Dian Cohen has had first hand experience being in intensive care in a hospital – and that has given her a unique insight into the decisions that she would like others to make on her behalf if she could no longer speak for herself.
“I had a fairly traumatic health scare some time ago,” she says. “At the time, I wasn’t thinking about the future – but now, as I get older, I understand that this could happen again. It’s important to be clear about the care that I want – and don’t want.”
Mrs. Cohen is an economist, author and journalist who has counseled Canadians on money management for over 40 years. Now, as she tailors her presentations more towards estate planning, she is also encouraging others to make their Advance Care Plan – not just for themselves, but to give friends and family the confidence to make important decisions on their behalf.
“People somehow have this superstition that if you talk about it, it might happen,” she says. “ But if we don’t speak up, how will others know how to help us? That’s an awful burden to leave behind.”
Marjorie Goodfellow knows one thing for sure. She would prefer almost anything to a lingering life of incapacity. That’s why she’s created an Advance Care Plan to help others make decisions for her if she is unable to communicate for herself.
“My mother’s gradual loss of capacity due to dementia made me realize how important it is that someone else know what is important to someone in a care situation,” she says. “My mother had me to help her but I have no immediate family, and so I have chosen two good friends to act as Substitute Decision Makers.”
These friends are people who can make decisions on her behalf if she is unable to communicate her wishes. She’s also shared her Advance Care Plan with them so that they can feel confident making those decisions.
“I’ve seen a number of people die in a variety of circumstances,” she says. “It’s helped me understand what I want and what I don’t want to have happen to me. Everyone is going to reach the end of life at some point – it’s important that we don’t burden others with having to make decisions in the dark. Take the time to make a plan and share it with others.”
As an emergency department nurse in Calgary, 26-year old Ashley Horton has witnessed hundreds of families coping with the death of loved ones. But a first-hand experience within her own family gave her a new perspective about how difficult those end-of-life situations – and the conversations around them – can be.
“My mother became ill quite quickly – and even though I had seen so many families go through this before, I never truly understood how devastating it could be.” she says. “We had to make a lot of decisions. Looking back, I now realize how important it is to plan ahead and be prepared for the future.”
Ms. Horton has turned that experience into a positive for others, providing support and compassion for families, and helping to ease them into these difficult, but important conversations.
“The best advice I can give is to be knowledgeable about the future,” she says. “Educate yourself about treatments, what could happen, and what would be important to you. And most importantly, tell people around you so that they can support you if something happens. You owe it to yourself and to them.”
I never really thought of my own death, how I would die, what it would be like, and how people would remember me. I don’t think it’s a common thought for most 22 year olds. Like the majority of society, I avoided the thought of death – perhaps because of my youth and the invincibility many youth feel. The thought that I would eventually die seemed foggy, a far-off place in the future. Perhaps this idea is from the overall medical ideology of western society that there is always a cure or medical procedures that will save and preserve life.
Almost three years ago, a friend was diagnosed with cancer. Once a healthy 20-year old who loved to dance, she was now battling this “thing” that was assaulting her body and attempting to claim her life. She fought like a champ and actually beat it into remission. A few months later, the cancer was back and no longer responding to treatments and she passed away this past fall. For me and other friends, this was a shock. It never crossed my mind that this was a potential outcome.
While grieving the loss of my friend, I had an overwhelming feeling of absolute terror and anxiety. For many of us, including myself, it was the realization that there is no timeline, there is no age limit to sickness or death. She didn’t see her 22nd birthday, she didn’t get to graduate from college or university, and she didn’t get to buy her first car, or start a career. Aren’t those all milestones that are anticipated and expected prior to death? The realization that these milestones could be taken from me in an instant was terrifying, Death happens when you’re older, right? Wrong. It is a natural part of life and unavoidable for all of us.
Death and dying has become a taboo topic in Western society. Hidden away in sterile hospitals, death for younger people seems like a far-way topic, something that won’t happen until far into the future. But that’s not the way it happens.
One of the ways I feel I have been able to confront the topic was to attempt to have control of this part of my life, specifically through Advance Care Planning. If everyone dies, why not plan for it? Why not talk about it? Death is natural, and it will happen to you. Make sure your voice is heard.