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Advance Care Planning: What is it? 
05 Jan 2012, 11:50 AM

Advance Care Planning is not a term most people are familiar with. Here are some resources that help explain what it means.

Virtual Hospice's article Health Care Decisions: An Approach to Decision Making and Advance Care Planning by Dr. Mike Harlos

If prefer watching over reading, watch this video; Dr. Doris Barwich, from the Fraser Health Authorty gives a introduction about advance care planning.

You'll find lots a practical information on http://www.advancecareplanning.ca, including:

  • Why make a plan?
  • Learn how to make your advance care plan
  • Help others make a plan

We're often not very good at planning ahead at any stage of life. Planning for the end of life even less so. Plans are good, but conversations are even better.

Have you talked about healthcare wishes with anyone? What helped get the conversation started?  


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Reply by kathykastner
06 Jan 2012, 12:24 AM

I think you're right on about the term 'advance care planning' - it may be the language health care professionals use but it's not the way we 'real people' talk - if we talk at all  - about how we'd like our days to end.  I don't even know enough about medical interventions and the repercussions if I want them.

One thing I am aware of -  through reading Catch 22 author Joseph Heller's "No Laughing Matter" about his experiences with Guillain-Barré Syndrome:  his description of getting his feeding tube replaced made my stomach turn. Prompted me to search feeding tubes including finding a YouTube video. I now know what I don't want!  Thanks for links to resources. They're great. Kathy

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Reply by AdvanceCarePlan
06 Jan 2012, 1:08 AM

Thanks Colleen for spreading the word about our website (www.advancecareplanning.ca) and resources -- and for reminding Canadians that advance care planning is a positive step in our lives!


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Reply by Cath1
23 Jan 2012, 9:56 PM

I actually believe that advance care planning with the emphasis on advance is something every person should consider before a crisis arises. Still, having said that, I do have a concern though about doing one for myself. It would require me to make a huge leap of faith to trust that whomever was making the life-or-death decision at the hospital, by following my express wishes, would respect my directive in the context of whatever situation I happened to be in. I would also want my family to have input about the decision if there was time and opportunity to do so.

I have so little trust in our healthcare providers so I am unsure that I would want to have a DNR order on file. For instance, in a case of catastrophic event, where my life would rely upon a stranger's interpretation of what consititutes a catastrophic event, I'd find that difficult to trust. Say I had a massive heart attack, the kind that some people do recover from, if I had a DNR on file, I would be at the mercy of the judgment of others, and I cannot say I feel comfortable with that scenario.

I do think ideally advance care planning is a good idea, but I also see how it could be used to further another person's agenda and not fully consider the best interest of the patient and their true wishes. I have to think a lot more about this before I would commit to having one put in place.
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Reply by AdvanceCarePlan
24 Jan 2012, 6:13 PM

I think these are very real and valid concerns. One of the main goals of the Speak Up campaign is to help Canadians think of advance care planning as a process and an ongoing conversation - rather than a document to fill out and file away. One of the most important components of an advance care plan is naming and having conversations with a Substitute Decision Maker - the person who would speak for you if you cannot speak for yourself. This should be someone who you feel will have the confidence and ability to advocate for you.

Conversations with your Substitute Decision Maker and your family will help to make some of these difficult situations easier to navigate and give them the confidence to make decisions about your care without having to specifically outline each possibility. We can't predict what will happen, but we can give loved ones general guidelines for our preferences so that you (and they) are not relying upon a stranger's interpretation.

Colleen noted the blog: Plans are good, but conversations are even better from our website - there is also a new blog - milestones for making and reviewing a plan (http://www.advancecareplanning.ca/blog/the-top-ten-milestones-for-making-(and-reviewing)-your-advance-care-plan.aspx) that outlines the value and role of a Substitute Decision Maker and ongoing conversations.
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Reply by Cath1
24 Jan 2012, 7:00 PM

Hi AdvanceCarePlan"

Thanks for your post and additional information. I think I most appreciate your understanding how conflicted I feel about making such a decision, and for validating my concerns. The way you explain it as a process and an evolving conversation makes total sense to me, and helps me to warm up to the idea.

I was my late mother's Subsitute Decision Maker but it was put in place years ago mainly because she at times needed to be hospitalized because she had a mental illness and during brief times of crisis, she could not make certain decisions. Oddly, while we spoke intimately and often throughout the years about our views on dying and death, we never established anything more formal than a continuing Power of Attorney document. In the end, that document helped of course, because with it I was the legally recognized as the person who could speak on my Mom's behalf. The real weight behind the document though was our "If this happened to me, I would want you to do . . ." conversations that covered just about every scenario imaginable so I felt confident that I not only knew my mother's wishes, but understood and respected them.

