A reality of our healthcare system is that it’s really good at keeping people alive way past the point that they’re aware of being alive.
As a result, our parents stand a good chance of ending up in either a healthcare crisis or end-of-life situation where they can’t speak for themselves or make the big decisions that will determine the course of their treatment.
That means YOU are the person who will likely have to make these very hard decisions on their behalf. No pressure, right?
Clearly, this is a LOT of pressure. So, the question is: How do you get ready? You may have already heard about things like advance directives, living wills, doctor’s orders, power of attorney, healthcare proxy, and on and on. All the things that people SHOULD do to prepare for advanced illness and end-of-life.
The problem is it’s all really intimidating and more than a little bit overwhelming.
But, it’s also extremely important. Why? Because every single person I’ve talked to, who’s been through this with a parent has some form of post-traumatic stress disorder from the ordeal. And, being caught by surprise can compound what is already a hard and chaotic time.
Admittedly, so much of this is out of your control. But, in the interest of your future mental health, let’s talk about some of the things that ARE under your control – things you can do that will prepare you to make hard decisions on behalf of your parent when the time comes.
Know What Your Parent Wants (as much as possible)
Talking to your mom and dad about advanced illness and death is like talking to your teenager about sex. It’s not easy and it’s not one conversation!
Just like you wouldn’t hand your preteen a book about sex and walk away, you don’t hand your parents some forms and then file them away. A living will – the document that specifies what they’d want you to do in a variety of advanced illness/end-of-life situations – will NOT be that useful if you don’t bring it to life through talking.
Just like when talking to teens about sex, you’re not going to get very far if you sit your parents down for a BIG TALK. Chances are they’ll feel the same way your teen does – put on the spot and defensive with an added touch of “hey kid – don’t forget that I changed YOUR diapers.”
What’s needed here is a prop! Something that you can point to as a place to start. There are many books and organizers like The LastingMatters™ Organizer and this one that will help you and your parents organize, plan for and talk about their intentions.
Get Physician Advice About What Your Parent Wants
Having your parent talk to a doctor can really help sort out the kinds of decisions they can make now and what those decisions will mean later. Here’s a guide from MyDirectives.com that will help with that conversation.
A doctor can also help your parent complete a living will by explaining all the choices and helping them to make informed decisions. The doctor can also guide you and your parents through situations that might not be spelled out in a living will but may come up later and require a decision.
The challenge will be getting a doctor to spend the time necessary to have this conversation. The key is to be prepared for the conversation and be persistent!
Get Legal Permission to Make Healthcare Decisions for Your Parents
In addition to having these conversations with each other and with a doctor, one of the most important things you can do is to make sure your parents have designated the person who will be making healthcare decisions on their behalf.
This is called a “health care proxy” or durable “power of attorney” for health care (not to be confused with a financial power of attorney – which, by the way, you’ll also need).
To do this, get in touch with a lawyer and then make sure there’s a copy of the legal document , in your parent’s medical record and that it’s easily accessible in his or her house. Also, you should have a copy in your possession and/or, of course, the family member who’s going to actually be making decisions.
If you don’t already have a lawyer, you can check out the National Academy of Elder Law Attorneys (NAELA) for a directory of elder law attorneys in your parents’ area.
Document What Your Parent Wants
While you’re having these conversations with your parents, you may want to record them with your phone or at least jot down some notes when you’re done. Even though these are not official legal documents, they could end up being an incredibly helpful reference point when you’re in a crisis trying to remember everything.
In addition to informal documents, you’ll have a much easier time enforcing your parents’ wishes if they have the legal document called a “living will,” mentioned earlier. A lawyer and/or doctor can also help you with this. The key here is that it should be part of the larger “advance directives” package, which also includes the health care proxy, the will, and the financial power of attorney.
As with the health care proxy document, you’ll want to have the living will available to everyone affected and also to have a copy in the medical record, if possible.
Get “Medical Orders” if Your Parents Have Serious Advanced Illness
If your parents have a serious advanced illness or are already at the end of life, they may NOT want medical personnel to perform extraordinary life-saving treatments.
And, while this desire is expressed in the living will, you’ll still need “standing medical orders” from a physician to ensure that these wishes are honored by all of the medical personnel who may come into contact with your parent – especially during an emergency.
The best place to go for information about the physician orders for life sustaining treatment (POLST) is your parent’s doctor. But, I also highly recommend you go to the POLST website to get additional information.
Also, it will be especially important to have the POLST posted in a place where emergency personnel or facility personnel can see it.
Know That It’s Going to be Hard
Congratulations for reading this entire blog. This isn’t easy stuff to contemplate and absorb. Nothing in modern life really gets us ready for the experience of death.
At the end of it, someone you love is changing and moving on – this is a huge deal and sadly there’s no way to really prepare for it. The best you can do is to try and keep chaos to a minimum and to reassure yourself as much as possible that you’ve fulfilled their wishes.
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