Jesus Take the Wheel

For the past four years, except for my time in hospice, I have been receiving treatment from a palliative care group here in Ohio. Palliative care is similar to hospice in that it is primarily focused on comfort care, but in palliative care many patients still seek curative treatments, whereas hospice centers on end of life. Prior to being in palliative care I had several different specialists managing different aspects of my disease, which meant frequent appointments with little collaboration between specialties, and it drained me to my core. Palliative care was a very welcomed change of pace with the benefit of multiple aspects of my care being managed under one roof.

The first time I met with one of the doctors it was unlike any experience I had before. He asked me what my goals were, how I was feeling, what I wanted to do. I had never felt so seen and understood by a doctor. My health improved in their care, and they also asked me to be one of the patients representing them in their new marketing. They made a commercial with my whole family, and I appeared in their printed and online advertising.

This palliative care group gave me hope for leading as normal a life as possible, and were very responsive to any needs that I had come up. Then slowly over the months I felt less and less listened to. It was harder to get an appointment or to get a call back if something came up. I assumed they must have an influx of patients from all their marketing, and just had less resources to go around.

Near the end of 2022 I was told by one of my palliative care physicians that they were closing at the end of the year and wanted to give me time to find a different care provider. We began the search looking for another group that would focus on comfort and manage as many aspects of my care as possible in one place. The first group we liked came out and did an assessment and shared with me the things they could provide for me. My follow up appointment was scheduled, and I was feeling really confident about the future with this new healthcare team.

Suddenly a few days later I got a call that this group could not take me on because the doctor was not comfortable managing the medications I am on. This seemed a little strange for a palliative/hospice organization, but I took their answer and started looking for a new group.

A Nurse Practitioner from the new palliative care group came out and did a similar assessment. She apologized for what happened with my current provider, and said something about rules changing about medications and how she hopes their medical director will be willing to look past how I look on paper and hear what she has learned from being with me in person. That’s when we learned my current palliative group is not closing like they told me; they’ve decided to change what type of patients they see. They want patients that are, and I quote, “a slam dunk” for palliative or hospice care, such as cancer patients. “As you know,” I was told, “your condition is more rare and you are so young.”

What I gathered was that I don’t meet the criteria for the ideal palliative care patient. You can’t see my disease like cancer, only it’s affects. I don’t know if laws changed about what treatments can be provided for different types of patients, or if my group made changes internally to what they want to provide, but either way I don’t understand why I was not just told this up front instead of being deceived into thinking something else.

The NP left my house telling me she would talk to their doctor about me that day, and would call me at the latest by tomorrow to let me know if they would accept me as a patient. After five tomorrows I called them back, and it was not a total surprise to hear that they also will not take me on as a patient. It was suggested that I seek out a pain clinic.

Not only have my past experiences with pain management clinics been downright agonizing, but that means also needing to find someone to manage my breathing, someone to manage my nausea and weight loss, someone to manage my fluid infusions, and someone to manage my mental health. I literally do not have the strength, will, or stamina to go back to having eight different specialists that do not communicate with each other, and spending my days running back and forth to appointments day after day. I simply do not have it in me.

The way forward that I can see right now is to wean myself off of my medications, discontinue my tube feedings and fluids, and let my chariot come whisk me away. I am broken by the dysfunction of the healthcare system that once seemed to offer so much hope and assurance. I’m crushed to know there will be many others out there unable to advocate for themselves, unable to stand up and survive a system that wants to just exhaust you to death in a swirl of confusion and misinformation. I’m just sad and empty, and I cannot run on empty.

I know that this does not come as a surprise to God. He knew all along. I am confident He will meet me, whatever the road forward looks like. I do not like walking into what I cannot see, but I trust I have a Savior who sees all and will keep me in the palm of his hand.