I would be glad to hear from anyone who has refused chemo or witnessed the experience of someone who has. My mother (77) has decided not to do chemo for her stage IV primary peritoneal cancer, wanting to avoid additional pain and suffering. I respect her decision, but would be grateful for anyone's insight. She's not particularly worried about dying soon (6 months, they have said) but is afraid of pain. The hospice people have promised her "no pain" -- is this realistic?
Hello there.....I have to respect your mom's decision. I can't say how I would feel if I was her daughter as you are, however. Predicting her life expectancy is a tricky game and I am not convinced it is either wise or accurate. The deal is your mom has decided she wants quality of life to be her main focus......I wish I had the information you are seeking but I don't. I do know pain is something that can be controlled and hospice is able to accomplish this. If pain does become an issue you can intervene on your mother's behalf and eliminate it for her. This is going to be a rough time for your family but it is possible it will bring your family together in ways never imagined and in doing so bring tremendous joy to your mom. In that, your family might find some peace. Please do stay in touch with us here and allow us to share this time with you. You can come here to scream and complain as well as your mom's daughter. Allow yourself to feel a wide array of emotions. We will be here for you and your mom.
Thank you so much for your response. What I'm scared of is that they won't be able to cover the pain of a bowel obstruction or ascites, or whatever else comes up, and then she will have gotten neither the longer life nor the pain-free end she wants.
She only trusts her GP at this point. Is a GP a competent person to manage her symptoms until time for the hospice? I'm afraid the gynoc pushed too hard for the chemo and Mom turned against her wholesale.
You say I can eliminate her pain -- does this mean just being assertive with the doctor(s)?
Yes, Bridget.....if you are your mom's advocate you will be able to step up for her. If your mom trusts her GP and your GP will work along with her oncologist then that works. I would be concerned as you are if there are possibilities of bowel obstructions and ascites. Ascites pain can be dealt with but I would certainly want to discuss the possibilities of and treatments for these very issues. Whatever information you can get beforehand is great....the fewer surprises the better for all.
Why is it that your mom is refusing chemo? I am curious ....how old are you? Do you live close to her? Does anyone live with your mom? Who is supporting you at this difficult time? If I am being too intrusive I apologize......
I'm 44, don't live in the same state as my mom. I've been flying out to see her every other week. She has someone living with her at the moment who is being very helpful, and my brothers live in the same city as she does. As to why she is refusing the chemo: she says she is 77, has done what she wanted to do in life, and doesn't want to fight a painful and losing battle. I think she was somewhat stunned by the pain of the debulking surgery and may be depressed, but this decision is completely in keeping with all her previous musings on end-of-life choices.
I would like to know more about treatments for events like bowel obstructions and ascites, but because she has broken with her gynoc, I feel sneaky going to them behind her back. I want to respect her wishes, but I want to make sure her decision is based in reality.
Thank you for your insight. Please feel free to advise..
I happen to be 77 like your Mom, since it is my daughter that has the OVCA, I am an outsider here, but if this was to fall on me, I would have the surgery and the chemo, then fight like hell to live. I firmly believe that they are advancing daily in the fight against OVCA and I would want to be here to see it happen. At our age we know the years left are not that many, pain can be borne, but life is to be lived and not freely sacrificed because we think "we have done it all". I intend to do much more before I leave. I know what my kids would say to me if I made a decision like that, "Mom you never let us down before, don't do it now." Because every one of you kids will feel guilty for a long time, if you don't interfer and try your best to talk her into trying a little longer.
Hello... Sure, it is your Mum's wish not to go with the chemo, but I've got to agree with SimplyStar... I would want to fight this disease...to stay with my family for as long as I could. If your Mum is strong enough to cope with chemo, why wouldn't she want to give it a try? She could go on for years, whereas she knows what the alternative is. I just hope she will give it a go, and hopefully get lots more time to spend with you and your brothers. I guess everyone is different in how they face these things, but I'm a fighter, and won't go without a battle.
Just want to wish your Mum all the best with what she decides on.... and you too. Hugs...Helen...
