How to tell your mom it may be time to stop chemo?

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Hello, I am mostly a lurker here. I need some heart-to-heart advice....and I'm sorry if this gets too long. If it's in the wrong section please move it appropriately. Thanks....

My mom (58 years young) was diagnosed with stage 4 rectal cancer July 2010. She had a diverting colostomy done July 2010- they could not remove the tumor due to close proximity to the aorta. She did 4 months of FOLFOX with Avastin and Xeloda for 6 months, and palliative radiation for pain. She is now in her 2nd month of FOLFIRI due to the previous chemo/rad not working anymore, and I am pretty certain this chemo isn't working either. The tumor is just so far advanced, and all the chemo really will do at this stage is buy a few months. Last month, her onc asked whether she wanted to try another chemo or to stop tx. She asked us all what we thought she should do, we told her it was up to her and she chose to begin more chemo. She is not ready to "give up" and says she just wants to see her grandkids grow up (ages 8, twins 3, and 15 months.)

In reality, that is not going to happen. I knew before she was diagnosed what we were going to find out and what the outcome was going to be. Sadly, I have seen so many patients lately get diagnosed with late stage cancer and spend their last few weeks/months on chemo instead of enjoying their time left. (I had a pt last week with new dx stage 4 cancer, it looked pretty obvious to me that he was actively dying, yet he and his family started chemo. He died this week :crying2:) I just don't want us to be the ones in denial, but I don't want to kill any hope that she's got. I feel like when she stops tx she will just give up, though I want her to see that she is indeed still living though not treating. Her pain is increasing as the tumor grows. I see her declining physically- she can't get out of bed due to pain do anything except go to the bathroom. She can't shower well, make food for herself, etc. I just want to say to her "Mom, I think it's time to stop chemo." I don't want her to do it just for all of us who will be left behind. The onc has said she thinks she has between 3-5 months left- that was a month ago. I wish the oncs would sit down and talk more realistically about end of life- though I know a lot of pt's aren't ready to hear it.

I am her only kid, and no one else in my family is medically savvy- this burden falls to me. And those 4 kids are mine, I work full time nights, and live an hour away from her though I will move in when her time grows shorter. Any advice from those of you who have been there?

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Specializes in Nephrology, Cardiology, ER, ICU.

Oh gosh - gentle hugs to you - a very caring and loving daughter! I'm so sorry.

Some suggestions:

1. Is there a bridge to hospice program in the area? In my area, we have home care/hospice agency that provides home care in the beginning and then slowly introduces hospice as the pt/family desires/needs. No pressure and these nurses are excellent.

2. Palliative care referral? Our hospitals all have very active palliative care teams that can provide guidance, information, plans for the future, etc.. You could access them via your Mom's oncologist.

3. Obviously, your Mom trusts you and your judgement. Can you have a frank discussion about what she sees in her future?

4. Is she particularly close to the oncologist? Her primary care provider? You have a discussion with them and then bring Mom in?

No easy decisions I know. There are people though to help and support you. I'm so sorry you are having to go thru this though.

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Specializes in Mental Health, Medical Research, Periop.

I was gonna suggest talking to her oncologist about your feelings and maybe you could bring it to her with her doctor present. TraumaRus advice is really solid. I'm so sorry you are going through this, keep being strong.

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I am so sorry you and your family are having to deal with such a devastating situation. I know how hard it is, I have been there twice now.

My mom was diagnosed with stage IV lung cancer in January of 2005. She fought hard, I must say. She passed in August of 2005. She continued with all treatment until there was no more treatments to do. It was always her choice to continue fighting and I admire her for that.

My mother-in-law was diagnosed with stage IV pancreatic cancer in December of 2006, although she did not tell us until January. She wanted to have a memorable holiday. She began treatment, but a couple of months later, refused. It was her choice and I admire her for her decision.

