It must have been around the time I was doing a lot of medical appointments here there and everywhere working to find relief from pretty debilitating back pain.
I noticed that I was being ask about my advance directive and if I had one on file.
I looked at the forms but I thought in reviewing - this just didn't seem right for me.
The source document for this long form was something I found through internet searching. The idea of a more conversational long form directive is not new but it was new to me.
I am sharing my first pass from October 4th, 2018.
I hope this sparks a process and discussion with your loved ones and your doctor.
I noticed that I was being ask about my advance directive and if I had one on file.
I looked at the forms but I thought in reviewing - this just didn't seem right for me.
The source document for this long form was something I found through internet searching. The idea of a more conversational long form directive is not new but it was new to me.
I am sharing my first pass from October 4th, 2018.
I hope this sparks a process and discussion with your loved ones and your doctor.
Supplement to Advance Healthcare Directive for Summer Short – dated 10/4/2018
Types of illnesses where this advance directive would apply whether I am terminal or not terminal.
I can never list every type of disease that might make me begin to lose my mental capacity, but the list might include, but not be limited to all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into effect. And I don’t have to be terminal.
The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.
What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)
To make meaningful connections with those around me.
To make a difference in the world.
To be able to communicate with those I love.
To have some independence.
To be able to give love, not just receive people’s kindness.
To not be a burden on my family/friends – financially, emotionally or physically.
To have a good death as defined by me (see below).
What conditions would I find reprehensible to live with long term?
(Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)
I am a fighter and wish to be given the chance to fight.
I have much to live for and in 7 lifetimes I could not check off all I wish to do and experience. But when the fight is done I wish to have a good death (see below) if possible.
All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.
This list of “Conditions I would not want to live with” includes but is not limited to:
Not recognizing my loved ones.
Not being able to communicate by voice, computer or sign language.
Wandering around aimlessly.
Suffering that isn’t necessarily pain related.
Significant pain that cannot be controlled.
Significant pain that requires so much medicine that I am sleeping all the time.
Treatment that fundamentally changes my personality and values
A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.
I am fine with being in a facility if it is the best way to manage my condition for my family and loved ones, but I do not wish to be in a long term facility with cognitive impairment which results in any of the above referenced conditions.
CPR, ventilator and feeding tube conversation.
My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.
I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.
If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. To the Doctor, please ask yourself the surprise question: Would I be surprised if Summer died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.
Reassurances for the decision maker
You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can.
I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Long term caregiving sucks. And I love my decision makers and alternates too much to impose such a burden on them with little or no benefit.
(Hal and Luke et all, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)
For you Doctor (hopefully Dr. Rai), your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts.
What is a good death in my opinion?
I would prefer to die at home, but I realize that sometimes, a person needs to die somewhere else, so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should defer to my decision maker for access to me, but I am not opposed to long lost visits. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes.
I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends.
FINAL THOUGHTS
To me the meaning of life is in making and maintaining connections.
When I am unable or unwilling, I would like to be done. I have seen cases of major personality changes due to severe trauma, in these cases no medical efforts should be made to prolong a life where “I” am no longer present.
I am not attached to most anything once my brain capacity is compromised. I believe there is no valor in watching a loved one suffer nor in needless suffering. If the fight is done it is done. I want my decision makers and loved ones to do what is best for them to move through my death as they wish. I do not want to be a burden. I do not want 1000x the dollars spent in the last weeks of my life, I do not want to take up space without providing contribution.
I’ve done my best and I trust my decision makers as appointed.
Summer Short ________________________________
Date: 10/4/18
