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From The Diary Of: Laurel Gillespie, Director of Advance Care Planning in Canada

Laurel Gillespie shares her journey as a cancer survivor and how it led her to the world of Advance Care Planning.

Written By Amanda Levine
July 24, 2020

Not many people have the benefit of hindsight when diagnosed with a terminal illness. Thankfully, Laurel Gillespie is one of the lucky ones. Diagnosed with triple-negative breast cancer and a pretty grim prognosis, you could say Laurel had a literal brush with death at the young age of 38. 

Laurel is now in remission but the way she thinks about end-of-life planning is forever changed. So much so that she recently joined the Canadian Hospice Palliative Care Association (CHPCA) as Director of Advance Care Planning in Canada. 

This is Laurel’s story.

Tell us a little bit about yourself.

I came from humble beginnings. I grew up in the Maritimes and was the youngest of 8 children. Eventually, I married someone in the military and moved far from home. 

I was always really responsible and liked to plan ahead. I had a good financial plan in place and, while I knew estate planning was something I should do, I never really felt a sense of urgency. 

Then, life threw me for a bit of a loop.

What’s the curveball that changed your perspective on life?

About 13 years ago, I was diagnosed with a terminal illness at age 38. The prognosis was bad; doctors said I had a 20% chance of surviving the next 5 years. I had nine year-old twins at the time and a six year old and I was clearly not ready to die.

I sort of kicked into survival mode and focused on doing what I had to do to get through it. I didn’t hide my sickness from children because I knew there was a reality in which they might not have a mother in a few years, and I wanted to get them comfortable with the idea of that. 

I didn’t wear a wig around the house and I tried to be open and real about my situation (well, as much as you could be with three kids under 10.) I still took them to their soccer games and tried to almost normalize the idea that I was sick and needed special care. I just wanted to get my family comfortable having these types of conversations.

This was a pivotal moment in my life. All of a sudden, my whole outlook shifted. I became acutely aware of, not only the importance of estate planning, but also the details of my own death. Questions were swirling around my mind like:

If I’m going to die, what do I want that to look like?

Do I want to be at home or in the hospital?

How do I reduce the stress on my family?

What led you to the world of advance care planning?

Well, for starters, I was completely blindsided by my diagnosis. I never saw it coming. But, that’s life—you never know what curveballs will be thrown at you and when. It’s important to be prepared for anything. After all, life is what you make it.

Back when I was diagnosed, ACP was still a really new concept. End-of-life and palliative care was something I had experience with through my work and exposure to some really amazing healthcare professionals.

I spent over 8 years working at the Ottawa Hospital Cancer Centre. I remember going into the office of one of the palliative care doctors, Dr. Martin Chasen to talk to him about something, and saying to him: “you know, I think you must have one of the most challenging jobs here because you have to have all these tough conversations with patients about their own death.”  Everyone adored Dr. Chasen, he had a special quality about him and people just felt really comfortable in his presence.

I’ll never forget how he responded. He said, it really wasn’t so bad because these conversations were very important so the patient would receive the best care possible and care that was aligned with their values, wishes, and beliefs. Starting these conversations was simply a matter of asking them to reflect and think; What’s important to me? What makes my day worth living and what brings me joy?”

That really resonated with me.

Another big inspiration was my uncle, Dr. Terry Gillespie, who sadly passed away a couple of years ago. During his career, he was well known for his work in the area of Cystic Fibrosis. He passionately believed in treating the whole person, not just the disease. 

He would not only treat the symptoms but incorporate diet, conversations with family, and conversations with the patient into their treatment. He was even awarded the Order of Canada because his patients lived longer than most due to his care and holistic approach in treating the whole patient. 

Knowing these great doctors, plus having my own personal experience, made it abundantly clear that future healthcare planning needs shouldn’t ever be an afterthought. Because you never know what’s going to happen. 