Thank you, lucymullis, for your note. I did find Ellen Esser's blog and think it is a wonderful, valuable document - I hope someone does compile and publish it.
I'm not sure what to respond to SimplyStar and Helmar. "Fighting" is a choice that a lot of people make; my mom is more the "facing death as bravely as you can" type -- and while I would choose differently from her, surely there is room for all types under this canopy called life? I mean, in particular, that one person's choice doesn't make another person's choice wrong or invalid.
In particular, I don't know how to respond to "every one of you kids will feel guilty for a long time". Are you really *so* sure? I struggle with the impulse to try to convince my mother to do the chemo, but I have to recognize that that is for me, not for her. She is a clear, very intelligent woman used to making her own decisions. How could I, in good conscience, ask her to take on the additional pain and struggle that she has decided against? These are weighty issues, getting to the essence of what life itself is, I suppose....
Most women cannot tolerate the IP treatment. And at 77, it would be a rough ride. I respect your mother's decision on not to do chemo. I have to ask besides having this fearsome disease, how was her health before?
Ask the oncologist if there is a guarantee that at stage IV with peritoneal by adding this treatment it will add to her survival. And ask by how much? I just know that peritoneal is more difficult to deal with. It all depends on the person.
I believe you can be a fighter without doing chemo. Tell her not to give up but to be a fighter. Look into alternatives if she is not going to do chemo. Get out and really enjoy her precious life.
are places to start with.
I am not saying this is better than chemo but if she has made her decision then fight on the alternative front.
Also very important--no stress and try to exercise.
I think your mother certainly knows what is best for her. Two of my parents' friends made similar decisions (different cancers) and they both made excellent use of the relatively short time remaining to them. It is an unusual way of doing things in the States, but can work out very well. I think your mother should be commended for bucking the conventional wisdom. That isn't easy, especially when you are sick.
It's your Mother's choice and her's only. I think you are a wonderful daughter for supporting, what must have been a difficult decision for her to have made. I'm sure they will be able to control her pain well, but it may be something you want to discuss with hospice before the situation is on you. You have nothing to feel guilty about - your respecting her wishes which I think, at 77 years old, she has earned. Just because your not begging her to fight doesn't mean you don't want her here anymore. She's the one who has to actually endure the battle so it's up to her to chose.
Hi, my mum passed away 2 weeks ago. She died in hospice where she was for one week. She went into hospice to control her symptoms-nausea and pain. My mum was in excrutiating pain at home, she was taking 3 different types of pain killers including liquid morphine. But she was being sick so much she was bringing the pain relief straight back up. She went to hospice in an ambulance as she was in so much pain. Within an hour of her getting there they had the pain under control. The hospice was brilliant, it was not like a hospital at all. The standard of care and attention my mum received was excellent. The main thing for my mum was that she was no longer in pain. It enabled her to have visitors every day including her grandchildren. When I visited her every day in her last week she would say what a good nights sleep she had because the pain was under control. If my mum had gone into hospital I am sure that they would of not been able to do as good a job and also not been as compassionate. My mum kept her dignity right to the very end. My mum suffered with a bowel obstruction and the doctors at the hospice thought they were getting it under control, but in the end it was her heart that gave in. She died very peacefully and with wonderful caring nurses around her.
My mum had chemo 2 weeks previously to her dying. I know she only had chemo for us, her family (it was her 3rd lot of chemo). I feel so guilty about that. If she hadn't had chemo perhaps she would of had much better quality of life for the last 3 months ??? I will never know. You have to let your mum decide. I know everyone deals with this disease differently and people say they will fight to the very end. My mum did, but the ascities and the bowel obstruction took over and there was really nothing else anyone could do. Once the disease took over that was it, it was very quick, just a few months.
I am so sorry to go into so much detail but I wanted you to know that there is no need for your mum to be in pain, the hospice can definitely get that under control. If your mum does or doesn't have chemo just enjoy every day with her, ring her every day if you can't see her. Once this disease grabs a hold there is nothing anyone can do and it can be very quick. This time 4 weeks ago I was getting ready to go with my mum to have her chemo. I never dreamed she wouldn't be with me now. My mum was just 62. I will pray for your mum. Much love, Sam x
Bridget, I am with Diane I do respect your mother's decision, as I respect Helen's decision to fight like hell. You know your mother, you know how she feels, if she is not depressed about her decision and has listened to all her options, then it is her decision and you as her daugher are respectful of her. I applaud you in that, it is very difficult for you to be supportive, when every gene that your mother gave you is screaming you have to do something, don't leave me, I am not ready for you to go yet.
