By Kate Dekoski
On a recent episode of Spoonie Space we talked about advocating for yourself in a medical situation and I brought up a topic no one really likes to think about or talk about, but it’s something we should all be talking with our families about spoonie or non spoonie.
My Experience with my Mom
When I was 14 my mom was diagnosed with an aggressive form of brain cancer and she went on to have a seizure and stop breathing. The hospital had to put her on a respirator so she could breath. She never wanted that but because she never filled out the paper work for a DNR (Do Not Resuscitate) order we watched her go through another year or so of a fast decline. It was hard to watch. Yes, I do love my mom and I miss her horribly, but when you see someone you love having seizures almost daily and who is now blind and they don’t know you anymore you just want their pain to end.
My Experience as a Patient
Being a chronically ill child having numerous brain surgeries and tests is difficult on its own, but it’s easy because mom and dad have the final say in your care. Once you become an adult if you aren’t able to consent to surgery or whatever yes the hospital will treat you but they will also call everyone and their brother to get consent to do so.
There was an experience not too long ago where after having fluid taken off my shunt I started to exhibit signs of high intracranial pressure. The hospital staff had me sign off on surgery even though it was clear that I was totally out of it in pain. My aunt who is a nurse was there and extremely concerned. Within a few days we had papers signed that made my Dad my first healthcare proxy and my aunt my number 2.
School: Hospice Experience
My time as a hospice major has taught me a lot but I think right now the most important thing I can pass on to you is what I have learned about Living wills and all that other stuff. It is incredibly important that you have these talks with your family about what you want if you can’t speak for yourself.
Place yourself in their shoes or better yet image something has happened to one of them. What would they want? To be put on life support? To be left to die in peace? Or anything in between. When talking to your family it might be helpful to look at the “FIVE WISHES” website and PDF https://agingwithdignity.org/five-wishes/about-five-wishes
While living wills are not legally binding in all states, most will uphold the Five Wishes Document or you can use it as a template to write your advanced directives or attach it to your advanced directives. While living wills are more limited then advance directives like I said above most states do accept the Five Wishes because it gives more power and more direction then standard living wills. For instance unlike standard living wills the FIVE WISHES allows you to name a couple health care proxies.
This form tells your health care agent, whomever you chose, what you want to do if something happens and you can’t speak for yourself. It is a legally binding document and different states have different forms that are used.
Durable Power of Attorney
With Durable Power of Attorney you are choosing who you want to make medical decisions if something happens to you and you cannot speak for yourself. It is important here as with the Advanced Directives and “Five Wishes” that you chose someone whom you trust to act in your best interest. I know of wives who have chosen someone other than their husband because they know he wouldn’t be able to “pull the plug” I know children who have chosen people other than parent’s for the same reason.
The Nitty Gritty
With all the above documents it is important to review them occasionally and update as needed or as your preferences for care change.
You may be still wondering why I’m talking to you about all this, why a 26 year old is so concerned about other people filling out papers and talking to their families about events that may or may not ever happen. The answer is with our population (spoonie nation) and our “normie” friends and relatives we don’t know what the future holds and with all the time we spend at the doctors and/or in the hospital it is important to talk about these issues. One day you could go in for surgery and an hour in the surgeon goes to your family and says there has been a complication, he asks what your family wants to do, what you would want. Your significant other doesn’t know. Scary thought, right? I know it is for me.
This sick little girl has been thinking about this stuff for a long time and how important it is. Even if you don’t fill out any of the paperwork, please just sit down with your family and have the talk. What do you want done if you are unconscious? Do you want music played, prayers prayed, visitors, or to be alone. Do you want people to touch you, massage you with lotion or keep their paws off? It’s a lot to think about and a lot to take it but it is all important and may put loved ones at ease to know what you want when the time comes.