Healthcare, Access, and the Steep Cost to Regular Folks, Part 3

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.

How to Advocate for Yourself and Your Loved Ones

Have you been to a hospital and felt disappointment over how you were treated? Despite being a doctor and knowing how to navigate the system, it failed my own loved one. I’m ashamed of the system I work in, but I firmly believe there are actionable steps patients can take to protect themselves:

• Recognize that physicians are human. Advocate for yourself and loved ones. As the adage goes, trust but verify.

• Trust your intellect and the power of information. Yes, you cannot condense medical training into days. However, educating yourself allows you to formulate insightful questions and extract what you don’t know from people who know it.

• Protect yourself. Medical care is expensive. Take the time to find the plan that provides the best coverage you can afford. When illness strikes, it will be too late.

• Have the tough conversations up front with loved ones. Assign a trusted proxy to make decisions for you when you cannot. Empower your proxy with knowledge regarding interventions you want and interventions that are off the table. Tell them you want “everything no matter the cost” versus “let me go if there is no hope for quality of life.”

The Cost of a Missed Diagnosis and Inadequate Care

Yesterday, I recounted my weekend watching my loved one suffer from metastatic pancreatic adenocarcinoma, a highly aggressive and incurable cancer with a life expectancy of months. He had symptoms and got a CT scan in January showing a pancreatic mass. It was cancer. It was missed.

He suffered in silence, worrying about the financial implications. His silence eliminated any opportunity for treatment at a stage when treatment was an option. He never consulted doctors in the family. He never had the tough conversations with family.

He didn’t protect himself.

When he finally got admitted to the hospital, the cancer had ravaged its way throughout his body, leaving no options for treatment. I witnessed my colleagues in medicine fail him repeatedly. The surgeon never spoke to family about what the end of life looks like. I was left to have these conversations with his young children. The kidney doctor kicked the can down the road, allowing him to remain on pain medication that built up toxic byproducts in his system as his kidneys failed, leaving his pain control to the unavailable palliative care doctor.

The Difference Patient Advocacy Can Make

I advised his family and berated my colleagues entrusted with his life. His family decided he wouldn’t want people pushing his chest hard enough to break ribs in an effort to force his heart to beat. One of his children became his healthcare proxy. His pain medication was finally changed to one that gave him relief without knocking him out.

This morning, he spoke with his family for the first time in days. He was no longer in excruciating pain.

A Challenge to Healthcare Providers

If you’re a healthcare provider, here’s my challenge to you:

Own your patient. Regardless of specialty, we all see people at their most vulnerable moments. The onus is on us to treat their disease and preserve their humanity.