Brain Hospice

luckywife · February 2008

Brain Hospice

luckywife · February 2008

I came across this web site

www.brainhospice.com

and was surprised to find out that the hospice needs of cancer patients with brain cancer or brain mets are different from other cancer/disease patients. I found the site informative.

Since I am dx with leptomeningeal or cerebral spinal flluid mets (not tumor just individual cancer cells in the spinal fluid) which has a difficult prognosis, I have been keeping my eyes open regarding what to expect...not that anything is predictable with this disease, one can only try to be as informed as one can.

Pl. share any thoughts or knowledge or anything else regarding brain mets, hospice, decision making etc.

-luckywife

maddie103 · February 2008

luckywife,

I was the one that asked you for the website address and did check it out. My MIL has liver mets and brain mets. She is meeting with hospice today. I must say I read most of the website extensively and most of it is right-on as far as accuracy.

While everyone's case is different, she is exhibiting some of the signs/symptoms in the "what to expect" section. I looked at a few days ago but some of the things that were true is "child like behavior", "having a few falls", "hearing loss - my MIL's hearing is not gone totally but anymore when I call her on the phone, she'll keep saying she can't hear me and in the background I'll hear her tv blasting.

I'm sure it is quite daunting to read this stuff, but it is very valuable information.

Thank you for sharing it with everyone. I had never even heard of it until you brought it to my attention.

My MIL is having an interview with hospice today (just hospice, not brain hospice) but I will share this information with you if you would like. Even though I couldn't be there with her today, her daughter will be there when hospice comes for the interview/assessment.

Linda - PA

luckywife · March 2008

Linda,

I am glad that your MIL has you to do some research for her. As for this category, I think it is for patients who want to talk about hospice, end of life..living, choices etc. (Correct me someone if I am wrong) For family and caregiver's perspective and discussions they have a different category where you may be able discuss your concerns about your MIL situation and write about her experience and yours. Many others in your situation may have better feedback for you.

I have seen many sites including brainhospice website where only caregivers talk about almost end of life symptoms of brain or central nervous system mets patients along with their need for hospice to help with the care and these concerns can be depressing for patients who are still active, not showing many of the symptoms and are actively participating in their own care and dx, tx decisions.

I wonder if there are any such patients here who are thinking about considering involving hospice and have some knowledge to share. Some questions come to mind are:

- Who recommended hospice? Family, onc., you?

- Will the onc. be on the team and drive the team or is there a separate hospice doctor (or equivalent? manager)

- Will you see the onc.?

- Any other drs.to continue to care for you? Say neurologist? Pain management specialist? Or one hospice dr. to do palliative care (including all needs)

As you can see these are different concerns as a patient than a caregiver.

Thank you for your feedback.

-luckywife

cats_love_me · March 2008

luckywife I can answer some of your questions. My mom's onc mentioned hospice several times, as one of our options, before we decided to transfer to hospice.

The onc doesn't really participate in running the hospice team, and i do not believe mom will se the onc anymore, unless she decides to stop hospce and start chemo again. They have specific hospice doctors, who are suppose to be on-call all the time, and readily accessable.

Accessable, and having your full charts, read below, we found this to not be true, the hospice docs seemed to need help from specialists (urologists) who worked w/ mom.

We are brand new to hospice last week. My mom doesn't have brain mets, but she has a stint in her ureter, urologist. Well things flarred up this week, her having to pee every 10 mins.

I will say, I am not impressed with hospice at all. So, if you chose to not read this.

The hospice nurse told my mom to take more pain meds, oxy-fast to help w. the peeing to much. Which is crap, mom has pain, and severe constipation problems, so lets have her take extra pain meds which cause her contipation, and tomarrow she won't be able to go at all , even w/ her rx meds to get her to go.

So, I call my mom back, and I talk to her home health care lady, and have me read thru her pills, that she has, but doesn't take regularly. She has piridium, from the prev stint replacements. So, I then instruct mom to call hospice nurse back and ask about taking that instead. So, i talk to my dad this morning, and they switched to using the piridium.