I think both of these wonderful women did what they felt was best for them. They both faced the reality in different ways and both showed their bravery. What matters is that it was their decision on how they faced their diagnoses and their outcomes.

It was very hard for me. I grew up as an only child as well. I was not in nursing at the time, and I don't think it would have made a difference on how I thought my mom would do. I had my head in the sand. Even after reading the statistics, etc, this was my mom and I just knew that she would be in that very small percentage that lived just a little longer. I have regrets that I did not realize the full impact of her cancer.

With my mother in law, I was able to help my husband and his siblings to realize what would be coming and they were able to spend the quality time with her that they needed to. I admire that you have this insight.

I believe it is the patient's choice and right to choose how they deal with an illness. Be supportive of her decisions and be with her.

I wish you all the best and again, I am so sorry that you are going through such an awful experience. ((hugs))

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Specializes in Peds Hem, Onc, Med/Surg.

*hugs* I am so sorry you have to go through with this. traumaRUS gave you wonderful advice and the only one I can offer/stress is to be honest. Beating around the bush isn't going to solve anything. Its not going to be easy but sometimes you just have to sit down, hold her hand and say it. It doesn't make it any easier. I've had to break the news a couple times to patients and that in itself is super hard and I can't even begin to imagine how hard it would be to do the same to my mother. I wish I could offer more. :(

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I would love to be able to speak frankly with Mom, though I am not good at those conversations yet. I would love to get her involved in our local palliative care/ hospice, but I think she thinks that when you bring that up, there's no hope left. Ie- she will give up and die. I want to enjoy her time and not just mentally waste herself away. She is mentally not ready for hospice, and I don't know how to help her get there. See, her mom died the week after she was diagnosed and died in the hospital after 5 weeks of hospital hospice care. I don't think she is going to see hospice the way I see them. When the onc even briefly mentioned the possibility of stopping tx, she just basically went into a puddle on the exam table....

She doesn't really have a close relationship with the onc or her primary. She is the type that only saw the doctor to have me and never went back. She hadn't been to the doc since I was born (I'm 26) and I had to literally take her to get checked out when she got sick. I would love to just sit down and talk to the onc myself by myself, but I don't know- are docs willing to talk to patients' family if they just call them up?? I'd love the onc to "start the conversation" first.

Thank you all, I value your answers greatly! Oh the trials and joys of this life!

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Specializes in m/s.

don't wait to move in. financially if you can, with as little time as is left, make the most of your time and memories NOW. (from a daughter that wishes she had done so- now i regret the memories i have a hard time recalling) i am so sorry for the pressure landed in your lap. please, get your support group around you, and enlist their help. alot of previous posters had great advice. you will be in my thoughts, please keep us posted?

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Specializes in Family Nurse Practitioner.

I think you have gotten great advice so I can only offer well wishes for you and your Mom as you continue on this journey.

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Specializes in Trauma, Emergency.

i don't have any brilliant advice, only love and prayers to send to you...i am so sorry you're having to go through such a tough time, i will keep you and your mom in my prayers. my heart aches for your struggle :redpinkhe

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Specializes in Hospital Education Coordinator.

I pray for peace for you and your family

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I've been there! I feel for you and your children.

I know exactly where you are at.

alll I can tell you is do what you feel is right, no regrets later.

I attempted to try to get my Mom to stop...

even her home RN tried to tell her...but yes, they feel it's giving up.

in the end it was the chemo that killed my mother...but she had chemo from

sept 1997 until a few weeks before her death in Feb 2000.

I still feel that doctor should be shot! The chemo destroyed her stomach, and we had to put her in a drug induced chemo until her stomach acids killed her. It was the most horrible experience of my life.

I believe you got fantastic advice on here and a conversation with the doctor should clear up a lot for you! God Bless... and maybe "Mom I think it's time to live a quality life" is a better way to start a conversation?

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Specializes in LTC.

My prayers and thoughts are with you and your family during this time of trial.

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