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youngandthrifty shares an experience with advanced care planning and its importance in terms of health care decision making and our stressed Canadian health care system

I was hesitant to write a post possibly so depressing as this topic… but decided to go ahead because it’s something that is so important and not enough awareness is raised about it.  It’s just something people don’t like to talk about… sort of like talking to your pre-teen children about the “birds and the bees”…but worse because it’s about loss.  Talking about it is not meant to be morbid, but meant to facilitate communication- you want your voice to be heard…and you want your loved ones to make decisions you want, for you when you aren’t able to.

What the heck am I talking about, you ask?

Well, yesterday was the first annual National Advance Care Planning Day in Canada.  With our current health care system under stress and due to be even under more stress as baby boomers retire and age, it is important to ensure that we know what our loved ones’ wishes are.  Why is it so important?  It’s important because I doubt our current health care system can’t endure health care costs related to $5000 a night hospital stays for much longer.  It is important because death often doesn’t happen the way we envision it.  Many people, when they think of end of life, think of it as a peaceful event, we think of being able to tell our loved ones how much we care about them, and how much we value their relationship and effort over the years.  However, oftentimes death does not happen this way.

 elderly hands Pictures, Images and Photos

If we don’t let our loved ones know about wishes for a peaceful death, the ‘system’ takes over.  The paramedics that come and perform resuscitation on an 83 year old frail body,  they send your loved one to the hospital, and because no one knows what your loved ones wishes are, they put him in the ICU.  He will be hooked up to a machine.  Because so much time has lapsed between when the paramedics are called and when ‘heroic’ measures are performed, your loved one’s brain is not functioning and he is unable to respond to you.  Days elapse and the doctor and health care team asks for the family’s opinion– what did he want? Did he want to have heroic measures done on him?  After a few days, and many tears, much discussion, the painful decision is made to pull the plug.  He isn’t there anymore, he wasn’t there anymore to begin with, after the ambulance took him away.

How do I know?

Because this happened to my grandfather.

My grandmother didn’t know what my grandfather wanted.  They never talked about it.  My grandfather never talked to my parents or my aunts and uncles about it because it was taboo.

Oftentimes, the talk of death and end of life planning is so taboo that its not discussed.  People might not know that their loved one wants to die peacefully and without “heroic measures” performed upon them.  Many people don’t understand that life prolong measures may result in broken ribs.  Many people don’t understand what it might entail to be in an Intensive Care Unit (ICU), hooked up to a machine that is keeping you barely alive.  The line between life and death is blurred in the ICU, and oftentimes, many of the patients admitted don’t make it out.

Planning your care at the end of life doesn’t have to be a huge ordeal full of paperwork and a visit to the lawyer or notary public.  It can be as simple as a conversation.  You won’t know unless you ask.  Hopefully you won’t ever have to decide for your loved one and act on his or her best interests, but just in case you do, it would be helpful to know what they might have wanted you to do.

After the difficult death of my grandfather, and after the surprise and baffled questioning from the physician as to why it wasn’t discussed between my grandmother and grandfather, I have learned from this experience.  I asked my mom and dad what they would want us to do in the event that they are unable to make decisions for themselves.

It’s a time we can put aside to reflect on our values and beliefs, and share them with our loved ones.  We all deserve to die with dignity, and we should try our best to ensure that our loved ones do just that.  So to close, may I ask that you please talk to your loved ones about what your health care preferences are and how you want to be treated at the end of life.  The loss of a loved one will still result in painful grief for the life lost, but at least it could be a dignified death, and if the scenario played out differently, the way he likely would have wanted,  he would have been in the arms of my grandmother at the end of life, and not suffering- hooked up to a machine, in the last few days of life.

Readers, do you find it difficult to talk about death and dying with your loved ones?  Do you have a similar experience with advanced care planning you want to share?  What would you have done differently? Again, I’m sorry to be a Debbie Downer, but I think this conversation is important to have with the ones you love.

Article comments

Melissa says:

I think many people share this concern, especially as our population is living longer and longer. As an only child, my main concern is being able to be there for both my parents and child without getting burned out. Found some really good tips here http://pepperpot.ca/featured/how-to-cope-with-aging-parents-tips-for-women-caregivers/, but yours also provides some real food for thought. Thanks.

young says:

@Melissa- Thanks for sharing!

Evan says:

Our Rep Agreement is called a Health Care Proxy.

It is customary that when you have a Will done these ancillary docs will be done as well.

Evan says:

In Canada do you guys have the same thing as us in the US? Generally called a Living Will.

