Jennie Lucio talks about the importance of setting up legal protections for patients and their families based on her own harrowing experiences.
When you get admitted to the hospital one of the first people you meet is the Registrar. They are the ones who either meet you at the front window or go to your room in the ER to gather your name, insurance information and have you sign a lot of paperwork.
Most of the time they are understanding. They know you don’t feel well so to save you time they just highlight the pages you need to sign. Innocent enough. They tell you what you’re signing of course but for them it’s robotic. They do this all the time.
You however are in the ER having what might be one of the worst days of your life so, you just scribble your signature while not even paying attention to what you’re signing.
That’s not good. Here’s why.
One of the pages you sign, and it’s usually highlighted (trust me, I’ve been to the ER a lot), states that you DO NOT have an advanced directive, medical power of attorney or living will. By signing you are stating that you DO NOT have these items. That’s safe because most people don’t have them. You’re feeling terrible and so you sign whatever they put in front of you to make them go away.
These are the biggest issues we may deal with in our lives. They’re worth your time to consider.
What you need to know is that when you sign saying you don’t have an advanced directive, or someone to be your medical power of attorney, or a living will, if you start to crash or if you die no one will know your wishes or choices. What if they can’t reach your spouse of parent?
Your family, your possessions, even your body might all be held up in something called probate court. Where a judge decides what happens to your possessions instead of you.
Hospitals will do everything in their power to save your life. This includes CPR or putting you on life support until your next of kin can be contacted to be your advocate.
No one wants the responsibility of decided the degree to which their loved one wants their life preserved. Who wants to choose between having a loved one live or die, keep them on life support or remove it and go on palliative care until they die?
The person who ends up deciding will no-doubt be conflicted. But they will also be guilt-ridden for the rest of their lives, no matter what the outcome. It’s a terrible burden. With an advanced directive or living will you take that burden off of your loved ones.
I am a member of the chronic illness community. We see tragedy all the time. Friends die. I’ve seen it so many times that it almost feels normal. That may sound harsh but that is the sad reality.
Even I, knowing better, often think “this will not happen to me”. I have been hospitalized and sick many times, but I have bounced back from each one. I developed a false confidence. Then I remember – I only have to be wrong once.
I remember the first time I made a will and advanced directive.
I was in my early 20s, when I first got really sick. My doctor came in and sat on my hospital bed and had a heart to heart with me. He explained my condition (Mitochondrial disease) and gently encouraged me to get my wishes in order. I was kind of in shock. When I woke up that morning, I didn’t think I would have to make my own end of life decisions. I was in my 20s! A mother to three children! Who would take care of them? At that time, I was single and I didn’t even have anyone to list as medical power of attorney.
I called a few friends and finally I was able to find one who overcame her shock and agreed to be my medical power of attorney and executer for my will. She thought those were things only middle-aged and elderly worried about. Yeah, me too.
My wishes were that anything in my name be sold and the money be split evenly into trusts for my three children. This way they would have the start of a nest egg or a college fund.
My medical wishes were that I do indeed want life saving measures, like CPR to be used. Continue my tube feedings and/or TPN and make sure everything is done so that I may recover. However, if I was in a position that required total life support (like a brain injury that required a ventilator) my wish was that I be kept on that support for one month. If after a month, if there was no sign of improvement then I would be taken off life support and what organs could be donated, be donated and the rest of my body would go to science in hopes of learning more about my illness and helping others.
Since then I got married, so naturally my wishes changed. My forms were modified to make my husband my medical power of attorney and executor of my will.
Because we had this important discussion and took these important steps, he is comfortable with my decisions and choices. That takes off a lot of worry and stress off everyone. I have the comfort knowing my wishes will be done and he has the comfort knowing that he will be doing what I want.
The choice to make a will and put in place an advanced directive that includes a medical power of attorney is something everyone should talk about. Because you just never know. One minute you could be fine and the next you could be in a life and death situation. Things happen. They do. All the time.
So, take the stress off your loved ones, and you, no matter how old you are, get an advanced directive, medical power of attorney and living will. There are many sites they help you online, for free. It doesn’t take long at all.
Thanks for reading.
EDITOR’S NOTE: another way to set up a Will, Advanced Directive or Power of Attorney is to become a member of Patients Rising. Members get a free year of LIFEPLAN by LEGALZOOM, a suite of legal services that includes Living Will, Last Will, Trusts, Power of Attorney and much more. Services everyone needs, but especially those living with chronic illness.
Jennifer Lucio is a mom and a wife from Texas, who has been struggling most of her life with mitochondrial disease. That rare disease triggered several other medical conditions including gastroparesis, chronic intestinal pseudo obstruction, Ehlers Danlos Syndrome, psoriatic arthritis and more. She no longer works, but when she did sh e was a Registered Nurse. Jennifer has gifted her words to our readers hoping to do as much good as possible.