Input regarding Grandma with SVCS - thanks

  1. Hi -

    I have written before so some of you may already be familiar with this...

    My Grandma, 78, hx of mod - servere COPD, CHF, IDDM has been recently dx with a lung tumor and SVCS. She agreed to radiation but is refusing chemo. She has been a DNR for years, much more concerned about quality vs quantity and is "ready to go" (her words) - we support her totally. She says she can take or leave the radiation... it doesn't bother her and it did help with the symptoms and she understands that she can quit at any time (she only has 5 tx left).

    Her oncologist is pretty upset that she does not want the chemo (she tried it and it wiped her out and she vomited for days afterwards) and keeps bringing it up. Grandma is still with it, but doesn't like him and has trouble speaking her mind when talking with him... he thinks she is giving up. At the same time he has told us that absolute best case scenario is that she would have a yr left, that there is no way to cure her and that the effects of the radiation will only have an effect on the tumor for about 3-4 months after tx's are finished. Chemo would only maybe buy another couple of months.

    I have been talking to a friend at work who is a MSN and works in the chemo clinic. He mentioned getting her into hospice now instead of later, for the sake of pt advocacy and also so that they have a chance to really do their stuff instead of coming in at the end trying to catch up. Giving us a chance to build a relationship with the people who are going to help us through this phase and also get to really know grandma. He also mention that she should not have her PICC line removed (unless DVT or infection) as she is really going to have issues with air hunger and possibly pain (though not yet) - and that IV morphine is the way to go. The oncologist wanted the line out... said when she gets ready (worse) they can put a mediport in.

    She had an apointment with her pulmonologist today.... Grandma has been seeing her for years and knows Grandma's feelings, and we were hoping that she would help advocate for us. I was unable to attend this appt, told mom not to let them pull the line. The Dr told mom about the risks and not understanding the whole complex picture Grandma let them pull the line. She states that Grandma is a long way off from needing hospice and that they will really control your life with limits and is against us going that route. (We totally thought she would be in our corner)

    I am really starting to get emotional about all this as I do not want my Grandma to suffer. I remember working on the oncology floor my first year out of school - absolutely LOVED it and if I wasn't moving to Africa I would most likely be working in hospice. But I know that value and the blessing of having the whole family in agreement over end of life issues and I don't want it to get messed up now with medical bureaucracy....

    While grandma is holding her own - she is getting weaker and her short term memory is starting to go, and she really isn't paying that much attention to what anyone is telling her - especially the Dr's. I have a feeling that becuase she doesn't want to fight death that she most likely will go sooner more than later. (She really missed Grandpa and can't wait to see him).

    Anyway... I tried to edit this as much as I could, if you have any questions that would help fill in the gaps I would be happy to answer them and any advice or insight would be much appreciated -

    Thanks

    Lori


    BTW - my clinical instructor while I worked on oncology suggested we read "Final Gifts" - I ended up buying the book years ago - it is very dog-eared and worn form all the times I have lendt it out - my Mom is now reading it and is really appreciating what it has to say.
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  2. 12 Comments

  3. by   leslie :-D
    well lori, it sounds like grandma needs someone to advocate for her. it's unsettling that your grandma does not like her oncologist, so their relationship is limited at best. how does grandma get along with her pcp?
    i totally support her decision not to have chemo; even though it might buy her a couple of more months, they wouldn't be reflecting any quality of life. i've seen too many times that oncologists want to do everything for their pts., which might be ok given the pt's age and prognosis. please, get someone to stand up to the oncologist; it's not about giving up; it's about making the most of what you have left. have her pcp refer a hospice to you, i think that's absolutely appropriate. God bless.
  4. by   Loribabble
    Thnaks for the input.... she acutally gets along with all her docs except the oncologist. I'm not sure who her pcp is but that is another good place to start - thanks. She actually has a great relationship with her pulmonologist so I thought we wouldn't have a problem. I have no problem advocating for her and being an RN it has definately helped -but since she is able to make her own decisions I feel like her oncologist thinks we are trying to kill her off or something by pushing the issue. We have an appointment on the 27th with the oncologist again and I am going to talk with my grandma - making sure it is ok with her if I speak for her (she has never minded in the past), she will be there to clarify anything and that way he will be very clear on what grandma's wishes are.

