We hear about the importance of Advance Care Planning so we make our wishes known and sign our Powers of Attorney for Personal Care, but that can still leave our Subsequent Decision Makers in great turmoil. By sharing our story, I hope to enlighten others about complexities that may arise.
Our journey began when our 89 year old mother became weak and suffered serious breathing difficulties due to an internal bleed. She was rushed from the Long Term Care Facility where she lived, to a hospital emergency room, where she was given a blood transfusion. My siblings and I agreed that her condition would not sustain surgical intervention so palliative comfort care was in order. Mom’s earlier wishes were clear that she wanted non-invasive, non-aggressive interventions when it came to end of life care.
Sounds straight forward, doesn’t it?
The blood transfusion improved Mom’s symptoms for three weeks and then she was in distress again. While I won’t go into detail, we had great difficulty navigating a system to provide Mom with a second blood transfusion. Suffice it to say, that there are options available; each health care institution may have different programs, so don’t find yourself stalled by the first health centre, as we were.
Mom’s geriatric doctor and the nursing staff at the long term care facility advised that, in their experience, an elderly person would reject any future blood transfusions and that we should let Mom pass in the comfort of opioids. We (the subsequent decision makers) disagreed. If Mom was still having some quality of life as a result of blood transfusions, then we wanted her to continue receiving blood until her body did reject it. Mom was complacent, she wasn’t complaining about the ambulance rides or time in emergency.
After about the sixth blood transfusion, my sibling began to think that Mom’s quality of life was inadequate and we should stop the transfusions. Mom slept a lot and it was getting more difficult for her to transfer for toileting. So what is your definition of quality of life? In my opinion, Mom still got a big smile on her face when her kids visited her and she enjoyed eating good food. While her memory was poor and her condition was weak, to me she was still teaching us something, by being so complacent and pleasant. I felt that if Mom could understand our dilemma, she would not feel very loved if we just gave up on the blood transfusions.
So over the course of 11 months, Mom’s body sustained TWELVE blood transfusions, without rejecting them. I don’t believe that we prolonged her life with invasive treatment against her wishes. I believe that we supported her until it was obvious that her time had come to pass to the next life – and she did so; peacefully with her family at her side. In the geriatric doctor’s words: “I didn’t think she would live two months, but now I have witnessed what the power of love can do.”