White Paper –

The End Matters As a little girl, my mother was my rock.  When it became clear she was dying from cancer at the age of 70, I was in shock and disbelief.  I was in a fog jumping from task to task in her care that I did not take the time to accept the inevitable.  She was going to die, and there was nothing I could do to stop it. My father was the one who taught me, among other things, that in life, there is truly nothing to fear.  This is his story. In November of 2009, at the age of 79 my father had a major stroke.  Being an only child, the responsibility fell to me to figure out how to help care for him.  The stroke left him severely limited in mobility and language.  The doctor’s prognosis was to reside dad to a nursing home.  Lesson Number One  -- Truly understand what we are fighting for.  Knowing dad’s fighting spirit I buckled down to find any services that could help do what he wanted, to help him heal.  Dad willingly and eagerly buckled down and fought back.  After six weeks of intensive physio, speech, and occupational therapy, he was able to return home where he wanted to be.  Most of his mobility and a lot of his strength returned.  Living at home was dad’s only goal.  As he was limited with his ability to manage all aspects of living on his own, my focus shifted to figuring out what could be done to help him manage how he wanted to live, to preserve as much of his independence as possible.  We found a way to fill in the gaps.  The biggest challenge was his speech.  The once eloquent man had been silenced.  Or so I thought.  Determined, we found speech classes and dad worked to find his voice.  His once refined demeanor now became the demonstrative character and he was once again able to make himself understood. Still living alone, I became concerned he was alone too much.  I talked dad into staying with us on weekends and discussed putting together a schedule to keep him engaged in activities during the week.  He took part in activities from Tuesday to Friday and stayed with us on weekends.  As dad became a little weaker, he gradually let go of more and more of what he could do at home and we put into place more people to help him stay in his home. Lesson # Two – Level of treatment we will accept is a sliding scale.  In 2015, dad was rushed to the hospital in heart failure.  After an agonizing two months of watching him deteriorate in the hospital, the doctors decided a TAVI

was the appropriate course of action.  Dad would make a full recovery and return home to live on his own.  We were scheduled to have the procedure done when a Geriatric assessment of dad was completed.   The prognosis was shocking.  While I was led to believe we were on our way home, the most companionate, informative and honourable Geriatric doctor helped bring clarity to our circumstance.  Dr. Ellen took the time to outline dad’s level of health and the most probable outcome of the surgery.  It became clear that dad was not going to return home and there was an almost certain probability that he would not do very well after the operation. He would be left in a weakened state and we were clearly facing dad’s end of life.  Doctor Ellen took the time to help me understand our options and to begin to face the decisions I could make to help the end matter.  After a very frank discussion with my dad, he decided to go ahead with the operation.  The day after the surgery, while still in the ICU, dad sat up in his bed and in a very clear and strong voice looked at me and said: “No more.”  I knew exactly what he wanted me to understand.  His care was to be about quality.  In the end, against every other doctor’s prognosis, Dr. Ellen was correct.  Dad became weak, he was in pain and now he needed oxygen 24/7.  In true dad fashion, he rallied for a bit but he could not maintain the energy needed to improve.   Lesson #3  -- The line has been drawn.  What are we fighting for now? While the hospital washed their hands of us, Dr. Ellen jumped in to help.  She knew dad’s priorities in life.  He valued, above all, time with his grandchildren.   She guided me to a place that could take care of dad, near my children’s school.  Dr. Ellen stepped in and organized to have dad accepted into a caring retirement home.  She helped shift my thinking and guided me in what we were fighting for now.  Dad’s priorities; good food, family, and laughter.  So that is what we gave him.  No more treatments, no more unnecessary procedures, no weigh-ins, blood tests, or forced physio, no forced eating, and no blood transfusion.  We managed his pain and kept him as comfortable as we could.  Every day of dad’s life was filled with laughter, good food, friends, his beloved Andre and Emilie and the occasional glass of wine with me. Lesson # 4 -- Remember who you are making decisions for? When I was told that medically, dad should not be here and that he was hanging on for me, I was encouraged, if I could, to let him know it was ok to go, I would be ok. Hard as it was, on Tuesday, I spoke with dad.  While he was mad his body could do no more to heal, the coming days would confirm what dad wanted.  By Friday, I knew things had changed.  Dad was in great spirits but something was different.  I asked him if he wanted me to get the kids for a party in his room.  He emphatically said “YES!”.  I pulled the kids out of school and brought them to the

home for crackers, cheese, fruit, a movie, and laughter.  Dad and I had a glass of wine.  It was so wonderful to see him happy and at peace. When dad got tired, he hugged his grandchildren and said “Bye Bye!.”  By Saturday when the family came to visit, dad was not well enough to see them.  I stayed with him all day.  Sunday was more of the same.  He was difficult to wake, but when he finally did, it became clear to me that he was in pain.  I repeatedly tried to offer him pain medication but he refused.  We spent the afternoon holding hands.  Dad watched me as though he was trying to memorize every line on my face.  There was nothing left to be said.  By six o'clock that evening dad was tired so I told him I would go and take care of the kids and come back in the morning.  This brought a peaceful smile to his face and I left feeling that he would rest well.  Five AM on Monday morning I got the call.  Dad did not have much time.  I told them I was on my way, but by 5:20 the phone rang again.  Dad had passed away.  As I look back on my dad’s last day’s, I can only think of the peace that I get from knowing that we had the opportunity to focus on what truly mattered to dad.  I had a chance to say goodbye and the kids got one last great day with their Opa.  Dad got to live his life the way he always had, on his terms.   Never afraid, and surrounded by what matter most to him.  Doctor Ellen helped me to understand that death comes to us all.  Sometimes we can choose how we want to go.  When we take the time to focus on what truly matters, the end can bring love, laughter, and peace.