I am a nurse and I intend to fight like hell until I know I have no chance of winning, and I know I will know when that is. If your mother has that feeling and she has chosen to accept her 77 good years of rich living and she obvoiusly is not afraind of what happens after we die. My Aunt had cancer,not ovarian and she fought for years, and in the end she was afraid to not have chemo, because she was afraid to die. Ultimately it was the side effects of the chemo that resulted in her dying. Hospice is a wonderful life affirming organization, they will help your mother and your family every step of the way. They will be great with pain relief.
Your mother is a courageous woman who has chosen her own path.
Helen is a courageous woman who has chosen her path
I totally agree with Sam, I have worked in hospice and also a busy hospital. I know for a fact hospice is much better then a hospital, and everyone should only hope to spend their last days with hospice. A hospital gets too many law suits and really has to cover itself. A hospice can much better keep someone pain free and can manage end of life care. A hospital is geared towards recovery while a hospice is trained in end of life. Your mother may have a long time before she reaches the stage where she needs hospice, but I really cant blame her in her decision she sounds much like my mom in that regards, I hope you can accept her wishes, and know that when and if the day comes and she has problems like you mentioned (acites, plueral effusion, SBO) that they will be able to keep her comfortable. There are also some procedures done to make someone more comfortable, that dont entail full surgery. I will pray for you both, god bless.. Shannon
Yes, realistic...that is their mission and goal. Keep these points in mind and you can help your mom press the issue:
1) A PCA machine is very helpful especially if your mom has a PICC or PORT. This can allow a continuous infusion of IV pain medication and also allow 'bolus' dosage (for breakthrough pain). They even have these in 'portable' versions so she can still leave the house and do things!
2) Don't be stuck on 'morphine', there are other version such as dilaudid (hydromorphone) which is roughly 10x more powerful than morphine (but it's a derivative) and works differently, there is also fentanyl patches, etc. Point is there are other things to try because one may not work exactly well with your mother or produce different side effects (such as drowsiness which morphine usually does).
3) Don't let them say she can't "have any more"...it's not true. While they like to keep such medications 'low' in their dosage, there is nothing to say they cannot give more because #1 it's not their pain and they don't know how it feels and #2 they can give more (and many states allow this and protect doctors from malpractice if they give more and the patient does develop a complication....this is important because it allows the doctor to administer when they may otherwise be afraid to). So the big point is you can force the issue...heck, they have sued at least twice successfully in California when they failed to do so for those in a nursing home and a hospice becuase the patient died in pain. So there is case law.
To follow up on #3, you *may* hear that "that's too much!" like I said or other excuses. And that's all they are. The U.S. Drug Enforcement Agency (DEA) and National Cancer Institute (NCI) along with the American Cancer Society (ACS) have been trying for years to teach physicians and nurses that cancer pain is totally different and use of such morphine drugs is needed and all efforts should be used to control such pain. Most hospices are very good with this.
I have also heard, but don't know if it's true, that when IV fluids are taken away the patient does not "die of thirst" but in-fact pain subsides (due to some process the body takes I forget) and they usually feel better. Not saying you should do that now but it's always something to consider. The hospice can explain this, it's usually in their documentation.
I also pray for you both and give your mom a kiss :)
I am so sorry about your mom. I read your post and I know I will be in your position one day soon, and my heart aches for you. It was wonderful you were able to see her every day and wonderful that she wasn't in pain at the end. I wish you the comfort of remembering all your most loving moments together.
I am relieved to hear from everyone who posted about how good the hospice will be about pain coverage and also the practical advice on pushing for more coverage. I can't do much for my mom as she faces death, but I do want to make sure she doesn't suffer. I have kept your postings for reference -- thank you all very much.
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