    Thanks again...

    Lori
  5. by   aimeee
    It is excellent that you are standing behind your grandmother's decision not to do the chemo. Many oncologists are within a culture that focuses on quantity over quality and have difficulty making the shift to measures which maximize comfort. It may help if you and your family can talk with your grandmother and define what her goals are at this point and then you can remind the medical providers of what your GRANDMOTHER'S goals are, and that your focus is what SHE wants and needs.
  6. by   Loribabble
    Aimeee - thanks for your reply. We have had many discussions with Grandma over this and I plan on doing it again - especially before we see the oncologist on the 27th. Grandma hasn't changed her mind on how she feels and we have been very honest with her regarding the tx options and timelines etc. At every decision we have given her all the possibilities and scenarios, along with what she can change at a later date and what she can't. I have also been honest with her regarding what is likely to happen at the end with the air hunger/pain etc and so far she has been really content with her decisions. The assisted living place that she is at LOVES her and is willing to keep her on as a hospice pt so she can stay at "home" which is what she wants.... the administration had the staff vote as they will have a lot more work added on to care for her and it was unanymous!

    I think what burns my butt more than anything is that I was horribly spoiled when I worked on the oncology floor. The main oncologist was WONDERFUL! He loved his job and was very comfortable with end of life issues, he even did an 8 hr class for us. I haven't worked there in a couple of years but I am thinking about contacting him too. I would have him be Grandma's dr in a heart beat but he's 1200 miles away.... UGH!

    Lori
  7. by   leslie :-D
    lori, please tell your grandmother that the chances of any 'air hunger and pain' can be greatly minimized when properly medicated. your grandmother can choose the level of medication that she is comfortable with. there's no reason in the world why anyone should have to die that way. please reassure her that she'll be kept comfortably as humanly possible.
  8. by   Loribabble
    I really appreciate your reply, thanks.... We have discussed it and she knows that her comfort is first on all our lists and that there are ways to make that happen... that was why I was soooooo strong headed on keeping the PICC in - from what I have heard IV morphine is the way to go for air hunger. Several people I trust said to not let anyone talk her into using sublingual or other routes. The dr's "say" we can have another one put in when the time comes but I am really worried that they are going to fight it and try to get us to use other routes....
  9. by   leslie :-D
    that's total nonsense. roxanol which is mso4 20mg/cc is given sl with excellent results. the objective is to give a med that will be most effective with the least invasive route. truly, a good hospice nurse will know exactly what to do. you're a wonderful granddaughter.
  10. by   momcats3
    Hi Lori,
    Please please please, by all means, see if you can get your Grandma on to hospice. I've now a hospice nurse, and have already seen patients who tortured themselves w/chemo, on the possiblity that they may have a few more months. It's cruel, and I was so surprised that some Onc. MD's I've met through out the years don't even mention hospice to their patients. Hospice's goal is to make those last months as comfortable and life-affirming as possible. Putting services into place for your Grandma early on allows her, and your whole family, to establish warm, caring and loving people to take care of you all, and to help her on her journey. Very personally, my Mom had lung ca. She had a horrible time w/chemo, and also made the decision to stop it after the first treatment. Still, the oncologist refused to even mention Hospice to her. I actually met with him, along with the Hospice folks for a consultation; he told me, and I quote "I don't like the idea of Hospice - you people use too many drugs. I'll put her (my Mom) on Hospice but I won't authorize any pain medication" :angryfire And this is from a person who calls himself a Dr? This whole, horrible experience is what made me change my life, go to nursing school, and become a nurse. Anyway, enough about me. I have worked w/many many patients that we've keep comfortable and pain free (yes, pain free, including no air hunger/gasping/SOB) to the end. We have many meds that can do this. As to administering meds sublinqual, is it better to try and shove a pill down their throat when they can't swallow, or give them a painful injection??? SL drops are put under the under the tongue. They can be given while the patient is awake or asleep - you don't have to disturb them. The kind of comments you've been hearing are outrageous, and totally false. These people need to be educated.....
    You sound like you love your grandma as I loved my mother. They truly deserve the best we can provide for them. I will keep you in my thoughts and prayers.
    Last edit by momcats3 on Apr 10, '04
  11. by   aimeee
    Quote from momcats3
    he told me, and I quote "I don't like the idea of Hospice - you people use too many drugs. I'll put her (my Mom) on Hospice but I won't authorize any pain medication"
    Unreal! So its okay to give them drugs for chemo but not to give them pain meds! Every one of his patients probably has poor pain control and gets no support with the dying process. I'll bet he has no social worker in his office either! :angryfire That is so sad that all those people have to suffer needlessly.

