What does palliative care mean to you? It means different things to each of us, depending on if you had a loved one on palliative care or not. WHO defines it as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Wordy for sure. To me, palliative care means support. It means comfort. It means quality of life. It means the choice to stay at home. It means your family never feeling alone. It means care.
The hardest and easiest decision we made about Madox’s treatment was placing him on palliative care. Let me explain. The fear of your child dying is immediately embedded into your head when you are given the cancer diagnosis. Regardless of the type of cancer and the survival prognosis. It still elicits that fear for that 1% chance. For us, it was clear there was no other option but death. There was no hope, no real fight for survival. Only the fight to help Madox live his last months, weeks, days to the fullest and for it to be peaceful. A quality of life everyone deserves.
Palliative care wasn’t discussed or even mentioned prior to Madox’s last MRI in June 2014. We were trying alternative treatments, diet change and radiation prior to that. We didn’t want the word palliative hanging over his head until we felt it was necessary. That repeat MRI date changed everything. We were told the tumour not only grew to the original diagnosis size, but it had “cauliflowered” and began growing outward. That really explained why Madox was having so much neck and back pain. The tumour was growing down into his spine. The doctor barely got the words out about palliative care when I said we would sign the papers. It was a no brainer but so very very hard to accept. We needed to take a deep breath before signing. It was so final. So complete. The beginning of the end. Our son was dying, and will be dying soon.
Madox was placed on palliative care which allowed us to have a physician and nurse come to our home when we needed. Supplies were ordered and sent to our home such as a hospital bed, or commode. It allowed us to have access to stronger pain medication and unlimited support from the program. Allowing Madox to have his dignity and peace without dragging him around everywhere sitting in waiting rooms to see different specialists. It allowed us to stay in the comfort of our own home. It is a necessary program that no one wants to have to access for their child. Where would we all be without this program?
Although I hated it, I was thankful to be able to have the support and supplies to help Madox through the hardest time of his short life. It is never something that crosses your mind until it is mentioned by a doctor, even if you know it was inevitable. Placing Madox on palliative care gave us personal time together at the end. It was just us 4 in our home, without any interruptions, but knowing the team was just a phone call away. We were able to be with Madox at his last breath, in a familiar setting, on our own terms, laying with him until we were ready to let go.
So when I think of palliative care, I immediately think sadness as I know someone is dying. A family is shattered and feeling hopeless. But I also think peace, comfort and quality of life, because of the care to help the patient pass as comfortably as possible. So yes, I love and hate everything to do with palliative care.