Thread by @CarolynMcC

Thread about end of life decisions: #EOL
A couple weeks ago, I had a good friend diagnosed with an aggressive glioblastoma (brain tumor). She underwent surgery. Of course they couldn't get it all and I visited to help her and her children decide on the next steps. 1/x

At her follow up, we didn’t know the official diagnosis. Based on the odds I did all the research on glioblastoma treatments. I figured once we had the full picture, we could decide the next steps. Despite surgery, her brain worked well and she had an excellent attitude. 2/x

The neurosurgeon came in first. He informed us it was a glioblastoma (glad I went with the odds). He said she needed the standard six weeks radiation treatment and chemotherapy, and that they were going to fit her with an “Optune” device (very cumbersome equipment.) 3/x

I introduced myself in the meeting as a doctor/family friend at the beginning. Once he was done speaking I asked if the cancer was methylated (better response to treatment) versus unmethylated (poorer response). It was unmethylated. He wasn't going to tell us. 4/x

Given that, I knew prognosis was really poor. I told him quality of life was important. He did some song and dance about the possibility that because the tumor was dividing so rapidly, that she might respond better to treatment. He also wanted her to enroll in studies. 5/x

Next came the radiation oncologist. I said given the unmethylated status, we want to consider the 3 week course. He admitted he didn’t know it was unmethylated. 🤨 6/x

He agreed the 3 week course was a better choice after learning about the methylation status and agreed with me that the Optune device was not a good choice. He said he would need a repeat MRI before starting treatment. 7/x

Then the “Optune” device lady came in. I kindly and immediately said, “We are opting out of Optune.” She was in the room less than one minute. My friend laughed and her children thanked me. 8/x

Then came the oncologist. We said we were considering the 3 week treatment. We stressed quality of life was very important and requested a palliative care consult at the start of treatment – this would not have been ordered had we not known to say this. 9/x

The woman scheduling the MRI said it was not available until 2 weeks later. I kindly said this is pretty fast growing and could we move it up? This medical assistant was a gem – she begged for an early appointment and we had it 6:30 the next morning. 10/x

Next morning – MRI shows the tumor doubling in size since the surgery, plus there were three more areas it had spread – in two weeks! We had a long family discussion, and the radiation oncologist kindly agreed that hospice was the best choice. 11/x

My friends biggest worry? That the cancer would change her personality and she would become mean while she was dying. I’m bawling. 😭😭😭😭😭 12/x

MY TAKEAWAYS FOR YOU:
#1 - Doctors – do not force patients to make treatment decisions when they are just learning the diagnosis!!! Tell them the diagnosis, give them the options, and the statistics about those options. 13/x

Set up an appointment the day after to help them make decisions. Had I not been prepared in advance, my friend would have been railroaded into aggressive useless treatment. We are now making memories with the time left. 14/x

#2 – Doctors – always offer a palliative care consult for any serious disease. Study after study shows that early palliative care prolongs life and quality of life while undergoing treatment. 15/x

Patients – insist on early palliative care. This is not the same as hospice. This is focused on helping your quality of life while undergoing treatment. It also eases the way to hospice if treatment is not working and leads to a better end of life. 16/x

#3 – Most important – we had a long conversation about her “being mean” worry. I reminded them that when she was her lovely self, that you had to love and relish that moment. 17/x

I reminded them if her personality changes, or if she is exhibiting odd behaviors, that isn’t her, that is the disease. Love the person, hate the disease. Love her harder when the disease is taking hold. 18/x

#4 - At different times, her son, daughter, my husband and I were falling apart. I stressed we need to love each other in those times – because that was the disease affecting us too. Families lash out in stress and pain. Dig deep for kindness and compassion. 19/x

Thanks for listening and I love Twitter for the catharsis.
BTW, my friend expects me to write many stories about her experience. I love her.
The end (for now)