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

Nurses General Nursing

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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?

Remind your mom and maybe yourself that Palliative care is not Hospice. You can still receive treatment. They will just ensure that you are more comfortable in the process. It really sounds like, in my humble opinion, that you should ask your onc for a palliative care consult. Remember, this md works for you and your family. If you want him to sit and talk it is his responsibility. :)

i second this suggestion!

palliative care WILL respect her wishes how she chooses to live and die, but she'll have the professional input and support that'll benefit her and her grieving family.

if you call/reach the onc, have him suggest a pall consult to mom...

reminding her that she can continue with tx.

she calls the shots.

i'm so sorry you have to go through this.

i pray for your mom's peace, dad's acceptance, and family healing for all.

please get that pall consult asap.

leslie

Several others have said it, but it bears repeating. Palliative care may still include treatment. It also includes comfort measures and a ton of emotional support that make it an outstanding choice for someone in your mother's situation. Palliative care nurses are trained to be able to help the patient identify realistic choices and determine what is most important in the time they have left. Unlike hospice, there is no time limit put in place and no need to feel like one has has to "give up" to get it. Some patients are on palliative care for years.

This might be a good transition between active oncology measures and hospice.

I pray for you to have the wisdom and strength to get through this. And feel free to come here for support when you don't feel like being strong. We'll be here for you.

As a clarification, there is no time limit to hospice. It is not true that you have to document a max life expectancy of 6 months and then lose coverage. Many are on for years (not enough, true-- people so often wait too long to look into it before they really ask, precisely because of these erroneous assumptions). If a physician says that all things being as equal, we can expect that this person will probably succumb to the disease process in another 6 months, that's enough. This doesn't have to be the patient's primary care or oncologist or whatever-- we all know how hard it is for some of those folks to let go, because they see death as a failure rather than a part of life. If the patient does not die, but still meets criteria, the hospice benefit continues. Reviews are q3months.

Hospice is regulated in that one has to meet criteria to remain on service. Many people (maybe not here, but outside the nursing world) would be surprised to learn that most patients do NOT have malignancy: weight loss of 10% over the last 6 months is a valid criterion, as are dementia, chronic lung disease, ESRD, AIDS, and NYHA class III-IV heart disease, among others. Some hospices pay for chemo, rads, and hemodialysis as palliative measures; some don't. Nonprofit hospices offer the same services as those with shareholders and have the same regulatory requirements. All are required to have social work, chaplaincy if desired, volunteers, CNA every day, and RN coverage, and respite care. All have palliative care at their core, for symptom management and quality of life. All offer home and facility care; many SNF and ALF residents receive hospice care.

Specializes in MS, Tele, CM, Informatics.

since you said your mom has the will to live. But you see her getting weaker. Let her know that you and the kids are going to be alright. Take some trips while you can weekend get aways even if they are short. Video them...have you mom record a letter to the boys....or let her write something to them. Take pictures...reflect....talk. Tell her everything you always wanted to say....the time IS NOW.... I wouldn't wait to move in ....take a day here and there from work. Spend time with her, if you have family leave use it. Also get the church people just to stop by and check in, if thats ok...along with other services as need. Make special moments, we don't know how long with have on this earth. But make the most of it. Tell her how you feel and talk with other family members. Myself I'm an only child....my heart and arms wrap around you and your family....from one nurse to the next. It would be a good idea to talk with the oncologist...see what he or she thinks. Keep your mom in the loop of everything....because it's still going to be her choice. I just can image what is going on in her mind. So talk with her, see where she stays on her dx..as the weeks ago by. Dont regret that you should have did this or that....THE TIME IS NOW....

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