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Palliative Care


jessopy2

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My mom (stage 3b/4 - nodes new to abdomen) has been in and out of the hospital alot recently due to pneumonia/pleural effusion/ fibrillation and is waiting to start Tarceva. We are noticing that the doctors in the hospital for treatment of these issues that are arising keep discussing palliative care options with my mom, while her oncologist hasn't really ever called her treatment that. I know in some cases it's just semantics, but it makes my mom really upset and she gets quite frustrated with the doctors/ nurses regarding this. Is our own oncologist just not telling us something or are these doctors jumping the gun here?

My mom has deteriorated quite quickly in the last month but we are really hoping that Tarceva will help to stabilize/improve things.

Has anyone had doctors like this, do the semantics really matter, does it change her care/ approach to her care?

Any thoughts would be great.

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Since we don;t know your Mom's age & general health condition or which tests she's had for staging her lung cancer, it is difficult to answer your question. However, I get the impression that Mom is frustrated with the docs and wants to fight & get treatment. If this is true then she should get a second opinion asap at a major cancer center. There are many stage III/IV survivors here that were able to find aggressive doctors to help them in their fight. Good Luck & God Bless

wendyr

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[ jessopy2 ] ...in some cases it's just semantics...

Yes, it's semantics, but I'd leave out the "just" part. It can be a big deal to a patient who may not know in what context the doctor or nurse is using the term.

I've ranted about "palliative" and some other easily misinterpreted words before, but this time figured I'd take a different approach. I found an article in Wikipedia which does a good job of explaining the evolution of the term, the different meanings it carries in hospice versus non-hospice settings, and some other points that go a long way toward explaining why there's such confusion today:

http://en.wikipedia.org/wiki/Palliative_care

No, I don't think your oncologist is holding anything back from you. He knows "palliative" automatically brings up end-of-life thoughts in many if not most people, even if such is not the case, and simply explains things to the patient and family using other words. In that regard, he's a cut above a lot of oncologists. Neither do I think the other doctors and nurses are jumping the gun. They're probably using the word in its non-hospice context and are not aware of how much unwarranted concern it can cause.

I hope your mom does well on the tarceva. It's done wonderful things for a lot of people. Aloha,

Ned

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I had one doctor he was my pulmonary doctor. He gave me the 16 to 18 months, but like your mom's oncologist my oncologist had a much brighter picture and said we could fight it and there is no telling what the outcome might be. He has stayed that way through my treatment. Just the other day I gave him a list of all the things that I am taking. He said I am not about to tell you to stop taking anything. He assured me that the other doctor was one of the best. That he did not have a very good way with words. Since I don't see him very often I did not change. I think that he has changed a little because of the results that I have had. I hope so. I think the Tarceva helped me a lot. Let's pray that your mom has a good reaction to the Tarceva.

Stay positive, :)

Ernie

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Like Ned says, there's "pallative" and then there's "Pallative."

I know my mom is recieving pallative care because her Onc. as told her that he doesn't think he can sure it, but he's pretty sure he can control it indefinately. She's getting a standard first line treatment.

I think the hosp docs are using "pallative" to mean end of life and it doesn't sound like you or your mom are ready for that. If so, now would be the time to say that. "We are starting a new treatment that we hope will enable her to make some progress against her cancer. She is not ready to discuss pallative care yet." I would think that would end the discussion, at least for awhile.

Susan

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It's just a word. I railed about it at the time too! It really rubbed me the wrong way. Following my husband's wedge-section biopsy, I hauled the hospital's lung cancer coordinator out into the hallway and gave her a big lecture on not selling my husband down the river. She explained that it's the technical word they use with late stage incurable patients. Okay, I could accept that.

See my husband's profile for his "Palliative care" program. You'll see that it is no less, and actually much more aggressive then many curative treatments. (Of course, that's because we are fighting an uphill battle.) Semantics be damned, it's all about how aggressive the oncologist will be with the patient. It also depends on how much the patient can handle. Your Mom's doctor isn't the one tossing around that word, so I wouldn't worry. It's the other nit-wits in the hospital setting using that "word". :?