I do have issues about trusting strangers, no matter how well-intentioned, with end of life decisions, but I have alerted my family to what I would want and I am sure they would respect my wishes. The conversations between my Mom and I are now taking place with the younger generation, my children. I'm touching wood that my children won't have to make these hard decisions for a very long time, but I do know from experience with my Mom, that having the conversation and knowing what the person wants and expects, knowing what they interpret to be extraordinary measures or no invention, and in what circumstances they would choose or reject such treatments, does help us to carry out the wishes of those we most love. 

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Reply by AdvanceCarePlan
24 Jan 2012, 11:56 PM

So well put! Your conversations with your mother sound so intimate and meaningful. And now you are giving a real gift to your famly members by having the same conversations with them, and giving them the same confidence to undertand and respect your wishes. This is what we hope all Canadians will do!
best wishes,
Advance Care Plan 
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Reply by Cath1
25 Jan 2012, 12:30 AM

Thanks Nanci! (Advance Care Plan)

I really do believe that communication is key between family members and their doctors as well. The more we talk and share openly our wishes, the better chance we have that they will be respected in the end. 

There are some cases where these decisions become complicated and controversial, which is so unfortunate, such as in circumstances when a family member wants every effort made to save or prolong a loved one's life and then advocates as such, and which sometimes causes a conflict of interest between the family and the treating doctor and/or hospital. The wishes of the elderly are a real concern, and they are most vulnerable to having their and their family's wishes disregarded because I suspect as a society their lives are least valued, in my opinion.

I cannot imagine how difficult those type of cases must be for the families because when they are in crisis mode and preparing to possibly say goodbye to their loved one forever, the last thing they need is to feel that their loved one is not receiving the kind of care they feel they deserve. 

The medical community in my opinion courts mistrust about end of life decision making when they at times seem more interested in saving money, freeing up hospital and long term care beds, project their own views and use their considerable power to pressure people into making decisions that some families cannot accept, or need more time to consider. Most people don't welcome being influenced by "outsiders" and may perceive bad motives when they feel pressured to conform to a doctor's idea of what is best in the situation for the person they dearly love. I believe even in these contensious and highly charged emotional situations, good communication is key, but communication is an exchange and the medical profession needs to work on listening well to what their patients and their families share with them in trust, and they should strive to respect what they hear.

Let's all keep the conversation alive so we will all have a better chance of experiencing a good death based upon our own end of life directives, when and if possible.

Thans for the feedback, and have a great evening, Nanci!:)

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Reply by NatR
30 Jan 2012, 2:07 PM

good morning, 

Throwing in my two cents about advance directives and end of life - I recently began actually writing things down on paper and bravely found out that it didnt result in me being struck by lightning!

I like a lot of people am fearful of discussing end of life, avoid it, ignore it, it will go away.  No such luck!  We are all headed there.  Because of many discussions I have had with some great gals with insight, Colleen Young and Kathy Kastner  - I have learned a lot and learned to face my fears.  It is still hard - I am just a young 62 - not expecting to be suddenly ill or have an accident..but that can come at any time.  Age doesnt matter...but quality of life does.

Quality of life goes right to the last breath.  At supper last evening I shared with my daughter that she would get an email soon, not to panic, that I was not dying..but that my wishes and thoughts on end of life care would be coming to her in an email.  My daughter perked up her ears right away and wanted me to talk on about it...but I didnt go into depth.  It was a first for me though.  To express to my daughter that I had wishes, that I had choices, and that depending on what life brought my way, I would still get to change my mind about my decisions based on my ability at the time, and the illness, condition or whatever circumstance I was facing.

At least now, I have made a stab in the dark so to speak...a beginning of making my choices known.  I felt a bit braver and empowered when I wrote my wishes...but it is still not the easiest thing in the world.  I have to thank Kathy and Colleen for giving seminars where it is discussed and yes, even laughed about with humour...as life's journey should be taken a bit more lightly...and every day valued for its content

I want end of life to have some positive outcome...to let others know that even at end of life we have power, choice, and comfort directed by ourselves.  Without sharing that, we may end up with situations we arent pleased about.  The more we know, the more we are empowered.  
Thanks for reading,
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16 Apr 2012, 1:40 PM

Because today, April 16th, is National Advance Care Planning Day, I thought I would re-animate this thread. Have you thought about who will speak for you if you can't speak for yourself?
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