Phase of Treatment: Angry

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.

WHAT?

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:

Adjuvant

Neoadjuvant

Observational surveillance  (when no other treatment is available or chosen)

Palliative

Other

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?

Author: Kristie Konsoer

I've been living well with metastatic breast cancer since 2012. This blog is a place where I can share thoughts and ideas on cancer, how I feel perceptions of cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom.

16 thoughts on “Phase of Treatment: Angry”

    1. Palliative is supportive care that is a part of hospice. Hospice is more equated with end of life care. Misinterpretation by others is one of the things that makes it so worrisome. I don’t want others to think less of my health because of a term.

      Liked by 1 person

  1. Fucking ridiculous. They can’t assume that their incorrect use of the word palliative will be interpreted correctly and the potential damage to you and treatment options is also unknown. I hate these form over real substance things that change without us knowing or being consulted. I’d be mad too. 🤬

    Liked by 1 person

      1. I totally agree as to what services and how you are treated. It would be the appropriate label for the services I am getting but we don’t have phases/labels where I am treated. Whatever the label, it needs to be accurate.

        Like

      2. Medicine is all about accuracy. Staging adheres to specific criteria. Chemo, infusions, pills, etc. all need to be made exactly the same! Words to describe patients must also carry over from one area to another. Could I not be metastatic if I moved somewhere else?

        Liked by 1 person

  2. I have always thought of palliative as comfort zone” for the patient. Do what it takes so that the patient doesn’t suffer. It rides along with “end of life” care. It also has a “help the patient” for the time being. This is a time for support from the hospital.
    So are you suffering? Yes. Too much “medicalise” with language and communication being unclear. Left and right hands aren’t in sync. Your treatments and other issues surrounding them go wacky sometimes!( Try to get a new port!?! ) Your meds and your alternative measures for health are in your domain. You’ve taken them into your hands. Sometimes things don’t work out. You’ve managed though it has not been smooth sailing. In the end, is this term an attempt to make your life easier than it is? Is it meant to alert staff to be kinder and more helpful?
    What do you want? I know you need that term erased. I want to see you.

    Like

    1. My only suffering is with this term at present. They aren’t using it correctly and it strikes me as very odd that no one thought this might cause an issue for patients when a new template was designed. Beyond frustrating. I’ll talk to you soon.

      Like

  3. Where I live, palliative care is comfort care, and reserved for end of life. Hospice is a relatively new term here, and is most often termed hospice palliative care.

    Like

  4. This seems so ridiculous. Why don’t they have an option that just says Metatastic. That I think would convey all you need it to convey if there needs to be a classification. Why does there even need to be a classification?

    Liked by 1 person

    1. All excellent points. I’m described as metastatic in an initial section. Then there is a list of all the treatments I’ve been on. After that is a short narration of the visit. That is plenty.

      Like

  5. Kristie,

    If the term doesn’t sit well with you, they should remove or change it. It’s your life. Your chart. Your cancer. Your treatment. Not sure why they’re so insistent it remain there. And if your treatment has not been of the palliative sort, well then, they’re using it improperly.

    Btw, I have had the term angry applied to me, though only once that I know of. When I read that word written in notes from a doctor (not my regular one) via by patient portal, it was rather startling.

    Keep writing.

    Like

    1. A lot of people commented on this one from various sources. In the end, there seems to be a distinction between palliative treatment and palliative care. I fall into palliative treatment with MBC. I will clarify at my next appointment if only to reiterate the confusion it provides patients.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s