“Port or no port? I want to decide.” A patient shares about the importance of being a participant in her healthcare decisions.
We welcome back guest blogger and Patient Family Advisor, Pat Clesh, as she shares her thoughts on a core concept of patient and family-centered care, Participation, in which patients and families are encouraged and supported in participating in care and decision-making at the level they choose. Leave your thoughts and questions for Pat in the comments section.
The holidays are here, along with many choices to be made. As a child, I made paper chains and decorated my bedroom with them. As Christmas approached, I would tear off one link of the chain each day until there were none left on that sleepless night called Christmas Eve. It was so very exciting!
In the autumn of my years, I find myself wanting to put chains on the doors of stores putting up holiday decorations before Halloween has come and gone. Can we just slow down and enjoy one holiday at a time? Apparently, the answer is no. So, I choose not to be that cranky old lady, but in my heart, I wish things could be different. The “early preparation” of the holiday money makers has completely taken the child-like excitement out of me, but I choose to smile through it, remembering the magic of the season through the eyes of children.
Last December I received a huge red poinsettia as a gift. I nurtured it indoors until May and then planted it in my garden. Plants in pots do okay, but most certainly enjoy Mother Earth so much more. It’s almost as if they thrive through the participation of what comes naturally.
What comes naturally to me is participating fully in life as much as possible. This includes feeling like part of the team when it comes to my health and decisions pertaining to it. An example of this was my decision years ago to forego a port for chemotherapy. Since my breast cancer was Her2 positive, I had to undergo 18 infusions in a one-year period. My doctor recommended a port. Two oncology nurses checked out my veins and said that they thought I could go without a port. With the nurses’ input, I chose no port. My veins held out and I avoided two procedures: one to put the port in and one to remove the port. Thank you, team!
In his TED Talk, “Health Care Should Be a Team Sport,” Eric Dishman discusses the idea of taking charge of one’s health decisions, as well as participating on the team. Eric shares his personal story in an innovative and enlightening way and I think you will take many ideas from it.
I am ever grateful for not only my personal medical team, but for each and every one of you who do so much to encourage and support all patients at AAMC.
Below is a photo of my Christmas gift that I decided to plant in my garden. It will soon perish from the inevitable frost due to arrive, but in the meantime, I am enjoying its autumnal beauty.
Thanks for all you do!
Pat Clesh, Patient Family Advisor