I have gotten particularly good at the conversation since I draft them for clients.

young says:

@Evan- Glad to have a lawyer on board, thanks for commenting, Evan. Yup, we have a Living Will, but I don’t think we use that term. Instead, they use the word Advanced Directive, but I believe that health care professionals don’t necessarily take this information even though it was written by the client too, because they may assume that the client changes his or her mind etc. In Canada, a Representation Agreement instead is used and appoints someone to make decisions on your behalf in terms of health care etc., if you can’t make these decisions yourself. It should be someone who knows you really well, knows what you would want, and who cares about you. Also, Living Wills are not effective when, for example, paramedics found someone who suddenly became unconscious in their room with a living will, but no signed “Do Not Resuscitate” form. Evan, it’s interesting to see the slight differences between the two countries, do people in the US use Living Wills heavily?

CF says:

I took a medical bioethics course a while back which discussed a lot of these issues. Even worse is the situation where different family members have competing ideas about what the individual “wanted”.

It may even be beneficial to have an “advanced directive” which dictates what care you want or don’t want, when you want to be resuscitated and when not, and who you designate to make your medical decisions for you if you are incapable (and whether those decisions should override your own advanced directive).

young says:

@CF- Thanks for the comment, CF. Yes, agree that many family members can have different opinions (usually I would think that’s the case). The daughter who lives on the other side of the country might have a different view about what the individual wants compared to the son who lives here.

Talking about it isn’t enough, though it’s a first step 🙂 Advanced directives are the best way to ensure your voice is heard.

Two Degrees says:

My father’s death came unexpectedly 4 years ago.

It went BOOM, a day out of the blue, while he was at the gym. He passed away from a heart attack at the age of 55. The only conversation I ever had about his death was him pointing out his suitcase under the bed – that’s where all his insurance papers were. With his death, I had no idea what to do – at the time I was 23 years old and living in Asia. I wasn’t in a place to help out with funeral arrangements or contacting family/friends. The biggest worry for me at the time was how I was getting back to Canada and if I could get the time off work. It almost seems so narrow-minded in hindsight, but when you’re in shock, you often can’t see the bigger picture.

Your post definitely made me realize that I need to think about my mom too, as well as my grandmother, who lives with us and is 92 years old this year. Some heavy stuff to think about!

young says:

@Two Degrees- sorry to hear about your fathers unexpected passing 🙁 I think those are the worst– at least your father didn’t have to suffer, but it’s hard when you don’t get to say goodbye the way we all want to. I guess that’s why its important to live each moment fully, and never hesitate to tell your loved ones how much you love them. It must have been even more difficult because you were overseas… I don’t think it was narrowminded of you to think that, I think when you are in shock, you are trying to figure out the logistics etc. and yes, I guess it can be difficult to see the bigger picture.

Your grandmother is 92! That’s amazing! Good genes running in the family 🙂
Yeah, I tried talking to my mom about it, and kind of got shot down- like “why are you saying such things?!” but I think I’m going to work at it in baby steps.

Country Girl says:

You’re absolutely right, this is so important to do. I had this discussion with my parents when I became their power of attorney. It’s also important to discuss after death options, such as organ donation as well.

young says:

@Country Girl- Wow, you definitely sound very organized (and your parents do too!) since they allotted you as Power of Attorney already. That’s true, I forgot to mention that- I think you don’t need a card anymore nowadays for organ donation- you just need to tell your family whether you want to participate.

krantcents says:

This discussion should occur before you need the care! When my mother entered the retirement home, they required us to take care of this and more. I think it is a good idea to take care of it as early as possible. It was very difficult to do with my 88 year old mother.

young says:

@krantcents- Definitely important to do so in a retirement home setting- otherwise I can see how easily the ‘system’ can take over. Sounds like your mom has the longevity gene as well! 🙂

It’s difficult to talk to parents about this. I haven’t brought it up, but will do at the first opportunity. They live in Thailand right now so it’s even more difficult. I’m pretty sure they don’t want to be hook up to an ICU. I don’t want to either. I told my wife to just throw my body in the ocean when I go. It’s environmentally friendly and cheap. She doesn’t like that though and said it’s probably not legal. :p

young says:

@retirebyforty- You’re always so practical, RB40 🙂 Yeah, I think in some countries/ states/provinces its illegal to dispose of human remains by scattering them in the ocean. I know that in certain places in Europe (e.g. Germany) its highly frowned upon to even be carrying an urn to a funeral etc. Though this would seem like a very nice way to be ‘buried’- I would love for my ashes to be scattered in a warm tropical ocean, though it would make it difficult for loved ones to visit. I think its’ hard to talk about these types of things when you’re not face to face, so I guess that gives you a reason to go to Thailand again!? 😉

Ravi Gupta says:

I find it hard to talk about with my own parents but I plan to have a living trust made sometime soon. In there I will outline what I want to happen to me in case of an emergency. My grandfather died and after many surgeries my parents decided to pull the plug but it was communicated to them that those were his wishes by my grandmother.

-Ravi Gupta

young says:

@Ravi Gupta- Sounds like you had a similar situation to me. Good thing your grandfather was able to tell your grandmother what he wanted…