Thursday, June 12, 2014

Quality of Life - I want to scream - I just want to breath!

Quality of Life.

I wanted to tell you more about the Advance Planning visit.  First you will have to pay your regular insurance deductible when you make this visit with the nurse, but in my opinion it is worth your while.  The oncology office provide you with a file of information that you really should read through before the time and take the time to  discuss it thoroughly with your spouse.  The first paper I had to complete was about: “patient Values and Goals for Healthcare”  really its all about when you get to a stage where you close to dying or simply unable to make good decisions for your self because of your cancer condition. 
The questions went like this
How valuable is it to me…
Have freedom of pain, even if it takes strong medication…
Be able to sleep well and wake up feeling rested…
Be able express my sexuality to my partner in a way that is pleasing to me..
Be able to move about freely…
Know that I am not a burden…
Choose who will make medical decisions for me…
Choose where my medical care occurs when nearing end of life…
Have nutritional intake, even if I am unable to chew…
Be able to get deep breaths, even if I am required help from a breathing machine…
Be told by my physician when I am dying…

I had to rate on this paper how valuable each of these events is to me.    Then the next questionnaire that is a three page form called “Out-of Hospital-Do-Not Resuscitate”.  MM!!  

 I decided to draw a big x over this , I want to live and at least be resuscitated twice.  Then the nurse said most people that are resuscitated collapse within the next three weeks.  Well I just don’t care I want to live.  It is then that we went into the discussion of “Quality of Life” Just being alive is not enough life is about quality of life.  This is a difficult conversation for me, I want to live no matter what!  It is like I want to scream it out to the whole world I want to live.  I am sure I told that to Katie the nurse that really was so patiently walking me through this paperwork.  Then cam the form called  “medical Power of Attorney” – this form was ultimately important in my case since Arthur my domestic partner and I are divorced even though we know had being working on restoring our relationship for the past 18 months.   

We went ahead and completed the disclosure statement for Medical Power of Attorney advance directives.  We left a copy with the doctor and Arthur took the original.  I did name my son and daughter (adult) as alternative agents.  On limitations on decision making authority it excluded commitment to mental institution, psycho surgery and convulsive therapy.  You may also limit the power of attorney to a specific time period.  The next form is called “Living Will Directive to Physicians and Family or Surrogates”  I originally wrote in here that I want to be kept alive in a terminal condition for at least 6 months.  Then the nurse gave me the quality of life speech again and explained the statistical number of people that recover and that there is hardly any and if they do what will the quality of life be.  Then I chose to be kept alive in this irreversible condition using available life sustaining treatment for six months.   Again the nurse gave me the quality of life speech with all the statistical numbers.   Again I said I don’t think I am going to die and I want to live.  After a 3 hour conversation I decided that quality of life is properly what one look for today not just “life”.  So I changed my directive to be kept alive only for 3 weeks and if after 3 week if there is no medical evidence that I am responding then medical care can be withdrawn.

Proverbs 4:7 - Wisdom [is] the principal thing; [therefore] get wisdom: and with all thy getting get understanding.

James 1:5 - If any of you lack wisdom, let him ask of God, that giveth to all [men] liberally, and upbraideth not; and it shall be given him.

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