good understanding of your wishes.
Who will speak for you?
Along with your will, you should also have POAs (Powers of Attorney) for Property and for Personal Care (If you don’t know what these are, there is a nice explanation here).
When you’re choosing your POA for personal care, you don’t want to pick just anyone. It’s not even about who you feel closest to. When you are considering someone as your POA, ask yourself the following questions:
Is this someone you trust? Are they going to be able to put your values and wishes above their own? You need to be confident that your POA will put your wishes and best interests first.
Is this someone who can advocate well for you? You need your POA to be someone who will be able to function well in a crisis, and who is assertive enough and diplomatic enough to work effectively with your healthcare team.
Will this person be able to communicate and work well with others? Your POA will have the authority to speak for you, but there may be a number of other people who care about you and will want to offer their thoughts.
Is this someone who is, themselves, in good health? There are never any guarantees, but you will need your POA to be in good health when you aren’t.
Making your wishes known: Communicate
Have “The Talk” with your POA
If you haven’t had a good conversation with your POA you’re leaving them in a very difficult position. They’re going to be asked to make decisions on your behalf, which can be a crushing responsibility. Make it easier by being explicit about what you want.
The final installment in this series will focus on how to get past some of the emotional barriers to having end-of-life discussions, but ultimately you need to sit down with your POA and have them ask you the following questions:
Are you satisfied with your current quality of life? If you are currently in poor health, particularly if your condition is ongoing or progressively worsening, and aren’t happy with your current situation, your POA needs to know.
What are the physical things that you must be able to do for life to be acceptable to you? Imagine some of the potential challenges you could be left with - the loss of a limb, paralysis from the waist down, neck down, or of one side of your body. The inability to speak. Would you accept a physical impairment that required others to care for you if you could still function perfectly well mentally? CAUTION: many people who are fully able who are asked these questions underestimate what they would be willing and perfectly able to cope with. This is, at least in part, because they’re envisioning themselves now compared to with the disability. The real question is: would you rather be dead than to have that disability? It’s also worth noting that many people with physical disabilities are able to cope quite well, more than what they had thought they would, and have a very full quality of life.
What are the mental things that you must be able to do for life to be acceptable to you? What degree of brain injury would you consider acceptable? Do you need to be fully conscious? To communicate meaningfully with your family? To be able to live independently? The same cautions apply here as to the physical disabilities above.
How much discomfort are you willing to go through? If you have a critical illness that will require a long period of rehabilitation, do you think you’d be willing to put in the work and discomfort if it meant you’d fully recover? What if you only had a 50% chance of recovery? A 10% chance?
Write it down - Create a “Living Will” or Advanced Directive
The greatest challenge in creating an advanced directive is that it is impossible to make every decision in advance. There are so many different situations that you might be in, with some deficits permanent and others temporary. Even more challenging, there will be uncertainty.
Advanced directives that are helpful focus more on your values than on specific decisions.
An excellent online resource for Canadians is the Plan Well Guide. They promote the creation of an Advanced Serious Illness Plan (ASIP) using an online planning tool. The tool takes you through planning in 3 stages, outlined in the Guide to Exploring, the Guide to Equipping and the Guide to Entrusting. Although it is more involved than completing a typical advanced directive template, it’s a worthwhile investment of your time.
Don’t forget organ and tissue donation:
Whatever tools you use to create your plan, don’t forget you declare your position on organ and tissue donation. One organ donor can save the lives of 8 others, and a tissue donor can help 75! Over 80% of Canadians are in favor of organ donation but only 25% are registered donors. To register as a donor, visit here for a list of provincial registries.
Next in #weWilltalk: Guardians: taking care of your kids, pets, and other dependents
#weWILLtalk is a series where we help you have the conversations that are critical to ensuring your end-of-life wishes are understood.
November marks Canada’s “Make a Will” Month—a reminder of the importance of having this essential document in place. Your Will serves as the foundation of your future plans, and is one of the most important documents you’ll ever create. But having a will is just the beginning. It’s just as important to have meaningful (and ongoing) conversations with your spouse, executor, and close family or friends about your wishes.
We know these discussions can feel daunting, but don’t worry—we’ve got you covered! In this series, we’ll walk you through tips, key topics, and practical ways to start critical conversations, so you can plan with confidence.