My interest in Advance Care Planning came alive in the spring of 2016. It started with a frantic phone call from my beloved Sarah. Her dad, David, a dear friend and former partner of mine, was being helicoptered to Lions Gate Hospital. He’d been having a happy dinner party with friends on the Sunshine Coast when a terrible pain took over his head. They rushed him to the hospital, where he was diagnosed with a brain bleed and immediately hooked up to full-on life support.
David hadn’t spoken about what he’d want in this particular kind of emergency, and when we all converged for a meeting at the hospital (three ex-wives, four children from two marriages, and their miscellaneous spouses) the doctor was less than helpful. When the question of removing David from life support was gingerly raised he replied curtly, “It’s harder to do than you think, when you know there’s life inside.” David had just begun to very faintly squeeze hands, and that was the end of the conversation.
Later that same year I visited my friend Greg. He’d been strangely silent for months—grieving, I assumed, the tragic death of his wife the previous summer. When I finally heard back from Greg he shared about a cancer diagnosis he’d been struggling with, but thought he’d turned a corner. I arrived on a sunny April morning to find the sickest person I have ever seen still living. His essence remained, but his ravaged body was almost unrecognizable.
Greg’s situation was different than David’s, but just as tragic. A doctor himself, Greg had long been adamant that he wanted little of what mainstream medicine had to offer. Instead, still reeling with shock and grief, he chose to self-administer an alternative protocol for his cancer treatment. He isolated himself, unable to ask for or receive the help repeatedly offered, and came very close to dying alone. A small posse of us came together and made a hasty plan for his future care. All this was for naught, though, as ten days later he drew his final breath. His children were with him at the end but the window to converse had already closed.
Neither David nor Greg had any documentation in place. David’s care defaulted to the standard life-saving procedures that our medical system relies on. He now lives at the Purdy Pavilion at UBC, paralyzed on one side and requiring 24-hour care. Greg died in a hospital ICU—the last place his rebel nature would have chosen. A similar fate will befall any of us in situations such as these, if we do not make our wishes known in advance.
I became quasi-obsessed with the whole notion of Advance Care Planning. I attended workshops—of which there aren’t many—and spent endless hours trying to sort through the confusing and often conflicting information I found online. Eventually I realized I needed to talk about it with others and gathered a small group to work through the material I’d collected. We benefitted enormously from the opportunity to share our stories, thoughts and wishes. In a nutshell, this is what we covered:
Advance Care Planning is for while you are alive. There are two main documents: a Representation Agreement and an Enduring Power of Attorney.
A Representation Agreement covers health and personal care and is the essential document that appoints someone of your choice to speak for you if you can’t speak for yourself. The tricky part (that requires plenty of thought and conversation) is articulating your wishes clearly so your representative can act with clarity and conviction in what could be a challenging situation. Ideally your wishes are written down (your Advance Care Plan) and are revisited from time to time.
An Enduring Power of Attorney covers your financial and legal affairs. This allows your appointed person to access your funds and attend to other legal transactions in the event you become incapacitated. This is a surprisingly critical document in that the Public Guardian and Trustee take over if it’s not in place.
Estate planning is for after your death and the essential document is, of course, a will.
The Nidus Personal Planning and Resource Centre, a non-profit organization devoted to personal planning, offers the most comprehensive information I’ve found anywhere. There’s a lot of information, so I suggest spending a few minutes navigating the site then starting with the “Types of Planning” page so you don’t get bogged down!
Staying with the process is sometimes difficult, but gathering with others really helps. We just can’t know when our time on this planet will come to an end and dying without our wishes known creates a particular kind of emergency for everyone, possibly even you.
Is there documentation that you still need to put in place? Let me know, I’d love to hear!
Thanks for this great info. I need to change my will and do both the other documents. I can see why they matter. But I also have 1000 (ok, 100) things to do that require almost immediate attention because they have deadlines attached. I am hoping the ACP docs will work their way to the top of the list before the axe of fate strikes me down 🙂
Haha! It’s the old urgent versus important dilemma. ACP rarely feels urgent, until it is. I’m happy to help you, Pat!
Excellent advice, Amy! Because of you, I have put things in place for myself, and I feel confident knowing I’m not going to leave a mess for my loved ones to sort out. I’ve even included the kind of music I want played at my “celebration of life,” and hopefully some funds to cover a kick-ass party (only those who will say nice things about me get to come).
Keep spreading your knowledge and wisdom, Ame!
Love, Mo
Thank you, Mo! You are an inspiration dear heart. Love you! xox
Thanks again for the reminder dear Amy! my papers all need an update….I can relate to the ‘self-sufficiency’ habit – and am aware of the benefit of connecting with others in this process! thanks for the spur!!
love
Rose
Glad to hear from you, Rose! Keep me posted on your progress. Good luck! Love, Amy xo
Great article, Amy. I’ve been volunteering at Hospice for the past year and a half and ACP can ease at least one of the elements of a most difficult situation. It’s also a reminder for me to review what my ACP looks like as I need about 12 yrs. ago.
Love,
Lorraine
Thank you, Lorraine! Glad to hear from you and wishing you good luck on your updates! Love, Amy xo
Thanks Amy, all my friends have mentioned this subject to me numerous times in the past, but I think it was your video that inspired me to really start thinking about getting things in order. It’s been at least 50 years since I’ve heard your voice. Keep up the good work.
So sweet to hear from you, Ralph! Yes, probably close to 50 years since we’ve seen each other. How does that happen?! Good luck with getting your documents in order. Hugs to you! Amy
This is wonderful information, Amy. Both Michael and I have Representation Agreements and PoA. Thank heavens we did it awhile ago as now Michael can no longer write (or print) his name. I am going to bring the information you have provided to my friends and hopefully we can all get together and discuss our Advance Planning needs. I am also going to check on the PoA as I don’t know if it is an “enduring” PoA.
You are the care taker of all those who have been blessed with your presence in our lives.
xo Dene
Wonderful to hear from you, Dene! I’m glad to hear you have much of the paperwork in order. Thank you for spreading the word!! Love you my friend. xox
Thanks for this important overview, Amy. Much appreciated!
While “taking care of business” by actually following the steps involved in making the burden on others less daunting and clear would qualify one as a responsible adult, it is more about being a good human. Yes, foresight CAN become clearer when our hindsight is allowed to build our worldview, but the blinders of denial often limit preemptive actions.
I don’t know about other jurisdictions, but in Yukon, an executor will be appointed by the state, if none has been designated, in common law situations. Good to know. Thanks again, N
Thank you for your thoughts Norman! Big hugs to you ❤️