----An FYI from personal experience.--

I'd push for the Tarceva ASAP. My husband regretted that the Doc gave him a three month "chemo break" before starting Tarceva. He also was horribly weakened with many issues after 20 cycles of doublets, but knew that he could have easily handled any side effects of Tarceva within about a month of rest from the prior chemos. We know the Doc was trying to gauge how fast or if the cancer would grow back during a rest period. From a survivor's perspective, Tony didn't care about that. He wanted to stay ahead of the cancer, especially not knowing if the Tarceva would even work.

Best wishes for speedy use of Tarceva with fabulous results!

Welthy

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When my mom was diagnosed I took charge and got all of her medical records, did research. I also talked to the doctors separately and just asked him, telling him that I wasn't holding him to anything. When asked about decisions I turn it around and ask them what they would do if it was their mother. What type of cancer is it? Is it mesothelioma? If it is you need to go to a meso specialist. These doctors deal with this much more than any oncologist being that meso. is rare. Good luck.

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Thanks so much for the kind, uplifting words and the support. This has been a long uphill battle and I'm working almost a 1000 miles away and keep going back every couple months for a few weeks to help my siblings/dad....but whenever I'm back here at home and hear my mom's in the hospital miles away ---even though she gets back out and is at home again a few days/weeks later --- it hits me hard since i can't see her and know how she's doing for myself. I'm going to push to have the Tarceva started as quick as possible too.

Thanks again - your posts helped alot

Jessopy

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Pallative is and is not just a word. My Dad was recently diagnosed with Stage IV NSCLC and before receiving even a single line of treatment, the hospital team talked earnestly to us about palliative care and hospice options, thrusting brochures into our hands and dropping names of low-cost hospice options that serve the city's uninsured and homeless!!! Can you believe it? An intern told him he had "a 1% " chance. *%&$^#^@! NOT TRUE.

Since aggressive treatment wasn't even discussed as a "palliative" option, we find that the doctor's were slanted toward death and dying, not life and living, however much time is left. We had a family meeting with the hospital team and discovered that, at least in Canada, the term "pallative care" is a resource-generated term. For example, if you agree to "palliative care" in a "palliative bed," then you are precluded from pursuing certain treatments that might be considered more aggressive...for purely financial reasons that the national health service has worked out long ago and completely independent of you.

Sometimes docs use the word "palliative" to mean that you can't be cured, but sometimes they use it to mean that they aren't going to (and can't) spend certain resources on you -- that you are barred from certain tests, medications and procedures by accepting "palliation." So be very careful and clear about how people around you are using the term. It has realtime and real-life consequences.

And, yes, there is hope for your mother, even after a difficult month. Get her to a lung specialist, not a general oncologist. My father was deteriorating on a daily basis, but we insisted that the fluid in his lungs be drained (docs said they couldn't see any but we told them to hell with xrays, do an ultrasound...and sure enough, they found 3/4 liters of liquid!). He also started Tarceva and after 3-4 days can finally eat and keep the food down, thank God, and is regaining his strength for aggressive chemo in 3 weeks.

Tell your doctors that their gloom and doom bells are loud and clear, but you've heard enough of them. Tell them not to discuss prognosis anymore in terms of how much time your Mom has left, unless SHE asks about it. Buy your Mom a plant and tell her that it stands in the place of you when you want to but can't be with her, and that every time you are able to visit, together you will marvel at the progress of the plant and the progress of your Mom.

DO NOT BE PSYCHED OUT BY THE MEDICAL WORLD. THEY KNOW ALOT, BUT THEY DON'T KNOW EVERYTHING.

Hang in there.

Yirol

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One more practical thing, Jessopy2....

At the end of our first meeting at the Lung Clinic, the medical oncologist said that if we needed her to write any letters on our behalf to help us help my father better, she would be more than happy to do so. In about 3 days, she wrote letters to my brother's employer and my father's landlord to facilitate moves and transfers.

I don't know if you could use longer breaks from work or if a temporary transfer would work for you, but try to imagine your ideal scenario for helping/being with your mother, and then brainstorm ways to make it happen. Use your oncologist too. Get letters from him/her that will buffer your "case" with employers, etc.

Best wishes,

Yirol

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My mom has been conssidered palliative for the past 26 months. To our drs. it seemed to just mean that they couldn't CURE the cancer, but that they weren't giving up. They wanted to increase her quality of life by all means available. Look at her history--Mom has attacked this beast very aggressively. The decision to enter hospice was hers this past week.

I'd check to see what your drs consider the term to be. It does NOT have to be a signal of surrender.

