Why I Do What I Do.

For over 20 years it has been my passion to see end of life care in Canada be seen as a priority.  As a child I always wanted to be a nurse.  That dream came true in 1999 when I enrolled in Memorial University School of Nursing.  I loved the idea of taking care of people, especially seniors and palliative patients.  I had lost 4 close family members in the 4 years prior, and those experiences had led me to this area of nursing.  Excited as I was, I quickly learned the reality of what nursing was really like.

On my first practicum, we were (like most nursing students are) taken to a seniors home to assist in activities of daily living.  The patient I had been assigned to was a very frail and elderly woman.  The nurse on charge explained that she was palliative and would probably die that day.   So I went in with all intentions of giving this lady a bath and getting her up in her bed.  When I walked in, I came face to face with a woman who did defiantly not want a bath or to be moved at all.  So I pulled up a chair, and I held her hand.  She opened her eyes and asked me if I would brush her hair.  I located her brush and I did what she asked.    I sat quietly while I brushed her hair.  My supervisor came to inform me that it was time to go.  I had to explain that I hadn’t completed my tasks and ask if I could stay longer.  She said I could not, so I put the brush away and said goodbye to my patient.  She again opened her eyes and said thank you.  I tried to return to my duties, but i could not.  I went back in and sat with my patient until she died.  That moment changed my life forever.  How can we let time, money, or any other thing get in the way of giving dignity, respect and companionship to people at the end of their life? No one should die alone.  I wanted something different, better for her and for others in the same situation.

I left nursing school and came to BC to take a Gerontology Degree from SFU.  I thought that this was a good fit since older person’s chances of dying were higher.  I took other courses in Psychology and Sociology that were about death and after sometime off in 2009 I received a Bachelor of General Studies with a minor in Gerontology and Sociology.  During the time of my studies I registered as a care aid with the BC Care Aid Registry and have worked in home care for both Fraser Health and Vancouver Coastal Health.  During this time I was able to work with many palliative clients and their families.   Most visits were routine and the job was very fulfilling.  There were however a few occasions where I was torn between my job duties and responsibilities and the human part of me.  Leaving clients when you know you are the only visitor they get, leaving clients and families in the last moments when you know death coming, and not being able to have the conversations that you know that they are desperately seeking to have with someone because you don’t have time or it’s outside of your scope of practice.  Those are the moments that stick with me.  I haven’t yet spoken of my own father’s death.

In 2009 my father was diagnosed with bowel cancer.  I was urged by home care and social workers that he should go to hospice.  Don’t get me wrong, hospice is great if you need it.  There was no medical need for my father to go to hospice.  He was on no treatment and like most persons; he just wanted to stay at home.  We signed all the paper work with the Doctor for an intended home death, made arrangements with the funeral home , set up homecare services to relieve me (as I am also the mother of 5 children), ordered a hospital bed and commode from the Red Cross and I met regularly with the palliative care social worker to work through any questions and concerns I had.   We pushed that hospital bed to the middle of the living room where my dad could see the kids jump on the trampoline and we enjoyed our time together.  We cried, we laughed, we took advantage of the time we were given, that we may have taken for granted.  Then one morning in September, I could tell something had changed.  Yes he just watched the leafs game with us the night before, but now he was different.  I arranged for my kids to go to a friends, they said their goodbyes, I called my husband, my brother and sister in law to come and we sat.  We told my dad we loved him and that it was ok to let go. He shrugged his shoulders and within a few minutes he was gone.  It was beautiful.  This is my dream, that everyone involved would have that kind of experience with death as I did.  I miss my dad everyday but I am so thankful of how we spent his last moments.

I have spent the last 5 years, educating myself and researching what end of life care could look like in Canada.  I think it is the right time to look at what’s next for BC and the rest of Canada.  There have been Suggestions, Action plans and Service plans outlined by both the Federal and Provincial Government.  There have also been requests from Associations such as BCCPA and BC Care Providers to provide more funding to educate and provide access to high quality palliative care.   I think by creating a new End of Life Care training program to increase the number of options available at the end of life it will: reduce health care cost, increase choice and autonomy, provide support for burnt out caregivers, include another person to be a part of the palliative team and promote high quality care and services