Palliative in BC: a daughter's view of the health care system
In November 2011, my mother was labelled palliative. I have previously written about this journey in "Caring for a mother through cancer" and in "Social media tool helps a mother fight cancer". I'm grateful to be able to share this time with my mother. As our narrative progresses, I'd like to document my perceptions: the miracles, the challenges and the gaps in our health care system.
After my mother was admitted to St. Paul's Palliative ward, we finally received care and support that was long overdue. This is my story as a daughter and a caregiver. I am one of over 2 million unpaid caregivers in Canada. If we were paid for our work, it would cost the government 25 billion dollars a year. Many have left jobs to provide care. Lost jobs weaken the economy. Lost jobs also equal lost tax revenue that could improve our health care system.
A month in palliative care at St. Paul’s Hospital
It is almost 8 a.m. and the end of November. The winter sun is rising and the wall of Christmas lights in front of Saint Paul’s Hospital creates a colourful warmth in the first light of dawn. Inside the hospital, the halls smell of coffee and hand sanitizer. These hallways have floors with coloured stripes to help guide you to your destination. A crowd arrives at the elevators, waiting. Instead of waiting, I take the stairs to the tenth floor palliative ward.
The elevators are slow, unpredictable and often broken down and I don’t trust them. My experience with these elevators is an accurate reflection of my experience with the B.C. health care system during my mother’s struggle with bone cancer. B.C. health care is technically available, but it is often busy, overflowing with patients and, because of this, it can be slow.
When I take the stairs instead of waiting for the elevator, I feel like a free agent and I note that my ability to choose the stairs is a privilege that only the able-bodied have access to. When I take the stairs, I am not waiting for the elevator. I am not waiting for doctors to help my mother. I am not sitting idle in a waiting room full of old Canadian Living magazines, generic water colour paintings and cheerful elevator music that seems out of place.
As I take on each new flight of stairs towards the 10th floor, I walk amongst doctors, nurses and visitors. Conversations spark amongst us. These impromptu chats prove to be educational. A doctor in sneakers and scrubs explains the legacy of the broken elevators.
“It is difficult,” he says, “sometimes all the elevators break down and we go into code silver [system failure alert] for an entire day.” He breathes heavily as he passes the eighth floor. “The money is there to fix them, but they say it will take years to make it happen.”
The pedestrian traffic thins out at the ninth and tenth floors and I arrive at the palliative ward with flushed cheeks. I am greeted by the warmth of the nurses and other sincere folks like myself and my mother. I feel safe and at home here. Everyone understands. After three years of juggling appointments, groceries, meals, work, new treatments and chemo side effects, my mother is finally receiving proper care and I am receiving proper support in the process of caring for her.
Community in hospital hallways
When I meet people in the hall of the palliative ward, I don’t have to explain anything. It is the opposite of the “normal” world outside. When someone you love is terminally ill everyday problems can seem ridiculous. The chaos of consumerism seems like a collective hallucination. Nothing matters except kindness, love and laughter. When we are faced with death, life becomes more real.
My mother’s roommate was supposed to die a week ago, but she is still standing in the hall chatting about tonight’s episode of Jeopardy. Some folks are here to sit with their family members as they die and some of them still have hope.
An elegant Greek woman converses with me in broken English. She says that she prays for my mother and I. She clenches the gold cross around her neck and weeps about her husband. “It isn’t fair. Your mother is young. My husband is young. It isn’t fair”.
Leaving the hospital
It is scary to leave the hospital. I don't want to become invisible again. My mother was sick and disabled for many months before we arrived at the emergency room at St.Paul’s Hospital on November 15, 2011. When we arrived in emergency, her shortness of breath led to tests that revealed the cancer spreading into her lungs.
Before the cancer spread to her lungs and her label became “palliative”, we had no help beyond voluntary kindness from friends and family. It was not sufficient and I found it increasingly difficult to leave her alone while I went to work. She needed help and eventually, I transitioned from working full time in an office to being a full time caregiver.
When my mother was labelled “palliative”, we became more visible to the B.C. health care system. I have fought hard to get the support we have received. What happens to the people who don’t understand how to advocate for their loved ones?
My mother now has home care helpers who relieve me for one hour in the morning and two hours at night. Beyond the three hours of relief per day, I have help from my cousin who sleeps over two times per week and makes dinner. My brother helps with meals and errands. What happens to people who don’t have loved ones surrounding them?
The maximum amount of help for a palliative patient in B.C. is four hours per day. This means that many palliative patients are left alone for long periods of time every day. There are extremely long waiting lists for assisted living and there are wait lists for hospice.
I am grateful for the help that we have, but I think that the B.C. health care system can do better. The aging population will double over the next two decades. Consequently, the amount of caregivers will double and they will struggle to manage working, living and caring for someone they love. This struggle is unsustainable economically, emotionally and physically. We need to increase spending for health care, not decrease it. We need to make services more widely available. In time, we Canadians will all turn to our health care system and we will want and need the best from it.
Will it be there?