Nurse comes out again today, still they aren't talking about doing a urinalisis, or put her on a anti-biotic. So, nurse comes out tonight, and is flushing her bladder (i'm not sure exactly, since i wasn't there), and she is passing clots. Passing more than she can get out, finally gets ahold of her urologist, and he recommends her goto the ER. '

Mom has a DNR, and then at the hospital they didn't want to look at her bladder, or flush it as the hospice nurse mentioned. They didn't want to do anything. They had to recind the dnr for them to even treat mom, they didn't even want to figure out if its her liver mets causing the problem, or if clots in her bladder or kidneys?

My dad is overwhelmed, the hopice nursed faxed over or sent in info to the ER, but it was 10 words long. Dad wasn't at the house when the hospice nurse was there,so he doesn't know all what happened, and drs are now asking him questions, and he doesn't know, and mom memory is lacking some these days. So, hospice lady gets an f on this end, not giving enough info to the hospital.

Ow yah hospice was suppose to stop by the hospital tonight, and they got there at 7pm, and by 10:30pm, they were no where to be found. Mom sat in the hospital for quit some time while the docs were deciding if they should do anything, didn't ask my mom if she wanted anything done. I was talking to my dad, and said, well youll have to resind(sp?) the dnr to figure out what is going on.

Its slippery slope recinding it for er visit, but they wouldn't even investigate and repeat what the hospice nurse was doing, so my dad is not happy.

I'm just irritated by what the nurse has done and not done so far. I'm heading up tomarrow to help dad out. Had i know things were all messed up I would have went up earlier today, but as of 10pm didn't know what was going on and its snowing now, w/ a 3 hour drive.

If you decide to accept hospice help, I would recommend they have your charts and information for contacting all the specialist, and information. As we found out tonight hospice doctors didn't really have all the information about her urology stuff.

So, we aren't happy with hopice.

luckywife · March 2008

Cats_love_me,

I am sorry that your mother had to suffer through all the difficulty. I have not been on the board last few days as I have been going through some treatment myself. I truly hope that things are already taken care of, your mom is seen by specialist and no longer in pain. My very best wishes for that.

Thank you for taking the time to write about your experience where your mother's ability to access to the specialist, even in case of an emergency was jeopardized. My concerns as a patient are listed in the questions I have included in the original posting. Your post speaks to it on target. Pl. keep us posted on the progress. Sometimes in the beginning things are rocky but settle down as we learn how to work it well for us.

You are a wonderful daughter to jump in to advocate for your mom and helping your dad. I have no doubt that many sisters on this board will benefit from information you provide.

Best wishes.

-luckywife

luckywife · March 2008

Hello all,

I first started out this conversation as about "brain hospice" since I found that there are some special needs of central nervous system mets. In addition since this group seems to be created for those patients who want to talk about their ideas, expectations etc. regarding end of life care, hospice situations, I was curious as to what CNS patients thought about this case.

Unfortunately, I did not get any responses from any patients let alone cns mets patients.

cats_love_me's post speaks to the difficulty her mom faced due to lack of access to specialist in a hospice situation and as a patient that is important for me have/know. So if you are a family member who has something that will help a patient work well with a hospice situation, pl. feel free to post the experience.

I think each hospice is run differently and the more we know, we can learn to ask questions and understand how to make the system work for us.

-luckywife

TenderIsOurMight · March 2008

Dear Luckywife,

Thank you for seeking this information for patient's. You're right that one type of hospice may be different from another, with specific focus.

Just wished to say I've been thinking much of you, although I haven't posted as much. I hope you are fairing o.k.. I've seen you posting so to me, that's a good thing.

