Thanks for writing about this very important subject. I totally agree with your statement:
"Many workers in the health care world don’t seem to realize that the hardest question on the form is not whether or not we want to be on a ventilator (no thanks) but who will speak for us in a pinch."
I remember being asked for my emergency contact at the ER and I couldn't come up with a name because my only family in America--my elderly mom-- lives a few hours away and is limited in her ability to understand English. I have no one. It made me sad to struggle with that question.
I had those forms for. ev. er. before I could fill them out. I knew what I wanted, but like you, no family (outside of my 95 year old ma with dementia. My demented ma). My closest friend had already stated that she'd keep me alive even if I was "just eyeballs on a plate," which was so not what I wanted. Finding the the first name was hard, the additional names harder, the phone calls asking if they would do it, finding someone younger than myself, likely to still be around when I need that service.
I had a person, we were each other's persons and knew without having to speak what would be the next right move. My person died over ten years ago and I've had to cobble together who can, who would, who will be here, who is comfortable.
Because I care for Ma, I also had to set up a trust and instructions for who gets her next if I predecease her.
It's done, the paperwork is complete and in addition, I have a notebook titled "I'm Dead, Now It's Your Problem," or something like that, that has spaces to elaborate, answer questions, list bank accounts and so on, that will be in my home for whoever finds what's left of my cold, dead, half eaten by cats body if it comes to that.
I'm healthy, thank goodness, but you know, not a kid anymore. I always thought dying would be easy, or at the very least, involve less paperwork.
File under things I never thought I'd need to know
Jodi, this is a great comment. Not only do you offer useful information, but you made me laugh, despite the subject matter. You're right. You do need a POLST--physician's orders for life sustaining treatment--form posted prominently so EMTs and others can see it. Here in Oregon, they're bright pink. Just one page, it states what you do and do not want done in a health crisis. We will figure our way through this.
I don't have an advance directive. The last couple of times I've had procedures, the consent form states that they will not honor advance directives.
Even if there are situations where they would be honored, the main problem is that I have no idea what I will want. I used to think I would want everything possible done to keep me alive. Now, not so much. I don't know and I can't foresee every eventuality, to balance quality of life against just letting go. What if I say "Keep me alive" and when the time comes, I'm actually in agony and wanting the plug pulled? What if I say "Keep me at home" and it turns out a facility would be better? I've told my husband, "Just do your best with whatever information you'll have at the time, because I have no freaking idea what I might want or what will be best, and have no guilt over whatever you do."
Normally I am very into control and planning, but in this area I guess I'm not!
Well said, Jenn. You are so lucky to have your husband. I am surprised you were told they wouldn’t honor your advance directive. That doesn’t sound right. Let’s stay healthy.
I've done it! I filled out the form, something that I have been putting off, but your article gave me both the incentive and the courage to face this. Thank you for your beautiful thoughts and putting these into words which I relate to
Thanks for writing about this very important subject. I totally agree with your statement:
"Many workers in the health care world don’t seem to realize that the hardest question on the form is not whether or not we want to be on a ventilator (no thanks) but who will speak for us in a pinch."
I remember being asked for my emergency contact at the ER and I couldn't come up with a name because my only family in America--my elderly mom-- lives a few hours away and is limited in her ability to understand English. I have no one. It made me sad to struggle with that question.
It makes me very sad, too. We shouldn't have to deal with this, but we do.
I had those forms for. ev. er. before I could fill them out. I knew what I wanted, but like you, no family (outside of my 95 year old ma with dementia. My demented ma). My closest friend had already stated that she'd keep me alive even if I was "just eyeballs on a plate," which was so not what I wanted. Finding the the first name was hard, the additional names harder, the phone calls asking if they would do it, finding someone younger than myself, likely to still be around when I need that service.
I had a person, we were each other's persons and knew without having to speak what would be the next right move. My person died over ten years ago and I've had to cobble together who can, who would, who will be here, who is comfortable.
Because I care for Ma, I also had to set up a trust and instructions for who gets her next if I predecease her.
It's done, the paperwork is complete and in addition, I have a notebook titled "I'm Dead, Now It's Your Problem," or something like that, that has spaces to elaborate, answer questions, list bank accounts and so on, that will be in my home for whoever finds what's left of my cold, dead, half eaten by cats body if it comes to that.
I'm healthy, thank goodness, but you know, not a kid anymore. I always thought dying would be easy, or at the very least, involve less paperwork.
File under things I never thought I'd need to know
** important note: EMTs do NOT respect DNRs and are not obligated to. It is their job to keep you alive. When the time comes, if that's your wish, you want to have a MOLST or POLST. Those are binding: https://www.health.ny.gov/professionals/patients/patient_rights/molst/
Jodi, this is a great comment. Not only do you offer useful information, but you made me laugh, despite the subject matter. You're right. You do need a POLST--physician's orders for life sustaining treatment--form posted prominently so EMTs and others can see it. Here in Oregon, they're bright pink. Just one page, it states what you do and do not want done in a health crisis. We will figure our way through this.
Oh babes, we gotta laugh. We have to.
I don't have an advance directive. The last couple of times I've had procedures, the consent form states that they will not honor advance directives.
Even if there are situations where they would be honored, the main problem is that I have no idea what I will want. I used to think I would want everything possible done to keep me alive. Now, not so much. I don't know and I can't foresee every eventuality, to balance quality of life against just letting go. What if I say "Keep me alive" and when the time comes, I'm actually in agony and wanting the plug pulled? What if I say "Keep me at home" and it turns out a facility would be better? I've told my husband, "Just do your best with whatever information you'll have at the time, because I have no freaking idea what I might want or what will be best, and have no guilt over whatever you do."
Normally I am very into control and planning, but in this area I guess I'm not!
Well said, Jenn. You are so lucky to have your husband. I am surprised you were told they wouldn’t honor your advance directive. That doesn’t sound right. Let’s stay healthy.
I've done it! I filled out the form, something that I have been putting off, but your article gave me both the incentive and the courage to face this. Thank you for your beautiful thoughts and putting these into words which I relate to
Well done!