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Saturday, February 11, 2012

February 10, 2011: What I Had for Dinner? A NAP!



About 6 PM today, I was still at work and my very sweet husband was HUNGRY. So he ventured to one of his very favorite places on the planet: HARDKNOX PIZZA.
His personal favorite is THE GRAZIANO. I think he would be perfectly happy eating it every day.
When we were in Italy for his 50th birthday bash, we had their thin crispy pizza for lunch every single day and there were no complaints from fiance-land!

So this made the making of dinner a non-issue. I had a bad day Friday. I usually don't allow circumstances to permeate my brain and allow for the "bad day" alternative. But sometimes that's just how it is.

Here's a favor you can do for your family and yourself and even your doctor ( although I don't know if that should be such a big concern.) PLEASE, let everyone know what you want done if something really bad happens to you. Write it down even. Give it someone you trust and someone else you trust besides them in case they get in a really bad situaion with you and cannot be your voice. WARNING. I AM ON THE SOAPBOX!

Please realize that your loved one will likely be TORTURED by trying to make decisions for you during what will likely be their own emotional upheaval. So please consider the following:

Most of the time when you cannot make your own decisions, the event that caused it will be something neurological--like a coma.

You could get into this shape because of many things such as:
(1) Trauma. For example, you might get in a car wreck, suffer a fall, or even have some random occurence like a tree limb falls onto you. If you are over the age of 1 and under the age of 45 the most likely thing is one of these events.

(2) Stroke.
There are two kinds: Ones that occur because of bleeding into your head called HEMORRHAGIC STROKES. Most, but not all of these, can be prevented by good control of high blood pressure.
The other kind is because you are not getting enough blood flow into your brain. Those are called ISCHEMIC STROKES.

It is a good idea for your own health and those of others to either memorize or take a look at a website periodically to remind yourself of the warning signs of stroke:

Sudden numbness or weakness of the face, arm or leg, especially on one side of the body

Sudden confusion, trouble speaking or understanding

Sudden trouble seeing in one or both eyes

Sudden trouble walking, dizziness, loss of balance or coordination

Sudden, severe headache with no known cause

If these things happen, act FAST, because often you or the person you care about CAN be treated and prevent temporary or permanent brain damage.

3. Sometimes, people cannot speak for themselves because they are on a ventilator. There are lots of reasons you could be on ventilator, some as simple as reversible conditions like pneumonia or bad effects from surgery and anesthesia. Most people do not have a conceptual problem with being on the ventilator TEMPORARILY. But some do. Especially people of advanced age realize that going on the ventilator is frequently a pre-morbid (very close to the time of death) event.

SPEAK OUT ABOUT WHAT YOU WANT. WRITE IT DOWN. If you leave it to your family to decide unaided, they might have problems with such a monumental decision. They might not agree amongst themselves, even if all any of them wants is to abide by your unknown wishes. Don't make them guess.


Here are some things to consider:

1. Some people of advanced age and /or with terminal illness or illness that produces a very poor quality of life may not want anything done. Not even IV fluids, much less ventilators, feeding, antibiotics and CPR. Sometimes, not even time in the hospital or doctor's office.

2. When you write your living will, consider these details:

a. Do you want every possible life saving intervention performed? Some people do and there isn't anything wrong with this decision if it is your preference. It's only wrong not to make that clear to your loved ones. They will suffer if you don't make it clear. And you might too. If you want your loved ones to DO EVERYTHING NO MATTER WHAT, tell them.

b. If you elect NOT to do every thing in every circumstance, many living wills are not specific enough. You will need to specify what you do and do not want done in a variety of circumstances.

Here are potential conditions for which individuals often elect NOT to "do everything."
1.TERMINAL CONDITIONS
A "terminal condition" is:

A condition caused by injury, disease or illness, from which there is no reasonable probability of recovery and which, without treatment, can be expected to cause death.