    Lori, if you have difficulty getting a referral for hospice from your grandmother's oncologist you can always have her go to another oncologist for a second opinion and get the referral from that physician. You might also check the hospice's web site and see if they have their Board of Directors listed. I would expect that any oncologists serving on their Board would be supportive to you.
  12. by   Loribabble
    Thanks guys. Momcats3, I am so sorry you had to go through all that and for your loss.

    - I totally agree with what you are saying... We have an appointment on the 27th (she's not going anywhere yet) and I am trying to gather all the info I can and present it to Grandma so we have a plan. We still have the PCP to work on if the oncologist refuses and the pulmonologist already has.

    Can you answer this... I realize that it partly depends on the hospice... but will they still tx her chronic condiitons of CHF, COPD, CHF - can she still see her docs for that - what if she has a mld exhasperation and needs to be admitted for a "tweaking"? And would they still be willing to tx a mld infection (ex UTI), or pneumonia, or bedsores? I realize if she is at the end stage of the cancer/SVCS or her chronic illness exhasperation is too much then, by all means it is time.... but if she is still pain free, cohearant, ambulatory etc I would think it would be better to tx so she would be the most comfortable.

    Her pulmonologist was refusing hospice saying that we loose all decision making capacity and mentioned that one of her pts on hospice wasn't allowed to go downstairs to eat - ????

    I really love the idea of hospice - and I recommend it to many people. I actually did a "cargivers" class and stressed its importance. If I didn't have so much on my plate with trying to move to Africa I think that I would at least be volunteering at a hospice, most likely work at one.

    Thanks again!

    Lori
  13. by   leslie :-D
    Quote from Loribabble
    Thanks guys. Momcats3, I am so sorry you had to go through all that and for your loss.

    - I totally agree with what you are saying... We have an appointment on the 27th (she's not going anywhere yet) and I am trying to gather all the info I can and present it to Grandma so we have a plan. We still have the PCP to work on if the oncologist refuses and the pulmonologist already has.

    Can you answer this... I realize that it partly depends on the hospice... but will they still tx her chronic condiitons of CHF, COPD, CHF - can she still see her docs for that - what if she has a mld exhasperation and needs to be admitted for a "tweaking"? And would they still be willing to tx a mld infection (ex UTI), or pneumonia, or bedsores? I realize if she is at the end stage of the cancer/SVCS or her chronic illness exhasperation is too much then, by all means it is time.... but if she is still pain free, cohearant, ambulatory etc I would think it would be better to tx so she would be the most comfortable.

    Her pulmonologist was refusing hospice saying that we loose all decision making capacity and mentioned that one of her pts on hospice wasn't allowed to go downstairs to eat - ????

    I really love the idea of hospice - and I recommend it to many people. I actually did a "cargivers" class and stressed its importance. If I didn't have so much on my plate with trying to move to Africa I think that I would at least be volunteering at a hospice, most likely work at one.

    Thanks again!

    Lori
    if her chf and the fluid overload is adding to her discomfort, then we would give lasix. if there's an infection, then yes, we would give abt's....now all of this would change when the end is much nearer, and the patient is much less responsive, unable to swallow, unaware of surroundings; that type of imminence. but since hospice can be around for sev'l months then yes, conditions that are treatable would (or should) be treated.
  14. by   Loribabble
    Thanks earle58. We are going to talk with main hospices in our area to see what their methods of operation/policies are. Thanks for the info.

    We have no problem with her going - but would hate to have her go earlier rather than later or being miserable if is was for something small and treatable. Of course this will all be her decision and when things progress, I totally agree that it is time for comfort care only.

    You guys are awesome - thanks for taking the time to share your knowledge!

    Lori

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