April 16th was National Healthcare Decisions Day, so it seems right and proper for me to remind you of the importance of having an advanced directive (AD). An AD outlines what your wishes would be if you were seriously ill and could not let healthcare providers know about your preferences for care.
If you are 100% confident that your loved ones know exactly what you would want, and will be sure your wishes (not their wishes) are carried out, go to bed tonight and rest easy. If you are not, best to complete an AD. On a regular basis I encounter families who say “I know she wouldn’t want this but I just can’t give up on her” or “... "I have to give him every chance to get better”... and decisions are made. If in either of these cases just described, there is an AD in place that outlines what you want, we are obligated to follow that. No matter what your family or designated decision maker says.
Here’s the deal though. Make it clear what you want. Outline your minimally acceptable quality of life. Things like this:
I must be able to recognize my loved ones and communicate with them.
I must be able to feed myself.
It is not uncommon to see "I must be able to wipe my own butt".
Spell out what level of disability you are, and are not, ok with.
Specify if you would be ok with a feeding tube and a tracheostomy. Google those things to see what they look like to be sure. If you have to have them permanently is that ok with you?
If you have to be cared for in a nursing home are you ok with that or must you be able to completely care for yourself to consider life worth living?
How long are you willing to remain on a breathing machine/ventilator before you want to focus on comfort as your top priority? FYI - if it’s longer than 10 -14 days you are going to need a tracheostomy.
If your kidneys are shutting down are you willing to be on dialysis? What if it’s going to be permanent? Are you ok with going 3 days a week for 4 hours to do that? Again, google that to see what it entails.
You don’t need a fancy document for this. Write it out and go over it with your physician/NP/PA. Ask them to place it in your medical record. Take a copy with you the next time you go to the hospital so they can scan it into your electronic medical record. You can go to mydirectives.com and do all of this online and then send it to your doctor and your family members. That is how I did mine. They remind you every 6 months to review it and be sure your wishes haven’t changed.
Finally, talk about this stuff with your family. If there are specific things you think they need to know to know, tell them. Remind them about it regularly. For example, last week when I was working on top of a 6 foot rock wall out back I quizzed Chris with specific scenarios... “if I tumble off this wall and you think I am dead but aren’t sure, and I look comfortable what should you do?” To which he replied “wait at least 15 minutes to be sure you are actually dead and then call the ambulance”. Which is exactly the right answer!
Next week I am going to tell you about another document to think about having in your home, if you, like me, understand that your family might need some help from emergency medical services, but you do NOT want attempts made at resuscitation. Did you know they are obligated to attempt to revive you if someone calls them? UNLESS you have a specific form that is signed by a physician.
I have an AD, will be interested in the next form.
Posted by: jacki long | 04/17/2019 at 10:13 PM
THANK YOU Carol for such an important reminder. Being an RN I know how important it is to have a written directive. I know I did this years ago but it is worth reviewing it every now and then. I have a physical coming up and will update my forms accordingly. The work you do is so important and I appreciate these reminders.
Emie
Posted by: Emie | 04/18/2019 at 02:50 AM
An incredibly helpful entry!!! I am in the challenging process of making these incredibly difficult decisions, and waaaaaay too many of the directions assume knowledge of technical/legal terms/concepts. A printed copy is ready for my portfolio!!!!
Posted by: Sharon Walworth | 04/18/2019 at 06:59 AM
Thank you so much for this Carol. Our attorney reminded us that our old AD forms are out of date and since my husband was just diagnosed
with esophagul cancer this is super time sensitive. Yes, I too look forward to your second document.
Hugs to you Ms CC nurse!
Posted by: Maureen | 04/19/2019 at 01:44 PM
Maureen, I will be keeping you and your husband in my thoughts as you navigate through this new finding of cancer.
Posted by: Carol | 04/21/2019 at 03:51 PM
Sharon: glad to be helpful in any way I can.
Posted by: Carol | 04/21/2019 at 03:53 PM
Emie: last time I had my yearly visit with my primary care doctor I was sure to talk to her in specific terms about my wishes. I will continue to do so each year.
Posted by: Carol | 04/21/2019 at 03:54 PM