There is a lot of confusion on how to manage the end of life well. It is a difficult subject to talk about with your parents or children, so most of us just avoid it. Eventually we get sick and are stuck in the ICU, unable now to make our decision and everybody we love is suffering with us not knowing what to do and not knowing what we would have liked done.
Here are three simple questions to help you achieve more control on your life.
If you get ill and your life is being prolonged by means of medicines and treatments, and the level of your existence is meaningful to you, then it is wonderful. But if the treatments are keeping you alive but at a level lower than what you would consider meaningful, then it is only delaying the inevitable and in the process making your life more painful and increasing suffering for you, your family and friends.
Thus if we could all establish that minimum level of existence for ourselves, doctors and hospitals would know when aggressive treatments are warranted and when just keeping the sick person comfortable would be the best thing to do.
This can be accomplished by simply answering "the 3 Questions" to establish:
1- the minimum mental functional level ( mental awareness level) that is acceptable to us with the help of life prolonging treatments.
2- the minimum physical level acceptable with the help of life prolonging treatments
3- the life prolonging treatments that are acceptable to us, or not; or acceptable for a period of time to see if we can get to our minimum acceptable level of living.
Some examples of lower mental awareness levels:
1- you can recognize your loved ones AND communicate with them
2- you can recognize others, but cannot communicate
3- you may focus on things but have no recognition
4- you are barely aware
5- you are unconscious
6- you have dementia, so can talk but have no idea what you are saying and what is going on.
Let's say you decide to pick example #1 , then in your advance directive you would write, "I want my life prolonged by life prolonging treatments as long as I can recognize and communicate with my loved ones, but I do not want my life prolonged artificially by means of any medicines or machines or artificial nutrition or hydration if I cannot communicate"
Also discuss your feelings about different levels of dementia and acceptance oflife prolonging treatments.
Some examples of lower physical function levels:
1- you need assistance with walking, bathing and dressing.
2- you are mostly in bed but can go to bathroom with assistance
3- you are totally bedridden, but can still swallow and enjoy food
4- you are totally bedridden and unable to swallow.
Obviously, there can be many other permutations to these.
Let's say you pick number 3, then you would write in your advance directive. "I do not want my life prolonged by medicines, machines or artificial nutrition if I am totally bedridden. If I get sick, I do not want to be treated, but do give me any and all treatments to keep me comfortable"
3- The third question has to do with life prolonging treatments you may not ever want eg intubation and respirator, or CPR or dialysis or tube feedings etc.
OR you may be willing for extraordinary treatments for a short while, say a week or two to see if you can be rehabilitated to your lowest acceptable levels as you have established by answering questions 1 and 2.
So , you would write in your directive,"I am willing to try any treatments for a period of one week (or two or more if that is what you are willing to endure), but if I do not get to my acceptable levels as mentioned above, please stop and just keep me comfortable"
Now, if you were to either put these in writing or just have a clear conversation with your family and your physician, then when the time comes, you will be treated as you wish.
AND this will be the best gift you can give your loved ones, making your own decisions so they will not have the burden of making these hard decisions!
Creating a document:
All your wishes can be put in writing, signed and witnessed by two persons, not your power of attorney for healthcare.
This now is equivalent of an advance directive and to be followed in case you become ill. It does not need to be done in a lawyer's office.
Be sure to give a copy to your family, friends, doctors and lawyers.
Here are a couple of real examples from a couple of my patients ( names are changed for privacy and confidentiality reasons)
End of Life Wishes for Mrs JJ
1- I do not want my life prolonged by any means if I am unable to verbally communicate with my family even though I may be able to recognize them.
2- If I cannot get out of bed myself, please let me die in peace, do not extend my life by artificial medicines and machines.
3- Always make sure I am pain free and not suffering.
signed by JJ and witnessed by two not closely related
End of Life Wishes for CC
1- Do not artificially prolong my life if I cannot recognize my family AND communicate with them.
2- You may treat my illness if I am able to recognize my family AND communicate with them BUT DO NOT artificially prolong this state by means of dialysis , respirator or artificial nutrition and hydration for more than a week!
3- If I am totally bedridden, please Do NOT treat any illness, but keep me comfortable
4- Artificial treatments are only acceptable if I can be rehabilitated to my goal as mentioned in # 2 above.
5- I do not want to be a burden to my family.
6- I want to die at home
7- If any questions arise, please contact my physician Dr A.
Signed by CC and witnessed by two
You can see how this is a simple way to control your destiny.
CPR: ( Cardiopulmonary resuscitation)
If you were to have a cardiac arrest and your wishes were known, then you would be resuscitated if you could be treated to reach your established minimum levels of existence, otherwise you would be allowed to die in peace. Thus you would control how you live and die.
It would be very helpful to have these discussions with the help of your physician, nurse etc. to address any and all questions you may have.
Please remember, you can always change your mind so this is not etched in stone.
If you already have an advance directive, you could add the 3 wishes to it. This establishes how you want to live that is meaningful to you, when you have lost capacity to make decisions anymore.