End of Life Planning

Mother’s Day


My mom suffers from dementia. Yesterday I walked into her room in the personal care home to find her in tears because she couldn’t find her family. She didn’t mean me though. She wanted her mommy and her daddy and her brother. She wanted to go home. I held her and rocked her.
Today I’ll bring her over for dinner. All her grandsons will be here but she won’t know their names. She will feel the emotional connection to us. She will enjoy the party. But it’s so hard to see the woman in front of us as the strong, proud, immaculate, intelligent woman she was. We’ve lost our mother and grandmother. 
All decisions about my mom’s care are now in my hands. She no longer has the quality of life that she would have chosen. Along with the grief of losing my mother one step at a time, comes the fear that this could be my future.
 

No Decision About Me Without Me:
A Health Care Directive


My mother no longer has a quality of life that she would have chosen. The decisions about her care now fall to me. End of life care decisions are difficult and often controversial. The recent case of Susan Griffiths, a 72-year-old Winnipeg woman who chose to end her life in Switzerland, further motivated me to complete my Health Care Directive.
The WRHA Advance Care Planning Workbook was an excellent starting point. It did not however address one question. Can I refuse or discontinue medications that are keeping me alive? The answer is yes. So I wrote Part 1 of my directive:
 

If I lose my quality of life, I do not wish to prolong my life with medical interventions of any kind including medication. The only acceptable interventions are those which would give me comfort and pain control. I do not want feeding tubes, CPR, or ventilators. I choose to discontinue all medications that are not strictly for pain control.

Defining quality of life was a much tougher task. There are many factors to consider so I created this scale to use when I discuss my wishes with my family and my doctor.


Quality of Life    Loss of Quality
 Pain  I am comfortable most of the
 time.
 I am in pain most of the time.
 Feeding  I am able to feed myself.   I need help to feed myself.
 
I require a feeding tube. 
 Hydration  I am able to drink on my own.   I need fluids by intravenous.
 Hygiene  I can wash myself.
 I brush my teeth.
 I toilet myself.
 I need help to wash myself.
 I need help to my teeth.
 I am incontinent.
 Mobility  I can walk on my own.
 I can participate in physical
 activity.
 I need a walker or a wheelchair.
 Intelligence  I have my memory, my ability
  to read, write and converse.
 I am losing or have lost my
 memory, my ability to read, write
 and converse. 
 Independence  I can manage my financial
 affairs.
 I need help to manage my
 financial affairs.
 I need help to take care of my
 home and cook my meals.
 Happiness  Most days I am happy.
 I have interests.
 I socialize with friends and
 family.
 I am depressed, lonely, anxious,
 bored or afraid.
 I have few interests.
 I no longer recognize family and
 friends.

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