“There is such a misconception that Palliative Care is only about dying. It is really about helping patients to live as well as they can for as long as they can.” ~ Maggie McGee
Our Mom, Peggy McGee, died in Pictou County’s Palliative Care Program on March 15, 2009. She was an incredible Mother, an inspiring teacher and my best friend. We lost her much too soon.
In my Mom’s two-year battle with cancer my family saw all sides of the healthcare system. We stayed on crowded wards, were ignored by overworked staff, sat on agonizing waiting lists and had surgeries cancelled. We thought we had seen it all. But we had never experienced anything like Pictou County’s Palliative Care Program. This program is truly “gold-standard” and one of the best in the entire country.
We ended up in the Program after my Mom was admitted to the emergency room at the Aberdeen Hospital. She laid on a stretcher in horrible pain for more than 24 hours in the busy, noisy, crowded emergency room. When they finally wheeled Mom to the Palliative Unit all of a sudden the cold, sterile hospital ended. As we rounded the corner I remember being surprised to see hardwood floors and leather chairs. When we went inside it was so quiet and peaceful that I felt like I could breathe for the first time in days. It is truly an oasis of calm that feels like home…not a hospital. It’s comfortable, warm and inviting.
At this point my family was exhausted, emotional, overwrought, angry, walking on eggshells, teary and anxious. We knew no one could cure our Mom, so what we needed more than anything else was to make her comfortable. The Palliative Unit gave us a safe place to grieve and to surround my Mother with love. The staff made it possible for us to sleep by her side and stay with her around the clock.
Returning to Joy
When we first arrived, the number one priority for Dr. Gerry Farrell and his team was to get my Mother’s pain under control. No one understands pain management like palliative specialists. It was miraculous how quickly they were able to reduce and manage my Mom’s debilitating pain. Once that happened, she was actually able to enjoy herself in the Palliative Unit. I know that sounds impossible, but that was my Mom…..she wanted to live every moment she had left. The Palliative Team took care of as much of the pain as they could, so my Mom could focus on the joy. That was an incredible gift to all of us.
They also gave my Mom control over her care. When you are dying, you lose control of everything….your body, your mind, your future, your fate. The Palliative Program helps patients regain some measure of control by allowing patients and families to direct their own care. At other times, in other hospitals, we experienced the more common “doctor-centered” approach where we felt like we weren’t listened to, weren’t consulted and weren’t important. In the Palliative Program, it was the opposite. Everything revolved around my Mother, what she wanted and needed. Her rights were totally respected. And when you have lost control of everything else, when controlling the small day-to-day decisions is all you have left, it meant the world that they gave my Mother the dignity and respect of controlling her environment, her schedule and her care.
After two years of cancer, my Mom had had almost every invasive, high-tech intervention you can imagine. But in the Palliative Program the approach isn’t about wires, machines and surgeries. It’s about providing simple, old-fashioned care and comfort. The doctors and nurses gave us the most precious thing of all – their time. There was no rushing. No matter how busy they were, they interacted and chatted with our family members like they had all the time in the world. We felt supported and cared for by the staff and volunteers in every way. They literally became part of our family, giving kind words and hugs. These simple, honest, human interactions personify everything that is good about the Program’s “high touch, low-tech” approach. It meant so much that Dr. Farrell, and his team, took the time to get to know my Mom so they could understand her needs and help to celebrate her life. As a family, this approach told us “you matter.” For my Mother, I believe it allowed her to be her best self in her final days…full of strength, grace and courage.
Holistic, Patient and Family-Centred Care
The Palliative Program takes what’s called a holistic, comprehensive approach. I had heard these terms before, but until I experienced it I didn’t truly understand. What it means is that the Palliative Team (nurses, doctors, social workers, volunteers, home care specialists) looked after every aspect of my Mother’s health – emotional, physical, spiritual and practical. And they didn’t only focus on my Mother. They provided care for our entire family everyday in ways large and small. From stopping in with hot biscuits and cups of tea to helping us navigate some incredibly tough issues in my Mom’s final weeks. Probably the most difficult was preparing to tell 9-year-old Savanna that her Grandmother, who she had lived with since she was two years old, was going to die. Our social worker Rosemary and Dr. Farrell guided us through every step of that process. It nearly ripped our hearts out, but we handled it together as a family.
Many families get pulled apart during times of stress and struggle, but with the medical, social, practical, emotional, spiritual and mental support provided by the Palliative Program our family was pulled closer together. They made the worst time in our lives survivable. Because of the program’s support, we were able to enjoy every second of the precious few moments we had left with our Mom.
Honouring the Cycle of Life
When the end drew near, Mom decided she wanted to go home. So the team helped to arrange home care and equipment to make that possible. Dr. Farrell made house calls at all hours of the day and night to ensure the comfort and care continued.
In the end, there was nothing anyone could have done to make the loss of our Mom anything less than devastating. But the remarkable care of the Palliative Team made it bearable. Even with all the best possible support, we barely survived this trauma. Imagine the torture for families who are forced to go through this with no program, no expertise and no support. My heart aches for them.
They say a society can best be judged by how it cares for its most vulnerable. Who are more vulnerable than those who are dying? When Mom was in the Palliative Care Unit her Grandson Kyle Michael was born in the same hospital. It was a heart-stopping moment when we wheeled Mom down to meet him 20 minutes after he was born. Here in one hospital we had the cycle of life happening at its most intrinsic: Grandmother is dying while Grandson is being born. Kyle had full health services to start his life. We all take for granted that obstetrics and pediatrics is a basic necessity. But at the other end of the spectrum…..why is it that end-of-life health services are seen by many as a luxury?
In my mind, Palliative Care for my Mom was every bit as necessary as obstetrics were for baby Kyle. Dying with dignity should be a basic human right. I believe a truly loving society takes care of the dying, just as it does the living. Pictou County’s Palliative Care Program does that. No one could save my Mom, but the Program saved my family. And for that we will be forever grateful.
Palliative Care is a universal need since each and every one of us will die.
“My Mom’s last wish was that someday the kind of comprehensive Palliative Care she had will be available to every person who needs it, no matter where they live or what they can afford. I know in my heart that if we all work together we can make this happen.”
Providing Care and Comfort to Patients and their Families at Life’s End
The Aberdeen Hospital’s Palliative Care Unit was born of great compassion, the vision of Dr. Gerry Farrell and Mrs. Beth Sobey. Recipient of the “Innovation Excellence Award” from Cancer Care Nova Scotia (June 2009), the unit is a model of patient-centred care and we are fortunate to have this remarkable program in our community. The Palliative Care Unit Endowment is dedicated to improving care, equipment, and facilities in the Aberdeen Hospital’s Palliative Care Unit.
Support quality end of life care for everyone.