Advance Care Planning - DO IT!

I have been absorbing a great deal of information about Advance Care Planning in advance of my upcoming planning session for clients.  I realized that the best plan for me is to complete my own advance care plan.

My partner and I talk openly and regularly about what we each define as quality of life and what kinds of interventions would be welcome and not welcome should we become ill and incapable of making our own health care decisions.  We are what is considered automatic substitute decision makers.  We have talked about music at a funeral and where we would like to be at the end of our life.  We know what we want surrounding us and who; where we want to be and what we want around us.  But we haven’t stored any of the information anywhere.

So, I investigated the many advance care tools that exist-and there are many – some quite thorough and, importantly for us, highly inclusive in their language and considerations around family structure and recognition of important but less ‘traditional’ relationships or circumstances. Most are interactive .pdf documents that you can download and print but a couple – including the tool I chose, are completely online and have secured storage online so I can make additions, deletions and updates easily and never have to worry about which “safe place” I put the document in (a place I will inevitably forget!)

It is important to start this planning process now.  It is important to review and update your plan annually and it is vitally important that you engage your loved ones – especially your substitute decision maker (sometimes referred to as Power of Attorney), in regular conversations about your feelings.  We must be able to talk about what we each see as quality of life.  We should be able to ask each other about where they would like to die and what they would like (if given the choice) around us.   As I complete my ACP, ( I am using an online tool called Take Care Together – takecaretogether.ca) I am finding myself thinking differently about what I see as quality of life.  I have these conversations all the time with family and clients; it is an area of extreme comfort.  When answering the questions for myself, in the quiet reflection of this process I find myself really considering how I define quality of life or what it means to me to be ‘incapable of decision making’.  My job is to work with the voices of others being asked this question without bringing my opinions or beliefs into that space.  I guess I do a great job because when being asked the questions for myself, I did not really know what I wanted.  This is another reason to get started in the process now – what I believe I want now may not be what I want when faced with a terminal illness or accident, but it will help prepare me to connect clearly with my own thoughts, feelings and preferences.

Thinking ahead also allows us to look at our current living environment.  If I, like 85% of Canadians do, want to die at home then is this home capable of adapting for potential mobility and care demands?  The program I am using also has an offering from an occupational therapist with tips for things to consider in your home to adapt for those who want to die at home or at least stay at home as long as possible.  It provides another opportunity to consider my priorities for my end-of-life.

This may be difficult to believe but it is true – thinking and talking about dying and death really releases the spirit to embrace life.  In my role I have always believed this and advocate for this point of view in all of my Death Cafes and in client meetings and family meetings, but creating my own plan for me has proven the assertion to be true.  I feel more able to embrace the world around me.  I am optimistic about the myriad options I can access for my end-of-life.

Please consider what you want, have the conversations and jump in and participate in a planning session near you.  If you are near to me – join me!  It is worth it.