Prepare to read a brief rant.
Every day there is something that pisses me off. One day it was fishing from a friend whether there was anything I wanted to share with her. No. The next day, it was my office visit that needed to be documented before I start a new treatment which is also a trial. It was mainly okay. There was a little burning when one of the phlebotomists stabbed me for labs. I had to drive back to the hospital for the drug drop off to pick up my new meds. They weren’t going to arrive in the mail that day as planned. I didn’t want to wait yet another day to start. I’m close so it’s convenient.
Yet, there are quite a few days I’d like to throttle someone. There are days I struggle.
I also hopped onto MyChart to see what had been decided on changing some nausea meds since my beloved ondansetron may conflict with my new treatment. I clicked on the tab to read my visit notes. There was a new word next to the heading that reads Phase of Treatment – Palliative.
I looked back at other visit notes and the treatment name was actually listed. The time before this the words “deciding what’s next” was written.
Palliative makes me angry. I know it is supportive care for a patient at any stage of illness. It is not end of life care even though many people use the two interchangeably. Hospice is end of life care and can include palliative care.
BUT WHAT THE HECK?
First of all, this change was never discussed with me. Since I am the patient and I matter, having a conversation about a change in terminology would have been appropriate, maybe even required. I could have opposed it from the start. Secondly, there is nothing palliative that I am being offered at my cancer center. Nothing. I have been in charge of all of my supportive care myself. This has included massage, acupuncture, sauna, working with a fitness coach, therapy, Reiki, spiritual work, supplements, and other supportive care. Even the cold capping had been my responsibility. I paid for it. I brought the cap and my supplies. They operated the machine.
If anything, I have felt at times unsupported with recent developments.
I think ANGRY would be the current best descriptor to go next to phase of treatment.
I replied through MyChart to my NP with whom I had my visit.
I asked in writing it be removed.
This is part of my medical record and it’s false. I am receiving treatment. They haven’t provided anything palliative. I don’t want someone unfamiliar to read it and make assumptions about where I am in my experience that could cause them not to offer me something or cause me not to qualify for something down the road. If it isn’t removed, a call to Patient Services may be warranted.
Let me be clear that there is nothing wrong with the term palliative. It can provide a lot of needed support and services. My beef is I am in charge of my own care and fully independent. My cancer center does not get to assign this term to me, particularly when they haven’t provided any related support and services.
So what happened?
I received a call this morning from my NP. We talked about a new nausea med I would try. Then we got around to the whole palliative issue. There is a new template in place for notes. One of the changes are boxes that are checked to describe the phase of treatment. Here are the choices:
Observational surveillance (when no other treatment is available or chosen)
I explained all my reasons I wrote about above and spoke my mind. She explained the choices of boxes. Palliative means “active treatment for metastatic disease” in their world. This differs massively from the supportive care definition. She said others reviewing my records from different treatment facilities would know what it meant and it wouldn’t exclude me from a trial or other treatment down the road. I don’t think either of us can know that for sure.
I said I’d be more comfortable with “other,” but it isn’t being changed. I will hold off on Patient Services because in the grand scheme of things this may be a small deal rather than a big deal. Being identified as “other” may raise more red flags. I believe I won’t be the only one asking why their treatment is being labeled as palliative. Perhaps a box specific for MBC is needed.
I have my answer. My brief rant is done.
What does palliative mean to you?