You're never far from my thoughts,

Tender

cats_love_me · March 2008

I thought I would post an update. After the situation of mom being in the hospital is over for right now. Here is where the problem was. It was the ER doctor who was on an ego trip. Hospice informed the er to treat mom, in what she wanted done, her urologist spoke w. the er doc. The urologist told theer doc to treat what she wanted treated. however the er doc, apperently knew more than the urologist. This doc was an attorney, and a coronor too. So apparently he knew more about what mom wanted than what she wanted done herself. He was taking the position that it could be her liver mets dropping clots, and it was his position that he wasn't going to treat her because she was dnr. It wasn't until after I talked to my dad when he went up to the doc and directly told him to treat my mom, even if that meant to remove the dnr. The dnr was never revoked, but thy finally treated her. It was afer 1 am before she was admitted and got a room. Also, the er doc never told the urologist that my mom as admitted to the hospital, he failed to tell him that, so it was friday by the time he saw her at the hospital.

We talked w/ hopice yesturday, when they stopped by to check on mom. They told us the hospital administrator would be the person to make a complaint with. My dad made sure to get his business card.

Connie

Ruth1 · March 2008

Connie,

I too am stage 4 breast cancer patient, but the reason I am writing is the problem with your mom, having a stint in her ureter tube. I too have had a stint in my ureter for a month it has so far been removed. today I get another renal scan, I urinate better, but my kidney is still having some problems. According to my urologist, it was caused by either the chemo, or radiation. My onocolgist and the radiation onocogist have never heard of that happening before. I was very excited hear about another person having to have a stint put in her ureter tube. May I ask why she had to have one put in?

Trying to get all the information that I can. All of this is living hell.

Thank you

Ruth1

cats_love_me · March 2008

Hi Ruth1,

Mom had to have a stint placed in her ureter because on of the lymph nodes near the ureter, had cancer and wrapped itself around the ureter, and closed it shut. So, they punched thru the cancer, and stuck the stint in. She has to have them replaced every 3 months.

One thing that has happened is that the last replacement of the stint in january, they noticed some enlargements of the blood vessels. She started FEC chemo back nov. she received 2 tx of it. So i don't know if the FEC made the blood vessel problems, or if its the rubbing of the stint. In jan it was her 3rd stint replacement.

We don't know if it was the chemo that made things worse w/ the blood vessels or not. BUt, the placememt was due to the uretor being blocked by cancer.

Connie

waterlily · April 2008

Ruth1-

I have stints in both my ureters. The lobular breast cancer spread to my ovaries, tubes, perineum and ureters. I have constant discomfort in my bladder despite all kinds of medication. They had to change the first stint aafter 4 weeks because it clogged up. It's been a couple months and I still continue to have hydronephrosis in my right kidney. On my last CT scan it did not excrete any of the contrast material (my left kidney was fine, thank goodness). I see the urologist on Tuesday to see what he wants to do next.

It is good to know of someone else in this situation.

EGAL · April 2008

Hi All,

I don't know what made me check out this topic as I am Stage 3 and do not have brain mets but for some reason I did and as I read on it when to urinary issues. I have a UTI now and it started last week. I still don't feel 100% and I took anti-biotics that Onc gave me last year after a developed one a few days after my first chemo. I had the RX just in case and didn't need it until now. But I am really scared that it is more than just an regular UTI. I wonder if it could it be bladder cancer???! Or kidney issues!!!!

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BLESSED4 · May 2008

Hi,

I have been in hospice for three months now. I have a stint in the urater due to be removed Friday. I am scaredl if anyone can tell me what it is like to be removed i would appreciate it. If I have to see ER or a specialist all hospice does is release and readmit when i am done. Just a little bit of paperwork. It sucks beacause I also have 2 naphrostomy tubes (tubes straight from kidneys). They are always something wrong with them. They need to come up with a better less painful way to fix that problem. Well I hope hospice treats you better.

BLESSED4 · May 2008

Hi,

I have been in hospice for three months now. I have a stint in the urater due to be removed Friday. I am scaredl if anyone can tell me what it is like to be removed i would appreciate it. If I have to see ER or a specialist all hospice does is release and readmit when i am done. Just a little bit of paperwork. It sucks beacause I also have 2 naphrostomy tubes (tubes straight from kidneys). They are always something wrong with them. They need to come up with a better less painful way to fix that problem. Well I hope hospice treats you better.

Brain Hospice

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