Prayers for you.

:) Kelly

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[ yirol ] ...at least in Canada...if you agree to "palliative care" in a "palliative bed," then you are precluded from pursuing certain treatments that might be considered more agressive...for purely financial reasons that the national health service has worked out long ago and completely independent of you... So be very careful and clear about how people around you are using the term. It has realtime and real-life consequences.

A superb post! Brought out some additional nuances that were certainly news to me. The "worked out long ago" part is significant -- I hope the Canadian health service is periodically reviewing its policies in light of current treatment options.

It's wonderful that your dad is finally getting good medical treatment and seems to be responding to the Tarceva. Please keep us posted on his condition. And thanks for being here, though like all of us, it's the last place you'd choose to be. Aloha,

Ned

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Thanks, Ned.

I can't say enough how key language is in this day and age...maybe because I'm the daughter of a literary giant (yep, bragging here!) :wink: ??

As with any profession, the modern medical world is full of "code speak" that veils information about finances/resources, prognosis and timetables behind words and phrases that seem more or less innocuous (and maybe at most annoying) to you and me.

If we hadn't been obnoxious with our cross-examinations, we would never have uncovered the fact that our team of doctors was using "palliative" in a way that we were not using or understanding it; and that, to them, "palliative" and "aggressive" were mutually exclusive terms...not only because of philosophical approaches to "quality of life" and "end of life" issues but, more dangerously and banally, because of administrative restrictions and protocols on RESOURCES that they hadn't even begun to tell us about. And it was like squeezing this information out of a stone.....(This might be extreme, but have you ever heard of "the banality of evil?").

In normal circumstances, it's hard enough to ask questions about things that seem to you and me to be non-issues (like the choice of particular words), so I can't imagine how sick patients are supposed to see, understand or ask about the link between terms and $$$.

It took 3 weeks of testing to finally get a diagnosis for my Dad and, before and after the diagnosis, we kept asking if we were "losing time" with all of the waiting and not-treating...and throughout it all, the doctors had the nerve to say, "at this point, one or two days or one or two weeks isn't going to make a difference." Which we knew immediately to mean (and have "proof" of now) that they had already quit on my Dad and written him off.

Another example of language having realtime effects: My father told his nurse that he would wait until his test results for pnemonia were in before taking antibiotics (a matter of hours- because he didn't want to start and stop and then develop a resistance to an anti-biotic that he might need later, as the young intern doc suggested he might do)....but that he would take all of his other medications as usual.... and the nurse wrote in my Dad's record that he had "REFUSED" medication...so for about 14 hours, they "refused" to give him his regular meds.

Watch peoples' language like a hawk when your family member is too sick to. Watch out for medical code-speak, and watch how your messages back to the staff get recorded. Don't get bogged down in it, but always err on the side of clarifying.

Apologies for being long-winded. I'm passionate about language and its effects, especially when it's life-and-death.

Yirol

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Thanks again everyone. My sister has made it very clear to the docs/ nurses that my mom/our family wants a positive atmosphere around her at the hospital and that she'll accept no less. My mom has been getting a little worse the last 1-2 days and I'll be heading back to my mom's city -- can't wait to see her! We're starting the Tarceva on Thursday and are thinking the best for her.

Thanks again for your support.

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I am interested in reading the other posts here. I do have to say that I have read others on this site who are true, true believers in positiveness and having a heart with spirit. If you are losing hope, that can take an affect on you.

Please know you have my prayers. Keep us posted.

jen

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  • 2 weeks later...

I can be very literal sometimes (not always good) but it made understanding palliative very easy for me. (now, the word hospice....that was hard)

I know that palliative treatment is simply a term used to describe treatments that are not curative. So I think of them as alleviating symptoms and even forestalling more disease, thereby extending life.

For example, Elizabeth Edwards is undergoing palliative treatment. She will never be cured but she may live many more years - and given breakthroughs that do come down the pipeline, palliative treatment could ultimately become tremendously life-extending.

But if that word is hurting your mom's spirits, ask the medical staff to NOT use it - just call it treatment. The last thing you need is to pump her up for a brighter future (and that takes work, I know) and have one word tear it all down.

When my mom was taking Tarceva, I remember her doctor saying to her, "no one knows how long - this pill could work very well for you and that's our plan and you could wind up living many, many years still."

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