OR

A persistent vegetative state characterized by permanent and irreversible condition of unconsciousness, in which there is the absences of voluntary action or cognitive behavior of any kind; and an inability to communicate or interact purposefully with the environment.
NOTE:PERSISTENT VEGETATIVE STATE DIAGNOSIS REQUIRES AT LEAST 2-3 MONTHS TO DETERMINE. So if you only want to be discontinued from life preserving efforts in a vegetative state, EVERYTHING will need to be done for at least 2-3 months to determine if you are 'vegetative.' (By the way, I hate this term passionately as no matter what happens, you are a PERSON not a vegetable. Where did we come up with this awful term?) The reason I say 2-3 months is that there is some controversy about how long you must be unconscious before you should be considered irreversible. At three months, nearly everyone would agree that meaningful recovery is almost (but not quite) 0%.

2. An "end-stage condition" is a condition that is caused by injury, disease, or illness which has resulted in severe and permanent deterioration, indicated by incapacity and complete physical dependency, and for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective.



I think the area where families and friends have the hardest problem is with definition #1--no reasonable probability of recovery and which without treatment can be expected to cause death. People often ask us, "Is there any way this person could ever recover?" Well, in the history of medicine and the world and even my practice, people sometimes, in the long run do reasonably well and do have a meaningful existence, even when all the information we have medically available indicates that they are going to live in a state of dependency. Now, I have to say, most of the time, the overwhelming majority of it, when we look at the person, their neurological examination, and their brain scans, etc. and predict that they will NOT do well, we are CORRECT. We are not usually wrong. However, sometimes we are wrong. Remember, it is a prediction, not a gospel.

All that being said, if you should have something happen to you where you are highly unlikely to recover fully and you want everything done anyway, tell someone. Preferably, tell everyone you know. Please, please write it down. (Do you think I want you to write it down?)

If however, like most adult Americans (there are cultural differences also), if you knew that the chances you would recover and not be dependent were very small, please specify what if any of the below listed interventions you want performed and for what period of time:

Cardiopulmonary resuscitation (CPR) - If at point of death, using drugs and electric shock to keep the heart beating, artificial breathing.

Artificial nutrition and hydration (forced feeding and fluid through tubes in the veins, nose, or stomach).

Mechanical, drug, or chemical treatment by any means.

Mechanical breathing assistance (breathing by machine or ventilator use).

Chemotherapy (using drugs to fight cancer).

Invasive diagnostic tests (for example, using a flexible tube to look into the stomach)

Blood or blood products by transfusion.

Antibiotics (using drugs to fight infection).

Surgical procedures, major or minor

Pain medications

Wording is important. Terms such as "if there is medically a low probability I will recover and function independently"...most of the better living wills I have seen address all of these interventions independently by either checking a box yes or no or more detailed text. If you want your family to give you a week, a month or a year before "pulling the plugs," just say it. If you don't want to even entertain the possibility of receiving any of the above mentioned life preserving interventions, write it down! It never hurts to be more specific about what conditions are acceptable to you. For example, if you have a spinal cord injury and are quadriplegic and don't want to be kept alive, but might entertain waiting 2-3 months to see if you are functional after a head injury, but not if you had a stroke---be specific where you can.




Okay, I am getting off the soapbox now. But here is the message in three sentences:
1. Figure out what you want.
2. Tell all the important people in your life.
3. Write it down.

So after my horrible day at work--much of its angst generated by a family who for the last two weeks has had problems with disagreement about their loved ones wishes (he is an middle aged comatose man with lymphoma and prostate cancer on a ventilator with a head injury and not expected to have a meaningful recovery)--- I went home and went to bed at 7:30pm.

It was SO much better than a gourmet meal.

Sometimes, instead of eating dinner, get some sleep!

ENJOY!

2 comments:

  1. It's an odd thing for me to understand that you deal with life and death on a daily basis. It's a big burden. Thanks for taking it on.

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  2. Well, I don't think anyone ever thanked me for it before! Sometimes it is a real drag and depressing, but like most human experiences, it can be quite beautiful. I have learned alot from watching it happen.

    ReplyDelete