Health | Planning |Life Lessons
Who’s Your Advocate?
So much has changed since the arrival of the Covid-19 virus.
Everything changed quickly. One week everything was normal and the next week schools were closed and many were either working from home or temporarily laid off.
Unless you’re an essential service worker, you’re likely staying at home as much as you can.
Our rare forays into the world involve a complicated set of steps designed to keep us from touching any surface that might be contaminate by the virus.
We aren’t sure exactly what works or doesn’t work so we do what we can with what we have.
We are learning to smile with our eyes, as more people have taken to wearing masks.
Social distancing and quarantines have made it impossible to visit the elderly in care homes or people in the hospital.
Friends and family members are dying. Some are dying without their loved ones by their side.
Who is your Advocate?
It’s always been important to have an advocate when you enter the medical system. The advocate can act as your voice and communicate your end of life wishes to the medical team.
It’s essential to tell them what you want ahead of time.
When it comes time to refuse certain treatments or procedures that we would refuse if we could ourselves, who will be the one to speak for you?
Making an End of Life Plan is now a reality.
I understand this is a tricky topic. It’s difficult to think about. This isn’t something that comes up in day to day conversation, unless you own a mortuary or sell life insurance.
It’s not a casual topic to bring up over a coffee with friends.
Maybe it should be.
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It all started when my mother asked me to attend a meeting. In our province, there is a program called ‘Advanced Care Planning’. It’s intended to start a conversation between seniors and their adult children or their doctors.
The program is supposed to help you make a plan that says what you are willing to accept when you are ill or injured and can’t make decisions for yourself.
Where will you draw the line.
We arrived at the library on a Tuesday night, and sat near the back of the room. There were a lot of people already there; many were with a friend or younger relative. When two young women stood up at the front of the room, the chatter quieted down.
They started off gently, asking about things like beliefs, wishes and values.
This gentle approach was an attempt to sneak up on harder questions like ‘do you want oxygen’, or ‘what kinds of supports are you willing accept for a longer life’?
I thought it was pretty clear cut. Yes, I would be OK with oxygen if I was having trouble breathing but no, I wouldn’t want a tracheotomy. That kind of thing.
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Then one of the ladies told a story about a friend of hers.
It was another nurse, knowledgeable in all things medical. She had made a plan and her friends were aware of it. She said she would never want to be on a ventilator more than 10 days. She’d chosen 10 days because she knew it was policy to do a trach on a patient after that. She didn’t want a permanent breathing tube.
One day at work, she passed out. They rushed to her side and did everything to stabilize her. Because she was unable to breathe on her own, they intubated her as they took care of the medical problem. When she was stabilized, they tried to take the tube out, but every time they started to do it, she would go into respiratory distress and they couldn’t do it.
Every day, they’d try again, without any luck. It started getting closer to her 10 day limit.
The problem was a fluke thing, something to do with her heart, and she had been lucky, but now there was another problem. She was approaching the moment where her wishes were for the team to remove the ventilator, even though she wasn’t quite ready to tolerate it.
The hospital was required to follow the plan, even though in this situation they knew their friend wouldn’t want them to follow it as it would likely end her life.
So, the doctor and the friend talked about it, and agreed to loosen the rules for a few days. That was just enough time for her friend. The next day she was able to get off the ventilator and she recovered completely.
Hmm, I mused. Maybe it wasn’t so clear cut after all.
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We left the meeting with the intention that my mother would fill out her wishes and when we met again, we could finalize it and send a copy to her doctor. She couldn’t do it.
That was two years ago.
For two years, I gently reminded her to fill out the forms and there was always an excuse. I kept telling her I didn’t want to have the conversation in an emergency room. It was better to sort it out ahead of time.
At one point she lost all of the documents and we had to replace them. The situation was frustrating and it was causing a rift between us.
She wanted to have a plan but in her words “I just didn’t realize how hard it was.”
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Well, I do now.
Last week I went into AFIB while I was sitting at my computer. At rest, they called it. Apparently it was a bit unusual. Most people go into afib when they are exercising or stressing themselves out.
After a couple of uncomfortable hours, I went to emergency. After hooking me up to a heart monitor and taking blood, I spoke with the doctor on call.
The options were to cardio-vert me or send me home.
A cardio-version is when they use the paddles to give you an electric shock. It’s intended to put your heart back into a normal rhythm.
Yup, just like in the movies. Bu-boom.
When the doctor discovered I wasn’t on a blood thinner, he recommended against it.
“I wouldn’t do it if it was me,” he said. “the fibrillation has probably created some blood clots in your heart and the shock might break them loose. You could have a stroke and lose all your function.”
Great, I thought. I could die right here. I could end up in a coma, and my spouse would be the one having to make those hard decisions.
Right there, we had the end of life conversation. The one I said I never wanted to have with anyone in an emergency room.
The one that my mom was reluctant to have.
Now that I’m home again, I’ve decided it might be time to take a closer look.
What’s important to me if I get really sick?
- I don’t want to be kept on a machine if there’s no hope that I’ll get better and go home.
Most of the plan is straightforward:
-Who is your person? Who do you want to make decisions for you.
-List their contact information.
-List the things you won’t accept. This is the one where it gets tricky.
As far as I can see, there are three main areas to look at.
Remember, these answers are for when I’m not able to make my own decisions.
I figure that I’ll be in a coma, or paralyzed and can’t communicate.
My personal decision is this:
For nourishment, I’m ok with an IV saline or a fluid diet, but a permanent feeding tube. Nope.
For breathing, I’m ok with a tube to help me breathe during surgery or when I’m in some kind of respiratory distress, but a tracheotomy to put a permanent breathing tube in. Nope.
If I’m dying after a long illness and it’s not reversible, let me go. DNR.
Now, everyone else will have different choices and I accept and respect that. The thing is letting your person know what you want.
If they don’t know, they’ll likely choose what they’d choose for themselves.
And you might not be happy with that.
(*PS — “Mom, if you don’t decide, this is what I’ll decide for you.”)
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