In September of 2019, I was lucky enough to have the opportunity to join CHPCA as Director of Advance Care Planning in Canada, so I obviously jumped at the chance at having a larger impact on people’s lives through ACP at a national level.

What is Advance Care Planning and why is it important for everyone–not just those who are unwell–to think about?

Advance care planning (ACP) is about planning for your future health care needs, not just about end-of-life.  Think of it more as being about how you want to live, should you become unwell and what you want your care to look and feel like—whether that’s tomorrow or years from now. Because let’s face it, we don’t know what’s coming. Not one person has ever said: “The next time I die…”

ACP makes sure your voice is heard. Plus, when your loved ones know exactly what you would have wanted for your future care, it takes the guesswork out of the equation and takes a huge burden off their shoulders during what is inevitably a stressful time.

People feel uncomfortable talking about future health care needs, dying, and death, but it’s something that’s going to happen so all we can really do is prepare ourselves and build resiliency. ACP is a really effective way of doing that.

Why is it important to have an ACP if you already have a Power of Attorney for Personal Care (POA-PC)?

An Advance Care Plan goes into a lot more detail than traditional Wills and Powers of Attorney. POA-PCs don’t dive into your specific needs and wants in terms of medical decisions and “goals of care.” 

Additionally, your health care professionals are part of the conversation at some point along the way in deciding what your options are for Goals of Care are learning about choices.

POA-PCs can sometimes take hours to access which won’t help if you’re in the hospital and in need of immediate care. You may have to endure treatments that you don’t want, like intubation or experiencing CPR multiple times.

My dad had heart problems and was hospitalized several times, during which he was often on life support and incapacitated (he was even given his last rights three times!)

It was a long and arduous ordeal and, towards the end of it, when he was finally able to speak he said he probably wouldn’t have wanted to go through all that pain and stress again if he had known what was in store for him. But we never would have known since he couldn’t tell us.

An Advance Care Plan could have remedied that. However, in hindsight, he went on to live another 4 and a half years.  He made it clear after this last event that he did not want certain interventions in his care.

When is the right time to start thinking about ACP?

The easiest time is now when you are healthy.  It can be more difficult when you are newly diagnosed with a serious or terminal illness or a sudden event that leaves you unable to speak up for yourself. 

Today is the day! It’s best to make one when you’re well and healthy, however even if you are not well, it’s never too late!  

ACP is one of those things we need to think about as a natural part of life planning.  I would like to see us start to talk about it in high school so that it becomes a part of life planning, perhaps even alongside organ donation conversations. 

It’s never too early to start with ACP, but it can be too late if you get to a point when you can’t speak for yourself.

I encourage everyone to have an ACP in place before they’re in a crisis situation. It’s far less stressful to make one when you have a clear head rather than when you’re dealing with other stress factors. Make creating and updating your ACP as a regular part of your yearly living, just like financial planning and estate planning. 

It seems like you’ve had two lifetimes worth of experience at this point. Any final words of wisdom?

I’ll leave you with this: Having a life well lived is a life well planned. 

As much as we want to think we’re in control of our lives, we aren’t. But having an estate plan and an Advance Care Plan is something you can control.

ACP is really a win-win-win: The patient (or resident) gets what they want, your family and those closest to you are not left guessing and can make decisions confidently, and your healthcare team can make decisions more quickly and easily. 

ACP doesn’t cost you anything, but you have a whole lot to gain from it.

The epilogue

Planning for your future–or ‘adulting’ as the kids like to call it–has many facets including estate planning and Advance Care Planning. While it can feel overwhelming to have these conversations, it’s really important to have them sooner rather than later. And it doesn’t have to be complicated or expensive. 

You can create your Advance Care Plan using ACP’s handy workbook, available across Canada. So now, there are no more excuses to not be prepared for all those curveballs 😉.

No matter how you do it, make sure your wishes are documented and you’re having these conversations while you can. It’s the greatest gift you can give to the ones you care about most. 

Want to learn more? Click here to learn more about the 5 steps of Advance Care Planning!