This week I read a story titled No One is Free From Harm: Listening (and not listening) to the patient at the end of life and it resonated deeply with me.
I was very involved in caring for my grandparents at the end of their lives, and witnessed their wishes not be considered and medical professionals making all of the decisions, not coordinating care and causing more harm in the end. Obviously that was not their intention, but it’s how our medical culture works. It felt impossible to stay on top of everything, let alone feel like you had a choice in the care that was being prescribed.
“I’ve asked a lot of people I know, when they’ve gone through a difficult illness, “Has anyone asked you what really matters to you and how you want to do it?” All too often the answer is no. Instead, they get put on a roller coaster. Because they’re scared and feel out of their depth, they just kind of let the provider tell them how it’s going to be.”
-Mark Ganz
That concept hits home for me as a consumer.
Ive worked in the healthcare industry for 10 years and this still happens to me as a patient. It doesn’t matter how educated you are, this system we are operating under is so broken, everyone looses.
One of my fur babies (Cheddar, who is 23 years old!) is currently going through Chemo and I find myself wishing my grandparents would have had this compassionate treatment my cat is getting. It sounds silly, but I truly wish they would have had this level of care. Anyone who has gone through an illness or injury knows the flood of generic pamphlets and information you receive is overwhelming. You find yourself frantically taking notes on your own paper for fear of forgetting a detail, misspelling a medical condition or prescription.
I get written reports emailed to me with Cheddar’s medical records and chart notes after each visit so I don’t need to take notes I can be present in the discussion. I got a cost break down for all of my treatment options emailed to me with live links for me to click on with more information before I made any decisions. At the end of each document it states
“Remember that when you are considering how to proceed with Cheddar, if you make this decision from your heart it will be the right choice(regardless what the decision is)”
Imagine if your doctor, or a loved one’s doctor treated your decisions in this manner. What a different conversation we could have
Everyday Slay 