Need help poss bowel obstruction

jake0303

we don’t know what to do, since my mom is in hospice care they told us she can’t go to the hospital.

A little background my mom was diagnosed with stage 4 ovarian cancer that has metastasized to her abdominal wall. She ended up with a bowel obstruction and they placed a balloon G tube to drain her stomach contents when she needed to help with pressure. Well there was some complications.

When her G-tube was placed about two months ago due to her having a bowel obstruction, they perforated her small intestine during the procedure.

They essentially told us they couldn’t correct it as it was too dangerous and sent her home with us and they advised her to sign up for hospice.

Well okay… we did that, things weren’t great but she eventually started being able to use the restroom again and her tube wasn’t leaking. Well, now fast forward about 7 weeks I think she has another obstruction and now around her tube is this brown liquid that won’t stop leaking. The nurse told us to use gauze but there is just so much, she is unable to use the restroom or to get much to drain from the tube. It is all leaking around the tube soaking through everything. Please please if anyone has advise We need it. My mom has always been so so strong but this has really started to take a toll on her mentally and physically more then ever. We need advice.

thatblondegirl

Dear Jake0303,

I’m so sorry you and your mother and family are suffering.

I’m no expert, and I have limited experience with a hospice patient, but this is my understanding: No life saving measures should be performed. This would mostly be about performing CPR, etc…so, you’ve signed a DNR, but I don’t think that means suffer from fixable problems. Good Lord.

What I DON’T think it means is that a patient should suffer from something like a painful bowel obstruction! That seems outrageous to me. So, what….if a hospice patient develops an abscessed tooth…..Just because she’s on hospice, she should suffer that pain, and possibly become septic? I don’t think so! Any decent person would say she needs treatment by a dentist.

When my uncle was on hospice he developed two painful bedsores. Lots of time and money was spent to treat the wounds and make him as comfortable as possible, and keep him from developing sepsis. Just because he was terminally ill of something else, did NOT mean that they would allow him to die from septicemia!

Her doctor’s office should be involved in this situation. I’d be making an in person visit to whoever the “Big Gun” is with the hospice provider. My understanding of hospice also tells me that it’s a business, in other words they want the money. You might consider getting a new hospice team. There are probably other hospice providers in your area.

Sadly, I learned from another situation that ageism is a huge problem. Old? Sick? Alzheimer’s? The quicker they die, the less money they cost…. the quicker they stop receiving Social Security…the sooner they get off Medicare. I was horrified to learn this is true.

Bottom line: I’d be in their faces and screaming my head off at everyone until something is done!

Good luck and prayers.

❤️, A

jake0303

https://csn.cancer.org/discussion/comment/1697302#Comment_1697302

Hello A,

Thankyou for the reply we are currently looking into a second opinion and what options we have,

You are right with the DNR, we did do that but my mom made it clear that she still wanted treatment for stuff that is fixable, the thing is they won’t do ct scans or x-rays to see if anything has changed because it’s not considered comfort care.

Well I can tell you my mom is NOT comfortable one bit, she is only 51 y/o. I know things aren’t gonna be perfect but with the amount of leakage there is going on around her tube even I can tell there is something wrong. Possibly a bowel blockage, or some other issue but gauze isn’t gonna fix it.

They want to take her off of medication that “prevent” diseases that occur later in life because it’s not “comfort care” but if they take her off of them I fell like that will just make her health decline because she has taken them for so long and her body needs them. A lot of thing they have pushed to do don’t make since. I know she doesn’t want to give up though and has a lot of fight left in her so I wish they would do everything they could to help with this.

Thank-you so much for responding and for your advice.

Jake

thatblondegirl

You’re welcome, Jake!

You didn’t write about treatments your mother received, or her prognosis, so I’m not sure why she was told to go on hospice. Was it because of her cancer or the perforation of her intestine? And now that I learn she is only 51…and I know nothing about surgery for a punctured bowel….I don’t know why they thought it was too dangerous to attempt to fix it. It’s not like she’s 95 and couldn’t survive the surgery…I would think. And I’m terrible afraid that the brown liquid you describe is feces?

I have some vague recollection of a clause in the documents somewhere which allows you to get off hospice? I don’t really remember. You might check into it. I also seem to remember that if you’re on hospice and then don’t die, THEY can choose to kick you out. Again…it’s all about the darn money. (Sorry, I’m kind of cynical about that.)

I’m about to be 67 and when asked if I wanted to sign a DNR…maybe before surgery….or before first chemo infusion…I told ‘em…well, I can’t really write what I said here…but I made it clear I thought they were crazy, and uh……the answer is NO! Idea being….I wasn’t going to die of some fixable thing just cuz I was trying to survive cancer!

So….again…my advice is to fight! They’re not used to it (I think an amazing number of people take what doctor’s say as gospel, and then literally lay down and die), and they hate it, but too bad!

Best to you, A

Kaleena

https://csn.cancer.org/discussion/325238/need-help-poss-bowel-obstruction

Jake

im so sorry your mom is in this situation. If she is on hospice you should be able to call any time of the day or night and have a nurse come over. Further, yes being on hospice you can’t go to hospital for iV fluids but that doesn’t mean you can’t get antibiotics. And as to surgery I m not sure if that one but you can go off hospice at any time and go on palliative care. Then you would be able to take her to facilities.

your hospice nurse should advise on whether it is an emergency situation requiring intervention. Keep calling until you get answers. Hospice is there to ease suffering and pain management but this is different.

my husband was on hospice. I got a whole medical kit. I’ve called in the middle of night. They can get you any supplies you need.

I hope by the time I posted this you got some answers

prayers

Kathy