1. < Caregivers

Doctor wants to stop treatment, patient doesn't want to give up

Posted by concernedadvocate @concernedadvocate, Oct 3 6:16pm

I don't know what to do. I feel like I'm fighting against the tide because the doctor has currently recommended no more treatment for my dad. It will be kinder to give up is the message. I communicated in a followup with them and they said they have the right to decline any giving treatments they deem unsafe (which is anymore further treatment). My dad is English limited so he thought at first the doctor said it was untreatable. I told him, no, the doc said there are treatment options but they are afraid you can't tolerate it. When he learned more about the treatment options (that the provider did not explain in depth, they just said they wouldn't recommend anymore treatment), he did want to be treated. We cannot have him transferred to another doctor within the same facility (I tried). This place is the top place in-state. There are still treatment options available, and he is about 50-60% on the performance scale, so not thriving, but not obviously unable to withstand anymore treatment. He still wants to be treated, but the doctor is strongly saying it could make things worse and not extend life by much given his previous response to chemo.

Recently Tagrisso stopped controlling the symptoms. They gave him carboplatin and Alimta, but he couldn't finish the full course (his WBC dropped and he had nerve pain). Even dropping the carboplatin and just doing Alimta didn't help his WBC. During his chemo break, they discovered mets in his spine which was radiated. His WBC didn't improve even after the chemo break, so even Tagrisso was stopped.

Originally, the doctor had said they would wait for his WBC to rise back up before continuing treatment. His WBC are solidly back to normal now after he started a herbal TCM drug after being below normal for almost two years. But the doctor said the most recent scan showed leptomeningial mets. There are treatments for LM, but considering his previous poor response to chemo, the doc said they weren't comfortable doing anything more because it could possibly hurt him and there were no guarantees of extending his life by a significant amount.

The doctor has said even with all of the treatment, he hasn't really thrived at any point, and he's weak now. They said they were uncomfortable with continuing any treatment and to just enjoy the time remaining + hospice. If he's being evaluated on the performance scale, I feel that there's some bias there, because he broke his hip and at best could only use the walker thereafter. After the most recent mets in the spine, he had limb weakness and could no longer walk. He has had leg nerve pain issues that existed long before the lung cancer started but the chemo has made it worse.

I requested a consult with radiation, and a second opinion from another facility. Just from googling, I can see there are many treatment options. In total, besides palliative radiation, all the treatment he has ever had is Tagrisso + less than a full course of chemo. What happens if the patient still wants treatment but the doctor says doing nothing might be better for quality of life? How do I advocate for his right to continue treatment?

Interested in more discussions like this? Go to the Caregivers Support Group.

concernedadvocate | @concernedadvocate | Oct 4 2:35pm
In reply to @sepdvm "@concernedadvocate this is such a tough time. I found the no more treatment visit with my..." + (show)
@sepdvm

@concernedadvocate this is such a tough time. I found the no more treatment visit with my Dad's cancer the hardest of all. He did not argue about it, but followed recommendation to bring in hospice. I think he was tired of side effects and mentally felt there was no way out. He was comfortable and well cared for in his own home until death.
Your Dad's doctor has seen how chemo side effects can be the cause of a hastened death by weakening a frail body further. That is how he makes his recommendations. I would hope there is a doctor out there who would fulfill your father's wishes of more treatment, but if not, reconsider that their viewpoint may be correct for offering the longest life to enjoy, rather than suffer.
I have know people who said that their time spent on hospice was the absolute best of all medical care. If his disease is not curable at this point, then perhaps hospice or palliative care will give him comfort and acceptance, rather than the belief that he is giving up. Talking with a hospice social worker would be helpful. A second opinion from a referral type cancer center, even if virtual visit, would be helpful.
A Dr. Ed Creagan from Mayo who specialized in palliative care has a couple of good books to read. I love his book "How Not to be My Patient" with many suggestions for doing all that you can for your own health preservation. Explore Immune therapies like Beta Glucan for strengthening your own ability to fight cancer. Medicinal mushrooms are another complimentary therapy that can be used on your own. Another good book: "The Rebel's Apothecary" By J. Sansouci. I have used an immune therapy for 12 years after my initial cancer surgery and chemo/radiation. When traditional treatment stops or takes a break, doing these other therapies gives you the feeling that you are still fighting cancer, not just waiting for it to come back. Using something that doesn't hurt you with side effects, and might help you, can be a positive thing. My Mayo oncologist feels that these other things I have done have caused my cancer to behave abnormally with less aggressive behavior, and allowed me to respond better to my last immunotherapy drug. I feel that everything I am doing is helping to prolong my life, and attitude is so important. Perhaps this could help your Dad also.

Jump to this post

Ty. He has been on beta-glucans at my urging, but he was lulled into thinking that things were alright now and didn't want to take so many pills after a year. After his mets reoccurred this summer, he had a lot more medications to take and didn't want to take those. He's taking them now again.

It's just so tough, because he's not at the point where he's obviously unable to withstand anymore treatment, but he's also not obviously strong enough that the doctor thinks further chemo treatment would be helpful. I don't know what the result of advocating for his treatment will be, but I've lined up some second opinion appointments now. It torments me to on one hand have to cheer him up and say that if he wants treatment we can see what the other docs say and that new advances are just around the corner. On the other hand is telling him giving up wouldn't be bad.

REPLY
windyshores | @windyshores | Oct 4 3:36pm

@concernedadvocate when you go on hospice you go on Hospice Medicare. You cannot have treatment for the diagnosis used to qualify for hospice, but you can have medications and treatments not related to your hospice diagnosis, which are still covered by regular Medicare.

When you go off hospice, you go back on regular Medicare.

My mother hit her head and the doctor wanted a CT scan. Usually we declined imaging but there was a reason to do it in this case, related to comfort. To make sure it was covered, she went off hospice the day of the imaging and went back on the next day! (Even though a fall was not related to her hospice diagnosis, we did this to be sure of coverage.)

Often people's health and quality of life improve for a time on hospice care, whereas at a certain point for certain people. health and quality of life decrease with chemo.

Your father has mets and didn't tolerate chemo or Tagrisso very well. Do you think that he- and you- are maybe experiencing what is often termed the 7 stages of grief, with some denial, anger and so on leading to acceptance? From reading what has been going on with him, treatment does not sound that hopeful and it can cause a lot of misery.

I hope your second opinions are helpful. I know I was still fighting for my mother to survive when she was unconscious in bed at a hospice facility. I was calling PCP because she missed her Coumadin because she was in a coma!! I got the medical notes and it did note that I was in some denial.

I think you will feel better talking to other providers and doing as much as you can as a path toward accepting without regrets. Right now your feelings are important, as important as your father's, and knowing you did everything possible will help, but I also hope you reach enough peace to let it go and use hospice for comfort.

REPLY
View MoreView Less
Please sign in or register to post a reply.