Input regarding Grandma with SVCS - thanks

leslie :-D · Apr 9, 2004

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.

Loribabble · Apr 9, 2004

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

aimeee, BSN, RN · Apr 9, 2004

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.

Loribabble · Apr 9, 2004

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

leslie :-D · Apr 9, 2004

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.

Loribabble · Apr 9, 2004

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....

leslie :-D · Apr 9, 2004

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.

momcats3 · Apr 10, 2004

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.

aimeee, BSN, RN · Apr 10, 2004

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"

:uhoh3: 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.

Loribabble · Apr 11, 2004

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

leslie :-D · Apr 11, 2004

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.