Ask Canadians, and 96% will say that they feel it’s important to have a living will. Then, ask them if they actually have one, and 87% will say, um, no. Less than half have spoken with family members about their wishes, and only 13% of us actually have a living will in place.
True, no matter how much spin you care to put on it, the discussion isn’t a pleasant one. It requires that we consider some grim possibilities, including terminal illness, incapacity, and death.
Still, at some point, it’s something we really do need to talk about, and make some decisions around, something Les Kotzer knows intimately. Kotzer is a lawyer in Toronto who, for the breadth of his career, has spent his days talking about the very topic that the rest of us are so actively avoiding.
The key, he says, is that we owe it to ourselves and our families to answer two questions: Who is going to manage your finances if you are sick? And, who is going to manage your health care?
“In your mind, picture the Grand Canyon,” says Kotzer. “On the one side you have life and the other side you have death.”
It’s a stark image, though the reason Kotzer uses this visualization is precisely because it’s indelicate. In the eyes of the law, there is no grey area. There’s life, and then there’s death.
However, in the lives of many Canadians, there is actually a grey area. They say that you can’t be a little pregnant, which of course is true. But you can actually be, well, a little dead. Traditional wills—which most of us actually do have—have no bearing on things while we’re alive, even if our minds have made a regrettable head start for oblivion. If we haven’t expressed our wishes, and assigned power of attorney, the government steps in.
“You hit your head, develop Alzheimer’s, or you’re in a bad car accident and one doctor asks you who you are, where you are, those kinds of things. If you can’t answer him, the doctor, by law, is obligated to send a certificate of incapacity to the province. They then step in and freeze everything that you own. People don’t know this.”
He’s right of course, we don’t. And the reality can be as harrowing as it sounds. “People assume that my spouse can sign for me if I’m sick,” says Kotzer, “but a marriage license is not a replacement for a power of attorney.” Yes, your spouse has a right to half the house, but only half. And, if the assets are frozen, the house, and the accounts, and the investments, are all out of reach. If you don’t have power of attorney you have a real problem.
“It’s something that nobody likes to think about, including me,” says Iain Rankin, MLA for Timberlea-Prospect, Nova Scotia. “However, the last thing anyone wants in one of those situations is confusion about what to do next. In order to respect the patient’s and family’s wishes for end-of-life care, we need to know what those wishes are.”
Of course he’s not talking about finances, but care. Rankin was speaking in support of Speak Up, a national initiative aimed at getting people talking about end of life care. It’s a topic that has gained more attention in recent years, in part due to the the experience of baby boomers in caring for their parents. In too many cases, the experience hasn’t been positive, exasperated by confusion around desires, hopes, and needs. Also included is a sense of regret that certain conversations didn’t take place sooner, as waiting has often meant that they didn’t happen at all.
We’re also learning that it’s not a conversation about death at all, but rather reaffirming all those things that give quality and meaning and dignity to our lives. It’s a concept that forms the core of Atul Gawande’s book, Being Mortal. When all is said and done, says Gawande, “we want safety for those we love and we want autonomy for ourselves.” Autonomy to do what we want, to interact with others, and to decide who we want to be.
And what we want to eat. Says Gawande, “One of the most common reasons elderly people in nursing homes get written up is for food violations." He adds that
" ... the kind of food violation you’ll see in 80-year-old patients with Alzheimer’s is, like, hoarding cookies, when they’re supposed to be on a puréed diet. … Yes, there is the very real possibility that they might choke. But if these cookies are so important and meaningful to them, then, honestly, just let them eat the cookies. Because if you don’t have that freedom, you feel like you’re in a prison. People have to be allowed to make choices. And you can argue with them about choices — it’s just like in your own home, where you argue with your parents, or they argue with you about what you both think are good choices and bad choices. But that’s part of being alive. People have priorities besides just surviving and being safe, and we as a society have to recognize that."
No, the ability to eat cookies isn’t likely to be the deciding factor for many, if any, of us. But the point is a valid one: What is important to you? Gawande mentions a patient who said “as long as I can eat chocolate ice cream and watch football on television, that’ll be good enough for me.” For others, understandably, that isn’t enough. We not only want to watch the game, we want to talk about it with others. We want to enjoy conversation over the ice cream. For others still, there are other thresholds. Gawande has noted that his wife’s is particularly low: “If I look happy, that’s good enough for me. … I may not even recognize you anymore, but hey, if I look happy, that’s good enough. Keep me going.”
The common term of art is “living will,” and it's one that we continue to use, says Kotzer, because it’s familiar. Better terms, though, are those that provide a more accurate description of what it really is. Some gaining prominent usage are Advance Directive and Advance Care Plan.
All of these terms, however, suggest a level of formality that perhaps isn’t required. A care plan can be a legal document, signed and dated in the presence of witnesses, though it doesn’t have to be. It can be as simple as writing down your thoughts, dating and signing the paper, and letting loved ones know where it is. With this, they can move ahead (if and when the time comes) as part of their own more robust dementia care plan.
It also doesn’t need to be comprehensive in the way some might suppose. If you wish to go into detail, that’s fine. If you’d like to keep things simple, that’s fine too. Either way, these are the things that you should include:
Ultimately none of these conversations, decisions, or documents are really for you. They are for the people in your life. All of it is your opportunity to help them through what will be a very difficult time in their lives. It’s been shown that the family members of people who have ACPs experience less symptoms of depression and emotional trauma.
That’s a function of the fact that the canyon Kotzer describes is getting ever wider with advances in medical treatment and intervention. End of life has become less a moment than a process. I remember my grandmother wishing that she might die in her sleep after a day with family and friends. Certainly, that’s something we’d all wish. But she didn’t. Instead of a moment, it was years. Did we make the right decisions during that period? Perhaps, though it’s hard to know. I suspect that some probably weren’t the decisions that she would have made. We’ll never know.