Healthcare, Access, and the Steep Cost to Regular Folks, Part 2

Note: I wrote this in the throes of frustration and despair over a dying loved one a little over a year ago. I hope it teaches the audience something valuable about how to protect against the worst.

The Challenges of Accessing Palliative Care

Palliative care doctors help patients manage symptoms like pain, inability to eat, along with conducting conversations with the patient and their loved ones about what the end of life looks like and what measures would be acceptable or unacceptable should the patient's heart or lungs stop. Palliative care was unavailable over the weekend. My rage had no outlet, my words fell on deaf ears, and for the first time in a long time, I felt useless.

The Emotional Weight of End-of-Life Decisions

Talking to a patient facing imminent death about what that looks like and explaining to loved ones why they need to decide who will make decisions and how to make them once their dad/mom/parent cannot make decisions anymore should not be siloed to one medical specialty. Punting human conversations to other doctors should not be allowed. I was left to have these conversations.

"What should we do if the heart stops?"

"This is tough to hear, but you have to push hard enough on the chest to make the heart beat enough for blood to pump to the body."

"We should be prepared. Watching it happen in front of you unprepared is traumatic."

"Would he/she even want that?"

The conversations went about how one would expect. Anger was displaced, a cacophony of conflicting opinions were yelled into the ether, and the messenger was subjected to death by firing squad.

The Cost of a Missed Diagnosis and Inadequate Insurance

The story unfolded further. My loved one had undergone a CT scan months ago due to abdominal pain, and a much smaller mass localized to the pancreas was dismissed. The cancer was missed at a stage when something could be done. The driving force behind this was a lack of financial resources and inadequate health insurance. Tragedy piled onto tragedy, and when the dust will settle, a family of young children will be left to fend for themselves.

Three Lessons on Navigating Healthcare

This story is far from unique, but valuable lessons can be learned:

1. The medical system is far from perfect. Doctors can be callous and ignore the person in favor of the disease. Advocating for yourself and your loved ones should never be off the table.

2. Medical knowledge should not be accessible to only doctors. Yes, medical training provides a nuanced sense of disease and treatment that cannot be learned in days, weeks, or months. However, medical literacy is paramount to protecting yourself and people you love. Educate yourself about your disease, and use that knowledge to ask the right questions from the right people.

3. Health insurance cannot protect from financial collapse, but it is certainly better than no insurance whatsoever. Medical bills lead the pack when it comes to the cause of bankruptcy. Please pay for insurance, even if you are completely healthy.

I hope my story provides someone out there with advice they can use for the better. Today, I am ashamed of the system I work in and how it failed my loved one.